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.
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).