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 Post subject: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 3:10 pm 
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This is a long way off, and I'm not trying to jump the gun or anything, but does anybody here know if there's an option to give informed consent to start T on the first visit to the GIC?

As I said to my doc today, it's not going to make a wealth of difference to my life considering the severity of the hirsutism with my PCOS (I reckon in the next 10 years I will have a proper full beard, without being on T, given the rate of growth of my facial hair since I turned 14/15 - I'll show you blokes my pre-T beard at some point) and the fact that the PCOS will likely render me completely infertile anyway (which is only an issue if I wanted to bear children - I don't).

Just thinking of how I might expedite the process since I not only have to see the psychiatrist first, but then also have to wait to get a placement at the GIC and it appears that it might be a good 15 months before I even get a sniff at starting on T.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 3:17 pm 
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not that ive ever heard of, oh btw a pcos beard never becomes a full beard, 20 years of pcos n ive got the shadow of a goatee

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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 3:47 pm 
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Honestly, I was told that in the beginning, too... but my beard has spread from being a few patches on each side of my chin to the beginnings of chops and a goatee. It grows ridiculously fast, too. When I let it grow for a week or two, I get consistently branded as male.

It's not as bad as Harnaam Kaur's PCOS beard, but in a few years it could be getting close.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 5:17 pm 
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Do you mean would they decide that being on T won't be as risky to you as anyone else, and they'll let you start T right away?

I doubt it, to the point I'd say it's pretty much definitely not going to happen. Even privately you have to have had two opinions (it's just that privately you can get them both on the same day).

Everyone has to have a second opinion, so you get your first at your first appointment, and they'll send you for a blood test and inform you of anything you might also need to have done to be allowed to start T, and then your second opinion will be the one where they decide whether you can start T or not.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 6:25 pm 
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Not necessarily, no. My understanding of informed consent is that you consent to a certain treatment with knowledge of the supposed risks involved.

I mean, I've lived at least 10 years with elevated T levels... I can't imagine that supplementing those elevated levels would risk any more adverse affects than the ones I've already experienced, otherwise PCOS and getting T would be contraindicated, surely?

The dual opinions are pretty much for mental readiness and general suitability for transition, is that right?


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 6:37 pm 
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It's not gonna happen, everyone in the UK has to go through the same process, NHS or private, high natural T or not. I don't agree with it, I think everyone should have the option to go through the long twisty pathway if they're unsure about things or take a shortcut if they know exactly what they want, but it doesn't work that way. No doctor will open themselves to liability by making an exception for you.

Also, as far as I'm aware you need two doctors' independent assessments when you get referred for surgery, so you'd be shooting yourself in the foot trying to skip it at the start.

If you're that impatient, start saving up funds and go private. I did & very glad I did.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 8:07 pm 
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I don't see the link between PCOS and being given preferential treatment.

Nerf has had PCOS all his life and he's 39 now, and as for elevated T levels, his pre T were 1.7, which is not much higher than a average female, PCOS sufferers only have a fraction of the T level of a cis male (that is a quote from a GIC doctor), male levels are generally somewhere between 8 and 28, obviously on the higher end for younger men, and 80 odd year olds at the lower end.

There are risks with any treatment, but as the other guys have said you need to be assessed and diagnosed before you will be offered any treatment for which you'd have to give informed consent for.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 8:17 pm 
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Since you are from Wales you will be referred to Charing Cross. Here is an except from their FAQ part of the CX website:

Will I get hormones on the first visit?

Generally we will not endorse hormone treatment on the first visit. This is because we need to find out more about you than just one visit will allow and we have a two stage assessment with two different GIC clincians.

Patients who are more complex, for a number of reasons, are likely to require three or some times more assessment appointments. Complexity may be due to the patient’s social circumstances or history, such as forensic history, or someone who is presenting in an unusual way.

Similarly complexity may also be due to religious beliefs or background, highly segregated living circumstances (for example prisoners), or unusual occupational status, for example.

Some people come to us with problems that will not be helped by hormones and surgery and obviously it is important that such people do not undergo treatment that will harm them, especially if it will harm them irreversibly, as many or our treatments have the capacity to do if administered incorrectly.

National and international guidelines also advise against prescribing hormones without having evaluated the patient situation thoroughly, and that that can’t be done in a short time. You will also have the reassurance that you have been assessed by two experienced clinicians who are now familiar with your background and will be able to manage your care and any subsequent referrals requiring more than one opinion.

Also there are some medical conditions that are seen in the gender clinic and these cannot be diagnosed if you already taking hormones when you arrive. Part of the assessment given to all new patients is a blood test to make sure that they hormone levels are normal before we start treatment.


There are also guidelines from WPATH (World Professional Association for Transgender Health) stating how a gender doctor or other healthcare professional assesses your physical, mental and social/emotional health before providing the go ahead for hormones. There have been a (very) few people who have regretted transitioning and have sued their doctors. There have also been incidences of doctors being reported to the GMC for not following these guidelines to the letter.

There's also the ethical issue for a doctor to do the best by their patient (Hippocratic oath - first do no harm) and while the majority of people know they are transgender and are sure that Testosterone would benefit them, the doctor can't make sure that it is safe for you unless you have been correctly assessed.

While there is a form that you sign indicating your 'informed consent' that in itself is a medico-legal minefield and assuming you are competent ie have capacity to take in the information given to you, understand and retain it and make a judgement based upon it, even then it may be a lot to take in after one meeting necessitating a period of 'cooling off' or at least thinking over the risks involved.

A study from the Journal of the Royal Society of Medicine showed that between 40 and 80% of information was forgotten after a consultation with a GP and 50% of the information that was recalled was recalled wrongly!

So if I was doctor (Oh look, I am one) I wouldn't bet my medical licence or my personal ethics on doing what was right for a patient on some person I hadn't met before who has a huge investment in wanting hormones as quick as possible who might not even be able to take in or remember any of the risks relating to testosterone and PCOS due to the stress, anxiety or excitement of finally getting within sight of a diagnosis of gender dysphoria and a script for T.

But I suppose you can always ask.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 9:05 pm 
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Thanks Neal, I'd read that on the CX website and it's that one word, "generally", that made me wonder.

I don't think it is (nor do I advocate) preferential treatment. Like maus says it's just to do with knowing precisely what you want and taking responsibility for the risks involved.

I asked to satisfy my curiosity more than anything. Although I suppose it is impatience, really, since it dawned on me a few hours ago when I made the thread that it'll be over a year (realistically) until anything really starts happening. I might still chat about it to whoever I see, when I do eventually make it to the GIC, if they agree I'm a "suitable candidate"... although I'm guessing I'll be given the same answers you lads have provided.

I did have my T levels tested yonks ago and I do know that even with PCOS that test levels are nowhere near as high as a biological male. I guess my logic is that I choose not to treat my PCOS and assume responsibility for the greater risk of certain cancers, diabetes, and whatnot in doing so it stands to reason a person should be allowed to give informed consent to undergo hormone therapy that carries the same risks (am I correctly remembering that there is no solid link between increased risk of cancers and taking T? might have to look that up)... heck, I'd even sign a waiver.

Ho hum.


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 Post subject: Re: PCOS and informed consent
PostPosted: Tue Aug 19, 2014 9:38 pm 
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I would say the 'generally' was a get out clause so that they could prescribe T to someone who was already on it ie was coming from the private sector or from another country who needed an NHS formal diagnosis and to able to get their T on the NHS. Charing Cross's policy is 2 docs to make the assessment/diagnosis and that is done in a minimum of 2 appointments.


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