Susan's Place Transgender Resources

Hi ladies,

I'm going to tread very carefully on how I express this as I want to be clear that a person's physical wellbeing and safety is incredibly important, this includes their psychological and hormonal state.

Current guidelines in the UK are that anyone undergoing GRS vaginoplasty or vulvoplasty should cease hormone treatment for six weeks prior to the surgery. I believe this is following WPATH guidelines. This is to lessen the risk of a deep-vein thrombosis.

My understanding is that this is based on historic data collated around oral contraceptive estrogen and specifically old-fashioned conjugated estrogen like premarin.

Is there any scientific data surrounding more contemporary estrogens and, specifically, estrogen gels? My understanding, which I have read here on Susan's, is that the gel form of estrogen is much less of a DVT risk?

The question raises itself particularly for someone like me who has had a prior orchidectomy and who therefore has no naturally occurring hormones at all. Having once gone nearly a week without anything and discovered that the experience is living hell, the idea of six weeks on nothing is not funny.

Just as I've phrased this carefully I'd ask that replies are also careful. The last thing I would want to do is encourage anyone in an unsafe direction. I am specifically asking about data on DVT using gels and to appreciate why I'm asking it.

I also should add that I'm very physically fit and active with a low BMI.

p.s. By the way, what happens if you've had an estrogen injection and you're then called for surgery?!

Quote from: Tills on October 12, 2024, 03:26:38 AMMy understanding is that this is based on historic data collated around oral contraceptive estrogen and specifically old-fashioned conjugated estrogen like premarin.

There's sense to the guideline. The risk of DVT in people on medicated oestrogen is slightly raised compared to people who are not, witness my daughter who had a minor clot while taking contraception. However, when someone has surgery, they are given a muscle relaxant and lie as a deadweight on the operating table and then are less mobile for a while after - which raises the risk of DVT dramatically.

The combination of having surgery and taking oestrogen ratchets the risk up.

If you had a DVT per or post operatively, the biggest risk is pulmonary embolus - a bit of clot getting loose. DVTs form in veins, which return their flow to the heart, which then sends the blood into your lungs. If a big enough clot ends up there, the release of kinins can be fatal. However if you had a DVT which didn't embolise, you would have to take an anticoagulant for a period of time and a history of venous thromboembolism would contraindicate the use of further oestrogen (https://bnf.nice.org.uk/drugs/estradiol/).

The contraindication applies to gels, patches and oral use. Any form of oestrogen, in other words.

If you've had an oestrogen injection, the chances are most surgeons would delay surgery until you were due your next shot, skip that dose and do the surgery six weeks later.

I feel for you because I fully understand your dread of coming off oestrogen, but withdrawing for six weels prior to surgery and a period afterward would be as nothing compared to never being able to take it again.

My surgery was done in the US back in June. The doctor did not require stopping my Estradiol injections. Though my Endo wanted me to stop Progesterone for a few weeks prior. I was told to not take any meds, like my migraine pills that hindered clotting or any over the counter pain meds that thinned my blood.

Quote from: Gina P on October 12, 2024, 07:27:49 AMMy surgery was done in the US back in June. The doctor did not require stopping my Estradiol injections. Though my Endo wanted me to stop Progesterone for a few weeks prior. I was told to not take any meds, like my migraine pills that hindered clotting or any over the counter pain meds that thinned my blood.

Interesting, practice in the US is often different to the UK, but for major surgery the DVT risk and the chance their patient might no longer be able to take oestrogens would be at the front of many surgeon's minds here.

This is one of those areas where the guidelines desperately need aligning. The quote from Standards of Care for the Health of Transgender and Gender Diverse People Version 8 (on S125) is:

'After careful examination, investigators have found no perioperative increase in the rate of VTE [DVT] among transgender individuals undergoing surgery, while being maintained on sex steroid treatment throughout when compared with that among patients whose sex steroid treatment was discontinued preoperatively (Gaither et al., 2018; Hembree et al., 2009; Kozato et al., 2021; Prince & Safer, 2020).

So depending on which guideline a surgeon follows and which country you are in, the answer may be 'yes, it's fine, carry on,' or 'no, you have to stop.'

But the reasons I've given are the reasons why Tills has read what she has. I haven't checked the quality of the trials quoted above, but since someone in her position is taking no higher a level of oestrogen than a cis woman of say 40 would naturally have, in theory the operative risk shouldn't be any higher for her just because she is taking her oestrogen as medication. As a caveat, I would add that logic and RCTs don't always find the same answers but Tills, you can quote those papers at your surgeon and see what response you get.

Even so, if the guideline is embraced at unit level, then he or she may be out of wiggle room even if they accept what those papers evidence. Worth a go tho!

I guess I better make it clear that the 'Standards of Care...version 8' is the WPATH guideline. The ref is:

Coleman, E., Asa Radix, Walter Bouman, George Brown, Annelou Vries, M. Deutsch, Randi Ettner, et al. "Standards of Care for the Health of Transgender and Gender Diverse People, Version 8." International Journal of Transgender Health 23 (2022): S1-S259.

The snippet I quote is on S125.

This is so interesting (to me anyway!). Thank you for superb replies.

I'm trying to think what I did, or was required to do, in Thailand when I had 9.5 hour General Anaesthetic for Full Facial Surgery. I am 100% sure it wasn't 6 weeks without anything. I seem to think it was around a week prior to surgery.

I do in fact also take a micro dose of testogel a day - a 'petit pois' sized amount - but I also would not want to start taking more T.

I'm sure I read on Susan's from a post a long way back that DVT risk is a lot lower for exogenous estrogen application and that evidence points to contra-indication in oral contraception and the specific metabolisation through the liver? But maybe I'm now imagining that. Or it's wishful thinking  :D

p.s. In terms of the safety the fact that I'm having a vulvoplasty following a prior orchidectomy should mean the operation takes no more than 2-3 hours which helps matters.

As @TanyaG points out, the longer you're a deadweight on the table the higher the risk.

xx

As you pointed out earlier, the big scare of blood clots and DVT came from the Women's Health Initiative study. It was a good study and we learned much from it. But from our perspective, there were many flaws:

The study's intent was to see if combining a synthetic progestin with Premarin would improve the cardiovascular health in post-menopausal women.

Out of the thousands of women who participated in the study, not one of them was transgender.

Subsequent studies revealed the risks came from using Conjugated Equine Estrogens (Premarin) obtained from horses. (Horse estrogens are not bioidentical to human estrogens.)

Subsequent studies revealed the risks came from using synthetic progestins and not bio-identical progesterone.

The US Food & Drug Administration hit the panic button and stopped the study due to high incidence of cancer, blood clots, stroke, etc. and issued warnings that ALL exogenous estrogens caused the risk. This myth has been propagated through various websites like WebMD and drug reference websites.

Current US protocols do not prescribe Premarin, instead opting for bioidentical estrogen. Oral tabs cause lower serum levels because of first-pass through the liver, thus a higher dose is needed to achieve the goal. Prescribers still believe the myth that higher levels of estrogen cause a higher risk of complications. If that were true, then pregant women all over the world would be diagnosed with cancers, blood clots, etc. because during pregancy estrogen and progesterone levels increase to high levels to protect the uterus and prepare the breasts for breastfeeding.

Many prescribers are still gun-shy about adding progesterone due to "risks" that do not exist, for the same reason as stated above. I spent years arguing with my VA Endocrinologist about adding progesterone. She claimed that the Endocrinology Guidelines to do not recommend it. So I sent her some information to consider.

I agree with TanyaG that the risk is due to being immobile for a long time, but it is not due to hormones, unless you have a family or personal history of such risks. It is up to us to educate our providers. They don't have time to keep up with all the studies and go by guidelines that become outdated within a few years.

Part of the problem is that warnings about certain hormone therapies is their effects on the uterus, as that is where many of the cancers were occuring. Obviously, that is not a consideration for those of us born without a uterus. But many providers do not dig into the reasons why a warning was issued, and some lack common sense enough to understand that pregnant women do not have these risks and we are taking the same hormones that are identical to those produced by human ovaries.

Sources:

Progesterone Is Important for Transgender Women's Therapy—Applying Evidence for the Benefits of Progesterone in Ciswomen (https://academic.oup.com/jcem/article/104/4/1181/5270376)

Risks and Benefits of Estrogen Plus Progestin in Healthy Postmenopausal Women Principal Results From the Women's Health Initiative Randomized Controlled Trial (https://jamanetwork.com/journals/jama/fullarticle/195120)

Effects of Hormones and Hormone Therapy on Breast Tissue in Transgender Patients: A Concise Review (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7252590/)

The easiest way through this will be to ask your surgeon's secretary to provide you with a copy of this part of their guideline and to confirm which one they are following - you've written you believe it is WPATH, but that may not be so. That'll remove any uncertainty and will let you either get on with your life without further worry, or leave you knowing you will need to discuss it further.

One way of developing a rapport with them will be to say something like, 'I know your entire life is surrounded by guidelines which seem to change every week, and I know that organisations like the CQC are on your back over compliance, but this particular bit of treatment is incredibly important to me, and with your help I'm trying to plot my way through this so I don't dissolve into a heap.'

You'll strike a chord with them and you may create a friend by acknowledging their relationship with guidelines is every bit as hard as yours. If someone in the UK is accredited at a level where they can do the surgery you are having, their bedtime reading will be research. Good surgeons tend to lack conversation because they only read the journals :-)

The University of California San Francisco goes into this in detail (link to paper below):

"There is no evidence to suggest that transgender women who lack specific risk factors (smoking, personal or family history, excessive doses or use of synthetic estrogens) must cease estrogen therapy before and after surgical procedures, in particular with appropriate use of prophylaxis and an informed consent discussion of the pros and cons of discontinuing hormone therapy during this time. Possible alternatives include using a lower dose of estrogen, and/or changing to a transdermal route if not already in use.[62]"

link : https://transcare.ucsf.edu/guidelines/feminizing-hormone-therapy

Hugs,

Allie

Quote from: Tills on October 12, 2024, 03:26:38 AMp.s. By the way, what happens if you've had an estrogen injection and you're then called for surgery?!

Normally break period depends on the form of estrogen used and the frequency. Generally, a gap of two weeks is what doctors ask. I would defer to those with more medical knowledge, but what happens would greatly depend on the surgeon, your health, and how comfortable the surgeon is with the period being shorter. I know my surgeon post surgery started us back on estrogen quickly. If you are already scheduled with a particular surgeon I would ask the surgeon and his nurses the question. Hugs
Mariah

Quote from: Lori Dee on October 12, 2024, 12:18:36 PMAs you pointed out earlier, the big scare of blood clots and DVT came from the Women's Health Initiative study. It was a good study and we learned much from it. But from our perspective, there were many flaws:

The study's intent was to see if combining a synthetic progestin with Premarin would improve the cardiovascular health in post-menopausal women.

Out of the thousands of women who participated in the study, not one of them was transgender.

Subsequent studies revealed the risks came from using Conjugated Equine Estrogens (Premarin) obtained from horses. (Horse estrogens are not bioidentical to human estrogens.)

Subsequent studies revealed the risks came from using synthetic progestins and not bio-identical progesterone.

The US Food & Drug Administration hit the panic button and stopped the study due to high incidence of cancer, blood clots, stroke, etc. and issued warnings that ALL exogenous estrogens caused the risk. This myth has been propagated through various websites like WebMD and drug reference websites.

Current US protocols do not prescribe Premarin, instead opting for bioidentical estrogen. Oral tabs cause lower serum levels because of first-pass through the liver, thus a higher dose is needed to achieve the goal. Prescribers still believe the myth that higher levels of estrogen cause a higher risk of complications. If that were true, then pregant women all over the world would be diagnosed with cancers, blood clots, etc. because during pregancy estrogen and progesterone levels increase to high levels to protect the uterus and prepare the breasts for breastfeeding.

Many prescribers are still gun-shy about adding progesterone due to "risks" that do not exist, for the same reason as stated above. I spent years arguing with my VA Endocrinologist about adding progesterone. She claimed that the Endocrinology Guidelines to do not recommend it. So I sent her some information to consider.

I agree with TanyaG that the risk is due to being immobile for a long time, but it is not due to hormones, unless you have a family or personal history of such risks. It is up to us to educate our providers. They don't have time to keep up with all the studies and go by guidelines that become outdated within a few years.

Part of the problem is that warnings about certain hormone therapies is their effects on the uterus, as that is where many of the cancers were occuring. Obviously, that is not a consideration for those of us born without a uterus. But many providers do not dig into the reasons why a warning was issued, and some lack common sense enough to understand that pregnant women do not have these risks and we are taking the same hormones that are identical to those produced by human ovaries.

Sources:

Progesterone Is Important for Transgender Women's Therapy—Applying Evidence for the Benefits of Progesterone in Ciswomen (https://academic.oup.com/jcem/article/104/4/1181/5270376)

Risks and Benefits of Estrogen Plus Progestin in Healthy Postmenopausal Women Principal Results From the Women's Health Initiative Randomized Controlled Trial (https://jamanetwork.com/journals/jama/fullarticle/195120)

Effects of Hormones and Hormone Therapy on Breast Tissue in Transgender Patients: A Concise Review (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7252590/)

This is such a helpful reply Lori Dee, thank you. Likewise to Allie Jayne and Mariah for the links. I also appreciate Tanya's reasons for caution and safety too.

I knew there were serious question marks around why the recommendation exists but couldn't recall why, nor the details, so it's incredibly helpful to have the links, which will lead to further links, so that I can discuss this with my surgeon when the time comes. In answer to Tanya's question, the UK policy is 6 weeks, which all NHS-funded centres state in their guidelines.

I've trod very carefully here because as I mentioned, the last thing I'd want is to encourage anyone else down an unsafe path. However for me personally, the thought of going six weeks without any hormones at all, when my body no longer produces anything, is 'sub-optimal'. I once went a week with nothing and it was hell on earth. At the time I would rather have ended my life, it was that bad. I will do this for six weeks if I think there's a sound reason, and they're adamant about it, but I'm left questioning the scientific basis for what I'm tempted to call scaremongering in our case.

It's all very well sounding a note of caution, and no surgeon wants to see a patient seriously ill or worse through getting a DVT, but there does need to be a balance here in an otherwise fit and healthy patient who is taking something like an estrogen gel, for which there is no proven added risk factor.

Definitely a conversation to be had with my team although I don't want an argument with anyone around this. A gentle questioning, that's all.

p.s. the point about pregnancy is also such a good one, which I'd been wondering about. I mean what about women undergoing caesarean sections who are then confined to bed rest? Their estrogen levels will be through the roof.

From Lori Dee's link, this seems pretty important:

'Data from studies of menopausal women suggest no increased risk of venous thromboembolism with the use of transdermal estradiol.[44] There are some data suggestive of increased thrombogenicity and cardiovascular risk when conjugated equine estrogens (Premarin) are used.[1,2] Data on the risk associated with oral 17-beta estradiol are mixed, with some suggesting no increased risk and others suggesting a 2.5 - 4 fold increased risk.[20,44] Even in the case of a 2.5 fold increase, the background rate for VTE in the general population is very low (1 in 1000 to 1 in 10,000), so the absolute risk increase is minimal.[3] '

And it concludes, pretty decisively:

'No direct study of the risk of perioperative venous thromboembolism in users of bioidentical estrogens has been conducted. Guidelines from two British professional organizations make a weak recommendation to discontinue menopausal hormone therapy in the perioperative period , however both acknowledge that this may not be needed in the setting of proper prophylaxis (i.e. heparin or compression devices).[58] Studies of perioperative ethinyl estradiol in users of hormonal contraception have mixed findings and are wrought with confounding and methodological limitations.[59] Many surgeons insist that transgender women discontinue estrogen for several weeks before and after any gender affirming procedure.[60,61] These recommendations may appear as benign to the surgeon; however to the transgender woman undergoing a life and body-altering procedure simultaneous with gonadectomy, sudden and prolonged complete withdrawal of estrogens can have a profound impact. Postoperative depression is a nontrivial concern and may have some basis in the drastic hormone shifts, including cessation of estrogens, experienced in the perioperative period. There is no evidence to suggest that transgender women who lack specific risk factors (smoking, personal or family history, excessive doses or use of synthetic estrogens) must cease estrogen therapy before and after surgical procedures, in particular with appropriate use of prophylaxis and an informed consent discussion of the pros and cons of discontinuing hormone therapy during this time. Possible alternatives include using a lower dose of estrogen, and/or changing to a transdermal route if not already in use .[62]'

The idea of prophylactic heparin is an interesting one. I might raise that but the problem will be the impasses of the 6-week British guideline, even though it's based on pseudo-science or no science at all.

As the article points out, 'However to the transgender woman undergoing a life and body-altering procedure simultaneous with gonadectomy, sudden and prolonged complete withdrawal of estrogens can have a profound impact. Postoperative depression is a nontrivial concern and may have some basis in the drastic hormone shifts.'

See, Canonico M, Plu-Bureau G, Lowe G, Scarabin PY. Hormone replacement therapy and risk of venous thromboembolism in postmenopausal women: systematic review and meta-analysis. Bmj. 2008;336(7655):1227.

Quote from: Tills on October 12, 2024, 11:30:58 PM...which all NHS-funded centres state in their guidelines

This will be the issue for the surgeon. His accreditation and malpractice insurance depends on following the guidelines, which his trust will have adopted after a cascade down from region and ultimately NHS England. Right now everyone is a bit jittery because the Cass review underlined how wobbly the evidence is for many GAMC interventions, right down to how WPATH validates itself through quoting other guidelines which are derived from WPATH. It is a mess and while evidence is being firmed up will remain so. Hence my suggestion it is better to explore areas of common ground with your surgeon, develop your working relationship and explaining your fears before moving on to hitting him with papers.

Quote from: Tills on October 12, 2024, 11:30:58 PMt's all very well sounding a note of caution, and no surgeon wants to see a patient seriously ill or worse through getting a DVT, but there does need to be a balance here in an otherwise fit and healthy patient who is taking something like an estrogen gel, for which there is no proven added risk factor.

This is the core of it because your surgeon will be thinking how if a DVT happens, it will can oestrogen treatment for you. And with the best will in the world, extrapolating from studies on hormones taken by people born with ovaries to people born with testes isn't scientifically viable. It may well be the response is the same, but it may not be. Forty years of medicine taught me that just because a thing logically seems so, doesn't mean to say it is so. But in this case the guideline evidence for cessation of treatment is based on a weak case so that evens things up a lot.

Quote from: Tills on October 12, 2024, 11:30:58 PMI mean what about women undergoing caesarean sections who are then confined to bed rest? Their estrogen levels will be through the roof.

That's a different situation. In an emergency CS, the operation is to save the child (and sometimes the mother) so ideal scenarios go out the window. In an elective CS, there is no way of turning the mother's ovaries off without damaging the foetus, so from a hormonal point of view, it is the same situation.

Building rapport while being well-informed enough to question gently will get you a long way.

Quote from: Tills on October 12, 2024, 11:54:33 PMNo direct study of the risk of perioperative venous thromboembolism in users of bioidentical estrogens has been conducted.

This is the killer. There is no evidence, and when there is no evidence, the fall back is most often on continuing current practice, until evidence is available.

Quality of evidence is a cascade with expert opinion down the bottom, rising through case-controlled studies, cohort studies, randomised controlled trials (RCTs) and at the top, systematic reviews and meta-analysis. RCTs are like swallows - one does not make a summer - because at the 5% level one in 20 will be wrong and flaws in study design drive that figure higher. Guidelines are at their strongest when evidenced by systematic reviews and meta-analyses. GAMC has a long way to go on that.

I'm writing this to let you get inside the minds of the team caring for you, because knowing this will help you get under their skin.

Medicine taught me how things which are taken for granted today can crumble to dust tomorrow. When I was at medical school, the gold standard for treating peptic ulcer was partial gastrectomy or highly selective vagotomy. We spent hours learning about those and assisting in procedures (holding a retractor is soooo boring.) Two years after I qualified, those two procedures were almost unknown because H2 antagonists had come on the market. A decade or so after that, H2s died the death because of PPIs. Medicine moves relentlessly forward and so will GAMC. Take heart from this.

Quote from: TanyaG on October 13, 2024, 03:49:35 AMThis will be the issue for the surgeon. His accreditation and malpractice insurance depends on following the guidelines, [...] develop your working relationship and explaining your fears before moving on to hitting him with papers.

Hi Tanya, I appreciate where you are coming from with notes of caution, based on your medical experience, as well as what happened with your daughter, which sounds scary.

I don't want to split hairs here but I don't think I said my surgeon is male? Sorry, but I just don't want anyone to slip into that instant picture in their minds of surgeon = a man. As it happens the location I've requested has one male and one female surgeon on the current team. Both have excellent reputations. In lots of ways I prefer the idea of a cis woman shaping my vagina and it may well be that she is the one I opt for if her diary permits.

Quote from: TanyaG on October 13, 2024, 03:49:35 AMExtrapolating from studies on hormones taken by people born with ovaries to people born with testes isn't scientifically viable.

Not sure this entirely stacks up or is a very sound argument. Lots of cis women have had to undergo hysterectomies or (like my sister) or oophorectomies.

But besides I find this argument a bit, well, lazy. Hormonally speaking there are so many shades and nuances in the population, including amongst transgendered people, that what you're born with to how you are 50 years later after various treatments has little relevance, especially if a decade earlier you had testicles removed. It's just too sloppy to revert to 'cis' status - the sort of thing CASS lazily did.

Quote from: TanyaG on October 13, 2024, 03:49:35 AMThere's sense to the guideline. The risk of DVT in people on medicated oestrogen is slightly raised compared to people who are not,

The contraindication applies to gels, patches and oral use. Any form of oestrogen, in other words.

I've just put back your original reply to this thread because this is where some of the problem lies. The contraindications clearly does not apply to gels or patches nor to any form of oestrogen. It was specifically based on a study of conjugated estrogens, specifically premarin.

It does not appear to be the case that the risk of DVT in people on medicated transdermal oestrogen is slightly raised compared to people who are not, as per the scientific links above.

So I suggest that, overall, it is wrong to state that there is sense to the guideline.

Please don't take this reply as being argumentative. I genuinely appreciate your careful input. I'm just trying to advance our understanding, and mine certainly has through this incredibly helpful debate.

xx

Quote from: Tills on October 13, 2024, 05:04:30 AMI've just put back your original reply to this thread because this is where some of the problem lies. The contraindications clearly does not apply to gels or patches nor to any form of oestrogen. It was specifically based on a study of conjugated estrogens, specifically premarin.

I'm with you here, but the contraindication is in the British National Formulary, which is based on the drug datasheets and their licensing data. This is where it gets complex - the guidelines don't cover everything. Until that contradindication is removed from the BNF prescribing oestrogen to someone who has had a DVT leaves no chance of defending a malpractice suit.

To put that into perspective, I and my partner are fairly unique in that neither of us were sued even once in a combined 80 years of medical practice, but while the pair of us didn't always stick to the letter of the law, we always had strong, trust-based relationships with our patients.

I would bend the rules for someone I was confident understood what they were potentially getting into, but I always made copious notes and I never, ever did it for someone who quoted me a single RCT, or a treatment with a single evangelical behind it, because I saw those bite patients too often. Twice I had people who 'forgot' they'd pushed for a form of treatment that went wrong with them and twice I showed them my notes recording what they had said and understood and their signature under that.

My comments about drug side effects in people who were born with ovaries and people who were born with testes is that they have sexually matured with such a completely different hormonal environment that you see different responses to some medications in cis men and women. It may be that that doesn't apply here, but my point is that we do not know because we don't have enough good quality research. It may be that the coagulation response in people born with testes who have had orchidectomy and then been put on oestrogen is the same as pre-menopausal women, or it may not. Right now, no-one can stand up in a court of law and say either way.

While these are notes of caution, they are there to help you understand what your team will be thinking and how they think. If you don't have a feel for that, then negotiating with them will be more difficult than it should be and you have a vested interest in them making as few difficulties for you as possible.

Find the common ground you have with your surgeon and work to expand it - you'll be surprised what you get.

Quote from: TanyaG on October 13, 2024, 05:23:44 AMI'm with you here, but the contraindication is in the British National Formulary, which is based on the drug datasheets and their licensing data. This is where it gets complex - the guidelines don't cover everything. Until that contradindication is removed from the BNF prescribing oestrogen to someone who has had a DVT leaves no chance of defending a malpractice suit.

Hang on. The contra-indication listed in BNF is a generalised one about DVT risk with estradiol, mostly focused around prior history of DVT. It's not written about surgery and in fact says nothing about requirements for surgery. There is no specific contra-indication in BNF about estradiol use and surgeries. This is what it says:

Contra-indications For estradiol
Active arterial thromboembolic disease (e.g. angina or myocardial infarction); history of breast cancer; history of venous thromboembolism; oestrogen-dependent cancer; recent arterial thromboembolic disease (e.g. angina or myocardial infarction); thrombophilic disorder; undiagnosed vaginal bleeding; untreated endometrial hyperplasia.

Quote from: TanyaG on October 13, 2024, 05:23:44 AMMy comments about drug side effects in people who were born with ovaries and people who were born with testes is that they have sexually matured with such a completely different hormonal environment that you see different responses to some medications in cis men and women.

We need to be careful here not to make assumptions, especially if they buy into the current simplistic "biological sex" binary zeitgeist beloved of trans-haters. As just one example, I was born with a cyto-chromosome rearrangement* in CYP19A1 that means that all through my life testosterone has been converting to estrogen through the aromatase. I literally had sky-high levels of estradiol, way into female range, when I wasn't taking a single drop of estrogen in any form. The hospital were astonished and when she saw what was going on, my hospital-based Consultant in Women's Health (nothing to do with GiC) described me in writing as 'unique' but in fact this does occur in other people and it may be one of the many demonstrable ways in which binary thinking is simplistic.

Your caution has a good, sound, basis from years of practice and I understand now where you are coming from, and why. Peace. xx

* 'Re-arrangement' is the term currently preferred to mutation, which has more negative connotations.

p.s. by the way that chromosome re-arrangement does also mean that in those six weeks I could in theory take testosterone in order to maintain my estrogen levels but it's not a path I particularly want to push ;D

Quote from: Tills on October 13, 2024, 05:43:45 AMHang on. The contra-indication listed in BNF is a generalised one about DVT risk with estradiol, mostly focused around prior history of DVT. It's not written about surgery and in fact says nothing about requirements for surgery. There is no specific contra-indication in BNF about estradiol use and surgeries. This is what it says:

We're at cross purposes here. The contraindication applies to restarting oestrogen if you have had a DVT. It does not apply to whether oestrogen should be discontinued before surgery in trans people, because the indication is off label.

Quote from: Tills on October 13, 2024, 05:43:45 AMWe need to be careful here not to make assumptions, especially if they buy into the current simplistic "biological sex" binary zeitgeist beloved of trans-haters. As just one example, I was born with a cyto-chromosome rearrangement* in CYP19A1 that means that all through my life testosterone has been converting to estrogen through the aromatase.

Again, we're at cross purposes. I'm making no assumptions at all here about what the situation would be about the effects of pre-menopausal cis female levels of oestrogen on people who are born with testes if they continue hormones through surgery. What I was trying to say is that there is no research here to say what the situation is, so no assumptions can be made. That is radically different from making a binary assumption.

I'm not trying to put you off in any way here, just to give you an insight into how your team will think. It is a very complex situation and every GAMC procedure which is done is an addition to our knowledge of situations like this. Have patience with them and understand where they are coming from, because if the situation becomes adversarial, you'll end up with less. Whereas, if you can go in with empathy for where they are at and what lies at the back of their minds, then you will find the path much smoother.

Don't worry about them buying into any trans hating binary assumptions - they wouldn't be doing the op if they thought that. You've got the personality and the smarts to engage with them and knock this one out of the park.

I did not come of Oestrogen to go through surgery. There was some factors (my genetics, medical history etc),  but I also was prepared to argue the fact that there is no published reason for doing this..

However, I know my case was unique at the time, as all the nurses who came in to hand me my medication after surgery (for the week I was in hospital) commented that either I 'should not be taking this??' or 'Are you sure you meant to be taking this??'.. or questions to that effect. Still, I think it is easy to build a case that it is detrimental to stop HRT.

Oh that's really interesting and helpful Sarah: thank you.

Maybe this is all part of the test of our resolve to be who we are!

xx

Quote from: TanyaG on October 13, 2024, 08:02:41 AMYou've got the personality and the smarts to engage with them and knock this one out of the park.

 :D  :D  :D

xx

My surgeon initially agreed to keep me on lowish dose transdermal throughout my preoperative period, but reneged when I was admitted. Going suddenly off my meds, and the stress of the op caused me to have severe headaches, and sweating. By day 4 post op my heat rash on my back was starting to bleed. I gave my surgeons specialist nurse the links to the studies citing no reason to stop hormones, but she couldn't convince the surgeon. She apologised to me on release, and a couple of weeks later she resigned.

Without his specialist nurse, my surgeon struggled with post operative care, and in a couple of months, he ceased doing gender affirming surgeries. About a year later, the specialist nurse returned to work with him if their policy changed to allow patients to stay on lowish dose transdermal through the preoperative period. They are back doing these surgeries again.

Too many surgeons think they are gods, and haven't updated their learnings since the Women's Health Initiative report 2 decades ago. Sure, most patients will cope, but none will improve their recovery, and some, like me, will experience significant negative effects during the period we need our bodies to heal.

WPATH doesn't have guidelines to stop HRT as the title of this thread says, but some medical bodies are well behind the times. Unfortunately, too often medical decisions about our care are made based on what is best for the doctor, not what is best for us! We all need to push our surgeons and doctors to update their knowledge, as it's obvious they won't do it on their own!

Hugs,

Allie

Quote from: Allie Jayne on October 14, 2024, 05:32:45 AMMy surgeon initially agreed to keep me on lowish dose transdermal throughout my preoperative period, but reneged when I was admitted.

That's bad because if he had agreed to you staying on hormones it was a breach of consent. What also doesn't make sense is he tried to keep you off oestrogen post-op, because once you are mobile, the danger of DVT (due to immobility) reduces to the background level.

I take it you challenged him about the breach of consent? I'd have quit right there on the grounds that someone who went back on his word was going to be too unreliable once I was under anaesthetic for me to have any confidence in him doing the op.

What is especially mad is if the team have gone back to allowing lowish dose oestrogen pre-op then they're neither following past practice on stopping treatment, nor such evidence as we have that oestrogen treatment can be continued per-operatively without increasing the risk of thrombosis. That's the worst sort of compromise in creation.

Quote from: Allie Jayne on October 14, 2024, 05:32:45 AMWPATH doesn't have guidelines to stop HRT as the title of this thread says, but some medical bodies are well behind the times.

Tills believes her provider follows WPATH 8 but I'm not sure if she knows that for absolute certain. They may not be because WPATH is only one of a series of guidelines about GAMC and within Europe as a whole the Swedish and Finnish guidelines are as prominent - and very different to WPATH in any of its incarnations. Within the UK, guidelines are in a state of flux, with many different ones applying here, but what WPATH 8 does have to say is:

'After careful examination, investigators have found no perioperative increase in the rate of VTE among transgender individuals undergoing surgery, while being maintained on sex steroid treatment throughout when compared with that among patients whose sex steroid treatment was discontinued preoperatively (Gaither et al., 2018; Hembree et al., 2009; Kozato et al., 2021; Prince & Safer, 2020).'

WPATH 7 (2012) was published when only the 2009 paper was out. WPATH 8 chickens out of making a recommendation either way. They just leave that one sentence hanging in the air and step well clear of it.

This has really caught my interest. I spent the afternoon reviewing the evidence because there are so many opinions here and I wanted to see the data for myself. After doing so, I can see why WPATH 8 was cautious after reading the papers it cites on HRT therapy per-operatively.

The papers WPATH 8 cites are, directly, Hembree, Gaither, Prince and Kozato. Indirectly, WPATH 8 cites Berli and Kailas.

Hembree is an evidence based guideline dating to 2009 and the only relevant statement it makes is: 'There is some concern that estrogen therapy may cause an increased risk for venous thrombosis during or after surgery' (p3149). They don't provide any credible evidence either way and the guideline is old.

Gaither (2017) is a retrospective review of 330 patients who had undergone a penile inversion vaginoplasty and found that, 'Age, BMI, and HRT were not associated with complications.' They tapered their patients down to 2mg of estradiol at least two weeks pre-op, but numerically theirs is the largest series.

Prince (2020) is a expert review whose only mention of the matter is: 'There is also debate as to whether transgender women should cease estrogen therapy preoperatively, with some surgeons advocating a suspension of HT 2-4 weeks before surgery (citing Berli 2017). By contrast, in 2019 at the national meeting of the Unites States Professional Association for Transgender Health in Washington, DC, a team from Mount Sinai Health System in New York City reported no observed increase in VTE events among transgender women who remained on estrogen treatment during gender affirming genital surgeries (citing Kailas 2017).'

So I found and read those two references too...

Berli summarises WPATH 7, which was published in 2012. So Berli is a summary of a guideline, yet it states 'However, oral estrogen, especially ethinyl estradiol, is associated with an increased risk of venous thromboembolism; therefore, it is common practice for the use of estrogens to be discontinued 2 to 4 weeks before GCS.' Tracking the citations, this statement is based on Hembree and Van Kesteren 1997.

Where on earth did this recommendation come from? I took a deep breath and read through Van Kesteren.

Van Kesteren (1997) Despite being referenced in Berli and by proxy in Prince, this retrospective study didn't split out the risk of per-operative DVT in AMAB patients taking oestrogen, but instead looked at adverse events overall in 816 patients taking oestrogens whether they had been operated on or not. The authors found a 20 fold increase in venous thromboembolism overall in patients on an oral dose of 100 ug of ethinyl oestradiol daily. Recent studies haven't replicated this finding. However, this paper is probably the source of Berli's statement that 'oral estrogen, especially ethinyl estradiol, is associated with an increased risk of venous thromboembolism.'

That is unhelpful because through Prince using Van Kesteren as a reference, WPATH 8 picked up on a single, then 25 year old study which was nothing to do with per-operative risk. The guidelines picked up on Van Kesteren twice, because Hembree also quotes Van Kesteren as justification for their. '...there is some concern...' statement. Despite the number of cases review, the scope of Van Kesteren doesn't address per-operative risk directly and in any case it is grade III or IV evidence at best. Better than any other example I can think of, this shows the danger of relying on a single paper, because its findings can colour guidelines written a quarter of a century later.

That leaves us with the Prince review Kailas reference...

Kailas (2017) was a retrospective review of 99 patients of whom 71 were transfemale, of whom only 27% had any kind of transgender surgery. Of those only two had a vaginoplasty and there were another two where the nature of the operation was unknown.

I would leave Prince aside, because ultimately, from our POV its recommendations in this speficic area are based either on Hembree, or on two patients in Kailas. Berli is irrelevant because it recycles Hembree and WPATH 7. With only two paitients in our group we can't learn anything from Kailas.

Retracing my steps back to the four papers quoted by WPATH 8...

Kozato (2021) is another retrospective study which looks larger than it really was, but in the group we're interested in, 190 'long' cases were performed with estrogen suspended for 1 week prior to surgery, and 212 long cases were performed with estrogen continued throughout. Only one patient presented with DVT and that was in the treatment suspended group.

Which means the WPATH panel were looking at 554 patients who had had penile inversion vaginoplasty, which is what we would call a long case in the UK and the type of op most likely to cause DVT. All of these 554 patients were on oestrogen, although close to half were on a low dose. There were no DVTs in the group.

This is great news, so why does WPATH 8 not declare a position that oestrogen medication can be given per-operatively in trans patients??? Because all the studies they have cited are grade III or grade IV evidence. They didn't have an RCT to look at, which would have boosted the quality of evidence to grade II at worst and grade I at best. They didn't even have a prospective trial.

What can we take away from this? Gaither and Kozato are absolutely the papers to show to a surgeon if you're trying to persuade them. But medicine is science based, so until we have a grade I RCT in this area the quality of the evidence we have, though persuasive, is by no means rock solid. And without grade I or II level evidence, I doubt guidelines will declare on this subject.

If you think the guideline writers are being too cautious, or patronising, or whatever on this point, imagine you are invited to play a high stakes poker game where the chips represent people's lives. With your name at the top of the paper, you aren't going to declare on a pair of kings.

We need a prospective trial to put this one to bed, once and for all

If a group of specialist centres got together and if people having penile inversion vaginoplasty were prepared to enter a prospective trial, once the design was settled and ethics approved, it should be possible to get the actual case throughput done in a year or eighteen months. I can't see any reason why a trial would need to be confined to PIV surgery in trans people taking oestrogen, because the risk should be no different to any kind of procedure where AMAB patients on oestrogen underwent a 2-3 hour anaesthetic, but identifying and consenting prospective cases would be much easier in a unit setup for GAMC care. There is no prospect of running a double blind trial because the patients would know if they were given dummy meds instead of oestrogen, but even so, a well designed trial like that would answer the question forever. Who do we encourage to do it?

If anyone wants my own view on whether I would personally consent to penile inversion vaginoplasty while taking a working dose of oestrogen I will gladly post what I think in reply. But this post isn't about what I think, it is about what the research has found, about the quality of the existing papers, why guidelines leave this question unanswered, and ultimately, why some surgeons are saying the things they do.

Gaither, Thomas, et al. "Postoperative Complications Following Primary Penile Inversion Vaginoplasty among 330 Male to Female Transgender Patients." The Journal of Urology 199 (2017).
Kozato, Aki, et al. "No Venous Thromboembolism Increase among Transgender Female Patients Remaining on Estrogen for Gender-Affirming Surgery." The Journal of Clinical Endocrinology & Metabolism 106, no. 4 (2021): 1586-90.

Quote from: TanyaG on October 14, 2024, 06:16:12 AMThat's bad because if he had agreed to you staying on hormones it was a breach of consent. What also doesn't make sense is he tried to keep you off oestrogen post-op, because once you are mobile, the danger of DVT (due to immobility) reduces to the background level.

I take it you challenged him about the breach of consent? I'd have quit right there on the grounds that someone who went back on his word was going to be too unreliable once I was under anaesthetic for me to have any confidence in him doing the op.

Tanya, the agreement to maintain HRT preoperatively was between my GP (who handles my HRT) and the surgeon, citing a history of me having significant negative symptoms when my Estrogen drops too low. I didn't realise they had physically locked up my medication until post op, but it wouldn't have mattered, as I had waited a lifetime for this surgery and I was desperate. This surgeon studied PIV in London in the late '90's and early 2000's and was a very good surgeon, but with very outdated information on HRT risks. He believed he was expert on all things trans related, but I found his knowledge was poor. What he lacked in knowledge, he made ip for in ego, and refused to discuss anything with me.

His patients had a Facebook page, so I urged all his prospective patients to strongly insist on remaining on Estrogen during their procedures, citing my horrible experience, and learning that a few others had poor experiences also. I believe it was this pressure which caused him to cease gender surgeries, and eventually change his practice.

The tide is changing in the US, and informed consent is becoming the norm. As recently as February this year, studies have been published which reference the WHI study, meaning their risk profiles are still based on synthetic oestrogen. It is also affecting cis women trying to get on HRT, and the WHI study is causing so much suffering in women worldwide.

I blame academia somewhat, as scientists like to raise their profile by being published, and so many are simply referencing old studies and writing their own conclusions with no actual research of their own. This practice perpetuates invalid and outdated studies, and causes negative medical outcomes for current patients.

Until things change, we must strongly advocate for ourselves, and though I suffered post op, I believe it forced a small change to the system.

hugs,

Allie

Lets not get hung up on the minutia.. WPATH is guidelines, the surgeon I had (and Tills is hoping to have) follows his own practice which is influenced by current thinking. Guidlines are not laws or rules, they are guidelines..

Surgeons are coming to the conclusion, I believe, that there is less harm in maintaining HRT than there is in removing it - there is psychological considerations here too, harm gained by not having your gender affirming hormone treatment is not to be underestimated. With today's better forms of oestrogen, ones that are bio-identical, as long as the dosage is reasonably within cis-female realms, then there should, feasibly, be no more 'risk' than any cis-female undergoing surgery.  I am sure they do not give pregnant women who are to undergo a caesarean any oestrogen blocking treatments either before or after the treatment. (and caesarean is the closest I could think of to a procedure akin to vaginoplasty for cis-women - I was going to cite surgery for hysterectomy, but some surgeons are withholding HRT from those cis-women too, so the 'problem' is not just associated to trans women)

I always tell people to be your own advocate, because no-one is going to do it for you - I am sure, if your willing to sign a few waiver documents, that most surgeons will allow you to continue HRT. Especially if you challenge them to 'prove' that there is a risk for your specific form of HRT.

Quote from: SoupSarah on October 14, 2024, 10:22:21 PMLets not get hung up on the minutia.. WPATH is guidelines, the surgeon I had (and Tills is hoping to have) follows his own practice which is influenced by current thinking. Guidlines are not laws or rules, they are guidelines..

Surgeons are coming to the conclusion, I believe, that there is less harm in maintaining HRT than there is in removing it - there is psychological considerations here too, harm gained by not having your gender affirming hormone treatment is not to be underestimated. With today's better forms of oestrogen, ones that are bio-identical, as long as the dosage is reasonably within cis-female realms, then there should, feasibly, be no more 'risk' than any cis-female undergoing surgery.  I am sure they do not give pregnant women who are to undergo a caesarean any oestrogen blocking treatments either before or after the treatment. (and caesarean is the closest I could think of to a procedure akin to vaginoplasty for cis-women - I was going to cite surgery for hysterectomy, but some surgeons are withholding HRT from those cis-women too, so the 'problem' is not just associated to trans women)

I always tell people to be your own advocate, because no-one is going to do it for you - I am sure, if your willing to sign a few waiver documents, that most surgeons will allow you to continue HRT. Especially if you challenge them to 'prove' that there is a risk for your specific form of HRT.

Love this reply Sarah. Thank you.

xx

Quote from: TanyaG on October 14, 2024, 08:57:46 AMThis has really caught my interest. I spent the afternoon reviewing the evidence because there are so many opinions here and I wanted to see the data for myself. [...]

Hi Tanya, thanks for such a detailed and thoughtful message.

We are all concerned for patient wellbeing which includes, but is not limited to, physical safety. All of life contains some element of risk, heck, even taking a daily dose of anything. One can get a DVT regardless of having surgery, for example from flying or randomly sitting around too long.

There has to be a balance which includes, as @SoupSarah Sarah and @Allie Jayne Allie have pointed out amongst others, the deleterious effects of estrogen withdrawal.

I guess I was interested to know how well-founded the basis was for a six week suspension of estrogen. And I have discovered so far from this thread that it is poorly based. It's made on the flimsiest or even non-existent science. But as you quite rightly point out, this comes down to culpability in the event of a mishap. Who would be to blame? Based on what I've seen so far, I would hold a view that as patient I would accept the supposed risk if that decision is in my hands. But I trod carefully on here initially because, like a surgeon, I don't want to be responsible for encouraging anyone into a risky practice.

Three other things to add. Once again, some of these studies go back to equine conjugated, synthetic, estrogens. We know that comparing these to bioidentical estradiol is sloppy: it's poor science. The second is once again about application: there is a difference between oral and transdermal applications, with the latter posing less of a risk. And thirdly, the shorter the surgery and quicker the recovery time, the less the risk. A vulvoplasty after a previous orchidectomy should, all other things being equal, pose less of a risk than vaginoplasty. Certainly less than my 9.5 hour FFS operation, followed by 5 day bed rest.

I agree with both Sarah and Allie about estrogen withdrawal. I went a week once without any hormones. Like Allie, terrible headaches set in. It was as if all the air had gone out of my body. It was hell on earth. I was just a jumble of bones, and spent the time comatose on the sofa: which by the way would have been an increased DVT risk! Because I became so devoid of life force, suicidal ideations surfaced. The thought of going six weeks without any hormones, unless the science is sound, is beyond grim. That would be balanced out by knowing that I was about to have the final affirming surgery for my true identity, but even so.

Like a lot of things in our world, we sometimes have to nudge forward the understanding. We're not sufficiently major in terms of numbers to push for large-scale scientific studies, so we get pushed back to fit into other moulds, often outdated or inappropriate to us.

I've found this fascinating and thank you all for input so far. And you're right to question the title Allie. I had assumed UK policy reflected WPATH guidelines, but it seems that's not really the case.

Quote from: Tills on October 14, 2024, 11:49:01 PMI had assumed UK policy reflected WPATH guidelines, but it seems that's not really the case.

This is why you need to ask your team which guidelines they are following, because we are discussing a problem which may not arise for you. One thing which may well have made all the difference is the widespread use of low molecular weight heparins, which have reduced DVT incidence sharply across the board in long case surgery.

Something I have noticed in discussions of surgery here is there is a tendency to picture surgeons as people who think of themselves as deities who consistently act against the interests of their patients and fail to keep up with research. Neither of those things are so. Many times in my training I saw surgeons sweat as they fought to save someone's life on the table, and as I wrote before, the reason they have little interesting conversation is because they live on a diet of research. If we stereotype the people who are trying to help us, then how can we complain about the people who stereotype us?

We need some evidence grade I or II research here, and no amount of wishful thinking will bring that. Instead if we ask for prospective studies and present surgeons who are still accepting of the neutral position in guidelines like WPATH 8, we will get progress.

Quote from: TanyaG on October 15, 2024, 03:41:08 AMSomething I have noticed in discussions of surgery here is there is a tendency to picture surgeons as people who think of themselves as deities who consistently act against the interests of their patients and fail to keep up with research. Neither of those things are so.

For sure there are surgeons who are great people, humble even, but it is well known that many are egotists. Many set themselves apart from other doctors by giving themselves the title of 'Mr' (yes, males..). The Royal Australian College of Surgeons is discouraging this practice as it is not supported, but some surgeons are hanging on to the unofficial distinction. My brother is a surgeon, and scoffs at the title of 'Mr', and he tells me about his colleagues who are egotists. So there are good and bad in every bunch, it's a matter of assessing your surgeon and treat them for who they truly are!

hugs,

Allie

Quote from: TanyaG on October 15, 2024, 03:41:08 AMThis is why you need to ask your team which guidelines they are following, because we are discussing a problem which may not arise for you.

This is the UK BMC gender surgery guidance, throughout NHS-funded vaginoplasty and vulvoplasty.

Quote from: TanyaG on October 15, 2024, 03:41:08 AMOne thing which may well have made all the difference is the widespread use of low molecular weight heparins, which have reduced DVT incidence sharply across the board in long case surgery.

Yes indeed. I mentioned it earlier: prophylactic heparin which someone else first posted on this thread.

Quote from: TanyaG on October 15, 2024, 03:41:08 AMWe need some evidence grade I or II research here, and no amount of wishful thinking will bring that. Instead if we ask for prospective studies and present surgeons who are still accepting of the neutral position in guidelines like WPATH 8, we will get progress.

You keep stating this but I think this reasoning is flawed. You're arguing for something Argumentum ex Silentio. First, we are not going to get Grade I or II research specifically for surgical requirements in those transgendered people taking estrogen. It's just not going to happen. Either you don't know that and should, or know it and are being playful! So you're stating repeatedly that without it any other approach is 'wishful thinking'. I respectfully suggest that this is misguided. The alternative position, on which you're basing your argument, is, as I and others have pointed out, flawed research that does not apply for a series of significant reasons that I won't repeat again because they have been posted on this thread by others several times.

I feel like by your approach I'm being imprisoned with no way out. There will never be fresh research specifically for transgendered patients on this but your fallback basis for the status quo is flawed science.

No one has come up with convincing science to back up the current position that 'Doctor knows best.'

xx

Quote from: Tills on October 12, 2024, 11:54:33 PM'Data from studies of menopausal women suggest no increased risk of venous thromboembolism with the use of transdermal estradiol.[44] There are some data suggestive of increased thrombogenicity and cardiovascular risk when conjugated equine estrogens (Premarin) are used.[1,2] Data on the risk associated with oral 17-beta estradiol are mixed, with some suggesting no increased risk and others suggesting a 2.5 - 4 fold increased risk.[20,44] Even in the case of a 2.5 fold increase, the background rate for VTE in the general population is very low (1 in 1000 to 1 in 10,000), so the absolute risk increase is minimal.[3] '

And it concludes, pretty decisively:

'No direct study of the risk of perioperative venous thromboembolism in users of bioidentical estrogens has been conducted. Guidelines from two British professional organizations make a weak recommendation to discontinue menopausal hormone therapy in the perioperative period however both acknowledge that this may not be needed in the setting of proper prophylaxis (i.e. heparin or compression devices).[58] , Studies of perioperative ethinyl estradiol in users of hormonal contraception have mixed findings and are wrought with confounding and methodological limitations.[59] Many surgeons insist that transgender women discontinue estrogen for several weeks before and after any gender affirming procedure.[60,61] These recommendations may appear as benign to the surgeon; however to the transgender woman undergoing a life and body-altering procedure simultaneous with gonadectomy, sudden and prolonged complete withdrawal of estrogens can have a profound impact. Postoperative depression is a nontrivial concern and may have some basis in the drastic hormone shifts, including cessation of estrogens, experienced in the perioperative period. There is no evidence to suggest that transgender women who lack specific risk factors (smoking, personal or family history, excessive doses or use of synthetic estrogens) must cease estrogen therapy before and after surgical procedures, in particular with appropriate use of prophylaxis and an informed consent discussion of the pros and cons of discontinuing hormone therapy during this time. Possible alternatives include using a lower dose of estrogen, and/or changing to a transdermal route if not already in use .[62]'

The idea of prophylactic heparin is an interesting one. ,

See, Canonico M, Plu-Bureau G, Lowe G, Scarabin PY. Hormone replacement therapy and risk of venous thromboembolism in postmenopausal women: systematic review and meta-analysis. Bmj. 2008;336(7655):1227.

It's worth quoting this again and note the heparin comments.

Quote from: Tills on October 16, 2024, 12:45:58 AMI feel like by your approach I'm being imprisoned with no way out. There will never be fresh research specifically for transgendered patients on this but your fallback basis for the status quo is flawed science.

What I'm saying is the opposite to the message you've taken away from it. What I've written is to back up that the guidelines are powerless here because grade I or II research is going to be very hard to find. That's a big card in your hand. Second, there are two studies with over 500 cases between them, where no DVT was recorded in patients who continued taking oestrogen. Third, the guidelines are relying on a single paper to back up their caution over continuing to take oestrogens.

My message is  you can talk to your surgeon - if he is against the idea of allowing you to continue to take oestrogens per op and show him the evidence that there are two, admittedly retrospective, studies looking at a big enough group of patients who haven't suffered this complication per op.

All his training will mean he will have to listen to that. With the references, he can have the papers in front of him in minutes. After that, you just have to cross your fingers, because you can't make him say yes. It's tough, but consent works both ways.

Nobody has asked me what I would do in this situation as either a patient undergoing penile inversion vaginoplasty or as a surgeon doing the procedure.

I'm okay with those two studies on the grounds they are the best data we've got. As a surgeon I would allow my patients to continue on oestrogen. As a patient, I would take it.

Oh, oops! Sorry I misread your meaning. Apologies.

I'm heartened that you've written that.

I guess ultimately this comes down to our own individual choice. It touches on that wider issue with which we deal constantly and as evidenced in the careful terms in which this forum is couched.

We sail our lives between Scylla and Charybdis: on one bank are the professional medics (who sometimes, but not always, know best) and on the other bank are forces powering us to complete the person we know we are (but which sometimes pull us into dangerous waters).

Quote from: Tills on October 16, 2024, 11:40:30 PMWe sail our lives between Scylla and Charybdis: on one bank are the professional medics (who sometimes, but not always, know best) and on the other bank are forces powering us to complete the person we know we are (but which sometimes pull us into dangerous waters).

I couldn't have put it better myself.