To be so annoyed with bloody paternalistic NHS

[MyKindHiker]

I am a lifetime migraine sufferer and as I'm getting closer to menopause they are getting worse in frequency and severity. At least half of all days I wake up with some form of aura, go through packs of nurofen and sumatriptan. Anyways it's been years since I considered any intervention other than just taking meds when one coming on (not necessary as not that frequent through adulthood), but I gather from talking to others there are some really effective meds available now which can prevent them entirely.

Go to GP who looks at recent bloodwork done to check my hormones and says as I'm still fertile and having periods, he can't prescribe in case I get pregnant while on them. I explain I have 2 kids and don't want more. In fact, can't technically have more anyway due to birth injury with second. And husband has had vasectomy to prevent accidental pregnancy as due to birth injury I could get pregnant but couldn't carry baby to anywhere near term. Which is beside the point as I do not want any more kids anyway.

Anyway doc says I still can't have the meds and the rule is for women of childbearing age the rule is they need to go to a special clinic with a 12 month waiting list and do all the steps first (elimination diet etc... I have TRIED THIS OVER 30 YEARS) and prove I'm not pregnant.

I mean what is with these people? If I was a man, I would have just got the meds to prevent a very debilitating condition. But because I'm a woman I can't have the meds 'in case' I become pregnant as though I'm just a uterus on legs who can't think for myself and decide not to become pregnant? Why is my word not enough that I will not have an affair with a non-vasectomied man and get myself up the spout. Ridiculous.

I’m 48 and still take the pill. It can depend on your GP. I have PCOS and it’s the only successful way I have found to manage my symptoms. Younger GPs wanted me off it but I see an older GP who looks at me and says I’m not overweight, don’t smoke etc so some of the risk factors are minimised. Eventually she wants to wean me onto HRT and then wean the dose of that down.

I tried the mini pill as there’s no age limit on that but the progesterone only meds exacerbated my PCOS symptoms.

Edited to add that I was told that migraines would be a reason to stop the pill though. I was getting oestrogen withdrawal headaches during the pill breaks but they said if they were migraines I would have to stop. They aren’t migraines from what I’ve heard of migraines, just really bad headaches.

I'd go back and see a female GP. You've listed all the ways you cannot get /don't want to get pregnant and they are still denying you the medication you need to function.

Get Botox in your head, fantastic for migraines

This is ridiculous, it was quite a longtime ago now but when they put me on roaccutane for my skin at 18 they did a pregnancy test and made me sign a form to acknowledge any pregnancy would have to be terminated due to my treatment and possible birth defects. I assume they aren’t allowed to do this anymore? I was on the contraceptive pill at the time though so maybe this was the difference?

I had this last year. I had to have tried and failed 3 preventative medications before they referred me to neurology and the migraine nurse. From there I was able to start anti CGRP therapy which has been completely life changing for me. I went from migraines nearly every day to one migraine a month. We are in the south east. I dont know if services differ in different areas of the country. I would get a second opinion if you can. Child bearing age should not impact the care and treatment you receive.

If it is topirimate then it’s new guidelines,due to the potential risks of damage to a foetus,I know you said your husband has had the snip.
Drs are also contacting women who are taking this for other conditions foo for them to be aware of the risks and probably to stop them getting sued.

if you’re having so many migraines I’d ask for a referral to a neurologist for migraine treatment,there are lots of options.i have Botox but also take a tablet daily called atogepant.

the neurologist will probably recommend you stop taking so many over the counter medications as these can cause severe rebound headaches,

No, you are missing the NHS's point and so is OP. If a woman can get pregnant (and OP is entirely relying on DH to prevent pregnancy) she might. That she can't carry a pregnancy to term is irrelevant since a baby born at 22 weeks can (now) live (and if she miscarries earlier than that there is the trauma and the danger to her own life to take into consideration). And that child would be affected by the medicines OP wants, which will end being a cost to the NHS (i.e. all of us here who live in the UK) as well as a possible burden/at least a life-changing event for OP and DH which might destroy their marriage. And OP could sue saying she was not warned properly of the consequences of the medicine she wants if she should become pregnant.
It's nothing to do with being a grown woman who can make choices for her own body and can be relied on to do what she says she will. We do not have bodily autonomy in that entire way - accidents happen, vasectomies (could) fail, OP might have an affair and use contraception but it might fail (rare but possible) etc. The NHS (i.e. the rest of us who pay the bills) cannot take this risk, and the rules are the rules: fertile women cannot take this medicine for all the above reasons.
FWIW my migraines disappeared with the menopause.

Are you saying that a woman with migraines should be left to suffer in a way that a man wouldn’t, to save the NHS some possible costs? And that the NHS should take decisions on her behalf to avoid problems in her marriage?

No, I am saying that the NHS has to protect itself against costs that are unnecessary, since it is tax payer funded. And OP's doctor is correct. OP is not protected against getting pregnant, her DH just has a vasectomy. GP can't take the chance she will accidentally become pregnant. And every woman is treated in the same way because we are individuals and will make different decisions and change our mind over matters we thought were settled. So the rule is that fertile women do not take this medicine because of its effects on babies in utero. OP is asking for special treatment because she is a sensible woman with full bodily autonomy with a DH who'se had a vasectomy and her GP should trust her (and his reputation) because she says so. Not on.
No, of course I don't think women should suffer with migraines when men don't have to, but women's physiology is different from men's - we have a completely different endocrine system etc - and medicines that work on men do not work on women or have consequences to women's bodies that they don't to men (and the medical profession is just about waking up to these facts now) so it's pointless to say women are not being treated the same way as men - we are not men and we cannot be treated as if we were (men don't get pregnant, for one).

Not wanting to hijack the thread but similar circumstances in regards to our own bodies.
I begged and begged for years to be sterilised but was continually refused as I hadn't had any kids and I might change my mind !! Told no one would do it till I was over 40.
I ended up having the combined pill for years then the depo for the next few years until finally they said they wouldn't prescribe anything only the mini pill. In the end after another round of arguments they agreed reluctantly to the sterilisation at 40.
Why cant we as adults make dissisions about our own bodies.

I’m 47, I had a coil inserted in August - for contraception

Ridiculous. On that basis, a man who drives for a living should not be given strong painkillers as he might drive anyway and cause an accident and that will cost the NHS a fortune in the cost of his treatment, and the treatment of anyone he harms as a result.

All of thes risks, while legitimate, are not a reason to NOT give a woman medicine she needs.

I note that when my friend wanted to get her coil removed, the nurse didn't want to do it unless she had confirmation that her DH had agreed to this! Meanwhile, when DH went to get a vasectomy, they didn't care if I agreed ... on no, they didn't understand why he was getting a vasectomy when his wife (me) could have hormonal contracpetion instead (I can't).

It's all bullshit and it's all about women's bodies continuing to be seen purely as incubators.

@NewCushions Shocking.
I am able to take hormonal contraceptives if I so wished at the age of 45. Like hell am I going to! My husband had to step up and have a vasectomy after our daughter was born (his only child).

Does anyone remember that hilarious report from, I think WHO, which basically said, "women of childbearing age shouldn't drink at all in case they get pregnant"?
We're back there.

Well, with slightly less transhuman nomenclamature, women's bodies are set up to build babies and we have to take this into account. NB I have never been refused medication because I might get pregnant, ever, and I think it's weird. However, I see the NHS's point. And we do not have full bodily autonomy - our bodies do what they want rather than what we want quite a lot of the time.
When I have had coils removed or put in I have never been asked if my (ex) DH agreed. I did however have to go to the consultation about my (ex) DH having a vasectomy. They wanted to be sure it was a mutual decision. Times seem to have got more misogynistic (unsurprising what with trans nonsense being taken as Stonewall gospel).

The NHS has to protect itself against negligence. Costs are a factor, but they are not uniquely a higher factor when you are treating a women of childbearing age who may become an incubator to a foetus that may never exist, compared to a man. Women do not matter less than men and they should not be expected to accept a lower standard of treatment.

The NHS exposes itself to all sorts of costs all day long. When it suddenly decides in a case like this it is a bridge too far, but not for men (like pp’s example of the lorry driver, who may kill himself and others if he has an accident through medication-induced drowsiness) that is clear, rank misogyny.

It is not ok to neglect the person who is alive for a putative potential person who may never exist and who cannot exist outside of the woman’s body. Women with untreated migraine can suffer immensely and can be so disabled they are unable to work or take full part in society. That is not acceptable when there are effective treatments.

The NHS is meant to be offering patient-centred care. That means respecting a woman’s autonomy and accepting that it is for her to weigh up risk factors and benefits and what she is prepared to live with, not for a doctor who may see her for all of ten minutes and then can forget about her situation. She is the one who lives with the consequences, not the doctor. So the ultimate call has to be hers. It’s nothing to do with not being men, it’s about respecting patient autonomy, something we were meant to have had for decades, but still don’t, as the even NHS showed.

As mentioned upthread, the legal ramifications of this are solvable. Where there is a will. Clearly there is not, and the medics profession would prefer not to allow woman the same autonomy and treatment options they offer men. It’s just the same old, same old, we’ve had forever.

Infantilising women in this way is not ok.

I never suggested any of that. Yes, negligence is a problem and the NHS should do more about it, frankly. But health care is not a bundle of options we can choose from. The UK is not the US where patients see drugs advertised and demand they be prescribed whether suitable or not. It is the doctor's job, based on his knowledge of patient, illness, taking a history etc to decide the medication - not the patient's. I know nothing about migraine medication (despite having taken such medication for years) and would not tell my doctor I should have x treatment - I am not a doctor and I don't know what risk I am taking, so I cannot rationally decide to take it.

@Grammarnut's comments made me think of that too!

That kind of logic leads to the notion that women under the age of 55 who haven't had her ovaries and/or uterus removed (because any other method can fail!) shouldn't be allowed to drink, smoke, or indeed take ibuprofen or any other medications, teas, or foods that could cause harm to a foetus, should they somehow fall pregnant.
Never mind the woman's actual, daily quality of life - it's all about the potential foetus's potential quality of life, should it be conceived and not aborted.

The risk they are trying to avoid here is a child with birth defects.
OP has stated she cannot carry a pregnancy to term.
If she became pregnant while not taking the medication, there would be no child.
If she became pregnant while taking the medication, there would be no child.
So she is being denied medication she needs "just in case" of something which cannot happen.

I have seen my GPs look things up on Wikipedia before. I have indeed, at times, known more about a particular medication than my GP because they are not all-knowing gods, and given how busy they are and the fact that they don't specialise, they won't be up to date with absolutely everything that's happening in the medical world.

So yes, they should listen to their patients, and if the patient is well-informed, has tried every other option, and - at the end of their tether - wishes to trial a slightly riskier medication, a good GP should allow that.

GPs also differ in their recommendations. My GP for instance, has initially refused to prescribe me the combined contraceptive pill because I am late 30s, and smoked in my 20s - otherwise I'm slim, in perfect health, and have no other contraindications. People on this very thread have said their GP will prescribe the pill into their late 40s/early 50s!

I didn't push my GP for the pill at the time I last saw her, as I don't really need it right now, but I may do in the future and she should - if she's a good GP - say yes, knowing that I'm fully informed of the risks and know what symptoms to be alert for.

I disagree. They can recommend medication as advised by the guidelines and lay out the risks and benefits, but it's the patient's decision whether or not to take it, and we can ask for second opinions if we don't agree. One doctor's word is not law. And as for "based on his knowledge of patient" - in this case, he knows that the OP would have to terminate a pregnancy anyway, so it's a very poor risk assessment to say she can't have the medication without being on contraception. There's not going to be any baby.

I'm pretty sure they are still allowed to do that.
I know someone who has a really extreme medication that would definitely cause birth defects - other people can't even risk touching the stuff without gloves on! - and she had to sign a similar waiver.

Do you think you are taking too many meds for your migraine? Perhaps try another pain control method, such as TENS? Sometimes pain killers can have the opposite effect, especially if you mix them.

My consultant explained that the brain can really only take one pain message at a time, and to try to distract with another feeling that can be controlled. It works with me, though I haven't had a migraine for years. I have other pain instead.

Why not ask for an appointment with the PAIN CLINIC who are expert in pain control?

Interesting point. And I did not say anything like that, but that a doctor is the one who prescribes, patients do not tell the doctor what they want - because usually they have no relevant or well-understood medical knowledge.
I drank through both my successful pregnancies in moderation (probably a smal glass of wine a week). Both DC fine, intelligent and focused. I think the suggestion women of child bearing age should not drink at all is utter bollocks, btw.

You have my point upside down. Yes, the doctor can recommend and offer a choice of possible treatments with their side-effects. But the patient only gets to choose from those on offer, not ones the doctors is certain will harm. A second opinion might or might not uphold the patient's desired view.
All I am saying is that medicines are not a pick and mix we can choose from. We have to take our doctor's advice. In OP's case the doctor said it was not safe to take the medication because she might become pregnant. And he knows that's possible even if it means an abortion, and that puts the patient at risk, and it's a risk the doctor (and the NHS) considers to be one not worth taking.
I understand migraine. I used to have the sort that start with an aural aura and progressed to blinding pain, disorientation, inability to do anything, see properly, and frightening aphasia, and which not even prescribed pain killers touched. I sympathise with the OP on that front. But I think 'bloody paternalistic' is an unrealistic description of what her GP is trying to tell her.