How to Stop Obsessive Skin Picking: 5 Things That Helped Me (And 5 That Didn’t)

I have a confession to make: I am an obsessive skin picker.

Obsessive skin picking, also called dermatillomania or skin picking disorder, is a disorder where you can’t stop picking your skin. It affects an estimated 1 in 20 people.

I didn’t always realize I had a problem. Picking was encouraged in my childhood home (close family members are also obsessive pickers), which did nothing to fuel my focus on my skin. I remember picking when I was a teenager to the point that I had noticeable scars on my arms, and a friend in high school once asked about them.

But I didn’t realize my skin picking was an issue until I was in a long-term relationship with my now-husband and tried to hide my picking from him, which led me to wonder how to stop obsessive skin picking.

I have struggled with skin picking for two decades. It has been worse at times and better at times, but it has always been a problem.

I won’t say that I am in recovery because I am and will always be a skin picker. But I will say that my picking has improved dramatically, and it has been almost two years since I have gone on a “picking binge” where I have obsessively picked at and ruined my skin to the point that I either refused to leave the house or had to cover up my arms (my target area for picking).

So what helped me? What didn’t? Here are five things that did and didn’t help me when it comes to how to stop obsessive skin picking.

1. Keeping My Nails Short

The longer my nails are, the more damage I can do to my skin. The more damage I do to my skin, the easier it is for me to quickly ruin my skin and feel angry, depressed, and hopeless, which fuels my unhealthy cycle of picking and abstinence.

I started keeping my fingernails trimmed really short, which helps prevent my fingernails from cutting into my skin when I pick. This way, when I do pick (and I want to be clear that I do still pick, just not obsessively), it doesn’t cause as much damage and I feel more at peace about picking without ruining my skin.

This is how short I like to keep my nails at pretty much all times.

I have spoken with another skin picker who says that she finds it helpful to have fake nails, which makes it impossible to pick her skin. I thought I’d mention this because the short fingernail trick may not work for every picker wondering how to stop obsessive skin picking.

2. Paying Attention

Mindfulness has been one of the most helpful things for me in stopping the obsessive-picking tirade that I would engage in almost daily.

I read many books, including all of Eckhart Tolle’s books, that talk about mindfulness and noticing how you feel and being present in your body. I started noticing things that were major clues on my journey to not picking obsessively.

First, I noticed that I was never present when I was picking. I was in a type of trance (I hear other pickers talk about this) where I am hyper-focused on my picking and nothing else matters. The second I become present, I am able to stop picking.

Secondly, I was almost always upset, stressed, or angry when I was picking. I started to realize that my emotions were directly linked to my picking the majority of the time. When I was picking, I was usually upset about something that I didn’t even consciously realize because I was using picking to distract myself from the feeling.

By paying attention to my body, my emotions, and my current state of mind, I am free to not pick. Even now, there are times when I will be stressed and zone out and start picking, but I can quickly reign myself in by realizing how I’m feeling, taking a deep breath, and coming back into the present moment.

I also noticed that I needed to be much more mindful of my picking in the summer because I wear a lot of tank tops (one of my major life goals is to look like Channing Tatum in Step Up), and since my arms are my area of choice for picking, I am much more likely to start picking in the summer than I am in the cooler seasons when I am wearing a hoodie.

3. Addressing My Core Issues

Like many people, I have a lot of unhealed mental and emotional wounds.

Mindfulness and many of my self-help readings made me realize that deep down, there was a wounded child inside me that never healed from her childhood trauma. By giving my inner child a voice—and more than that, making her a priority in my life—I was able to start healing.

How did I do this?

For one, I started working with a therapist. My therapist has been instrumental to my growth and helping me shine a loving and compassionate light on the dark, terrified parts of myself that never healed and were slowly rotting inside me and poisoning my life.

These parts were trying to protect me from what I had falsely learned would harm me—but those things are no longer true for me.

I realized that my childhood trauma formed the foundation for my social anxiety and my obsessive skin picking. It also fueled my feelings of unworthiness and shame.

By addressing my core issues, which is an ongoing process, with therapy, a lot of journaling, and reading self-help books, I started to believe that I was worthy of having beautiful skin without obsessively picking at it. In other words, I was worthy of healing and having the life I wanted, which didn’t include obsessively picking my skin.

4. Taking Care of My Body

I noticed that taking care of my body helped encourage me not to pick. For me, taking care of my body looks like:

  • Eating healthy
  • Exercising
  • Maintaining a skincare regimen

Working out helps me feel strong and confident. I like the way I look when I take care of my body, and it encourages me to maintain a healthy appearance I can be proud of by not picking. The same is true for eating healthy. I feel good and look good when I eat healthy and I am encouraged not to pick.

Honestly, having a skincare regimen has helped so much. I’ve gotten really into skincare the last few years and now use body lotion nightly (this is my all-time fave body lotion—not sponsored) and also skincare serums and creams on my face.

Taking care of my skin in this way makes me feel beautiful, worthy, and like I don’t need to pick my skin for it to look beautiful. It also gives me something else to do with my skin rather than pick!

5. Getting Tattoos

This might be a controversial one, but yes, it’s helped!

I originally didn’t plan on covering my body with tattoos, but that’s kind of where things are headed. Once I started getting more tattooed, I realized I could cover the picking scars on my arms with art.

First, I got my tiger, and I noticed that it helped hide both my picking scars and my current picking marks. It made me less ashamed of my picking habit, even when it wasn’t carried out obsessively.

I have a scar on my other arm of a broken capillary I tried to get rid of myself by burning it, which turned it into a bigger scar (when done properly, this method does make them go away, but I was a newbie at it). I covered that scar and a lot of my picking scars up with a second tattoo by the same artist.

My tattoos have made my skin feel more beautiful and help me feel better about my picking history and my current level of picking.

Thank you anka.tattoo for making my arms so beautiful.

5 Things That DIDN’T Help

These are things I tried that did not help me when I was looking for the answer to how to stop obsessive skin picking.

1. Guilting or Shaming Myself

Wow, did this one not work. I did this for YEARS. I would tell myself these kinds of things:

  • “You have that pool party this weekend, you CANNOT pick!” This made the picking worse, as I would try to “fix” my skin before the event, which would turn into…
  • “Your arms look terrible. Look what you did. Everyone is going to see how messed up you are.”
  • “You have to wear a long sleeve shirt because people will notice your arms.”
  • “You are so stupid. You can’t stop this one bad habit you have.”

For anyone who obsessively picks their skin, you know that it is not merely a habit. It is something you cannot control.

Guilting and shaming myself either before or after picking never made me feel better. In fact, it often had the opposite effect—I would feel worthless and continue to pick because I figured it didn’t matter how bad my skin looked when I was such a shitty person who couldn’t control their life.

2. Making My Skin Slippery

I tried this one too many times. I would use oils or lotions to make my skin slippery and impossible to pick. The oil or lotion WOULD make my skin impossible to pick. But here’s the thing—it didn’t get rid of the urge to pick.

Also, it was super inconvenient. The oil would stain my clothes, so I had to wipe it off before I got dressed. I spent some afternoons sitting in my house wearing a strapless dress with oil slathered all over my arms so I couldn’t pick. But eventually, it would have to come off. I couldn’t stay in my house wearing that strapless dress forever (although some days, I dreamed…)

So yeah, this was a waste of time.

3. Trying to “Manage” My Picking

I really thought this one would work.

I made rules for myself around my picking in an attempt to manage it. I thought that if I could exercise some control over my picking, I could get it to the point where it was manageable.

(For the record, I find my picking manageable now, but it’s not because I “control” it. It’s because I’m addressing the underlying factors that drive me to pick, like negative emotions and unhealed trauma. So instead of trying to control the urge to pick, I’m reducing it in the first place.)

The rules were:

  • No picking in the bathroom
  • No picking in the closet
  • No picking at night
  • No picking my arms

These were my two primary picking locations, my primary picking time, and my primary picking spot. So guess what happened?

  1. I found time to pick outside of these times and locations
  2. I started picking my legs, back, chest, and face
  3. I eventually ended up breaking the rules (because I wasn’t present or mindful of what I was doing) and would guilt and shame myself when I did so, which fed the cycle

My picking only became manageable when I stopped trying to control it and instead focused on healing myself from the inside out.

4. Trying to Stop Picking Completely

Oh man.

Ok, so I knew when I started looking for how to stop obsessive skin picking that it was impossible for me to stop picking completely. But I had seen people online say that they tried this. I remember watching one YouTube video of a girl who said she was X days into not picking and she had a pimple on her face.

I don’t care how strong of a person I am. I would never be able to not pop that pimple. I could not have arms and that pimple would still get popped.

I will always be a picker. I have accepted this about myself. And here’s the thing—I LIKE picking. I just don’t like obsessively doing it because it makes me feel terrible about myself and my skin looks like I got in a fight with a very aggressive rose bush.

Trying to stop picking completely is not realistic for me. I have tried it. It did not work. And I will always WANT to pick certain things at my skin. I am at peace with my picking nature.

5. Wearing Long-Sleeve Shirts

Yes, I pick less when my skin is covered. No, it does not stop my picking or the urge to pick. I will find other things to pick.

It’s true that I pick less in the winter when my arms are covered. But I still pick at my face. And for years, my nighttime routine was stripping down before getting in the tub and doing a full body pick, then soaking in Epsom salt and herbs to try and calm my red and wounded skin.

Wearing long-sleeve shirts was just another way I tried to manage my picking, which did not work.

Do I Still Pick?

Yes! I do still pick.

Do I still pick obsessively? No.

For me, there is a difference. For some people, there may not be. Everyone is different.

Are you a fellow picker? If so, I’d love to know if you’ve found anything that has helped or hurt you on your journey to having a healthier relationship with your skin and feeling good about yourself.

Thanks for reading and not judging!

What Is My Life Like Without a Uterus?

It’s pretty boss, if me lying on this vintage badass couch at an antique store is any evidence.

Those of you who know me in real life know that I have had really, really bad periods almost every month for the last 20 years (yeah you read that right, 20 freaking years).

These periods, which included heavy bleeding and immense pain, impacted my quality of life significantly. I essentially planned my life around my period. Nothing could be done on the first day of my period, and sometimes even the second day.

There were many occasions where I got trapped out somewhere—on the side of the road, behind a toilet at college, at work, you name it—where someone had to come rescue me, or I had to wait until the pain lessened enough that I could hobble to my car and drive myself home, throwing up and shaking the whole way.

Yeah. It was terrible. And I don’t even have endometriosis or fibroids.

I have wanted a hysterectomy since I found out they existed, but it wasn’t until I was 31 that I finally got one. I was looking forward to the procedure for a very long time, and now that I’m almost six months post-op, this is what life is like without a uterus.

Driving my dad’s nice new truck for the first time this summer

No More Planning and Rescheduling

Like I said, I had to plan my life around my period. There were many occasions when I had to cancel on someone because I had my period. Whether it was friends, work, or a tattoo appointment, nothing could happen when I was in such pain.

It got to the point where I had to anticipate my period and just not plan anything for the whole week when I expected it to show up. That was very frustrating and annoying—it was like my life couldn’t happen because of this goddamned thing that had plagued me for two decades.

Now, I don’t have to plan tattoo appointments, vet appointments, trips, work, or dates with friends around my period. And let me tell you, it has been NICE. I went to New York City and Virginia Beach this year without worrying about my period, and it was bliss.

The view from my hotel in NYC after getting inked by the amazing anka.tattoo this summer
At a Greek restaurant in Norfolk, VA with my friends

No More Worrying About Getting Preggers

My husband and I have done the fertility awareness method (FAM) for the last five years to prevent conception since we both don’t want children. I love the FAM and think it’s an excellent way to prevent pregnancy (or even get pregnant, if that’s what you want). But it was work.

I had to take my temperature every morning to see when I ovulated and stick my finger up my vag every day to check my cervical fluid and write everything down on a chart. Based on this information, I could tell when I ovulated and therefore know when it was safe to have sex and when it should be avoided at all costs.

It’s been really nice not having to take my temperature, check my fluid, or keep a chart on my nightstand for the last six months after five full years of doing that. There’s also no panicking after sex and thinking, shit, was that really safe?

Now, it’s impossible for me to get pregnant and I don’t need a chart, thermometer, or intimate knowledge of my cervical fluid to ensure I don’t have a baby.

At a cool river in Stafford, VA (don’t worry, I didn’t stack those rocks, I know that’s bad)

No More Pain

God, the pain.

The doctors could not figure out why I was in so much pain with my period. It typically only lasted for a few hours on the first day of my period, but they were an intense few hours, sometimes so bad that we had to call an ambulance.

I did not have endometriosis. I did not have fibroids. My uterus was unusually small. It appeared perfectly healthy when the surgeons cut me open and took it out.

After two decades of being in pain and trying many different remedies and working with different professionals, it appears that the cause of my intense period pain was Ehlers-Danlos Syndrome (EDS). People with EDS tend to have bad periods, including severe pain and heavy bleeding, for reasons modern science cannot figure out.

Needless to say, I’ve been enjoying not being in pain.

I have no pain. ZERO. I do not have cramps. I do not have bloating or bleeding (except for very occasional cyclic bleeding, which has been a complete joke). I am completely pain-free. It feels incredible and I wish I had gotten my uterus out a decade ago because I have spent way too much time being in pain.

Without pain, I am free to enjoy life.

No More Anxiety and Dysphoria

As you can probably imagine, I developed a lot of anxiety and dread around my period as a result of the intense pain, which caused me trauma I’m not sure I’ll ever be able to fully unpack.

On top of this, I discovered during the process of trying to get my hysterectomy that I do have gender dysphoria, so for the last year and a half with my period, I became increasingly aware of my dysphoria and my feelings around my period.

I don’t have anxiety around my period because there is no period. There is a part of me that thinks it may come back one day, but this is physically impossible. I’m just shocked that I get to live my life without a period and without pain, and that truth is still settling in.

My dysphoria has also improved dramatically now that I no longer have breasts or a uterus. I feel more at home in my body than I have ever felt, and this comfort and happiness have bled out into every area of my life, from my sex life to my daily existence (excuse the pun).

At Kickshaws Gluten-Free Bakery in Fredericksburg, VA with my husband

No More Bad Sex

I also don’t resent or hate my body anymore after my hysterectomy, as I did for basically my entire life. The freedom that comes with not hating my body and feeling that my body didn’t align with who I was has allowed me to experience things without so much mental and emotional baggage, including sex, which has been incredible.

Although I do miss period sex from time to time (any other blood lovers out there?), I absolutely do not miss skipping sex because of terrible cramps, depression, and anxiety about getting pregnant.

I also used sex to help manage my period pain, which was also traumatic in its own way, but it was one of the only things that helped at the end. So enjoying sex because I want to have it and not because I’m in pain has been nice too.

So overall, my life has been insanely better since I got my uterus removed. I wish I had done it sooner, although it was hard enough as it was to get my uterus removed in my 30s, so I’m imagining I would have had an even harder time in my 20s.

Have you had your uterus removed? How is your life now compared to before? I’d love to hear about your experience!

My Hysterectomy Healing Process: What It Was Like Healing From a Supracervical Hysterectomy

My supracervical hysterectomy healing process went really well overall. I was scared about the procedure, given that I was having an actual organ removed and not just my breasts (which felt very disposable and unnecessary).

Don’t get me wrong, my uterus felt disposable and unnecessary too—it was just that it was attached to a bunch of other stuff in my body, like my cervix, fallopian tubes, and maybe even my body itself. Ha. (But definitely not my soul.)

I felt way less scared about the surgery after getting my double mastectomy, as I felt like I knew what to expect, more or less. But here’s how it went and here are some herbs I used to help me heal.

Disclaimer: I’m not a medical professional and I am not recommending my specific healing protocol to anyone, nor am I suggesting that my hysterectomy healing process will be the same as yours. I am simply sharing my experience as someone who got a hysterectomy!

Preparing for Surgery

I didn’t do much to prepare for the surgery or the hysterectomy healing process outside of not taking my vitamins for about two weeks before. I made sure to wear loose and comfortable clothes to the hospital, and I ended up wearing my giant pink rainboots, as it was raining the day of my surgery.

As a lesson learned from my mastectomy, I made sure to drink plenty of water the day before the surgery and no salt the night before, as I wasn’t able to drink after midnight on the day of the surgery. For some reason, with this surgery, I was told I could drink up to 20 ounces of water until 8 a.m. on the day of the surgery, so I did that and I do feel that it helped me feel less dehydrated and sick after the procedure.

I also took my arnica homeopathic pellets, as I did with my mastectomy. I took five of them before the surgery and five after, then three to five pellets two times a day for about five days after the procedure, at the direction of my herbalist.

The Day of the Surgery

Before the surgery, I spoke with the nurses and anesthesiologists and surgeons who would be there during the procedure.

Why there were so many people, I don’t know. There were a few nurses, three anesthesiologists, and three surgeons. Some of these people were in training and there to observe the procedure.

I didn’t really like that all these people were there, but I wasn’t going to object. I mean, these professionals have to learn somehow, right?

When I spoke with the anesthesiologist, I told him about my terrible experience with the anesthesia during my mastectomy. I was very anxious when I woke up from the procedure and nauseous and dizzy for three days following that surgery. He said they would give me Valium prior to the procedure to ensure I wasn’t anxious when I woke up and other medications in my IV to help with the dizziness (medications such as Valium can help manage post-operative anxiety).

When the time came for my surgery, one of the anesthesiologists came in to give me Valium in my IV. I’m not sure if it was because it was given to me in an IV or because I hadn’t had anything to eat or drink for hours, but that stuff hit me like a brick in the face. Seconds later, I was having trouble keeping my eyes open as they wheeled me toward the operating room.

I remember getting into the operating room and someone asking me to get from my current bed onto the operating table. I was having trouble doing this because of my IV and also the Valium. Getting on that table is the last thing I remember.

After the Surgery

The next thing I remember is the anesthesiologist who gave me the Valium shaking my feet and yelling my name. But this is a brief memory.

When I wake up again, I am lying in what appears to be the same bed in the same room that I was in before I was taken to the operating room. The first thing I say is, “It hurts.” My abdomen was really hurting. It felt like menstrual cramps, but different, more sore. It felt like I had had an organ removed.

A nurse came to give me pain medication. I dosed in and out of sleep. I wasn’t anxious. It simply felt like I was waking up from a long and intense sleep (which was a completely different and much nicer experience than waking up from my mastectomy). My surgery was about three hours long.

As I woke up more, I remember asking the nurses if the surgeon was able to keep my cervix and ovaries (I was told right before the surgery there was a chance they would have to be removed if there was endometriosis on them). They said that they were kept and everything was fine.

But I didn’t really believe it until I saw a text from my husband saying he spoke to the surgeon and that my cervix and ovaries were left intact. It felt like a miracle—the surgery went exactly as I wanted it to.

I had to go to the bathroom. The nurse—her name was Ashley—helped me to the bathroom to pee a few times. I was exhausted and wanted to lie in bed and sleep. The hospital was trying to discharge me even though I could barely walk. Eventually, after deciding I would not go home that night, I was transferred to a different floor, where I had my own room and bathroom. At this point, it was pretty late at night.

I cried as the nurses got me in bed and wrapped these weird devices around my legs to prevent blood clots or something. It was all just a lot to process. My husband came to visit me earlier in the evening but had just left to go home and take care of our animals. He would return the next day to take me home.

Here Come the Bladder Issues

I didn’t realize it, but I had developed urinary retention after the surgery, which means I was not able to completely empty my bladder when peeing. I kept getting up in the night to pee a lot (by myself most times, as calling the nurses was a hassle), but each time I felt a kind of burning sensation, like I had a lot more to pee but nothing was coming out.

I told the nurses about it, but it wasn’t until the afternoon of the next day that they did a bladder scan and found that, despite the fact that I had been urinating a normal amount, there were over 900 milliliters of urine still in my bladder.

One of the nurses did a straight catheter on me, which was not horrific but very uncomfortable, to drain the urine, hoping that would help my bladder come back online. It didn’t. A couple hours later, despite peeing, there were 500 milliliters in my bladder still.

That was when they decided that they would have to do an indwelling catheter.

If you’ve never had a catheter before, I can’t explain to you how awful they are. Basically, someone shoves a tube up your urethra to drain urine. The straight catheter was not that bad, but the indwelling one was terrible. A different nurse did it and I think at that point my urethra was pretty irritated, so it hurt and I cried. The nurse, who disclosed that she had never had a catheter before, asked me why I was crying.

The tube for the catheter continued to twitch inside me, which caused me pain. It was really awful. I cried a lot and started hyperventilating when the nurses came back to try and fix the catheter and stop the twitching, which meant they had to partially remove it and reinsert it. At that point, my husband was there, but unfortunately, no one could comfort me much.

Despite the fact that I was not in any way comfortable with the catheter or managing it, the hospital discharged me. I spoke to my surgeon and he said I could stay, but that insurance might not cover it because having a catheter isn’t a good enough reason to stay.

That was enough to get me out of there. I worked really hard to get insurance to cover the procedure; I wasn’t getting charged unnecessarily just because of this stupid catheter.

My surgery was on a Thursday. I had the catheter put in on a Friday. It was supposed to stay in for five days until my post-op appointment on Wednesday. There was no way that was happening.

I got through Saturday with the catheter (probably only because of the pain meds though), and then on Sunday night, I took it out. It had become so painful that all I could do was lay on the couch and cry; I couldn’t even move. I spoke to my surgeon and the doctor on call before I removed it and they said it was fine.

Fortunately, my bladder issues had resolved by then and I was able to completely empty my bladder. But if they didn’t, I would have had to go to the emergency room to get another catheter put in, which I was definitely not trying to do.

The catheter was by far the worst part of the procedure, as both my husband and I will tell you. And it wasn’t even because walking around with a giant bag of pee on your leg is disgusting and emptying it was gross—it was because of how uncomfortable it was and how I shrieked every time I stood up because of how much it was twitching inside me. Ugh!

Apparently, urinary retention is not uncommon during the hysterectomy healing process. During the surgery, they put a catheter in to drain the bladder, and my surgeon said this can really throw off the bladder. I wish I didn’t have to have a catheter inserted during the surgery, but for reasons I don’t really understand, this is just what they do. I do wish that they had just left the catheter in since I had to have one put back in anyway while I was awake.

The Hysterectomy Healing Process

My hysterectomy healing process was relatively simple. My abdomen hurt pretty bad after the surgery, particularly around my belly button, which is where the biggest incision was. I took all the meds they gave me because I was really uncomfortable (especially with the catheter) and the meds helped.

Getting up without help was impossible because I couldn’t really “bend” my abdomen properly to sit up or stand up because it hurt so much. I was able to walk around pretty well once I was up, but sitting and standing were bad. I also had a binder that I wore after the surgery, similar to the one I had during my mastectomy, which helped me feel a little better and move around a little easier.

It just took time to feel better. After a couple weeks, I was feeling pretty good and the pain in my stomach was virtually gone. At my post-op appointment a few days after the surgery, a doctor confirmed that my bladder was functioning normally.

When I saw my primary surgeon three weeks post-op, he said everything looked great and I didn’t need to come back. That was good because I didn’t really want to see someone who did a gynecological exam on me while I was unconscious that I didn’t find out about until after the surgery when reading my case notes.

What Herbs and Supplements Did I Take?

I did a few things to help accelerate my hysterectomy healing process.

  • In addition to my arnica tablets, I drank the same herbal broth that I drank after my mastectomy, which included reishi, burdock, comfrey, and a bunch of other healing plants (you can see the recipe here). I took arnica tablets for about five days after the surgery.
  • For my bladder issues, I started drinking a dandelion infusion at the direction of my herbalist almost immediately after getting home, which I made with both fresh dandelion from my yard and dried dandelion from Mountain Rose Herbs. It was disgusting, but I do feel that it helped my bladder come back online after the surgery. I did this for maybe one week after my surgery.
  • I also drank an infusion at the direction of my herbalist to support my healing. I made a quart of this every night and drank it the next day. It was equal parts oat straw, raspberry leaf, nettle leaf, and alfalfa leaf. I didn’t mind the taste of this. I did this for about two months after my surgery. My herbalist also suggested I add yarrow and some additional nettle to support my bladder for healing, so I did this for about the first month.
  • I took two different tinctures to support my healing at the direction of my herbalist. The first was a yarrow tincture, which I started three days after the procedure and took for a month post-surgery. The second was a Solomon’s seal tincture, which I took for two months after the surgery. I made both of these myself.
  • My herbalist also suggested that I apply a topical ointment of Solomon’s seal to my abdomen/hip area, but although I made the ointment, I didn’t end up using it. It just felt like too much on top of everything I was already doing, and the thought of lying around with oil slathered all over my body didn’t exactly thrill me when I was already uncomfortable.

I also used a heating pad to help with the discomfort of my stomach in the first week during my hysterectomy healing, which my herbalist also suggested and I found to be very helpful (that heating pad has helped me a lot with menstrual cramps too).

Returning to Sex After Hysterectomy Healing

Returning to sex was a little weird after my hysterectomy healing just because I still felt like my body was fragile. We definitely did not do any actual intercourse until at least six weeks post-op just to be safe at the direction of my surgeon.

My cervix felt like it was “hiding” (not sure how else to describe this) for a couple months after the procedure and we didn’t go crazy with sex because I felt it was still healing. It just felt different for about two months after the procedure.

Now, things are great and I have to say, it is pretty amazing to not have a period and not have to worry about getting pregnant. I’ll be posting an article soon about my life now without a uterus (hint: it’s awesome).

Although the catheter was terrible and the surgery was not fun, I overall feel like things went really well and I am really happy with how I healed and how I’m doing now, and I am very happy with my decision to leave my cervix in.

If you’ve had your uterus removed, I’d love to hear what helped you get through your hysterectomy healing process!

Why Leave the Cervix? Why I Left My Cervix in During My Hysterectomy

Disclaimer: This article discusses surgery, sex, and controversial personal opinions. Please use your discretion when reading. I am not a medical professional and I am not giving medical advice. I am merely explaining why I chose to leave my cervix during my hysterectomy.

Four months ago, I got a laparoscopic supracervical hysterectomy after spending 15 months convincing medical professionals that I needed this procedure (and hell yeah I threw myself a party after all that work, as evidenced by the picture above).

In case you don’t know, a laparoscopic hysterectomy is when they use robotic instruments to remove the uterus through tiny cuts in your abdomen and belly button instead of doing a longer incision down your middle. It’s less recovery time, results in significantly smaller scars, and is generally less painful for the patient.

A supracervical hysterectomy is when the cervix is left intact while the uterus is taken out. This is not commonly done in a hysterectomy, although it was a more popular procedure in the 90s when it was first being performed.

Many women and people with vaginas aren’t super familiar with their cervix. I became intimately familiar with mine after doing the fertility awareness method (FAM) for five years before my procedure.

The cervix is technically connected to the uterus—it’s all one organ—and it connects the uterus to the vagina. You can usually feel your cervix by sticking your finger up your vag and feeling for something that feels firm and squishy, like the tip of your nose.

Removing the cervix is generally done because of fear of cervical cancer. The majority of medical professionals will argue that there is no good reason to leave the cervix in during a hysterectomy. I spoke with three surgeons during my 15-month process and two of them tried to talk me out of leaving my cervix in.

So why would I choose to leave the cervix in during my hysterectomy?

Research shows that leaving the cervix in is less traumatic (it cut my recovery time in half): you recover faster, can return to sex sooner, and have minimal blood loss during the surgery. But all of this is not why I chose to keep my cervix.

Here’s why I left my cervix in during my hysterectomy.

The Cervix Impacts Sexual Pleasure

So this is a controversial statement, but I believe the cervix does impact sexual pleasure.

Doctors will tell you it doesn’t.

Other people will tell you it doesn’t.

Research will tell you it doesn’t.

The thing is, you have to decide for yourself if it does.

For me, and we’re just gonna be really blunt here, it feels good when my cervix is stimulated by my partner’s penis. I can’t imagine what it would feel like if my cervix wasn’t there, but I have a feeling it wouldn’t be great. The cervix doesn’t have a ton of nerve endings in it, but it does feel like more of a pressure when stimulated, which can be pleasurable for some people.

The cervix is essentially the “end” of your vagina. When the cervix is removed during surgery, the surgeon has to reconstruct the top of your vagina. There won’t be anything there but scar tissue—and nothing for a penis (or sex toy) to bump up against.

For lack of a better way to describe it, the cervix drops down into your vagina, so removing the cervix essentially “lengthens” your vagina. And, depending on the size of your partner, it may or may not feel the same when you have sex. (The cervix can also be stimulated during masturbation too!)

Not to mention there is such a thing as cervical orgasms.

Two Words: Cervical Mucus

So this goes along with the sex thing, and it’s really important to discuss.

The cervix is responsible for producing cervical mucus. If you are familiar with your cycle, you may notice that you are much more wet during ovulation (which can happen between days 12-22 of your cycle) than you are right before or right after you get your period. This wetness is your body preparing to receive sperm for pregnancy. Your body is making it as easy as possible for sperm to get where they need to go.

In other words, this is a really bad time to have intercourse if you don’t want to have a baby.

If the cervix isn’t there, guess what? There’s no cervical mucus.

Yes, the vagina has natural moisture in it. But it’s nowhere near the wetness produced throughout the fertility cycle.

My thought process was this: what was the point of not being able to get pregnant if I couldn’t have sex with my body producing that amazing fluid? Why would I want to get rid of that?

For the past five years, my husband and I have been meticulously avoiding intercourse when I am fertile, as we’ve chosen not to have children. So I was about ready to start enjoying my natural fluid during intercourse again.

Secretion of cervical mucus, in my opinion, can enhance sex.

Research shows that the cervix is also responsible for the secretion of mucus during arousal, not just during ovulation, and at various points throughout intercourse, including when the penis (or toy) bumps against the cervix. However, despite our knowledge of this, researchers still can’t definitively conclude that the cervix plays a role in sexual satisfaction.

But I made that decision for myself, and it was the main reason I chose to leave my cervix in during my hysterectomy.

It’s Less Trauma Internally

We’ve already touched on this briefly, but leaving the cervix in during hysterectomy results in a much faster recovery time. And you can return to sex sooner, so, bonus.

Leaving my cervix in cut my hysterectomy recovery time by half, from eight weeks to four weeks. I was able to resume intercourse at six weeks (my primary surgeon suggested we wait an additional two weeks just to be safe, although my other surgeon said four weeks).

The surgery time is also shorter when leaving the cervix in during hysterectomy, and it generally lowers your risk of complications.

Your cervix also has a bunch of connective tissue attached to it, which keeps it anchored at the top of your vagina. When the cervix is removed, this tissue has to come with it. It’s not proven, but suggested that leaving the cervix—and, as a result, the attached ligaments—may result in better pelvic organ function and patient sexuality post-surgery.

However, again, contemporary research says there is no evidence to support leaving the cervix during hysterectomy over taking it out.

Eliminates Risk for Vaginal Cuff Dehiscence

Have you heard about vaginal cuff dehiscence?

Don’t worry, I hadn’t either—until the third surgeon I spoke to mentioned it.

(In case anyone is wondering why I spoke to different surgeons, there are a couple reasons. First, I didn’t trust the first surgeon I spoke to. She told me that she would not consider leaving my cervix in during my hysterectomy. Second, the next surgeon I spoke to—the one I ultimately chose to do my procedure—wanted an additional surgeon there to assist with severing my uterus from my cervix to ensure the procedure went well, so I had to meet with this person too.)

This last surgeon was the only one who told me that if I wanted to leave my cervix in, it was fine. Even my primary surgeon suggested removing the cervix, but I was adamant about keeping it. This third surgeon mentioned that leaving my cervix in during the hysterectomy would eliminate the risk of vaginal cuff dehiscence.

Huh?

I looked it up. Vaginal cuff dehiscence is similar to vaginal prolapse, but worse. Instead of all your female organs sagging or falling out of your vagina, in vaginal cuff dehiscence, all of the organs in your abdomen are at risk of falling out. Vaginal cuff dehiscence is life-threatening.

It’s true. It’s a thing. And if you have your cervix removed, you are at risk for this, even though the risk is low.

So, yeah.

Also, I talked to my primary surgeon about having a higher risk of prolapse after my hysterectomy. He said I’m not at higher risk and, turns out, research shows he’s right—there’s not a much higher risk of prolapse between getting a supracervical hysterectomy and a total hysterectomy (where the cervix is removed).

If you don’t know what prolapse is, please Google it and learn how you can prevent it, because I personally know three women who have had this happen to them and your risk increases if you’ve had kids.

A Word on the Dreaded “Cyclic Bleeding”

One of the reasons my surgeon wanted me to get my cervix removed was because of what medical professionals call cyclic bleeding.

Cyclic bleeding is bleeding that still occurs during your period even when you don’t have a uterus but still have your ovaries (your ovaries control your fertility cycle via hormone production, so if you keep your ovaries during a hysterectomy, you will still ovulate and go through the cycle, even though you won’t have a period).

So how on earth can you still bleed if you don’t have a uterus?

When you have the cervix removed during hysterectomy (also called a total hysterectomy), the surgeon will essentially detach your uterus and cervix from your body and pull them out through your vagina. With a total hysterectomy, there is no risk for cyclic bleeding.

However, when you leave your cervix in during hysterectomy, things get a bit more complicated.

Since your cervix is attached to your uterus, your surgeon has to find a point to separate the two to leave the cervix intact. Although they do their best to separate the two, some endometrial cells (the cells that line your uterus and are responsible for monthly bleeding) can be left over after the surgery. This is what can cause cyclic bleeding after hysterectomy.

This didn’t sound good to me. After all, I wanted to stop my bleeding, not have it continue.

But then I looked at the research.

The risk for cyclic bleeding after a supracervical hysterectomy is pretty low. My surgeon told me the risk was about 15%, but some others I have talked to said 10% or less. And, cyclic bleeding only occurs for up to two years after the procedure.

In addition to the risk being low, the third surgeon I spoke to told me what cyclic bleeding actually was—it’s not a period or even close. It’s when you go to pee, wipe yourself, and see a teeny bit of blood on the toilet paper. That’s cyclic bleeding.

So has it happened to me?

Yes. And it was exactly what the surgeon said—just a tiny bit of blood, so small and so light that I wouldn’t see it if I wasn’t looking for it. It’s not even enough to get on my undies, so it’s not even really “spotting”, as people who mensurate know the term.

I have had cyclic bleeding twice out of my four cycles since my surgery, not counting the on-off spotting I had immediately after the surgery for about three weeks (which is expected and very normal).

I have not had ANY cramps at all since my hysterectomy, even with the cyclic bleeding. In my personal experience, this teeny bit of blood is a very small price to pay for being able to keep my cervix and have no change to my sex life.

Why I Got My Fallopian Tubes Removed

So while I left my cervix during my hysterectomy, I got my fallopian tubes removed. I originally didn’t plan on this, but my primary surgeon suggested it.

He said there is research that suggests that uterine cancer can start in the fallopian tubes, so by removing them, I could potentially help lower my risk of uterine cancer (even though I would no longer have a uterus).

This sounded good to me. Plus, I didn’t need my fallopian tubes. I researched it and got a little worried that severing the fallopian tubes from my ovaries would result in reduced blood flow to the ovaries, which I thought could impact hormone production. However, my surgeon said there was no evidence of this and I haven’t found research to suggest this either.

I also learned, after my hysterectomy, that getting the fallopian tubes removed eliminates the risk of ectopic pregnancy (where the fetus begins to develop in the fallopian tube—ectopic pregnancies are not viable and are life-threatening).

Although ectopic pregnancy after a hysterectomy is rare, it can and does happen. People who have their uterus removed but keep their fallopian tubes still have a small risk for ectopic pregnancy.

There’s really no reason to keep your fallopian tubes if you are having a hysterectomy. If you are pursuing a hysterectomy for any reason, I would highly recommend talking to your surgeon about removing your fallopian tubes to potentially reduce your risk of uterine cancer and eliminate risk of a future ectopic pregnancy.

When Leaving the Cervix Is Not an Option

Unfortunately, leaving the cervix during hysterectomy will not be an option for everyone.

There are two main reasons why someone would need to get their cervix removed:

  • You’ve had a recent abnormal Pap smear or are at high risk for cervical cancer
  • You have endometriosis on your cervix

Your surgeon will require your most recent Pap results before even considering leaving your cervix during a hysterectomy. If you have endometrial implants on your cervix or are at high risk for cervical cancer, it’s unlikely you will find a surgeon who will consider leaving the cervix during a hysterectomy.

And, in these cases, it will likely be much more beneficial for you to have it removed anyway (because you don’t still want cramping and bleeding after a hysterectomy, and you definitely don’t want to have a second surgery to remove your cervix if you have cervical cancer).

Are There Cons to Leaving the Cervix During Hysterectomy?

Yes, of course! Just like there are pros and cons to everything.

The first is that you will still need to have regular Pap smears to screen for cervical cancer. If you have your cervix removed, you will not need to have Pap smears.

The second is that there is a risk that you will develop cervical cancer and need to have your cervix removed during a second surgery. This is not ideal and surgeons like to avoid this, which is part of the reason why they want to get rid of your cervix in the first place.

The third con is one we’ve already discussed—the cyclic bleeding.

That’s All, Folks

I will be posting articles soon about my healing process for my supracervical hysterectomy and about what my life is like without a uterus. So far, it’s been totally blissful and I am loving life. If you have any questions about my procedure or more questions about cervix stuff, please feel free to reach out to me or leave a comment below and I will get back to you ASAP!

I Got a Hysterectomy: Saying Goodbye to an Organ I’ve Always Hated (Also Maybe I Have Gender Dysphoria???)

I originally imagined this post as being a kind of open letter to my uterus where I go “Dear Uterus” and talk to my uterus like it was a former lover or something.

The more I thought about it, the more wrong it seemed. I hate my uterus with the kind of passion I usually reserve for people who hurt animals. It has never felt right in my body. And, although I do love drinking tasty warm blood every month, I really, really, REALLY hate having a period and I fucking hate my uterus.

I have had intensely painful periods for most months of the last 20 years I have been having a period. I was resolved to spend the rest of my life with my uterus until November 2020. I felt depressed about it, but hey, I didn’t want to get surgery. Then I got my double mastectomy and didn’t feel so scared about surgery.

I had one of the most painful periods I have ever had in November 2020, just before my double mastectomy. It was so bad that my husband had to call 911 (that’s not the first time that’s happened). And that’s when I said: I’m DONE. I’m SO fucking done.

I’m done with being in pain.

I’m done with having an organ I hate.

I’m done with being a woman, whatever the fuck that means.

I’m done with living a life that doesn’t feel like mine.

And so, after having never been to an OB/GYN at the age of 30, I started making some phone calls the next month. Everyone was booked out because of COVID, so I couldn’t get an appointment until March of 2021.

That First OB/GYN Appointment

My plan was that the doctor would find something horribly wrong with my uterus and I would be able to get surgery to remove it.

But when my appointment came, the doctor only pushed for birth control and other pharmaceuticals to stop my pain and even prevent me from having a period. I’m very against pharmaceuticals, including birth control, for a variety of reasons, so this wasn’t an option for me.

I pushed her to give me a referral for an ultrasound to help determine if I had fibroids, which could be causing my intense period pain. Although she begrudgingly wrote me the referral, she said, “I don’t think you have fibroids.”

OK WELL LET’S CHECK SHALL WE DOC?

To my dismay, I did not have fibroids. The doctor said she didn’t know if I had endometriosis, and that even if I did, I wouldn’t just magically get my uterus removed. I would have to try birth control, then try an IUD, and then get the lining of my uterus burned before surgery would be considered.

Even then, the doctor said that if they opened me up during surgery and didn’t find endometriosis, they would have to leave my uterus in, otherwise it would be considered “doing harm”. To which I wanted to say, “Your job and this appointment are literally doing harm”. But I didn’t. I just left.

I spoke with another doctor who basically said the same thing. So I was done with this route of “treatment”. It felt like I went to them begging for help and they refused to help me unless I consented to drugs and hormones.

And that’s when I realized: I’ve already had top surgery. I can try to pursue this surgery by saying that my uterus removal is about my gender.

Calling All the Therapists

I felt like I was finding my way in a dark room throughout this process and turning on lights one by one. I didn’t know where to turn, but what I did know was that I would need letters to support the medical “need” for my surgery from therapists who knew something about gender.

I reached out to probably a dozen therapists. I was candid with the ones I did talk to: I was in pain and wasn’t willing to accept the treatment the doctors were offering me. I technically qualified as non-binary—would they be willing to assess me for gender dysphoria so I could get a hysterectomy?

A few of the therapists didn’t get back to me. A couple people I spoke with said they would help me. I eventually started seeing one of them, but didn’t feel that we were a good fit. But they did refer me to Chase Brexton, an agency known for working with transgender and non-binary individuals.

Getting the Two Letters

So I became a patient at Chase Brexton and began the process of getting my letters there. It took about six months for me to talk to four different people there and to get my letters. It was a whole process, and at the end of it, I learned something about myself.

Although I do consider myself to be more agender than anything—and I didn’t (and still don’t) feel that my breast surgery was about my gender, nor would my uterus surgery be—I did have gender dysphoria.

I didn’t lie to the therapists I spoke to. Everything I told them was the truth. It just also happened that I wanted my uterus removed because I couldn’t stop my intense period pain.

For those who are wondering why I’m in so much pain every month, just know that your girl has spent the last 20 years trying to figure out exactly that, trying many different remedies and lifestyle changes, all to figure out that I probably have terrible periods because of Ehlers-Danlos syndrome (EDS). People with EDS tend to experience terrible periods with heavy bleeding for no reason that modern medicine can figure out.

Although working with my herbalist has helped improved my pain immensely, it was not enough to make me feel like I could live another 25 years with a period, not to mention the depression I would get every month as a result of dysphoria. If I’m honest with myself, just HAVING a uterus makes me dysphoric and unhappy.

Anyway! While I was getting my letters from Chase Brexton, I interviewed another OB/GYN doctor for my surgery and felt confident pursuing the procedure with him. I submitted my letters to his office and he confirmed that he received them and would be in touch once he had more information from the insurance company.

Getting ANOTHER Letter

I waited six weeks and didn’t hear anything. When I followed up with him, I got a call from his office from two providers (one a nurse and one a social worker). They said they got preliminary approval for the surgery from the insurance company, which meant I could schedule the surgery. However, they were concerned with getting the final approval, which would happen 30 days before the surgery.

The reason for their concern was that my insurance company requires 12 months of hormone therapy in the form of testosterone prior to getting this particular gender-affirming surgery. Since I am not a male and don’t want to transition to being a male, this therapy does not make sense for me and is medically unnecessary.

The providers from my surgeon’s office shared that having another letter—in addition to the two I’d already gotten—might help the insurance company agree to cover the procedure for the final approval. This letter would be from a medical doctor instead of a therapist stating that I did not need testosterone and it would even be harmful for me to have to do this prior to my procedure. So I contacted my primary care doctor with Chase Brexton.

She immediately agreed to help me and I got the letter from her within a week after our appointment. I submitted the letter to my surgeon’s office and waited to hear back regarding scheduling.

So now I had three letters from three different professionals stating that I had gender dysphoria. At this point, it was nearing the end of December 2021, over a year after I started this process.

Seeing ANOTHER Surgeon

After my surgeon had THREE letters certifying my gender dysphoria and the unnecessariness of testosterone, he asked me if I was still planning on leaving my cervix in.

Um, yes?

He said that since I was leaving my cervix in, which is not commonly done during a laparoscopic hysterectomy, he wanted me to meet with another surgeon who was a minimally invasive specialist, as he wanted her there during the procedure.

I called to book an appointment with this additional surgeon and she was booked out for almost two months. So I had to wait another two months to talk to this person in mid-February 2022.

At this point, I was beyond frustrated with this entire process. My surgeon knew in August 2021 that I intended to leave my cervix in. Why did he wait until December to ask me to meet with another surgeon about my cervix?

So while I thought I would be waiting to hear about scheduling, now I was just waiting to talk to this minimally invasive specialist surgeon for weeks on end, which was incredibly frustrating. Meanwhile, I was becoming increasingly aware of my dysphoria every time I had my period, and I would be massively depressed even if I wasn’t in much pain.

I finally did talk to her and I really liked her. The appointment also put me at ease because, unlike the other two surgeons I had spoken to, she told me that if I wanted to leave my cervix in, it was completely fine. I was at low risk for cervical cancer, and as long as they didn’t find endometriosis all over my cervix when they opened me up, I could leave it in without problems.

I was very aware of the risks and benefits of leaving my cervix in, and we reviewed them during my appointment. I did learn, however, that keeping my cervix in would be less trauma to my body than taking it out. It also would cut my recovery time in half and it even eliminated the risk for vaginal cuff dehiscence, (if you don’t know what this is, have fun looking it up).

At the end of the appointment, she shared she would get back in touch with my original surgeon, as they would be doing the procedure together. I told her I would follow up with him too about the next steps.

FINALLY, A SURGERY DATE!

Another two weeks went by before I got a call from the hospital to schedule my surgery—the surgery date was April 7, 2022. I was beyond excited and spent the next few days skipping around and talking to anyone who would listen about my surgery (it was just my husband, haha).

It took 15 months from the time I booked that first OB/GYN appointment to get an official surgery date. I’m not sure how much of this was related to doctors being booked out because of COVID, but I do know that I worked my hardest to make this surgery happen as soon as possible.

This article can’t possibly capture the pain, depression, and dread I have experienced throughout 20 years of having a period and then going through a process to try and get help and having to wait almost a year and a half before I could get the problem taken care of. But I’m sharing my experience for others who might be on this journey.

As I’m posting this article I no longer have a uterus and am recovering from my supracervical laparoscopic hysterectomy, which was finally approved by the insurance company and I successfully had my procedure.

The doctors did not find any endometrosis and my uterus was unusually small: 40 grams compared to the normal 60. So at this point I’m assuming my intense pain and heavy bleeding were all EDS-related.

I will be posting an article about my decision to leave my cervix in as well as my healing protocol for this procedure. Kisses!

Special thanks to Lin Amendt for helping me along this journey and for helping me make the pivotal decision to leave my cervix in. And of course to my amazing husband Ian for his unconditional love and support throughout this process and always (and for taking these badass pics).

What Is My Life Like Without Boobs?

Two words: freaking awesome.

It’s been over nine months since I had my double mastectomy and my life has changed in some subtle but also significant ways. My life without boobs is everything I’d dreamed it would be, but there were also some surprises along the way, as I imagined there would be when getting this major surgery.

So what is my life like without boobs? How have things changed? Is anything the same?

I’m More Confident

I actually feel like my body represents me now, at least much more than it did. I’m so much more confident in my appearance. Before, I would wear big flowy tops and dresses to hide my chest because I hated it so much. This summer, I actually bought my first form-fitting clothes in years.

I love wearing tight tops to show off my chest, and it feels so good to just be out there in the world without my boobs. My breasts always felt like a hindrance. There was never a time when they didn’t feel like a hindrance. Without them, I feel sexy, confident, and bold.

I’m still learning to be confident without a shirt on. This summer, I went for a run when it was hot outside, and after three miles into the run, I really just wanted to take my shirt off.

But something stopped me. I was worried about people seeing me and what they would think. Then I thought, “The whole point of you getting this surgery was so that you’d feel more like yourself and more confident—who cares what they see or say or think?”

So the shirt came off. About five minutes later, I ran into one of my aunts, who lives on the road I was running on. She didn’t know about my surgery and I self-consciously threw my tank top over one of my shoulders, which almost covered one of my scars. But the other one was still visible.

We chatted for a couple minutes and she didn’t say anything about the fact that I was topless and no longer had boobs. So it went ok. But, being one of my nicest and kindest aunts, even if she did say something, I doubt it would have been anything that made me feel bad.

Mostly I think it just feels weird to be walking (and running, ha) around completely topless after having breasts for nearly 20 years. I hope by next summer I won’t think twice about taking my shirt off!

I Can Actually Breathe When I Run

Speaking of running.

I’ve been a runner for the last 13 years and wore really tight sports bras to keep my chest from moving when I ran. Like, my breasts were DD’s and I would buy A-cup sports bras and wear them.

Yeah. Don’t ask me how I got those bras on.

It also affected my ability to take a deep breath when running. Over the last decade, I’ve probably run thousands of miles in tight-ass sports bras. I didn’t realize how much I couldn’t breathe until I ran without a bra on. WOW!

It’s incredible to be out there feel unhindered by my body and just moving comfortably and confidently in the world. I feel so much less weighed down by my boobs when exercising, not to mention I love the way my chest looks after doing upper-body workouts 🙂

I’m Insanely More Comfortable

Fuck bras. I can’t believe I lived wearing a bra for so long. I LOVE not having to worry about bras or how my breasts look in clothing. It’s like not having hair and not having to decide what to do with it. Freaking awesome.

It’s so comfortable to just put on whatever I want and leave the house feeling confident because there aren’t any boobs, there’s no bra, and it just my chest meets the world. I knew I’d be more comfortable without my breasts (mentally and physically), I just didn’t know how much more comfortable. The answer is INSANELY. I’m insanely more comfortable!

Sex Is Different

So I expected my sex life to be a little different after getting my breasts removed, and I’m still navigating this department of my post-boob life. Not having anything there to touch is just a little weird after having boobs for the last two decades.

That being said, I 100% feel like my sex life has improved since the boobs are gone. How could it not? I feel more comfortable, more confident, and unhindered. How’s that for sexy?

I occasionally ask my husband if he misses my boobs and he says “a little”, which is weird because sometimes I miss them a little too. For the most part, our sex life has been frickin hot since I got rid of those obscene lumps on my chest.

People Stare at My Chest

So this doesn’t happen all the time, but I have definitely been out several times and have full-on caught people staring at my chest when I’m wearing a tight shirt.

Instead of feeling self-conscious, I think it’s hilarious. In my head, I think, “You can look all you want, there’s nothing there!” and then I prance away giggling to myself. It doesn’t make me self-conscious at all. In fact, I feel like it makes me more confident since it’s a feature about myself that I love now.

I didn’t get nipple grafts with my mastectomy, so my chest is just two lines of scar tissue where my boobs used to be (and some gross spots where I got two moles removed that are still healing!). So I can imagine people staring at my chest in a skin-tight shirt and not seeing any nipples or anything and wondering what is going on. Tee hee.

I Can’t Wear Tube Tops Anymore

This might sound dumb, but I didn’t realize that I wouldn’t be able to wear tube tops after my mastectomy. I truly didn’t realize that my breasts were what was holding up tube tops that whole time. Wow.

So when I got my mastectomy and healed up and summer came and I tried to wear some of my favorite dresses and tube tops, I couldn’t. I had to get rid of one of my favorite dresses that I got for free at Charlotte Russe like 15 years ago because it literally fell off of me.

I did buy a tube top that actually stays up on my chest and looks nice, but it’s an extra small and I have trouble (like, lots of trouble) getting it on and off. If anyone has any tips for wearing tube tops and dresses post-mastectomy, I’m all ears!

I’m Happier

I knew getting my breasts removed would make me happier, but I didn’t realize how free and confident I would feel.

Making the decision to get this procedure wasn’t easy, and going through with it wasn’t easy, and healing wasn’t easy.

It wasn’t easy to know I’d never have boobs again, and to not know what that would be like.

It wasn’t easy to know I was unconscious for two and half hours while a stranger sliced off parts of my body in a room full of people I didn’t know.

It wasn’t easy to know that my life would be different, and I didn’t know exactly how.

It wasn’t easy to pay so much money to not know exactly what the outcome would be, or exactly how I would look.

But I will say this: It was ABSOLUTELY WORTH IT. And I’d take that leap again in a heartbeat.

I’m currently pursuing a hysterectomy, which I hope to have by the end of this year, to complete my journey of removing body parts that I have always hated and wanted gone. I will definitely give an update about my process for pursuing this procedure as a gender-neutral person as well as my healing process when the time comes!

Thank you so much to everyone who has supported me on my journey of making my body a more comfortable place for me to live!

What It Was Like Recovering From a Double Mastectomy (My Top Surgery Healing Journey)

Disclaimer: This article is written from my personal experience getting an elective double mastectomy. I do not, nor have I ever, had breast cancer and did not get my breasts removed because of cancer or the BRCA gene. I simply wanted my breasts removed and got them removed with a plastic surgeon (you can read more about my decision to get this surgery here).

While cancer patients may be interested in this article for healing purposes, please be aware that this article is written more with people who want their breasts removed for gender reasons in mind. I say this simply because I don’t want to offend anyone with the language I use in this article to describe my journey or my desire to get my breasts removed, so please keep this in mind when reading.

That being said, I am also not transgender and so transgender individuals reading this article, please also keep in mind that I didn’t get top surgery because I changed genders.

I am also not any type of health professional and am not recommending my personal healing protocol, including herbs or supplements, to anyone. I would always advise following your surgeon’s instructions for healing and following up with an herbalist or another natural health professional as you see fit.

There will be photos of surgical incisions, scars, blood, and bruises in this article. Please be mindful of any triggers you may have in regards to trauma, body dysmorphia, etc. before continuing to read this post.

Also, this post is going to be long!

So here we finally are! I’m almost 13 weeks post-op as I’m writing this. I got my breasts removed via a double mastectomy with a plastic surgeon on November 23, 2020.

I wanted to post a longer, more detailed article about my recovery journey because when I was looking for information about top surgery it was hard to find all the details I needed to feel “prepared” for my surgery (put that in quotes because I feel like you can’t ever really be prepared for something you haven’t experienced).

Don’t get me wrong—some of the videos and articles I saw were super helpful. I’m just posting my experience in the hopes that it could also be helpful to someone else recovering from this procedure!

While this article won’t be a day-to-day guide, it will be a week-by-week guide up until week eight post-op. I will also continue to update this post as I heal throughout this year with photos and any other information I feel belongs here.

Before I begin with my week-by-week process, I have to say one thing: I am SO happy that I got my surgery at the time of year that I did. There are a few important reasons for this:

  1. I got my surgery at the end of November, and it’s cold where I live in November. I could not imagine having gotten this surgery done in the summer when it’s nice outside and I would have been moping about all the things I couldn’t do. It was the perfect time of year to cozy up on the couch with my husband, watch movies, and eat toast. I’m convinced would have been miserable if I had gotten this surgery done during warmer weather.
  2. My binder after surgery was super tight and itchy and horrible and I felt that if it was warm outside, I would have been more sweaty and irritable with that thing on. As it was, I was already so irritable with it that when I texted my husband after my post-op appointment to tell him that they had taken the binder off and the drains out, he sent me an emoji of a sweaty face (like he was nervous about what would happen if I came out with my drains still in and that binder still on, ha).
  3. I got my surgery done the week of Thanksgiving, which gave me a perfect excuse to not see anybody for that holiday (I wouldn’t have seen anyone anyway, but still, it was nice to have an excuse).

So now that you know why I’m happy I got my double mastectomy done in November, here’s my healing journey (there is also a scar salve recipe and some FAQs at the end!).

Table of Contents

But First, Some Before + After Pics

There will be other pictures in this post, but here are my before and after pictures:

Before (taken in a parking lot sometime in 2010, don’t ask):

Don’t let this too-small neon purple push-up bra fool you—my boobs didn’t actually look like this. In fact, my surgeon used the word “deflated” in my case notes when he described my breasts (thanks, doc!). They were between a 34 D-DD size.

After (taken February 2021):

Now I have about 14 inches of scar tissue where my breasts used to be. It may sound weird to some, but I am so much happier without my breasts and feel like this is “me”.

Herbs and Supplements I Took to Help My Healing

Before we get into my week-by-week journey I want to start with what I took to heal so that my week-by-week healing journey will have more context for you.

I worked with my herbalist to incorporate some herbs into my usual herbal routine to help me better heal after my procedure. Although I can’t recommend specific dosing or what herbs would be best for you, this is what I took:

  • Arnica. My herbalist recommended homeopathic arnica tablets taken just before and after the surgery (I took them for about four days after the surgery).
  • Calendula. I added one tablespoon of organic calendula flowers to my herbal broth that I drink every day for about two months post-op.
  • Comfrey. I added one tablespoon of organic comfrey to my herbal broth that I drink for three weeks following the procedure.
  • Horsetail. I added one tablespoon of organic horsetail to my herbal broth that I drink every day for about two months post-op.
  • Violet. I added one tablespoon of organic violet leaf to my herbal broth that I drink for about two months post-op.

I had to stop taking my ginger infusion, stop eating any garlic, and stop taking fish oil supplements before the procedure and had to avoid them for two weeks following the procedure (I didn’t avoid garlic for that long, that just wouldn’t have been humanly possible for me).

As I likely have Ehlers-Danlos Syndrome (EDS), my body is also pretty bad about healing and I scar easily, so I was taking hyaluronic acid (40-60 mg a day) and collagen supplements for my skin and for healing. I’m currently still taking these. Please keep my potential EDS diagnosis in mind when looking at my scars 🙂

I also drink an herbal broth every day that contains burdock, chaga, astragalus, dandelion root, codonopsis, reishi, shitake, and garlic, so I’m not sure if all these babes helped me heal or not (this was the broth that I added my calendula, comfrey, violet, and horsetail to).

Medications I Took

I HATE taking medication and will avoid it at pretty much all costs. However, I did take the medication my surgeon prescribed because I wanted everything to go smoothly after the procedure.

I know this sounds weird but I don’t know if I really NEEDED these medications, it was just hard to tell how much of a difference they made. But these are the ones I took:

  • Celecoxib. This is a non-steroidal anti-inflammatory (NSAID) drug. I took this for one week following my surgery.
  • Gabapentin. This is an anticonvulsant drug that also can treat nerve pain. I took this for one week following my surgery.
  • Tylenol. I took OTC generic Tylenol for one week following my surgery.
  • Zofran. HOLY SHIT I would never want to take this anti-nausea medication again! I’m pretty sure this medication, in combination with the drugs they used in my IV, made me constipated.
  • Nausea patch thing. I don’t know what this is called but I had to put it behind my ear 12 hours before the surgery and took it off later that night. It made me nauseous.

I think what surprised me about these meds is that a) I’m not sure if they really helped and b) THOSE NAUSEA MEDS MADE ME FRICKIN NAUSEOUS! The only thing the nausea meds did that was helpful was prevent me from actually throwing up (I did not throw up once).

I did not have to take any narcotic medication because my surgeon injected some sort of numbing stuff into my chest after the surgery, which we agreed on prior to the procedure. I paid extra for this. I really wasn’t in any pain which was surprising!

So now my week-by-week healing!

Week One

That first week was the worst. This is what my binder and drains looked like (this picture was taken as we were leaving for the plastic surgeon’s office to get the binder and drains removed one week after my surgery):

I was crazy nauseous and panicked when waking up from the anesthesia. My anesthesiologist never told me I was going to fall asleep while I was in the operating room, so it felt like I was awake and conscious one second and the next, I was waking up in a dream.

I don’t remember much of this but I remember telling the nurses “I can’t breathe!” over and over again, probably because my binder was so tight. I remember someone saying, “You are breathing”. This was after the procedure.

Later, my husband told me that the nurses told him they gave me Valium to calm me down, which was awful. I don’t remember hardly anything of leaving the hospital outside of flashes of nurses dressing me and feeling the cold air of the parking garage.

At home, I slept most of that day and was super out of it. I was nauseous for three days following the surgery (with the first two days being the worst). I was able to type and start working the day after the procedure (I freelance write full-time), but I only did a little work and mostly rested and slept.

I wasn’t able to reach anything or do much of anything at all. I wasn’t able to bathe or take care of my bunnies. Getting out of bed by myself was almost impossible. I was upset and didn’t want to see people, I felt gross and weird and not like myself. I slept propped up on pillows to help my chest drain better. Sleeping was surprisingly easy; I was knocked out every night.

A few days after the procedure I began having strange buzzing sensations and sensations of almost stabbing in my chest. They were brief but still felt really weird. My chest was mostly numb and I wasn’t in any pain really, but I was uncomfortable because the binder was so tight and the drains became sore and itchy by the end of the week.

I was also constipated from all the drugs they put in my IV which was frickin awful! I wish I started taking flaxseed or chia seeds a couple days before my procedure, but I thought since I wasn’t taking narcotics that I wouldn’t be constipated. That was a mistake!

Week Two

After getting my drains out one week after the procedure, I felt so much better. I was much less nauseous, able to reach more, and began taking care of my bunnies (although I wasn’t able to fully care for them and so relied on my husband to help).

This is what my chest looked like after the binder came off (it’s gross, sorry, at this point I hadn’t bathed yet):

Also, I love how my surgeon wrote L>R on my chest, because my left breast was bigger than my right one.

Reaching, lifting, and twisting were still difficult, although I was still able to type on the computer and work. I wasn’t able to cook or do much still. It was really weird seeing my new chest and feeling like the procedure was more real.

I still wasn’t able to wear regular shirts and so needed to wear capes and button-down shirts which was annoying. I really just wanted to wear a tight t-shirt and show off my new chest. I was able to sleep flat on my back and took the binder off halfway through the second week, as I felt I didn’t need it anymore (although my surgeon told me to wear it for at least one more week).

I also began having arm pain during my second week. Every morning when I woke up my arms were numb, but it went away as I moved around. This was a little alarming.

One surprising thing was how tight the skin on my chest was. I did tell my surgeon that I wanted everything to be tight, but every time I tried to stand up straight, it felt like my skin was pulling from my neck all the way to my abdomen. It was really weird and uncomfortable. I was a little alarmed by this, but fortunately, it got better as the weeks went on and now I don’t even really notice any pulling in that area.

Week Three

The surgery still doesn’t feel super real three weeks in. I was still processing it. I’ve shown friends my surgical scars, but my family didn’t want to see them (now I know why so many transgender individuals have wanted to show me their new chests—I really just wanted to show people my new chest!)

It hurt my feelings when my family didn’t want to see it. If someone wants to show you their new chest, just let them unless you feel it would do massive phycological damage to you.

This is what my chest looked like during the third week:

I was able to drive at the end of week three and became fully able to take care of my bunnies. Lifting and twisting were still difficult. My arm pain continued throughout week three, but I was able to lift heavier things like grocery bags. The Steri-Strips my surgeon put on at my post-op appointment have mostly come off at this point and I’ve begun using my scar salve (we’ll talk about that in a bit).

I was taking comfrey and horsetail in my herbal infusion but discontinued using them at the end of the third week. However, I did still take violet and calendula in my broth.

Week Four

Emotionally, I was still coming to terms with the fact that I don’t have breasts. The surgery still doesn’t feel real in so many ways. During week four after my Steri-Strips came completely off, I noticed that there were still some stretch marks above my incisions from my breasts. I’m mad that the surgeon and I didn’t discuss this and mad that my drain holes appear to be scarring.

Fourth-week photo:

I’m using my scar salve nightly and putting Covidien bandages over my scars to keep the salve on overnight. I’m able to do everything I was doing before the surgery except for lifting weights, yoga, and running. I’ve been walking for exercise but that’s it.

I can vacuum and mostly get in and out of t-shirts. I’ve been sleeping well. I can sleep on my side for only a few minutes without it getting uncomfortable (not sure if this is because my incisions go so far into my armpit area). I’ve been mostly sleeping on my back during my healing process.

I’m still having arm pain in the mornings and my underarms are a little numb. I have had a couple days without this during this week. After researching online, it appears to be nerve pain from the surgery and should go away in time.

Week Five

I’m feeling pretty good about things five weeks in, but I’m still getting used to my new chest. The scars are really visible and taking their shape. My arm numbness/pain has been much better, but I still have trouble lifting really heavy stuff.

I can get in and out of t-shirts fairly easily but I do have trouble getting in and out of tighter shirts by myself. Towards the end of this week, I did a really short jog and a few long walks, it felt great to be doing some of my normal stuff again. I could even sleep on my side for brief periods of time without my incisions hurting.

I feel optimistic about my scar salve but towards the end of this week, I started developing a bad rash around my incisions. I thought it was from the scar salve but I found out it was from the Covidien bandages I was using. I have discontinued them.

Week Six

By week six I’m feeling pretty upset that my stretch marks are still there and that the surgeon and I didn’t talk about this. I’m still getting used to the way my chest looks and slowly feeling more and more like I don’t have breasts. That’s been one of the most surprising things about having this surgery—how it didn’t even feel like my breasts were gone afterward. I’m not sure how to explain that.

The rash took a turn for the better and is starting to look good. While the rash was healing I didn’t use anything on it except organic rosewater. By the end of this week, I’ve started using my scar salve again. Instead of using Covidien bandages, I instead sleep with a clean old t-shirt on to prevent the oils from the salve from ruining my sheets and comforter.

I can sleep on my side without it hurting much. The arm pain is mostly gone but returns intermittently. It’s a weird numb and aching feeling, mostly underneath my arms extending between my armpit and my elbow, and mostly on my left arm (my left breast was bigger so not quite sure if this had anything to do with it).

Week Seven

I went back to work at my job in DC (I work on-call at a women’s homeless shelter in addition to my freelancing work) during week seven. More people have been finding out about my surgery; it feels weird to share what used to be my deepest secret (that I hated my breasts) with people. Upon hearing that I’d gotten my breasts removed, most peoples’ initial reactions were horror.

“Oh my God, do you have cancer?”

“Are you ok?”

“What happened??”

It was, I have to admit, pretty entertaining to watch my coworkers’ expressions change from horror to confusion to the realization that I didn’t have cancer, I just hated my breasts. The ending line was always “As long as you’re happy.”

Thank you, Mary, Allison, and Jaynada, I am happy!

Anyway, during week seven, I’m still feeling weird about my stretch marks. I just wish I had been prepared for the fact that they would still be there. My rash is completely gone, which is good, but there are still some purple marks on my skin where it was. It takes my skin forever to heal!

I’m using my scar salve every night with just a t-shirt to go to bed. I can sleep on my side without much pain, and my arm pain is completely gone. I even went for a 1.5-mile run this week and I’m feeling good. I can get in and out of t-shirts easily, but tight clothes are still a little difficult for me to manage.

Week Eight

So week eight, there’s not much to note. My rash is gone but still some marks where it was. I have no arm pain. I’m continuing to exercise more, although I still have a little trouble getting out of tight shirts.

I’m feeling better about my chest in general and starting to accept my stretch marks. I’m feeling a little more each day like I don’t have boobs.

I’ve been lifting heavier things and have some mild pain when doing so. Sometimes when I wake up, my incisions feel sore. Twisting my body is difficult. At the end of week eight, I began doing yoga and weights again. Surprisingly, the hardest part has been lifting my arms over my head. I can feel the skin stretching in a weird way, almost like my incisions are pulling apart (this is the sensation I talked about in Week Two). It’s not painful, it just feels uncomfortable. I’m guessing this will go away with time.

My surgeon also told me before my procedure that my chest wall (whatever that is) was extremely asymmetrical and that he couldn’t fix that, so my chest would have an unusual shape after the procedure. I’m certainly noticing it more as I heal, but I actually think it’s adorable and it makes my body really unique (if I can get a good picture of the asymmetry and its effect at some point, I’ll update this post with it!).

My Magical Scar Salve

So I’m still figuring out how magical this scar salve really is, but I have high hopes for it. My herbalist Mischa Schuler at Wild Carrot Herbs assisted me with enhancing this recipe for scars and stretch marks.

  • 8 tablespoons herb-infused olive oil (I used a mix of organic violet flowers, arnica, comfrey, calendula, and yarrow)
  • 5 tablespoons rosehip seed oil
  • 2 tablespoons moringa oil
  • 1 teaspoon sea buckthorn seed oil
  • 2 teaspoon vitamin E oil
  • 2 tablespoon beeswax
  • 4 tablespoons cocoa butter
  • 24 drops helichrysum essential oil
  • 16 drops lavender essential oil

It was really fun (but also really expensive) to make this salve. I’ll post updates as I see how it’s working, right now, all is going well but it’s too early to tell if it’s helping my scars and stretch marks. It made enough salve for me to use for a long time, I’m expecting it will last me a year with daily use, if not longer.

For scar management, I’m exclusively using this salve and didn’t use the silicone strips my surgeon recommended. I just wanted to go this route; it’s a personal preference. I just massage the ointment into my chest scars every night and put a clean t-shirt on and hop into bed.

FAQs About My Top Surgery Experience

How Did You Choose Your Surgeon?

As a Cancer and an empath, my relationships with people are very important to me and I am easily affected by people’s attitudes and energy.

I chose my surgeon because he was very experienced and I had an initial positive experience with his practice. He has almost 20 years of experience doing breast surgeries, including mastectomies. I didn’t choose him because I loved his personality. But he did spend an hour with me during my initial consultation, and invited me to return for a second consultation just to be sure I still wanted to continue with the procedure and to answer follow-up questions.

I’ve seen a lot of transgender and non-binary individuals say they are embarrassed about showing their breasts to the surgeon. It is awkward! I mean, you’re exposing a part of your body that you hate to a complete stranger. Of course, I didn’t like that part of the consultation (or the part right before the surgery, when the surgeon draws on and around your breasts) but unfortunately, it’s part of getting top surgery.

For the most part, I had a positive experience with my surgeon although, in a perfect world, I would have chosen a surgeon I felt really connected with AND was super experienced.

What Questions Did You Ask During Your Consultation?

I asked so many questions! Here’s the list of the exact questions I asked:

Will all breast tissue be removed?

Do you have experience with aesthetic flat closure?

Can I see pictures of before/after with no nipples?

Will the surgery reduce my risk of breast cancer?

Recovery time?

Risks/complications?

Will my breast tenderness with periods go away completely?

Will I get liposuction around breasts to prevent “dog ears”?

Will I have drains?

Are there any long-term effects, for example, I like to exercise, will I feel pain when running/lifting weights/yoga?

What happens to my breasts once they are removed? (do you keep them/use them for research, can I keep them, etc.?)

If I get pregnant, will there be any breast tissue left that would produce breastmilk, swell, or affect my chest/surgery results?

Do you offer financing?

Does the estimate (price) include follow-up appointments, post-op procedures such as drain removal?

Will I be able to go home the same day? How long will surgery take?

What type of anesthesia will be used?

How exactly will the surgery be done (incisions)?

Where will my scars be? What shape/size will they be?

What can I do to help scars heal?

Will I need revisions? What percentage of your patients ask for revisions? What is the pricing for revisions?

Am I at higher risk for seroma? What percentage of your patients experience this?

What needs to happen before the procedure? Bloodwork? Letter?

Here are the questions I did NOT ask but SHOULD have asked:

Will my stretch marks still be there after the surgery?

I didn’t ask this question and REALLY wish I did because I didn’t realize that I would still have some stretch marks around my scars and my surgeon and I never talked about this.

You REALLY have to be proactive and advocate for yourself and ask every single question you can think of. It really sucks, but you CANNOT expect your surgeon to tell you these things. You have to ask even if it seems like a stupid question. There are no stupid questions, especially not compared to how dumb you’ll feel after the procedure is over, and wham! There are your stretch marks.

Don’t feel like you’re bothering them with all your questions and if they make you feel like you’re bothering them, find another surgeon. You (or your insurance company) are paying this person thousands of dollars to do this very important and sensitive procedure—you deserve to know every detail and inform yourself of the process!

Will the drain holes leave scars?

Didn’t think to ask this but there were actual holes in my body where the drains were (one hole on each side just under my incisions). It’s still early on in my healing process but it looks like they will scar.

A pic of one of my drain holes taken a week after the surgery:

How long will my scars be?

This is a specific question and although my surgeon and I had several conversations about where exactly my scars would be as far as how far up they would be on my chest, we didn’t talk about how long they would be. My scars are pretty long and extend to the very end of each armpit. So I have two scars, one for each breast, that are seven inches long each, which is about 14 inches of scar tissue.

Can I purchase my own binder for after the procedure?

I didn’t know to ask this and ended up getting charged $200 for a binder that cost $28.50 online (from the same exact website the surgeon ordered it from). The surgeon’s office refused to refund me the difference (and they were rude about it).

Did You Need a Letter to Get Top Surgery?

No. For those who don’t know what this is, this is a letter from a therapist stating that you want the surgery for gender-related reasons and that you have documented gender or body dysphoria. Even though I’m not transgender, I was a little surprised that my surgeon didn’t require a letter prior to my surgery. All he asked was that I come in for a second consultation before actually scheduling the surgery. He also didn’t require any blood work prior to the procedure, which was a little surprising to me too. The whole thing was relatively easy as far as my feelings being validated and the surgeon being willing to do the procedure.

How Did You Pay for the Procedure? Did Insurance Cover It? How Much Did It Cost?

Since I am not transgender and it was an elective procedure, my insurance did not cover any of my surgery. I had to pay a facility fee, a surgeon’s fee, and an anesthesia fee out of pocket. The total cost of everything was $11,225.

I could have went through the process of finding a therapist and getting myself documented as non-binary, but this would have taken more time, and I’m still not sure if the insurance could have covered the procedure. I’m not sure how well that would have worked out since I don’t really consider myself a certain gender, and I present as female for the most part.

While I technically had the immediate funds to cover my procedure, I didn’t want to drain my disposable funds and so instead opened up two new lines of credit to pay for the procedure. I have good credit and got approved for two credit cards, one of which offered 15 months interest-free financing and the other 20 months.

So I paid for the anesthesiologist upfront (which was a little over $1,000) and my down payment for the surgeon (which was $1,000), but then put the rest on these two credit cards, so now I have 15 and 20 months to pay off the balances interest-free, which is great (I would highly recommend this option to people who have good credit and are looking for a way to pay off a large balance interest-free, I’m SO happy I found out that I could do this! Here’s an article about it in case you’re interested).

ALSO I had to pay for my breast tissue to be tested for breast cancer after removal. This was something my surgeon required. The cost of that was over $2,300, but fortunately, insurance covered a lot of it, so I ended up having to pay $650 in addition to the $11,225.

How Long Did You Have to Take Off Work?

So I took off seven weeks from my on-call job in DC at a women’s homeless shelter and I only took off one day of writing. I was writing in bed the day after the procedure: freelancing life! I probably didn’t need to take the full seven weeks off of my DC job, but I wanted to be safe and that job can be unpredictable as far as things happening on the job, so wanted to be sure I would be recovered enough to handle anything that might happen. If I had a standard office job, I would think taking off at least a week (more like 10 days) would be appropriate. If I could have, I would have taken a full week off of everything to do nothing but watch movies and eat toast.

How Long Until You Were Able to Drive?

I drove at the end of week three but felt like I was probably ok to drive at the three-week mark.

How Much Pain Were You In?

Not much pain at all! My surgeon used some type of numbing stuff (I don’t have the name for this, sorry) which prevented me from having to take narcotics at all. I only had to take Tylenol for about a week and that was it. Of course, my surgical site was sore, but as far as actual pain, there really wasn’t any.

What Was the Worst Part of the Surgery?

There were three parts of the surgery that I felt were “the worst”, but the primary one was the nausea. I was intensely nauseous for two whole days following the surgery, and it finally started getting better on the third day. However, I’m prone to motion sickness and nausea in general, and I found that my nausea was worse in general in the weeks following my surgery.

The other two horrible parts were:

  • The drains. My drains were in for seven days and as my chest slowly became less numb and was healing, the drain holes felt itchy and irritated and every time I sat down they just felt like they were tugging and it was awful. I was SO happy to get those out at my seven-day post-op visit!
  • The binder. I was really dreading wearing the binder. It was pretty awful. Fortunately, I only wore it for 10 days, and it was very tight for the seven days following the surgery until my post-op appointment. After that, I got to take it off to shower and only wore it for another few days after that. I really just felt like I didn’t need it after the 10 days. I’ve heard other people say they have to wear it for six weeks—I wonder if this just has to do with whether or not you get nipple grafts?

Why Didn’t You Get Nipple Grafts?

This is a really personal question but it has a simple answer: I didn’t want to. All the years I had envisioned my chest without breasts, I imagined it without nipples too. I didn’t even know nipple grafts were a thing until I got older and learned more about top surgery. My nipples weren’t important to me and I chose not to keep them.

Why Did You Get Straight Scars Rather Than Following the Pectoral Line?

My surgeon wanted to follow the pectoral line for the scars but I told him no. That wasn’t what I wanted. I felt that it would have given my chest a more masculine appearance, and since I’m not transgender and didn’t want to appear more masculine, I opted for straight scars. My surgeon said straight scars like mine are more of what cancer patients who get double mastectomies get. That’s not the reason why I wanted it, I just felt that aesthetically they were more pleasing to me. I’m very happy with my decision to do this!

How Long Did You Need Someone’s Help After the Surgery?

I’m sensitive to medication was extremely nauseous for two whole days following the surgery even with taking two kinds of anti-nausea medication (read that again). After that, I felt more capable and aware, but not enough to fully take care of myself. I’m also a bunny mom and was not able to fully care for my bunnies until about two weeks post-op.

In my experience, having someone there until you get your drains out (which is normally seven days following the procedure) is necessary. At least, this was the case for me. If you can’t get someone to stay with you for the full seven days, I would say for a minimum of three days following the surgery (just make sure you have clothes that are easy to put on and put all of your necessary things within easy reach!).

What Surprised You the Most About Having Top Surgery?

There were so many things!

  • How scary it was to be in the operating room as the nurses strapped me down to the operating table, hearing the anesthesiologist say he was giving me “the medication”, just waiting to be unconscious. It was literally like someone flicked a switch and it was lights out.
  • How sick (nauseous) I felt after the procedure.
  • I had some vaginal bleeding after the surgery, which I noticed after I got home. My husband called the surgeon and he said he wasn’t sure what it from, but could be from the trauma of the surgery. That freaked me out a little (has anyone else had this experience??).
  • How it didn’t even feel like I’d gotten my breasts removed.
  • Discovering days after the procedure that the surgeon (or someone) had cut my armpit hair.
  • How emotional and in need of emotional support I felt (I’m so grateful to everyone who checked in on me!).
  • How much I hated wearing button-down shirts (this is really weird but I would recommend having clothes you actually like to wear after the procedure. There was something about wearing powder-blue button-down shirts that just made me feel awful. I wish I had something fun to wear to make me feel better during this crappy time).
  • How much I enjoyed saying “my chest” instead of “my breasts”.
  • How I didn’t remember much after the anesthesia.
  • How I didn’t realize that after surgery, I thought my body would be perfect. It was NOT perfect. I had ugly, uneven scar tissue, stretch marks, and an asymmetrical chest wall. I think I thought that once my breasts were gone that my body would be perfect and beautiful. It’s still beautiful, but it’s definitely not perfect. The surgery didn’t magically make it perfect.
  • How I immediately began noticing boobs after my surgery. Did anyone else have this experience? It was super weird! I literally never paid attention to anyone else’s boobs before the surgery and now it’s like I’m seeing them everywhere. Not sure how to explain this.

What Were the Things That Helped You the Most?

  • Straws. I kept reading about these but felt like they were overrated. Turns out, I really needed them for the first few days after surgery!
  • Button-down shirts. I hate button-down shirts but unfortunately you just really need them following surgery.
  • Lemon and honey tea for my nausea, as well as smelling lemon essential oil. I wish I had a diffuser at the time; I didn’t know how good lemon was for nausea! Normally I would take ginger but I couldn’t take ginger because it thins the blood and can increase risk for bleeding following surgery.
  • V-neck shirts. This is a weird one, but I slept with a t-shirt on after my surgery for two reasons. The first is that I wanted to protect my scars from rubbing on my sheets and comforter, and the second is that I was using my scar salve which contained a bunch of oils and cocoa butter, which would have stained my bedding. The V-neck style was nice because I didn’t feel like I was getting choked while I was sleeping because I move around a lot and regular t-shirts were just too constricting.
  • Freezing food. I made smoothies, broth, and frozen lasagna and chili, all of which really helped when my husband and I didn’t feel like going to the store and I still needed nutrients, ha.

Is There Anything You Would Have Done Differently?

YES! Outside of asking my surgeon the questions I neglected to ask, there is one big thing I would have done differently. And that thing is—DO NOT eat pizza the night before your surgery!

I couldn’t eat or drink after midnight the night before my surgery and for some idiotic reason my husband and I still aren’t sure about we decided to get takeout (something we almost never do) and have a gluten-free dairy-free pizza the night before my surgery.

The result? I was INSANELY thirsty and couldn’t drink anything! By the time I arrived at the surgery center at 8:30 the next morning, I was practically dying of thirst. It was miserable. The nurse couldn’t even get a vein on me because I was so dehydrated, which is something that never happens to me (I have good veins, thank you very much!). The result was this:

So yeah next time… I would literally eat a fruit salad and lots of water the night before my surgery.

Do You Miss Your Breasts?

Honestly? It’s really weird but I do miss them sometimes. Don’t get me wrong, I rarely feel this way. Sometimes I miss them during sex which is weird because I kinda hated doing anything with them during sex. Sometimes I miss how soft my chest used to be (it’s really hard now). Mostly I’m ecstatic that they’re gone but I think it’s to be expected to miss them sometimes, even if you hated them (it’s like missing an ex you don’t regret breaking up with, ha).

Finally! That Was a Long Post!

I had tried to prepare so much for my surgery, and I think I did a good job, but there are some things you really just can’t prepare for, and you just have to experience it.

If you have any questions about my journey or healing process, I’d love to hear from you! You can leave a comment below or reach me directly at jenn@thegreenwritingdesk.com. I’d also love to hear from you (and I’m sure other readers would love to know too) if you’ve gotten top surgery and found something helpful or surprising about having the procedure!

I’d like to thank the transgender community and all the individuals who posted videos or articles about their experience, they helped me SO much and without them I would have been so lost with preparing for this procedure. Their information empowered me to advocate for myself as much as possible, and it’s part of the reason why I’m writing this article and sharing this information with you now. So THANK YOU!

The Five Stages of Grief and Plastic Surgery

I got plastic surgery five weeks ago. I was so excited about the surgery (I got an elective double mastectomy without nipple grafts—you can read the story here) that it didn’t seem to me that I could feel anything other than wildly excited about having my dream of not having breasts come true.

However, I had enough sense to know that I would likely experience many different emotions after the surgery—and not all of them would be positive.

As the surgery got closer, I became less excited and more anxious, despite knowing that I had made the right decision. Of course, I couldn’t anticipate the exact emotions that I would feel after the surgery. I was surprised by some of them. In the months before my surgery, I wondered: would I miss my breasts? Would I think I had made a huge mistake? What I went through was a little like the five stages of grief after my plastic surgery procedure.

Denial

It didn’t feel like my breasts were gone for a while after the procedure. It’s hard to explain this to people. I had two wounds on my chest after my surgery, two long incisions starting in the middle of my chest and extending to the end of each armpit. I had stitches. I didn’t feel “free” or unburdened by not having breasts anymore. Instead, I couldn’t lift my arms over my head and I had a bandage on that was wrapped so tight that I couldn’t take a deep breath.

For the first week, before the bandage came off and I got to see my new chest for the first time, I literally felt like I was wearing a corset and that my breasts were simply smushed underneath that white binder (it didn’t help that my chest was numb, so I couldn’t really feel anything).

In a way, it felt like I was in denial that I had just had major surgery and that both my breasts were gone. When the surgeon removed my bandages at my post-op appointment and I saw my new chest for the very first time, I finally realized that they weren’t there. They were gone forever.

Anger

Why did I do this to myself?

It was hard not to wonder this in the first week, where for two days, I was so nauseous from the anesthesia that I couldn’t walk to the bathroom by myself. Where I couldn’t even lift a glass to my mouth and had to drink from a straw. Where I cried and thought that it was stupid of me to have maxed out two new credit cards to pay for this elective procedure.

I felt mad simply at the fact that I wanted so badly to have my breasts removed that I had actually gone through with this expensive and life-changing procedure. It was hard not to feel like the whole thing had been a giant mistake. My husband was very reassuring and told me my feelings were normal. After all, I couldn’t take a deep breath, bathe, or take care of my beautiful bunnies. It was natural that I’d be pissed, but at the time, it was hard to not be hard on myself.

Bargaining

What if I had gotten a different procedure done? The surgeon had asked me if I considered a breast reduction or another surgery such as a breast lift to “correct” my breasts. But my desire to get my breasts removed wasn’t about the way they looked; it was about the way I felt, and I just wanted them completely gone.

Should I have gotten a double mastectomy? Maybe removing my breasts wasn’t the right decision. Maybe I would miss them one day. Maybe I would find that, years from now, I would want to live my life as a woman with boobs.

I know this isn’t quite like the traditional bargaining stage of grief, but it’s difficult not to wrestle with yourself and consider if you might have taken another path. What I was facing in that moment—a lifetime with a new body that I was still getting used to—felt unbearable in a weird way, and thinking about alternatives to my decision was a result of that.

Depression

This is the part where I cried and told Ian (my husband) that I was afraid he wouldn’t love me anymore. Ian has always been amazing and so reassuring. We had so many conversations about my decision to remove my breasts, and have talked a lot about my feelings about my breasts over our 10 years of knowing each other and our two years of marriage.

I think what got to me was that almost every single person I told about the surgery asked about Ian first.

“What does Ian think?”

“Is Ian ok with this?”

“Did Ian know you were thinking about doing this before you got married?”

“I feel bad for Ian.”

After the surgery, I was feeling very emotional and experiencing a lot of feelings and I think I didn’t allow myself the space to acknowledge how much it had affected me that so many people had asked about Ian’s feelings about my body. News flash: Ian didn’t marry me for my breasts, and it’s my body, not his.

But lying in bed on the third day after surgery, Ian held my hand while I cried and I told him that I was afraid he wouldn’t love me anymore or find me attractive. I finally gave myself space to process these feelings. He was reassuring and we talked about our feelings, but I still felt depressed that not only was I recovering from major surgery, but that I had made a decision that I couldn’t take back (not that I wanted to take it back, but there’s something very sobering about making a decision that you can’t change).

Acceptance

I saw my new chest for the first time a week after the surgery. I was lying back on the chair in the exam room at my plastic surgeon’s office while the surgeon and an assistant unwrapped my bandages. There was a part of me that felt like my breasts were going to pop out after they unwrapped the bandages. I watched, looking down as the last bandage was removed and my new chest felt the cold air for the first time. “Welcome to your new chest,” the surgeon said.

It was strange looking down and seeing how small my chest looked. My breasts were a DD cup, and I had some fat around them, so I had also had liposuction during the procedure to prevent “dog ears”—pockets of fat left in the armpit area after a double mastectomy, as they’re known in the transgender community.

When I saw my new chest, I was amazed at how good it looked. Like I’d been dreaming for the past 15 years. Yes, I had stitches and purple marker and some blood around the wounds, but this was how I had wanted to look for so long. When I saw my new chest, I felt acceptance blooming in my heart, a love for something I could have only imagined in my other life.

It’s only been a little over a month, but I love my new chest. I’m still processing all the feelings that I’m experiencing as a result of choosing to get my breasts removed at age 30. But as I navigate my new body and my new life, I’m grateful to be able to say that my surgeon did an excellent job, the people in my life have been mostly encouraging and supportive, and I’m very happy with my new body.

I’m Not Trans But I Got Top Surgery: Why I Got a Double Mastectomy at Age 30

I never thought I’d be writing this article.

Five years ago, I read an amazing article on Elephant Journal that kickstarted my journey to trying to love my breasts.

I’d always hated my breasts. I was sexually molested as a child and also bullied by my mom about my body. These two important things that shaped my outlook of myself made me hate my breasts, at least on a superficial level. But underneath all that, the hatred I felt for my breasts was solely mine. Beneath those layers of trauma, shame, and guilt, it was just me and my feelings. And outside of my experiences, I’ve never truly felt good about my breasts.

I thought about removing my breasts for a long time. As a young teenager, I once duct-taped my breasts in front of the mirror, wondering what it would feel like to have them pressed completely flat against my body, almost like I didn’t have them. I thought about cutting them off myself (this just shows you how young I was; I really thought it wouldn’t be that hard to cut them off myself and sew up the wounds).

At age 18, I confided in one of my aunts that I wanted to get both my breasts and my uterus removed. My breasts because, of course, I hated them, and my uterus because I’d had horrible periods for six years at that point and hated feeling so incapacitated by my body. My aunt responded with “I think you’re experiencing a sexual identity crisis”.

I may have been young at that point, but I knew I wasn’t a lesbian. I’d always been into guys and I identified as a girl. I was ok with my vagina and my sexuality, but I just didn’t like some parts of my body.

My breasts were the most obvious part, as I was a DD cup and they were very noticeable.

By the time I read the Elephant Journal article at age 25, I’d been spending hundreds of dollars every year at Victoria’s Secret on bras, panties, and lingerie that I felt made me feel more empowered and secure about my breasts. Reading that article forced me to face an uncomfortable truth about myself—I didn’t feel empowered about my body at all. I felt ashamed, so ashamed that I had to wear fancy bras to give the impression that I was confident, to my friends, to my boyfriend, to everyone. When I took the bra off, I was so uncomfortable that it was shocking.

I didn’t wear a bra (outside of exercising) for five years after I read that article. So how did I get from there to here, five years later, getting a double mastectomy?

I thought I could embrace my breasts by not wearing a bra. For the five years I didn’t wear a bra, I tried my absolute best to love my body. I tried to not feel weird when my boyfriend, then fiance, then husband (as he transformed over a 10-year period, ha) and I did stuff with them during our intimacy. I tried to feel comfortable and confident in my clothing. The truth was that I was more physically comfortable, but mentally, I was a wreck. I was extremely self-conscious, and although I became somewhat less self-conscious over time, and even hated my breasts less, I still didn’t like them and didn’t want them on my body.

I think it’s important to note here that my feelings about my breasts weren’t about the way my breasts looked. It was about how I felt, both physically and mentally, about having them as part of my body.

Earlier this year, Nadir and Fiver, two of my amazing and beautiful rabbits, died. It was extremely hard (those words don’t do the experience justice at all) and I’m not sure how I’m still here after experiencing that grief. Like any traumatic or life-changing event, it shifted my perspective on things. I’m not sure how to explain this. I know I should, being a professional writer, and maybe one day I’ll have the words to describe how I feel like Nadir and Fiver’s death guided me to this decision. It wasn’t because I was upset. It wasn’t because my bunnies, the most special and important and beautiful beings in my life, suddenly weren’t there anymore, at least not in the way they were.

It was because I realized that I deserved to be happy. I wanted to be happy. Not even because I’d experienced profound loss, but because their deaths transformed me. I was born again, even if I didn’t want to be, even if I would have given anything to have them back. My life after witnessing their deaths was startling—I couldn’t relate to people, I had two bald spots on my head from where my hair fell out because of the grief I’d experienced, and I resented my other rabbits for surviving when I just wanted Nadir and Fiver back.

One night, my husband and I were being intimate before I had to go into work for an overnight shift for my on-call job in DC at a women’s homeless shelter. We were engaging with my breasts and I felt so uncomfortable and embarrassed that my body was literally pulling away from him. He sensed my discomfort, and we stopped. This happened frequently during physical intimacy for us. A lot of times, we didn’t even engage with my breasts because it ruined sex for me. Normally, we’d stop with my breasts and move on.

But something was different this night. Something had shifted inside of me. It was like everything suddenly just “clicked” and I was able to see my desire to remove my breasts with a clarity that I hadn’t experienced before.

On the hour-long drive to work, I thought about what I had experienced. I suddenly, irrevocably, strongly felt that I no longer wanted to live with my breasts. They were beautiful breasts, my husband loved them, they looked ok on my body. But the truth was that I had always hated them and felt so uncomfortable with them. Outside of the way my family made me feel about them, I had just always hated them and wished that they weren’t there.

I thought about A Year Without a Name, a book I read earlier this year by Cyrus Grace Dunham. Cyrus is transgender and I loved reading his account of coming to terms with his gender. He got top surgery (a double mastectomy with a nipple graft). When I read about his experience with his breasts, I both identified with it and didn’t identify with it. He starved himself at one point to try and get rid of his breasts. I didn’t do that. But was I much different, duct-taping my breasts, considering cutting them off myself with a sharp knife?

I decided to write a letter to Cyrus, even though at that moment, I didn’t know how to reach him. In my head, I wrote the letter as I drove. I talked about how I was molested as a child. How my mom made me feel like shit about my body. How my breasts never felt right on my body.

By the time I parked on the street outside my job in DC and finished the letter, I knew. I knew without a doubt that I wanted to get my breasts removed.

That night, I researched extensively about top surgery and elective double mastectomies. I couldn’t find anyone like me who still identified as a woman and wanted their breasts removed (today, I think I’m more non-binary than anything—although I’m not big on labels for myself—and I know of at least one other person who has had their breasts removed and still identifies as female). But I knew, just as I knew when I was 18 and my aunt made me feel like I didn’t know myself, that this was how I felt, this was what I wanted. I didn’t need to question it. I knew it buried in my heart; I would recognize it anywhere.

I found a potential plastic surgeon near where I lived. The next day, I called and made an appointment for a consultation for an elective double mastectomy. Two weeks later, I had my consultation, and the surgeon said he had never seen anyone like me who wasn’t transgender but wanted their breasts removed. But he agreed to do the surgery, and I felt he understood me and that he would do a good job (he did!).

My husband and I had many conversations about my choice to remove my breasts, both over the decade I have known him and in the months before my surgery. My husband has always known that I have hated my breasts, and as I talked about removing them over the years, has always been supportive of my feelings. He has always told me that he would think I was gorgeous and sexy no matter what. I know he can’t anticipate how he’ll feel about me or my body in five, ten, or fifty years, but I do know he’ll do his best to be honest with me and that we’ll continue to navigate this strange (and exciting) new space together.

My family and friends were largely supportive. My friends were SO supportive. My family was more confused but still supportive, even offering to help me pay for the surgery if I needed it. My one grandmother had issues with the surgery and told me she was upset that I was getting it done. A lot of people asked about Ian (my husband) and his feelings about the surgery. I thought that was a little weird since it’s MY body. It’s not Ian’s body. I’m grateful for everyone’s support, and for those that had the courage to tell me their negative feelings (hey, Grandma!), I am grateful for their honesty.

I told my husband in the months before I officially decided to get my breasts removed that I felt like I needed to want to get the surgery, instead of feeling like I needed it. I didn’t want to feel like I needed to have my breasts removed, I felt like I had to want it. After Nadir and Fiver’s death, I no longer felt like I needed to have my breasts removed. I could appreciate their beauty, their uniqueness, but they never felt like mine. I suddenly wanted to have them removed more than anything.

Two months after my initial consultation, on November 23, 2020, after more than 15 years of wanting to get my breasts removed, I got a double mastectomy (no nipple grafts). In the end, I paid over $11,000 to have a plastic surgeon remove my breasts while I was unconscious on an operating table. My gorgeous and amazing husband took care of me after the surgery. That first week was an emotional week. I cried and told my husband that I was afraid he wouldn’t love me anymore. He fed me cinnamon raisin toast and helped me sip water through a straw, emptied my drains and dressed me.

Before my bandages came off and we saw my new chest for the first time, I thought so many things. I thought my new chest wouldn’t feel like me. I thought I would cry with happiness. I thought I would be afraid. I thought that I wouldn’t love it as much as I wanted to.

Turns out, my new chest was scary: it was just so different. But it felt like me. I didn’t cry with happiness. But it felt right. And I loved it immediately, immensely.

I’m still getting used to my new chest (if you’ve read my tattoo grief article, I definitely went through a little like the five stages of grief with my surgery in that first week—I will write an article about that at some point!), and will post pictures soon as well as my recovery journey for those who are interested!

For My 30th Birthday, I Was Going to Get a Neck Tattoo—Instead I Found Out I Have Ehlers-Danlos Syndrome

Thirteen years after my misdiagnosed autoimmune disorder, 18 years after having debilitating painful periods almost every month, and almost nine years after going gluten-free and feeling healthy, here I am with a potential new diagnosis.

In hindsight, it all makes perfect sense. Ehlers-Danlos and mast cell activation syndrome. I have many of the symptoms of each. Yet, no one—outside of my integrative health doctor a few months ago—told me that I had these disorders.

Yet I know that at least one of my doctors knew I had Ehlers-Danlos. She had me perform the maneuvers of the Beighton score during my appointment at the age of 21. At the time, I didn’t know that’s what she was asking me to do; all I knew was that she was surprised by my hypermobility. She never told me I had the disorder.

(I recently attempted to find this doctor—who told me I would be on chemotherapy for the rest of my life to manage my autoimmune disorder, and who I only saw once—to get my records only to find that the practice is closed and I cannot locate her. Very frustrating. She came highly recommended to me from some acquaintances who had lupus—she turned out to be a total joke. She knew I had Ehlers-Danlos, probably knew about the connection between Ehlers-Danlos and mast cell activation syndrome, and probably could have come to the conclusion that my “autoimmune disease” was a result of my body overreacting to foods that it didn’t like.) Anyway!

So how did I get from there to HERE?

You can read the full story here, but the short version is this: I walked out of that doctor’s office feeling hopeless yet determine that this was not going to be my life. I found an herbalist who helped me figure out that gluten was causing all my symptoms. I stopped eating gluten and have been fine for the past nine years without any medication.

And yet.

While I’m currently healthier than I’ve ever been in my whole life, there were still some nagging issues that I couldn’t quite figure out.

  • The insanely painful periods (which have improved SO MUCH with help from my herbalists, but still sometimes leave me in bed all day)
  • My unexplained anxiety and skin picking disorder
  • The bad reaction I’d often have to alcohol (I’ve since quit drinking for good)
  • Having brain fog after eating
  • My orthostatic hypotension and low blood pressure
  • Hives after eating food (never quite figured out which foods caused this)
  • Poor wound healing, scars, and dry skin
  • The fact that I feel cold almost all the time

I couldn’t put my finger on it, and often times I’d forget that many of these symptoms weren’t normal because I’d been experiencing them forever. I chalked it up to genetics: my dad has insomnia and dry skin, my mom and brother have some form of skin picking disorder (which is actually a mild form of OCD).

Brain fog and hives are classic symptoms of a food intolerance, but I couldn’t figure out what I was eating that was causing these symptoms. I already don’t eat gluten, dairy, alcohol, and genetically modified food. I also do my best to avoid refined sugars (although, of course, I do indulge once in a while).

So what was going on?

I blamed it on my parents: I got screwed with bad genes, blah blah blah. But that didn’t explain my low blood pressure (high blood pressure runs on both sides of my family), and it didn’t explain my bad periods. There were gaps that I didn’t understand.

And then.

I needed to talk to my integrative health doctor to get some paperwork for my job in DC. I tried to get reception to send it, but they said that I had to schedule an appointment. Boo. So I did, even though I didn’t really feel that I needed to see him. It was COVID times, so I had a phone appointment with him (I love my integrative health doctor, I just hate doctors in general, so I always have an attitude when talking to him).

We spoke about some of my symptoms and he suddenly but strongly suggested that I had Ehlers-Danlos Syndrome and mast cell activation syndrome after asking me some questions. After asking me to come in for bloodwork, we got off the phone.

At first, I didn’t think much of his suggestions, but then, I felt upset. Here I am with yet another disorder—ahem, disorders—at age 30.

So I started researching and read the material my doctor sent me. I was convinced that I had this. I had so many of the symptoms. Not only could I perform several of the actions on the Beighton score, but I also had Gorlin sign—the ability to touch the tip of my nose with my tongue—something I’d always been able to do. Only 10% of people can do this, but 50% of people with Ehlers-Danlos can.

I’m still learning about Ehlers-Danlos and mast cell activation syndrome, but I can’t help but feel that this is a huge missing link in the big picture of my health—a merging of my misdiagnosis and my current symptoms. I also found some tentative research about the role of mast cells in dermatomyositis, and how mast cells could not only be “the first cells” to become activated in dermatomyositis, but also how maybe treating mast cell activation could be a missing link for those with dermatomyositis.

I’m currently working my herbalist to address many of my mast cell related symptoms and am excited to see what the future holds for my health! And the neck tattoo? Don’t worry, it’s on the list for next year 🙂