Hysterectomy date: May 18, 2011

post-hysto

In the recovery room about two hours after surgery.

As with any part of transition, I’ll preface this (and just about everything I say about transition) by saying that transition is such a unique and personal process, andnot everyone has all or any surgery. Although many doctors do recommend that you have a prophylactic hysterectomy within 5-10 years of starting testosterone, like any other part of transition, it is a deeply personal decision, and many trans men decide not to have a hysterectomy just because they don’t want one, or because they’d like to give birth, or because they don’t suffer from dysphoria with that part of their bodies.

My hysterectomy was mostly medically necessary, although I had always wanted one since the very beginning of my struggles with chronic pain. I had suffered from chronic pelvic pain from endometriosis and adenomyosis for about 14 years at the time of my hysterectomy in May 2011. I had two surgeries and years of medical and drug treatment before having a hysterectomy, although I had already decided I needed and wanted a hysterectomy.

Before I even knew realized I wanted to transition, I wanted a hysterectomy, and I think that was partly due to gender dysphoria that was there, but not yet at a conscious level. I believe the other part of my desire to have a hysterectomy was fueled by my struggle with chronic pelvic pain. I had painful periods where I would get sick, nauseous, start vomiting, and start to lose my vision and consciousness because the pain was so bad. Because of this, there was a lot of emotional trauma for me related to physical pain around having a period. After having the kind of pain that is so bad I just almost wanted to die, I just wanted it gone. I wanted to never, ever have a period again for any reason whatsoever.

Because of my long-winded history with chronic pelvic pain and well-documented evidence both in my charts and from surgical pathology reports, I was able to get my hysterectomy fully covered by my health insurance company, which at the time, was PHCS via Meritain Health.

My hysterectomy was performed by Dr. Kenneth Levey, MD, at NYU Langone Medical Center in New York City. Dr. Levey is an expert at minimally invasive surgery, and is one of the attending surgeons in the robotic GYN surgery department at Langone. Although he was very concerned about my age, he did perform the surgery, although he required me to sign a fairly extensive liability waiver attesting that I understood the implications of the surgery. I also had to have the waiver notarized.

It is important for me to share a couple of things. At the time of this surgery, I did identify as transgender, but was uncertain if I would go on testosterone. It is also important to share that I was not out as transgender to my surgeon, because at the time, I was incredibly meticulous and careful about not disclosing my trans status to any medical provider so as not to jeopardize coverage for any procedure. I also worried that if my surgeon knew I was trans, he may have thought I was just making up chronic pain in order to get a hysterectomy covered, which was most definitely not the case. In fact, he still does not know I am transgender or that I’ve transitioned. I did this to protect us both – to protect myself by not jeopardizing coverage, and also to protect him from any insurance liabilities should my trans status ever be disclosed. If I had to go back and do it again, I wouldn’t change anything about how I handled those things.

If you are planning to have a hysterectomy, here are a few things to consider:

If getting a hysterectomy is important to you and your transition, I would most certainly suggest getting a hysterectomy first, especially if your family has a history of cancer, or if you have any GYN problems such as pelvic pain due to endometriosis, adenomyosis, fibroids, etc. The reason I suggest this is because the reality is that many insurance companies ARE discriminatory, even though they are technically not allowed to not cover medically necessary procedures on account of someone’s gender identity. The truth is that even though they are not allowed to, they often do, because they make money from not paying claims. That is how they profit. In order to avoid jeopardizing any coverage for hysterectomy, it can be beneficial to have this procedure first so that there are not any records of trans-related procedures or treatments on file with your insurance company. Of course, this is less of a worry for folks who have trans-inclusive health insurance policies. 

My hysterectomy experience

I had done pre-operative bloodwork the week before surgery, at the outpatient testing center at NYU Langone Hospital. This included a routine blood workup, and they also did an EKG because they weren’t sure if the surgeon had ordered it, which was totally normal.

Beginning the day before surgery, my surgeon had ordered a complete bowel prep, which included one full day of only clear liquids, as well as drinking two full bottles of magnesium citrate – one bottle at 3 p.m. and one bottle at 9 p.m. the day before surgery. To be honest, I was 100% clear after the first bottle and think that two bottles was overkill for me, because the morning of surgery I was still having to run to the bathroom every 5 minutes. I was also feeling super dehyrdated and the bowel prep was really uncomfortable, so I just think it would have been less uncomfortable if I had been able to stop after the first bottle. They also ask that you not drink the cherry flavored magnesium citrate, because the red coloring makes it difficult to tell if there is any blood in your digestive system, and it also sometimes just freaks people out.

I arrived at the hospital two hours before surgery, got checked in, and was taken back to the pre-op holding area, where my girlfriend-at-the-time was able to go back and sit with me. They didn’t start an IV until I was in the operating room, so they didn’t give me anything for pre-surgery anxiety, either. They were also HOURS behind schedule, so I was honestly not feeling too well between the latent bowel prep magic, being dehydrated, nauseous, and weak and dizzy. The pre-op holding rooms at Langone’s minimally invasive outpatient surgery unit are also TINY, and there are not even comfortable chairs, much less a stretcher to lie on – so I was sitting in those plastic chairs in a tiny closet-sized room for several hours waiting for my surgery.

When they finally took me into the OR, the anesthesiologist started an IV, and they put me out pretty quickly. My surgeon performed a robotically-assisted vaginal hysterectomy and salpingectomy (removal of the fallopian tubes) with removal of the cervix, however, my ovaries were not removed during this surgery since I wasn’t planning T at the time, and didn’t want to go into surgical menopause. I woke up in the recovery room, and was really in a lot of pain. They had to give me quite a bit of drugs to get the pain under control. I believe they gave me fentanyl and ketorolac, and maybe something else too… I was pretty out of it with all the drugs. My biggest complaint about this surgery experience was that my surgeon was very eager for me to go home that night, and I was definitely not ready to go home that night. I told the nurses and my surgeon that I didn’t feel well enough to go home, so they kept me for one night.

pca-pump

PCA pump that allowed me to deliver pain meds as needed.

Before they took me up to the floor where I was staying, they set me up with a PCA pump to keep my pain under control. They removed the PCA pump the next morning after I was up and walking around. My good buddy came to visit me that night after they sent me upstairs, and I made her sneak me some Haribo Cola gummy candies (which were my favorite at the time) because they wouldn’t let me eat solid foods until I left the hospital.

My nurses were absolutely amazing. I cannot remember their names at all, but they were these amazing, sweet Hasidic Jewish women and they were some of the best nurses I have ever had. They were kind, compassionate, and took absolutely incredible care of me. (Which is great, considering my partner of two years left me at the hospital by myself and went back home upstate. That’s another story…)

The doctors told me I would start to feel better around noon the day after surgery, and I felt so terrible that I really didn’t see how that would be possible, but sure enough, around noon, I turned a corner and started feeling much better. I was discharged from the hospital just after lunch, and grabbed a cab from the hospital to Penn Station where I took Amtrak to my girlfriend’s place up in Poughkeepsie.

The recovery

Truthfully, I bounce back from surgery pretty quickly, and the recovery from this surgery wasn’t nearly as bad as I thought it would be. In addition to the hysterectomy and salpingectomy, my surgeon also removed a small amount of endometriosis and did a cystoscopy to check for any endometriosis in the bladder. I was instructed not to lift anything over 5 lbs for 4-6 weeks, and not to exercise for the same amount of time. Although many people who have vaginal hysterectomies have residual bleeding after this surgery, I was lucky in that I only had light spotting for a day or two, and then nothing.

I was going out to dinner with friends the night after my surgery. I was cooking and doing light chores on the third day, and I was driving after about 4-5 days. I was prescribed Percocet 5/325, Ibuprofen 800mg, and Nucynta 50mg for post-op pain, which I took for about a week after surgery. I was able to sleep on my stomach again about a week and a half after surgery.

I attribute my short recovery period and smooth healing process to choosing a surgeon who could perform a robotic-assisted surgery. I had five tiny incision sites – one in my belly button, two above the belly button, and two below the belly button – none of which I can even see anymore, except the belly button one, and only because I have now had four incisions there from other surgies.

The benefits of having robotic surgery are great – shorter recovery time, less post-op pain, less blood loss, and many times less time spent under anesthesia. If you are considering a hysterectomy and are in an area where you can find a surgeon who performs robotic surgery, I highly advise choosing one who does. My hysterectomy recovery was easier and less painful than a more minor and less invasive surgery I had five months prior to my hysterectomy. By a lot.

Questions? Email me at rhysharper@gmail.com.