Hysterectomies – my additional response to draft NHS England protocol

Hysterectomies (with bilateral salpingo-oopherectomy)

 

Current situation and protocols

  1. Up until now, the Interim Protocol for Gender Dysphoria has listed hysterectomies + BSO as a core, commissioned procedure under the gender dysphoria pathway. It has also set standards for accessing hysterectomies on the grounds of gender dysphoria, derived from the WPATH standards (including requiring at least one signature from a gender clinic), and states a time frame in which hysterectomies should be undertaken (2-5 years from starting testosterone, on the grounds of possible risk of endometrial malignancy)
  2. In contrast, the good practice guide from the Royal College of Psychiatrists (2013) states that GPs can directly refer trans male patients for hysterectomies after a certain period of time living as male, without necessarily requiring specific endorsement from a gender clinic
  3. The new draft protocol does not propose to include hysterectomies + BSO as a core commissioned service, unless undertaken as part of a masculinising genitoplasty procedure. I assume that this is for reasons 4 and 5 below.

Considerations

  1. Hysterectomies with BSO in trans men and non-binary people are not a technically specialised procedure. As far as I am aware, any competent gynaecology unit should be able to conduct the procedure. There are some specific considerations (e.g. a laparoscopically-assisted procedure is usually preferred to preserve options for future phalloplasty), but again, most if not all gynaecology units should be technically capable of addressing these issues, provided that they know to do so.
  2. There are potential logistical/social difficulties in accommodating trans men and nonbinary people in gynaecological services, e.g. providing services sensitively, inpatient placement, use of correct name/title. However, making adaptations to address these issues would be covered under Equality Act 2010 requirements, and it does not seem reasonable to expect trans men to travel to a small number of specialist providers on the basis that local providers might unlawfully break the Equality Act.
  3. The clinical literature on trans masculine hysterectomies + BSO is very limited, and there seems to be little clear recognition of the fact that there are multiple reasons why hysterectomies and BSO are conducted in this population, including:
    • For some trans men, having ‘female’ internal anatomy is part of their experience of dysphoria. Accordingly, a hysterectomy and BSO is an important part of their gender dysphoria pathway, even if the procedure does not need to be conducted by a specialist provider.
    • Risk of malignancy due to unopposed testosterone. My understanding is that the clinical evidence on this is currently more theoretical than empirically established. Wesp (2017) and Feldman (2016) have recently reviewed the evidence and both do not recommend hysterectomy on prophylactic grounds for younger trans men unless there are specific concerns. In contrast, as noted at 1 above, NHS England currently does recommend hysterectomy on prophylactic grounds for all trans men within 5 years of starting testosterone, regardless of age or other risk factors. My perception from being in trans communities is that, many trans men are under the impression that having a hysterectomy is clinically urgent, and that they are at a direct and immediate risk, even at a relatively young age (e.g. early 20s) if they do not have one within the 5 year period. For some, this causes significant anxiety and distress.
    • Other gynaecological needs. It is already established that trans men and non-binary people should have access to a hysterectomy and/or BSO in situations where it would be clinically appropriate for a cis woman to have these procedures, and that this should never be delayed due to the gender dysphoria pathway.
    • Factors or combinations of factors which, in the cis female population, might not be deemed sufficient basis for a hysterectomy, but which, coupled with gender dysphoria, may be seen as sufficient basis for hysterectomy in trans men and non-binary people (e.g. unwillingness to undergo smear tests; painful or heavy menstrual cycles which do not stop on hormone therapy; a desire for permanent infertility). For some of these problems, it is possible that alternative procedures might be suitable – however, the evidence is again minimal.
    • There has been a historic assumption that trans men would never seek to become pregnant, and that testosterone leads quickly to permanent sterility. I suspect this has indirectly influenced attitudes to sterilising surgeries in this population, in that fertility preservation may not have always been taken into account in decisions about hysterectomies for people taking testosterone. It is becoming increasingly clear that this assumption is seriously flawed and that fertility preservation (including, in some cases, preservation of the ability to become pregnant) is important for many trans men and non-binary people, including those already taking testosterone.
  4. Anecdotally, it appears that GPs are often reluctant to refer a trans masculine patient for a hysterectomy without a signature from a gender clinic, and gynaecology units are often reluctant to accept such referrals without gender clinic approval. Occasionally this happens even where patients do have urgent gynaecological needs which would justify hysterectomy regardless of gender dysphoria, despite the fact that current protocols state that this should not happen.

Implications of the new protocol

  1. The new protocol will mean that the gender dysphoria pathway no longer specifies how trans men and nonbinary people can access hysterectomy and BSO on the NHS, unless they do so as part of another genitoplasty procedure. This will be the case even if (as above), they want to access hysterectomy purely as an intervention to address gender dysphoria. As a consequence, there may be a mismatch between their needs and local protocols, which may not currently recognise gender dysphoria as a grounds for hysterectomy.
  2. Gynaecology units, patients and GPs may not realise that a laparoscopic procedure would preserve future surgery options.
  3. The proposed ‘sign-off’ procedures for hysterectomy and BSO after the new protocol is adopted are unclear. Can the GP refer a trans masculine patient for hysterectomy without a signature from the gender clinic? Should a gynaecology unit accept such a referral? Are the gynaecology unit or the GP expected to establish for themselves whether the patient has persistent gender dysphoria, and are they capable of making this assessment? Do they have the correct information to discuss issues of risk (see below)? On the other hand, the new protocol does not state that gender service providers should issue signatures or advice regarding hysterectomies. Suppose a gender clinic adopts a policy of not signing off hysterectomies, but local GPs/gynaecology units refuse to provide them without a clinic signature?
  4. The new protocol will neither reiterate, nor revoke/amend the previous advice that trans men must have a hysterectomy within 2-5 years of starting testosterone. As noted above, my perception is that this belief is already thoroughly embedded in trans communities, and that unless NHS England specifically revokes or amends this guidance, trans men and non-binary people taking testosterone may continue to believe that they are at current direct risk unless they have a hysterectomy. GPs and local gynaecology services are unlikely to have up-to-date clinical knowledge on these issues. If NHS England does still consider that clinical risk is a valid basis for hysterectomy, this should be made clear in guidance, issued in a format to be taken into account by referrers/surgical providers locally. If NHS England considers that risk is no longer sufficient basis for recommending hysterectomy, this aspect of previous guidance should be explicitly revoked or amended in order to minimise confusion and distress (and to avoid potentially unnecessary surgeries).

Conclusions

  1. I broadly agree with the decision not to commission hysterectomies and oophorectomies as a specialised surgery. However, there needs to be much clearer information and guidance issued alongside the adoption of the new protocol. This needs to go beyond liaising with local gynaecology units about being more ‘trans-friendly’, and also include clear guidance on pathways and protocols, including an up-to-date clinical assessment of when hysterectomies should be considered or recommended for trans men and non-binary people, and any requirements that are in place. The service specification itself needs to clearly point to suitable guidance documents, and also to explicitly place a duty on gender identity non-surgical providers to issue advice, information and (if appropriate) ‘sign-off’ regarding hysterectomies conducted by local providers.

 

References:

Feldman, J. (2016). Preventative Care of the Transgender Patient: An Evidence-Based Approach. Principles of Transgender Medicine and Surgery. R. Ettner, S. Monstrey and E. Coleman. New York, Routledge.

Wesp, L. (2017). “Ovarian and endometrial cancer considerations in transgender men.”   Retrieved 3/2/2017, from http://transhealth.ucsf.edu/trans?page=guidelines-ovarian-cancer.

Advertisements

Losing my Religion

I can pinpoint with precision the moment when I lost my faith. It was at an Evangelical event in Skegness when I was about 17. It had been organised by my local Church of England (Anglican) church. And I went to a discussion event on sexuality, and it really wasn’t a discussion at all. The leaders of the session were quite clear that there was no place for homosexual or queer identity. Unless I was prepared to enter into a heterosexual marriage, I was being “called” to celibacy. They based that on the fact that in Genesis, God creates Eve for Adam.

I am quite, quite sure that I am not being called to celibacy. In Genesis, before heterosexuality is created, the statement is made that it is not good for man to be alone. That is not to say that I believe that being single isn’t a valid choice, nor that all relationships must be permanent, marriage-modelled two-person arrangements. My point is that it is dishonest and cruel to suggest that gay, lesbian, bi and queer people who want to be in a relationship are being called to celibacy.

Now, all right, I wasn’t brought up in an Evangelical tradition. My dad was always pretty sceptical about Evangelicals, my mum liked some of what they had to say, but not other parts. So one option might have been for me to just decide Evangelism wasn’t for me, but stay Church of England. The trouble is, the liberal, “mainstream” of the Church of England wasn’t (and still isn’t) taking a coherent and pricipled stance. Oh, there are plenty of C of E churches which welcome gay congregants (but their relationships can’t be blessed by the clergy). There are some gay clergy (but officially they have to be celibate even though I’m pretty sure the real state of affairs is “don’t ask, don’t tell”). The anti-gay stance of many Evangelical churches may be hurtful and rejecting, but at least it does have integrity, and some kind of internal logic. The Church of England official stance is plain hypocrisy.

My mum is a Church of England vicar. Each year she holds a pet service in her parish church, and blesses dogs and cats and gerbils and guinea pigs and goldfish (even if they’ve been really bad goldfish!). She can say “Bless this food that we eat” over a meal. She has blessed houses for people newly moving into them. She even once blessed someone’s prized vintage car. I’ve been with my partner for six years. My mum is very supportive of the relationship. But she is categorically forbidden by the Church of England to bless our relationship within her official capacity. Nor can she bless the relationship of another longstanding parishioner of hers, someone whose faith hasn’t lapsed, and who genuinely and honestly believes in the Church of England’s ministry.

I’m glad the Archbishop of Canterbury accepts that this is hurtful. But I don’t accept his apology. One of the Christian principles I was raised in is that it’s not a real apology if you don’t make some effort to change. And doing something you think is wrong, for the sake of an easy life and not upsetting people, is immoral.

I suspect I probably won’t go back to religion, whatever happens. And it’s certainly not all about sexuality. There are plenty of other ways in which Christianity doesn’t give me satisfactory answers to my questions. But I cannot even respect the Church of England as a moral and ethical institution while its leaders continue to take a stance which I think even they believe to be wrong.

Gender Recognition

In the UK, it is possible for many trans people to have their gender legally recognised, without necessarily requiring us to have surgery. And of course, that’s a huge privilege, and there are many people, in many countries who are nowhere near so lucky.

Our legislation came into force in 2004. At the time, it was pretty progressive. And I know there was a lot of behind-the-scenes negotiation which was necessary to make sure something went through which would help a lot of people. I was one of those who benefitted, and I’m grateful for that.

But eleven years on, the legislation’s looking dated, and frankly unfair. It allows for the recognition of people as either male or female, if they can prove they have been living in their new gender for at least two years by submitting document, and make a legal declaration to say they intend to live as that gender for the rest of their life, and can provide letters from two doctors (one an “expert”) to verify the situation. You don’t need to have had medical treatment, but if you haven’t you need to provide a good reason why not.

The process can be expensive. There’s a fee of £140 to have your application considered (it may be reduced for those on low incomes). Doctors can charge for medical reports, and if you haven’t kept documents like old bank statements or utility bills, you may have to pay to get copies or wait till you have those things before you apply. The statutory declaration has a set legal fee of £10. If you’re in well-paid work, these charges are irritating but manageable, but for someone on a low income, it’s a lot of money.

The final decision about the gender is taken by a panel under the Courts and Tribunal Service. You never meet any of the panel members, you don’t sit in on their deliberation, and as far as I know, the names of the panel members are not readily available. So even after submitting all this evidence, the final decision is taken by strangers who have never met me and know very little about my life, other than having seen a few old gas bills. They have the right to overrule both my legal oath, and the opinion of doctors who do know me and take a decision on my gender. That seems intrinsically wrong.

A legal system which allows recognition as only male and female, and requires an oath that you have no intention to change that, is unfair on non-binary people. At the moment, they are less protected under other UK equality legislation too, and the whole issue is in need of urgent review. There is also still ambiguity around the medical requirements – if you have a trans identity, wish to be recognised in a different gender, but don’t want medical treatment, the onus is on you to justify that. Unfortunately, I’ve heard some bad stories about that.

The passing of same-sex marriage legislation in the UK was fantastic, but there are still problems for trans people who are married or in civil partnerships. They have to get their spouse to agree to the change. Which is fine if they’re with a spouse they want to stay with. But what if they’re in the middle of a messy divorce, or their former partner has disappeared? Their estranged partner can now hold over them a refusal to consent to their new gender.

The irony of it all is that gender is increasingly irrelevant in legislation anyway. Pensions will be equal in the next few years, we have same-sex marriage, and it’s no longer to discriminate regarding gender on issues such as insurance. For someone my age, there are virtually no situations where it is legally relevant what gender I am.

The simple fact is, gender should not be a matter for state control. If I want to call myself a man on Monday, a woman on Tuesday, and non-binary on Wednesday, that is nobody’s business but my own. After all, the government does not maintain a register of my other identity characteristics (they may be monitored for equality reasons, but that’s optional and up to me how I describe myself). Over the course of a few years, I went from Christian to agnostic to atheist – but I didn’t have to get my passport reissued, or swear an oath in front of a lawyer promising I would never again enter a church. I still frequently waver between calling myself gay or bisexual – but no-one requires me to get a doctor’s letter, or submit photos of who I’ve slept with over the last two years every time I change my mind. Even my ethnicity, although it certainly has a biological dimension and is fairly externally obvious, is not something that is recorded on my birth certificate nor regulated by the government. Gender seems to be the one thing where there is an absolute requirement to stick to a single category, and we must seek special permission to change that.

But as I say, the world has moved on since 2004. Ireland, Argentina, Malta, Italy and Denmark now allow trans people to simply declare what gender they are. The UK should be joining them