To oophorectomy or not to oophorectomy?
February 8, 2017 2:11 AM Subscribe
I'm a female-to-male transgender individual. I've been considering total hysterectomy with oophorectomy for the past several years or so. After the recent election and out of fear of possible changes to our healthcare system/LBGT rights, I decided that I should pursue the surgery sooner rather than later. But now I'm having second thoughts based on how it may or may not affect my long-term health. Specifically bone health. Should I pursue surgery for gender affirmation and a decrease in some possible risks with a increase in others or postpone it?
My main concern is that I will be at high risk for osteoporosis without intact, functioning ovaries and the residual estrogen they continue to produce.
I attempted to pursue hysterectomy four years ago but was informed by my OB-GYN that it would make me at risk for osteoporosis even though I am taking testosterone. However, my endocrinologist and new OB-GYN (my previous one retired a year or two ago) state that testosterone and the subsequent aromatization into some estrogen will preserve my bone health.
On a mildly anxious whim I started looking up studies on osteoporosis in transgender/transsexual individuals, which pushed me into a higher level of anxiety than anticipated because the studies showed nothing concrete. A few studies showed that testosterone with the absence of ovaries and estrogen production protects bone mineral density (here's an example.) And a few studies showed that testosterone alone was not enough to maintain bone mineral density in individuals who had removal of the ovaries (like this one.) Arguably these studies were quite small sample sizes. Methods are lacking in some studies such as lab values throughout the studies, compliance with hormone therapy, etc. On top of it all, there are no long-term studies greater than 36 months that follow bone health in transgender individuals on testosterone. But, all in all, it leaves me feeling very concerned that removing my ovaries may be detrimental to my health in the long-term.
Other things to consider:
1. I'm 30-years-old. So, young enough to be concerned about putting myself into a possible bone loss state early.
2. I've been taking testosterone for approximately 11 years. I know that many providers recommend hysterectomies for transmasculine people after five years on testosterone due to risks of endometrium and ovarian cancers, but it has been recommended to me that a hysterectomy isn't necessary because studies (which there aren't many of those ones either, of course) haven't shown an increased risk. But, at over a decade on testosterone, things aren't like they once were.
3. I have significant cervical atrophy. It's to the point that all my pap smears in recent years have been inconclusive due to not enough sample tissue because I just don't have enough to give.. My OB-GYN is not concerned about my cervical health because too little cells is better than too many cells.
4. I've developed polycythemia in recent years, which can be a side affect of testosterone replacement. I keep it in control with therapeutic blood draws which is great for short-term maintenance but ideally a lower dose of testosterone would be a better option for the long-term. This could be obtained by this surgery.
5. Lastly - and this is the anxious, doomsday part of my brain talking - I'm concerning about the future. What if there is a testosterone shortage? Or a severe change in LBGT rights/healthcare and I am unable to take testosterone for a period of time? It would unhealthy to be without either hormone for an extended state, and it would be beneficial to be able to fall back on my ovaries if such a scenario actually occurred.
I'm just looking for input from anyone who either has experience with hysterectomies, osteoporosis, being transgender and having this surgery done, interpreting research studies, has a better understanding than I on the mechanics of bone health, or just has a word of advice.
My main concern is that I will be at high risk for osteoporosis without intact, functioning ovaries and the residual estrogen they continue to produce.
I attempted to pursue hysterectomy four years ago but was informed by my OB-GYN that it would make me at risk for osteoporosis even though I am taking testosterone. However, my endocrinologist and new OB-GYN (my previous one retired a year or two ago) state that testosterone and the subsequent aromatization into some estrogen will preserve my bone health.
On a mildly anxious whim I started looking up studies on osteoporosis in transgender/transsexual individuals, which pushed me into a higher level of anxiety than anticipated because the studies showed nothing concrete. A few studies showed that testosterone with the absence of ovaries and estrogen production protects bone mineral density (here's an example.) And a few studies showed that testosterone alone was not enough to maintain bone mineral density in individuals who had removal of the ovaries (like this one.) Arguably these studies were quite small sample sizes. Methods are lacking in some studies such as lab values throughout the studies, compliance with hormone therapy, etc. On top of it all, there are no long-term studies greater than 36 months that follow bone health in transgender individuals on testosterone. But, all in all, it leaves me feeling very concerned that removing my ovaries may be detrimental to my health in the long-term.
Other things to consider:
1. I'm 30-years-old. So, young enough to be concerned about putting myself into a possible bone loss state early.
2. I've been taking testosterone for approximately 11 years. I know that many providers recommend hysterectomies for transmasculine people after five years on testosterone due to risks of endometrium and ovarian cancers, but it has been recommended to me that a hysterectomy isn't necessary because studies (which there aren't many of those ones either, of course) haven't shown an increased risk. But, at over a decade on testosterone, things aren't like they once were.
3. I have significant cervical atrophy. It's to the point that all my pap smears in recent years have been inconclusive due to not enough sample tissue because I just don't have enough to give.. My OB-GYN is not concerned about my cervical health because too little cells is better than too many cells.
4. I've developed polycythemia in recent years, which can be a side affect of testosterone replacement. I keep it in control with therapeutic blood draws which is great for short-term maintenance but ideally a lower dose of testosterone would be a better option for the long-term. This could be obtained by this surgery.
5. Lastly - and this is the anxious, doomsday part of my brain talking - I'm concerning about the future. What if there is a testosterone shortage? Or a severe change in LBGT rights/healthcare and I am unable to take testosterone for a period of time? It would unhealthy to be without either hormone for an extended state, and it would be beneficial to be able to fall back on my ovaries if such a scenario actually occurred.
I'm just looking for input from anyone who either has experience with hysterectomies, osteoporosis, being transgender and having this surgery done, interpreting research studies, has a better understanding than I on the mechanics of bone health, or just has a word of advice.
Response by poster: So that's where the LJ community went to... Thanks for the recommendation; I made myself an account and posted. I also appreciate your thoughts on the subject.
posted by Thirty7Degrees at 6:08 AM on February 8, 2017
posted by Thirty7Degrees at 6:08 AM on February 8, 2017
So you really don't say why you want the oophorectomy at all - is it the increased risk of cancer? Dysphoria from having them?
The pap smear issue can be resolved by the total hysterectomy alone. You can get a bone density test to see where you're at (my endo required one before starting T to get a baseline).
As far as T shortage/denial - what hoyland said about shortages. But remember that cis guys are also prescribed T and the old white guys in office are very unlikely to stop that (as well as Big Pharma). So if your documentation is in order I'm not sure how they would differentiate you from a cis dude seeking low T treatment.
Ask for a copy of your medical records and see if GID/GD is in there, and if it can be removed. If you live in a state where you can change your BC, do it. I assume your DL and passport are already changed. I plan to go as stealth as I can on paper - I don't think they will be rounding up trans people based on Internet history.
(I had a total hysterectomy years ago for non-trans related reasons but no oophorectomy. I've been on T for a little over a year. No one has suggested a future oophorectomy.)
posted by AFABulous at 6:27 AM on February 8, 2017
The pap smear issue can be resolved by the total hysterectomy alone. You can get a bone density test to see where you're at (my endo required one before starting T to get a baseline).
As far as T shortage/denial - what hoyland said about shortages. But remember that cis guys are also prescribed T and the old white guys in office are very unlikely to stop that (as well as Big Pharma). So if your documentation is in order I'm not sure how they would differentiate you from a cis dude seeking low T treatment.
Ask for a copy of your medical records and see if GID/GD is in there, and if it can be removed. If you live in a state where you can change your BC, do it. I assume your DL and passport are already changed. I plan to go as stealth as I can on paper - I don't think they will be rounding up trans people based on Internet history.
(I had a total hysterectomy years ago for non-trans related reasons but no oophorectomy. I've been on T for a little over a year. No one has suggested a future oophorectomy.)
posted by AFABulous at 6:27 AM on February 8, 2017
Response by poster: I wasn't clear in my post on why I would like to pursue oophorectomy. One reason is because I've been polycythemic in recent years and a major possible benefit to oophorectomy would be lowering of my testosterone dose. I recognize that it isn't guaranteed; it seems many individuals require the same dose or a higher dose post-hysto and oophorectomy.
A second reason would be the decreased risk of cancer, even if it is slim.
And a third, although most minor reason, would be mild dysphoria from having them. It has gotten better over time, so it wouldn't be the only reason why I'd pursue surgical intervention at this point.
My OBGYN is pretty adamant that I don't opt to keep my ovaries, as it is "counterproductive" to hormone therapy. I plan to talk further with her about my options, even if it is retaining one of them.
Unfortunately, I'm from a state where I'm unable to change my BC. My DL and passport are changed, so no worries there.
posted by Thirty7Degrees at 6:38 AM on February 8, 2017
A second reason would be the decreased risk of cancer, even if it is slim.
And a third, although most minor reason, would be mild dysphoria from having them. It has gotten better over time, so it wouldn't be the only reason why I'd pursue surgical intervention at this point.
My OBGYN is pretty adamant that I don't opt to keep my ovaries, as it is "counterproductive" to hormone therapy. I plan to talk further with her about my options, even if it is retaining one of them.
Unfortunately, I'm from a state where I'm unable to change my BC. My DL and passport are changed, so no worries there.
posted by Thirty7Degrees at 6:38 AM on February 8, 2017
There are a lot of FB groups for trans people that might be helpful to you -- a friend of mine is in several including Association of Transgender Professionals, Trans Role Models, and TransMentors International. I know he has garnered a lot of support from those groups and others. It's not clear to me how much support you have from other trans persons, but if you wanted to be put in touch w/ my friend I'd be happy to do it.
posted by Medieval Maven at 7:45 AM on February 8, 2017
posted by Medieval Maven at 7:45 AM on February 8, 2017
I had a TLH-BSO a couple years ago, in my late 30s, so no ovaries either. I can't speak to the part of your question regarding T, & I do take estrogen, but as far as osteoporosis, I had the impression that weight-bearing exercise was very important. I take calcium as well at the advice of the clinic where I had my hysto. Not sure if this would be enough to override not having estrogen, but afaik the exercise portion of the picture is important.
posted by diffuse at 9:42 AM on February 8, 2017 [1 favorite]
posted by diffuse at 9:42 AM on February 8, 2017 [1 favorite]
I'm a cis female, but I did have a complete hysterectomy oophorectomy when I was about your age. (cancer)
Despite HRT, calcium supplements, and weight bearing exercise, I did develop osteoporosis and racked up a bunch of fractures. The only reason I'm sharing my experience, given that so much of it is different from yours, is that I've had a "happy ending" in that since I started Prolia a little over a year ago, my bone density scans have improved with no more fractures.
Grain of salt, etc.
posted by The Underpants Monster at 2:40 PM on February 8, 2017 [1 favorite]
Despite HRT, calcium supplements, and weight bearing exercise, I did develop osteoporosis and racked up a bunch of fractures. The only reason I'm sharing my experience, given that so much of it is different from yours, is that I've had a "happy ending" in that since I started Prolia a little over a year ago, my bone density scans have improved with no more fractures.
Grain of salt, etc.
posted by The Underpants Monster at 2:40 PM on February 8, 2017 [1 favorite]
You could also consider your other risk factors for osteoporosis- do you have a family history? are you caucasian? do you weigh less than or close to #120? do you or have you smoked cigarettes? do you or have you in the past eaten a diet low in calcium (i.e. dairy)? Are you sedentary or do you do lots of weight-bearing exercise?
these things can make a difference. Also a DEXA is apparently pretty inexpensive out of pocket (people get them for body fat measurement) and not a whole ton of excess radiation, so you could consider getting a baseline level now to see where you're at.
posted by genmonster at 6:05 PM on February 8, 2017
these things can make a difference. Also a DEXA is apparently pretty inexpensive out of pocket (people get them for body fat measurement) and not a whole ton of excess radiation, so you could consider getting a baseline level now to see where you're at.
posted by genmonster at 6:05 PM on February 8, 2017
Response by poster: Coming back to this post to report that I decided to not pursue this surgery at this time. I may consider hysterectomy only at a later date, but I feel that keeping my ovaries is probably best for my age despite testosterone. Thanks for all your responses!
posted by Thirty7Degrees at 6:46 PM on December 28, 2017
posted by Thirty7Degrees at 6:46 PM on December 28, 2017
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A few thoughts: Like you, I've been told that, barring specific issues arising or a family history of reproductive cancers, there's no particular (for lack of a better term) prophylactic need for a hysterectomy after N years on testosterone, assuming you actually go for pap smears, which it sounds like you do and your gynecologist doesn't consider the results/lack thereof to be a compelling reason for a hysterectomy. (This was from doctors I trust to be up-to-date. Their primary concern was the risks inherent in any surgery, not bone health. The equation obviously changes if a hysterectomy is a transition goal/need for you.) You do have the option of retaining one or both ovaries--once in a blue moon someone online mentions having gone that route in case they lose access to testosterone.
Drug shortages do occur (I believe injectable estrogen is hard to come by at the moment) and I think injectable testosterone has experienced shortages in Canada (but not the US that I remember, despite the fact you'd think they'd share a supply chain). Typically, people shift to some other form, but, of course, that assumes you can afford it, which basically assumes insurance coverage for topicals. (Yes, there's ethanate vs cypionate, but it would in no way surprise me if they share a production line and if one has a shortage the other might as well.)
The question of reduced dosage without ovaries probably warrants an informal survey on somewhere like r/ftm, if you don't know enough people personally to just ask around or haven't done so already. My impression was that it's the common outcome, but not guaranteed (with some people have no change and some people needing to increase their dose).
posted by hoyland at 4:27 AM on February 8, 2017 [3 favorites]