It's a long old tunnel

    There comes a point in many blogs in this sphere when they slow down and eventually peter out. Sometimes they end abruptly when a writer decides themselves to have completed their transition, other times people just slowly move on.

    So, if you are one of the regular readers here, you'll probably have wondered about my uncharacteristic silence. I'm not the most prolific of writers here these days because I spend all my time writing for a living somewhere else, but I normally manage one or two posts a month.

    Why the gap then? I'm not leaving, no worries there. No, I had something of a shock a little while back, that has led to a surprising turn of events, and it's given me a lot of ups and downs with a bit heavier on the downs, and taken me a while to get over.

    If we rewind a couple of months or so, I wrote an official complaint about my endocrinology treatment. I've had several years of very poor service, outright neglect from my endocrinologists, and very low levels as a result. The complaint isn't the main story here, but it's relevant.

    Then, in October, I had a bombshell. My surgical referral had been declined, due to an administrative technicality over my referral not coming from a gender clinic. Worse still, they'd sat on it for five months, wasting a significant amount of time.

    I suffer from something rather annoying, atypical facial pain, or AFP. It's a chronic pain condition of the facial nerves, in my case on the left side of the face. It's an extremely intense pain, about as strong as pain gets. I'm lucky, mine responds to treatment, and it's episodic. It comes in attacks, usually triggered by a stress event, and this news triggered one of the worst attacks I've ever had. Three weeks of popping powerful nerve suppressants and painkillers like candy, before it faded away as though it had never been. I suspect if I can time an AFP attack before my GRS I won't care about any pain down there. I'm told some doctors refer to AFP as "The suicide pain" because it can be so bad it drives patients to suicide, and I can believe that. As I said, lucky mine responds to medication.

    As luck would have it I had an appointment with my counsellor about ten days after the news, at which I poured out my tale of woe. I gave her all the paperwork I had, my referrals, the refusal letter, and my written endocrinology complaint. And went into detail about the joys of AFP, which I didn't need to embellish as when an attack's underway it's pretty obvious.

    Four days later, a letter. In it were three pieces of paper. My next counsellor appointment, and two appointments with the senior gender specialist psychs. On the same day, consecutively, in December, at the time about six weeks away.

    That sounds like a reasonable result, you might say. But to anyone who knows the gender identity clinic system, it's remarkable. Such things Just Don't Happen.  Really. I had resigned myself to three six-month waits, and a huge delay. Now I have a likely referral around Christmas, and then whatever wait is needed for my surgeon. Which is another story, but one thing at a time.

    So then, what caused this? I have no idea. My nearly-8-year path through it all perhaps? The AFP? Being able to put "Journalist" under "occupation"? Or my endocrinology complaint? To be honest I have no idea, but something must have pushed the relevant button. I am aware that I am being done a significant favour even if I don't quite know why, and after four years of being messed around by other doctors I'm very grateful to this set for doing it.

    The last few weeks have not been the best, I have to say. Pain and depression are not fun. I dropped out of sight in quite a few other places too, not just here. But maybe there's a glimmer of light at the end of the tunnel, even if it's been rather a long one.

Footnote: I wrote a piece for nGendr about HRT and self-medication, if you are interested.

Lost in the system

It's now three years since I transitioned, give or take a week or two. 18 months since starting HRT. But surprisingly I have yet to have an anti-androgen.

Why is this the case, you ask? After all, I've been to the endocrinologist quite a few times. I have come to the conclusion that I've become lost in the system.

Here's what happened. In January I went to see the endo. They weigh you, you have a chat with him, they take blood, you go away. You expect a letter from your doctor shortly afterwards saying that you have a new prescription, which you go in to collect, have the injection, whatever.

What I got was a letter from the endo a few weeks later saying they were going to discuss my case and come back to me. Then, nothing. I got a contract, and spending the summer running around I didn't have time to chase it.

A few months later, contract ended, and to say I'm a bit miffed is an understatement. So I'll be going to see my doctor and metaphorically banging on the table, asking him to find out what's happened. I do not expect to have to wait for another endo appointment, I've had enough delay.

I'm beginning to understand why people self-medicate.

DIY endocrinology, now available on the NHS

    A friend recently mentioned that she has decided to take a short-cut, to self-medicate with estrogen rather than submit to the interminable wait for hormones through official channels.
    It's her choice, and on reflection I don't think it would be mine. Though I'd be happy if I could secure a hormone prescription before going full-time I'm at peace with the notion of an RLE requirement if that's what it comes to for me because I subscribe to the view that living as a woman is more important than  accessing any particular treatment. But she's at an advanced stage of desperation and who am I to judge her decision. I've made my views clear enough in the past on the whole sorry mess of self-medding becoming the de facto route into hormone therapy.
    Something she said made me take notice though, something I'd heard the same thing from others but had never before considered the implications. Her doctor is happy to give her regular blood tests to allow her hormone levels to be monitored, but is not prepared to give her any advice or referral based on those tests.

    That's right. We do endocrinology here, but you? You're on your own!

    It's understandable I guess, they stray into a huge legal quagmire if they offer official support for strictly unofficial use of medication. Sure, they are qualified and experienced to give advice on basic endocrinology even if they aren't world-class experts -  they do it every time a natal woman comes in for HRT, to name but one of many endocrine issues they face - but they need the endocrinology in question to be under their control to be able to do it properly. In offering the blood tests they're going out on a limb somewhat, doing the best they possibly can for their patient without exposing themselves to malpractice claims. Can't blame them for that.
    This is not a good situation though, because even though it provides the requisite information it still means the patient relies on DIY endocrinology. You'll probably have heard the DIY endocrinology line somewhere in this sphere, that endocrinologists just use a trial and error process to get the levels right and it's so simple anyone could do it. How dangerous a half-truth can be.
    I can't help thinking yet again that the whole situation is an unholy mess. A lot of transgender people seen to end up self-medding through necessity and though the medical profession frown on it they provide just enough help to facilitate it. But not enough help to enable the patient to do it in complete safety.
    Yet again I wish there could be a grown-up conversation on the subject. I see other clandestine medicine being provided without question - to drug addicts, or to teenagers needing contraception - and I can't help thinking that if it's legally safe for those kind of services to be provided then there must be a way for it to be so for endocrine advice to be given to a self-medder. I wonder whether the atmosphere of reluctance to do so comes from fear within the medical profession of a perceived rather than genuine legal threat.
    After all, there are people facing real medical issues because of this, and isn't fixing that what a doctor does? Can you be nicked for simply practicing your profession in that situation?

Self-medding: time for a grown-up conversation

    "If I was starting transition now, and knew what I know now, I would self medicate. Absolutely no question".
    I read this quote a while back, referring to the practice of self-administering hormone treatment without any prescription. It came from someone well-known in this sphere whose stance I respect a lot. And it struck me, how unusual it is to see someone saying something like that in public, online for all to see.
    You see, what normally happens if someone mentions self-medding on the internet is this: they are drowned out by a chorus of people anxious to point out that it's generally frowned upon, all sorts of nasty things can happen to you if you do it, it's illegal, it'll affect your future treatment, etc. etc. If the mention happens on a moderated forum or mailing list there's a good chance it'll be deleted too, because We Don't Encourage That Sort Of Thing.

    Y'know what? We know.

    We all know self-medding is a risky business, we don't need to be told again and again. What we do need within this community is the chance to talk about it in the open, because stifling any attempt to do so is stopping a conversation  in this community that both we and our medical practitioners need to have.
    My local psychiatrist surprised me a while back when he told me that as many as 80% of his patients self med with hormones they've bought from the Internet. I knew a few people who were open about it, but never realised it extended to that many of us.
    So, just out of curiosity, I asked a few friends. Got some funny looks, but assured them it was only for intellectual interest. My wife would not thank me for self-medding and I don't want to lose my fertility just yet, those are pretty good reasons not to do it if there weren't plenty of others.
    I was reminded of a 1950s British film in which one of the protagonists - a terribly respectable middle-aged lady author - goes into a seedy pub to try to buy a Mickey Finn to incapacitate her blackmailer. She ends up trying to buy one from a man who turns out to be a policeman, saving herself only by claiming to be researching for a book. "Pssst - Where can I buy some Estrogen?".
    If you ask people why they self-med, it always comes down to the gatekeepers. The medical profession don't make it easy for us to get our hands on the hormones for many very good reasons. Aside from the need for safety under medical supervision there are some people who seek hormones for whom they are an extremely unsuitable treatment. There are many arguments passionately made as to how the doctors could speed up their service and how their attitudes could be updated, but why they work the way they do is entirely understandable and in the best interests of their patients as they see them.
    The trouble is, in doing this it seems from this viewpoint that the gatekeepers encourage self-medding. This isn't a tacit encouragement, but it happens in two ways. By raising the barrier to legitimate prescription they increase the incentive to simply bypass them. Thus they simply never see a great swathe of non-transitioning self-medders who don't need their other services. Then when they do encounter someone who self-meds their concern is to get them onto a safely prescribed dose as soon as possible so they forgo the usual RLE test before a prescription is issued. This encourages people at the start of transition to self-med while on the waiting list. I have more than one friend who has done just that, and I believe the quote at the start of this piece referred to it as well. Why spend an uncomfortable period as a bloke in a dress when you can hit the ground running?
    This relaxation of the RLE requirement has a rather iniquitous parallel. Those patients who self-med are rewarded with a fast-track, yet those patients who present to NHS clinics having obtained legitimate hormones by private prescription seem to be required to come off them and serve the full RLE without hormones. I have personally encountered more than one person who has experienced this, as well as a couple of well-publicised people in the blogosphere. The dichotomy between a reward for dodgy hormones and a punishment for legitimate hormones is startling.
    (Edit: Following clarification of the legal position in the UK, removed paragraph relating to dire punishments for those importing hormones. My source turned out to be wrong. It seems it's illegal to import testosterone in some circumstances but not estrogen. Well, those of us on the MtF side of the fence know testosterone is the dangerous one! :) )
    I wonder if I'm alone in thinking the situation I've outlined above is a bit of a mess. A mess without clear fault or solution at that. It's difficult to fault desperate people for self-medding, equally you can't blame doctors for doing their job, however frustrating it might seem at times. But if it's a mess without a solution, one thing definitely makes it more of a mess. The self-censorship within our community whenever the subject comes up isn't helping anyone.
    I'll repeat the point I made in the title of this piece: it's time for a grown-up conversation about self-medding.