The Quest for Surgery

Be forewarned: I am about to launch into a whiny spiel about how stressful it has been meeting with trans-unaware OB-GYNs while I'm insured in hopes that they won't a) refer to me as a "post-menopausal woman" and b) will, at the very least, listen to me about my preventative interest in an oophorectomy (removal of ovaries) and a hysterectomy (removal of the uterus).

But before said spiel, a brief update is in order. As a reminder since it's been a minute, I am presently living in Maryland to complete my federal service "payback" as an NIH (National Institutes of Health) Undergraduate Scholarship post-baccalaureate (i.e. 4-year college graduate) research fellow. Throughout the duration of my payback I have been nervous about blogging after I signed a gazillion + 1 forms about not representing myself as the NIH or a federal employee.

So, quick disclaimer before I proceed: I am not blogging on behalf of the NIH or as a federal employee.

Alright, now with that all said and done, I have been living here since June. My adorable, elderly feline companion, Evilbunny of House Thomas, First of His Name, moved with me. He loves the fields of east coast green. When he first moved out here from the western desert that is Utah and went on his first walk, he was literally paralyzed by the seemingly endless grass and forest that he could venture into. He adjusted. Fast. Oh, and he turned 21-years-old in April!

Birthday Bunny!
And now on to OB-GYN shenanigans.

I finally got health insurance again last August after not having it throughout my years as an undergraduate student. As an uninsured student I had paid for my check-ups, blood work, hormone therapy, etc. out-of-pocket. And I was able to get top surgery through saving up and a bounty of donations from my amazing friends and family. Oophorectomies and hysterectomies don't happen out-of-pocket. At least not in my reality.

But I have been extremely concerned about not having these surgeries based on the information I have read.

So far I have seen two doctors, expressing my main concerns and why I desperately want this surgery. Which are:

1. Potential cancer risk. 

Some physicians recommend hysterectomy and oophorectomy within the first 5 years of starting testosterone therapy. There is concern that long-term testosterone treatment may cause the ovaries to develop similar symptoms as those seen in polycystic ovarian syndrome (PCOS), which has been linked to increased risk of endometrial hyperplasia and thus ovarian cancer.

There are conflicting theories about the effects of testosterone on gynecologic cancers (uterine and ovarian), primarily due to limited data. There are case reports about transgender men (check out this review) who have developed ovarian cancer and uterine cancer (a case report looks at individuals and aren't considered to be gold standards for evidence-based medicine and don't inherently indicate that testosterone therapy caused these cancers). But having what's generally considered to be "gold standard" evidence for such a small population is next to impossible for a couple of reasons. First, given that there are physicians recommending surgery within the first five years of hormone therapy, there isn't good long-term data in trans men who still have ovaries and a uterus. Further, to my knowledge there is no systematic data collection on this in the U.S. to contribute.

But the data that does exist is better than no data - and it's enough to compel me to believe that surgery is a good idea as a preventative measure. For instance, in 2009 the committees and members of The Endocrine Society, European Society of Endocrinology, European Society for Paediatric Endocrinology, Lawson Wilkins Pediatric Endocrine Society, and World Professional Association for Transgender Health all contributed to official practice guidelines for endocrine treatment of transsexual persons.

A couple of excerpts to note (there are citations in the paper):
(1) When FTM transsexual persons undergo hysterectomy, the uterus is small and there is endometrial atrophy. The androgen receptor has been reported to increase in the ovaries after long-term administration of testosterone, which may be an indication of increased risk of ovarian cancer. Cases of ovarian cancer have been reported. The relative safety of laparoscopic total hysterectomy argues for preventing the risks of reproductive tract cancers and other diseases through surgery.
(2) Given the discomfort that FTM transsexual persons experience accessing gynecological care, our recommendation for total hysterectomy and oophorectomy places a high value on eliminating the risks of female reproductive tract disease and cancer and a lower value on avoiding the risks of these surgical procedures (related to the surgery and to the potential undesirable health consequences of oophorectomy) and their associated costs.
To my understanding, the existing evidence does consistently suggest an increased risk of ovarian cancer - which is the deadliest of gynecologic cancers. Additionally, from what I understand about genetic risk (which isn't much), I am worried that I'm at a greater risk individually. While my mom has not had a BRCA test (inherited mutations in BRCA1 and BRCA2 increase the risk of breast and ovarian cancer) test yet, she presently has breast cancer.

On my mom's side of the family:
  1. My mom - presently has breast cancer and had a double mastectomy and hysterectomy.
  2. My grandma, Dolores - died of breast cancer in her early 70s. 
  3. My great grandma, Stella - never developed breast cancer and lived until 97. 
  4. Her mother, my great-great grandma Pauline - had breast cancer and a mastectomy. 
  5. Her mother, my great-great-great grandma Elizabeth - died from breast cancer when Pauline was 8 months old. 
And Elizabeth's mother died at the age of 44 and her mother died in her 30s. We don't know what from. From what I do know, that's five generations where every woman got breast cancer except for one - my great grandma Stella.

On my dad’s side of the family, his mother had osteosarcoma (bone cancer) when she was a child and her leg was amputated. And in her 40s, she was diagnosed with uterine cancer and got a hysterectomy. From my naive understanding of genetic risk, this doesn't look good.

2. Neglecting gynecological care

I really, really prefer prevention over waiting for potentially fatal symptoms and then doing something about it. This is particularly concerning because I know that I probably don't go in for exams as often as I should given how traumatic they are for me (e.g. pap smears). I am also concerned that I may not always have a trans-friendly OB-GYN who's willing to load me up on muscle relaxers and take over an hour to successfully do a pap smear. I have also heard that a pap smear isn't as effective as, say, a transvaginal sonogram for detecting ovarian issues. But, if a pap smear is so awful and difficult to accomplish for me, I can't imagine enduring a transvaginal sonogram. I had one scheduled last Friday, in fact, and canceled it. I just couldn't.

3. Liver damage

And lastly, I am slightly concerned about liver damage. At least according to my present doctor, administering such large doses of testosterone taxes my liver, which has to metabolize all of it. But after the removal of the ovaries, there is the potential (but not certainty) that my testosterone doses can be decreased because the ovaries are no longer producing estrogen.

In conclusion, I was really hoping to at least find a trans-friendly OB-GYN or to even have surgery while insured and prior to starting graduate school in August. Instead, I've only had appointments so far with doctors who have referred to me as being similar to a "post-menopausal woman". The last OB-GYN I visited about two weeks ago even had me point a mirror at my genitals during an invasive exam where he described to me (with a student present) how my "clitoris" is "enlarged" from hormone therapy, then went on about other aspects of my genital anatomy while he swabbed around and then threw in an anal exam to boot. Why? Ihavenoidea.

I have three insured months left and another appointment tomorrow. Not with an OB-GYN this time, but with someone at an LGBQT-friendly clinic that may be able to refer me to some other OB-GYNs. As a back-up plan, I do know about a couple of trans-friendly OB-GYNs back in Utah through word-of-mouth who I may have more luck with. Once insured there, that is.

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