WPATH guidelines on 6 weeks without hormones prior to surgery

[SoupSarah]

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.

[Tills]

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

[Tills]

You've got the personality and the smarts to engage with them and knock this one out of the park.

    

xx

[Allie Jayne]

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

[TanyaG]

My 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.

WPATH 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.

[TanyaG]

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.

[Allie Jayne]

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.

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

[SoupSarah]

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.

[Tills]

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.

Love this reply Sarah. Thank you.

xx

[Tills]

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. [...]

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.

[TanyaG]

I 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.

[Allie Jayne]

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.

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

[Tills]

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.

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

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.

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

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.

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

[Tills]

'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.

[TanyaG]

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.

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.

[Tills]

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).

[TanyaG]

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).

I couldn't have put it better myself.