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.

My doctor said that we who have migraine are at greater risk of circulatory problems from the CP than others, and should come off before age 40.

Its the NHS rules, you can't get the drugs without being on a form of acceptable birth control, I'm not saying that isn't paternalistic or problematic but it is how it is for now. I did not advise the OP to get a copper coil, I only said that is what I used as I can't use oral birth control due to migraine and was contraindicated for the contraceptive injection or implant. Sadly almost all migraine preventatives require contraceptive but propranolol doesn't so the OP should be able to get this from her GP without using any for of contraception.

Agree totally with this. It is not acceptable to deny someone autonomy over their own body and health, simply because of their sex. It is not beyond the wit of man to have a system that can document that the patient has been informed of the risks in the event she gets pregnant, and signs a waiver to avoid pregnancy and absolve the prescribing physician of liability. Neither OP nor anybody else should be forced to suffer because she’s seen as an incubator for a non-existent person.

As for the pregnancy prevention programme, not everybody feels well on hormonal contraception or the Mirena. And women can find it unacceptable to have the copper coil due to trauma and other reasons. We can NOT coerce women to accept birth control they do not want, simply to get medical treatment for a painful condition that other people access unhindered.

If a woman suffers debilitating migraines, can’t take hormonal contraception and can’t have a coil fitted because of trauma caused by sexual abuse or assault, what then? She just gets left to suffer? What absolute misogynist bullshit. Unacceptable.

Can’t OP provide negative pregnancy tests? Or go on the pill? Or would she need to be sterilised?

Made my symptoms so much better. So glad I had it done. Thirty years with maybe one migraine a year instead of 12 or 13 and so much milder, no comparison.

Tell that to all the people who sue/comllain/report...its the current hysteria of blame that has caused this.

It’s not so much that fully informed women who had signed to say they understood the risks of valproate began to sue the NHS,
but more that doctors were prescribing without giving proper advice, isn’t it?

This is my understanding. Having said that, there may be situations where patients complain, having been fully apprised of risks beforehand. However, that is not an impossible problem to solve, provided you have e mechanism to document the explanation of risks and the fact the patient consents.

The NHS prescribes medication daily without fully explaining risks. Off the top of my head, just in my own family, DH is dependent on Pregabalin, which he was prescribed for anxiety and wasn’t warned it was habit forming. It was useless for the anxiety but now he’s struggling to stop taking it. DD recently was prescribed antibiotics that are known to cause hearing loss in some patients. The GP mentioned not a dicky-bird about the risk of this. Recently, children have been prescribed puberty blockers and other meds that can render them infertile for life, with nobody considering that maybe a teenager is not in a position to make that kind of life-altering decision.

I could go on, but I don’t want to be a bore. Why are all those situations where patients can suffer real harm A-ok, but the minute there might be a small chance of a future pregnancy, despite warnings, that’s suddenly a bridge too far?

There’s a word for that. Misogyny.

Wondering if the nurofen are causing rebound migraines?

Yes it's a disgrace that you aren't trusted to not get pregnant . You have my sympathy, migraines are so debilitating no one can possibly understand the misery of them unless they've had one, ive suffered since i was 17 and at times felt like life wasnt worth living . Do you have a female Dr at your practice, she maybe more sympathetic.

It seems easier for transmen to get prescribed testosterone than it does normal men who need it. I've known guys with low testosterone (hypogonadism) who were having serious problems with ED and lack of energy at a fairly young age but the NHS use a cutoff much lower than advised by industry associations like the British Society for Sexual Medicine, so they wouldn't prescribe despite the symptoms being clear.

The BSSM says levels <12nmol should be investigated with possibility to trial testosterone therapy, but my friend was denied at 9nmol in his early 30s despite the average level for somebody of 45 yo being 21nmol. GP said he'd need to be <8.75 but didn't qualify being at 9 nmol despite some previous tests being lower (they only wanted to look at latest result). However, if he'd lived an hour away in Bristol he'd have been prescribed if <10 nmol.

He had the testosterone level of an 85-100 yo and could hardly get it up. Ended up paying £150 a month with a private clinic and to my knowledge still is. Doctor said he'd have been more likely to get it as a woman wanting to change sex.

Absolutely change your GP, write a letter of complaint about that one and demand the healthcare you're entitled to. That is not acceptable

I'm sorry, OP, that's ridiculous, and so frustrating. I don't have migraines but did smoke in my 20s (no other risk factors though), and at the age of 38 my GP dissuaded me from going (back) on the combined contraceptive pill after years off it, as she said at my age it was a risk!

What on earth are women in your situation who can't use hormonal contraception, and who find the copper coil gives them untenably heavy periods, supposed to do? Have major surgery and undergo the risks of general anesthesia to have your tubes tied?? And that's hardly foolproof! It has a failure of 3 to 5% in some studies! In fact, anything and everything can fail, especially the pill. So how on earth is a vasectomy not enough? And what about saying you use a diaphragm (so old-fashioned) or condoms?

Surely they should just have a requirement to take two-monthly pregnancy tests and ensure you're fully informed and willing to abort, if they're so bloody worried.

Well it’s a relief you aren’t the decision maker given the damage these drugs have caused.

I’ve shared several links - The OP would need to be on a pregnancy prevention programme (highly effective contraception) and have an annual risk assessment.

Having read the pregnancy prevention programme, and considering male sterilisation is considered highly effective and suitable on this site, I'm not sure why OP's only sexual partner having had a vasectomy isn't good enough. Why is it any different to her tubes having been tied, or her only having female sexual partners?

Conversely, at the age of 59 I'm having to fight not to have a hysterectomy (there's nothing wrong with my womb) and try to get access to the less invasive, equally effective, but longer term treatment given to women of child-bearing age. I'm sure the attitude is I don't need it any longer so I should just do what's easiest for the NHS. Nope.

Ridiculous. Sorry to hear this Op

Maybe you need to ask to go on the pill so your medical notes say you are taking contraception. Don’t take them. And get the migraine medication prescribed. The GP saying you can’t be on the pill after age 37 is talking bollocks. I’m 45 at every annual pill check up I ask the GP (see a different one each time at my practise) and they say there is absolutely no evidence to say it is dangerous after a certain age (assuming you’re not overweight, not a smoker etc).

You wouldn’t have got anything as a man that is not an approved medication, so you are being VVU. And “these people?” Very unpleasant and utterly high handed.

Agree that your circumstances shouldn't mean you can't have the meds. Very frustrating for you.

Just wanted to say that having tubes tied is a day case procedure using keyhole surgery with short recovery time. I'm not suggesting this as an option for you, but it could be an option for others.

There are new studies and medication apart from triptans so worth getting seen by a neurologist.

I had to pay privately as the waiting list was 16 months and I was barely able to function, so it was money well spent.
I've been on candesartan for almost a year, which has reduced the severity and frequency of the migraines in the last few months (took a while to increase the dose to 16mg).
I've still been having 2-3 migraines a week so recently started on rimegepant. It's only been a few weeks but hopeful.

GPs haven't been much help for me at all I'm afraid.

Having had laparoscopic surgery before (albeit not for tubal ligation), it's still a major surgery that carries risk, can be very painful in the aftermath (I had agonising shoulder pains for nearly 48 hours afterwards thanks to the gas used to inflate the abdomen being trapped post-surgery), the incisions still take time to heal and can get infected, and it's massively more invasive and risky than vasectomy. It's great for those who want it, but it's really not a comparable alternative to less invasive contraceptive methods.

No it's because there have been multiple.court cases regarding this.

Lots of of ladies have had the risks explained to them. But later sued their doctors.

and now the guidelines have changed.

this information a out birth risks has been known for decades. And ladies on the medication have been told about the risks for decades but the doctors were still sued.

If there is court cases about the other situations you described then the same risks would be highlighted.

You cant complain now the rules have changed.

She has been given the healthcare she is entitled to.

She's not happy that the waiting list at the hospital is so long to see a Specialist. Not sure how a complaint about the GP will improve the waiting list.