Wednesday, 15 February 2012

Chemical Sterilisation or Castration?

I am writing this response to Rossa Forbes' (Holistic Recovery from Schizophrenia) comment on my last post.  I started writing this as a comment, but it wouldn't publish as a comment because there were too many characters in the HTML.

Rossa: this relates to something I wrote about in my memoir - that my prolactin levels were too high for me to conceive due to the medication I took throughout my 'day hospital years' and not only was I not told about this, I was expressly told the opposite when I asked about starting a family with my then fiance; that the medication was no barrier to conception and was safe to take during pregnancy.

I was on Risperidone; a very low dose of it at that time.

I am pretty sure that I am not the only person this has happened to.  I realise it is quite an extrapolation to suggest that it is a common occurrence.  I am sticking my neck out, I know, to suggest that there is some kind of psychiatric conspiracy to prevent people with a mental health diagnosis from conceiving, but I cannot believe that this information was in the public domain (I was lucky to chance upon in a small paragraph of a health magazine that said certain types of medication can affect prolactin levels and it rung a bell) and that the psychiatric staff did not know anything about it.

It is not long at all since female mental patients in this country were literally sterilised as a matter of routine (fifty or sixty years?) although this seems almost unbelieveable now.  So perhaps it is not such a leap of the imagination to conclude that there is an unspoken chemcial sterilisation still happening - or, at least, that it is seen as a 'lucky' side-effect of certain medications?

When I found out that my prolactin levels were 'sky high' as the GP put it, that GP referred me to an endocrinologist, and I tapered off the medication under her supervision.  Then I had to take another medicine to kickstart ovulation (I can't remember the name of it but I only took it once a day for five days - it is quite a commonly used drug for that purpose).  Then I was able to conceive (I had married by then).  I lost the baby (I think a first pregnancy very often results in miscarriage and although I was devastated at the time...anyway, don't want to go into all that again just now).  I don't think the pregnancy failed because of the prolactin thing and it is good news that the barrier to conception caused by the medication was reversible. 

A year or so ago I spoke about this to my friend who is a psychiatrist - she was not shocked at all when I told her what had happened to me.  When I asked if she didn't think it was wrong per se, she clearly did not - I did not like to press her on the subject, but I know she deals with some very disturbed teenage girls and it would be seen as a catastrophe if they were to conceive, so the medics are probably quite pleased that this is a side effect of the medication.  As with mental patients generally.

If you look at my post from 24th January, 'Schizophrenia and Transport', under the comments somebody else has said that high prolactin levels render men infertile too (she has written to me a few times recently; like you, her son has been ill, in his case he was extremely badly treated by the system).

I have referred to this 'chemical sterilisation' of women before, but I had no idea that it happened to men too, as a sort of 'chemical castration'.  I think it is a total scandal - and no, I have no proof, except what happened to me and the fact that nobody I know who takes psychiatric medication long-term has ever had a baby, added to the fact that my friend the psychiatrist was not surprised and did not try to deny that medication is used in this way - or that the medics are secretly quite pleased about this particular side-effect of the drugs and deliberately do not communicate it to patients.  Even when directly asked! 

I thought she would deny it immediately and tell me that my case was very unusual - she did not. As I say, I didn't press her on the subject - she is a good friend of mine, a lovely person, and clearly believes strongly in the branch of medicine that she practices; she takes medication for her own bi-polar disorder (although she has had several breakdowns in the ten years since I have known her, which goes to show, if we didn't know already, that medication is not the answer.  But I can't bear to tell her I think that.  Who am I to do so?)

Actually, one girl I met in the day hospital did have a baby, but her sister (who was also a patient) told me that she never took her medication.  I am not sure what happened to her and the baby - they were taken to a mother and baby unit to see how she managed. 

So Rossa, yes, I am jumping to conclusions perhaps, ruled by my emotions to some degree, but I think I have some foundation for my convictions.  I would love it it I was proven wrong - or if I was proved to be right and some action was taken as a result.  Mental health patients have so few rights, and it seems so unfair to take away their chances of a normal life. 

Do look at the comment on 24th Jan.  If anybody else has any information, anecdotal or not, I would love to hear it.  Let me know if you do any research and find out anything Rossa - I am itching to go to Google now but have to feed the kids!  (The four gorgeous, amazing, lovely, sweet and wonderful ones who would almost certainly never have existed if I had not chanced upon a tiny paragraph in 'Health and Fitness' magazine about fourteen years ago.)  x.

11 comments:

  1. Interesting. I will repost your post. I suspect you are absolutely right - that doctors are complicit in not divulging to the patient the full facts about these drugs.

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  2. Thanks Rossa. A very quick Google search just came up with this: http://apt.rcpsych.org/content/9/3/202.full

    this:
    http://journals.lww.com/psychopharmacology/Abstract/1999/02000/Prolactin_Levels_and_Adverse_Events_in_Patients.11.aspx

    and this: http://www.womensmentalhealth.org/posts/fertility-and-antipsychotic-medications/

    Risperidone seems to be a prime culprit, but I don't think it is the only psychiatric drug that has this effect.

    This website piece is written as though infertility is a commonly recognised side-effect of anti-psychotic meds: http://www.medicationwithdrawal.com/articles/antipsychotic-side-effects.html . It states that, 'once a woman has discontinued use of the drug, she may still have difficulty getting pregnant due to antipsychotic medication side effects such as infertility'. Other articles state that the process is reversible, as was the case for me.

    As I said, this was just the result of a really quick Google search. I suspect that there is lots more information out there all in the same vein. I am relieved that I don't appear to be paranoid after all! So surely patients should be properly informed of the facts? And why are they not?

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  3. My son definitely felt that he had been chemically castrated by the psychiatrists and was deeply distraught by it. He had been on 2mg of Risperidone for about 2 months only. We went on the Internet and searched medical papers. We found that it was quite well documented that risperidone caused hyperprolactinemia but the psychiatrists were quite flippant about it and didn't think it mattered.The official stance in 2008 was that 52% of patients developed it. I checked some medical websites now and it states that actually 92% do develop hyperprolactinemia from Risperidone. so I bought myself a medical book about endicronology.I learned that dopamine regulates prolactin. If you stop dopamine with antipsychotics, you will automatically develop hyperprolatinemia. If you have too much prolactin it will stop ovulation in women and the production of testosterone in men which will automatically stop sperm production. My son asked his GP to test his prolactin levels and she refused: she didn't see why she should. Luckily a male GP was helping out at the time at our surgery and my son went to see him. Being a man, he was much more unserstanding. When the tests came back there was a big uproar at the surgery: my son's prolactin levels were sky high and his testosterone levels were practically inexistant. My son weened himself off the Risperidone behind doctors' backs: he was terrified that they could yank him back into hospital against his will. He wanted to see an endocrinologist but his GP refused to give him an introductory letter. He had lots of other side effects from Risperidone. Once off the medication, the prolactin levels dropped in about 6 weeks. It took nearly 2 years to get his testosterone and sexual functions back to normal.

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  4. You're talking physical, but the psychological effects that snowball from a diagnosis of schizophrenia contribute to "no children".
    With a diagnosis employment is unlikely , as the patient has to be on medications, medications prevent both the motivation to work and the cognitive ability to work. Without work or function, a person would likely have low self worth . They should be rationally depressed then, but then this depression is an illness to be treated by the psychiatrist.

    Without employment a girlfriend would be hard to attract and keep. Without money, no power.
    A woman can define herself as a woman with beauty, nice legs, breasts , hair and make-up. A man defines himself as a man often by being employed- making money.

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  5. Anonymous:

    Frightening, isn't it, how few rights the mentally ill have? I recently discovered that as a 'schizophrenic' I am banned from becoming a school governor. I have no ambition to become one, but I find that this hurts. I have four children (as I am fond of boasting) I am a responsible and capable mother and person; why should I be treated as an outcast? I spoke to another mother about this recently - she said, 'Of course there have to be safeguards'.

    What is that supposed to mean? Why should there be any more safeguards if I applied to be a school governor than for any other person? I think rules like this send the wrong message - that those who are, or who once have been, mentally ill, are unsafe.

    Your son was so lucky to have your support - what makes me cross is how countless others who have been caught in the mental health system are written off when they could have been helped to recover. How is he now, by the way? Does he have work, a girlfriend, a family of his own? I don't mean to pry, I am just interested. I don't know how long ago all this happened, but recovery can take a long time, especially when trust has been abused in this way. It is shocking that it took so long to get his functions back to normal. The whole story is shocking.

    And Mark: thank you for commenting. My feminist hackles were raised by the points you make about how a woman defines herself compared to a man, but I take your wider point. That psychiatric medication affect work and function and result in a sense of low self worth - nicely put. And you are right that self worth in men is often linked to their employment - what they are worth in the eyes of the world.

    However, I would say that most women - sensible ones, who are in the vast majority, no matter how the tabloids and vapid magazines portray womanhood - rely on more than looks for their sense of self worth. We also value relationships of all kinds; when we are drugged up to the eyeballs and cannot communicate clearly or effectively, we are negated. And of course, women also value work to assure them of their place in society, just as men need relationships - we are all made from the same material after all.

    How the media portrays women, how women fall for the lunatic appeal of plastic surgery - I could write a good deal more about all this. (I recently read Caitlin Moran's 'How to be a Woman' and she has tackled the subject quite effectively). But as a man, please believe that women are more than skin deep - all of us - and we should all work together in society as equals to strengthen the self-belief of both sexes, not just of the one at the expense of the other. Men and women work best as a team!

    I hope I haven't frightened you off with this 'rant' - I really do appreciate your comment and hope to hear from you again. I just don't think that 'Beauty, nice legs, breasts, hair and make-up' play a valid part in the debate. In fact I have witnessed many perfectly nice-looking men and women let themselves go completely and deliberately to pot as a result of the trauma they have undergone in the mental health system.

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    1. I so agree with Mark. He says it as it is. My son has been off medication since December 2008 but the diagnosis follows him as a shadow and stops him with getting on with his life. He moved 250 miles away to the other end of the country. He felt free at last and wanted to get on with his life in peace and quiet. It wasn't to be. His CPN found out his mobile number, tracked him down and more or less forced him into giving her his address and getting himself a GP. He feels watched again and is thinking of moving again. His diagnosis of severe mental illness is there to protect doctors who failed to spot the psychosis he developed from Olanzapine withdrawal. He had been put on olanzapine because he was delirious due to a bad infection. I was appalled at the psychiatrists' ignorence about the medication they prescribe. Sometimes I wondered: do they really not know or are they pretending and lying to their patients. So no, my son hasn't got a job although he is a nice and intelligent man with a university degree in plant and animal biology as well as two MSC. He would have a lot to offer but because of everything that has happened he doesn't trust anyone easily anymore. it would be nice if he could find a nice woman to love and to make him laugh but... He finds solace at the moment in nature.

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  6. Hi Again. It is still early days for your son, although I know that is scant comfort for you when you are living through them. I am sure he will be ok in time. I am equally sure that there is someone out there for everyone. He is lucky to have your support and understanding.

    And yes, you're right, I shouldn't have told Mark off, he does make valid points, I was just annoyed by the fact that he thought making use of their appearance might be enough to help women to get their lives back on track. I think the problems with lack of self-esteem go a lot deeper for both men and women, although of course there are differences in the way we operate in the world. But I should get off my high horse - apologies, Mark.

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  8. I remember telling my Psychiatrist that respiridone had ended my sexual function and her reply was "Well do you really want that?" ....

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  9. Certain psychiatrists, in my experience, seem to think it is their function to say very little, if anything at all. I met an old man recently who told me that he told his psychiatrist that he had been on medication for forty years, and the response was...nothing at all. They sat there for ten minutes in complete silence. The old guy was not complaining when he told me, but my thought was - how shockingly rude! Above all, mental health professionals need to remember that their patients are people, and that people matter.
    All the best to you, Adam.
    Louise.

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