Woman refused hysterectomy on age grounds

[Mittens67]

Apologies as I don't know how to link but have just read on the bbc app that a 26 year old woman who has lived with severe pain from endometriosis since puberty and even had sepsis is being refused the hysterectomy she wants in order to live any sort of pain free life because doctors insist she will want children later.
The irony when the nhs is perfectly happy to sterilise younger women and girls in the name of "transitioning" is mind blowing.
I had the same argument made to me by numerable condescending doctors when I wanted to be sterilised from age 30 instead of taking the pill which didn't suit me. I knew I didn't want children (and have known this all my life, now aged 57 still never wanted then) but doctors knew best because all women must want children.
I had thought progress would have been made over the decades but clearly not.

Yes to be fair, I think doctors need to communicate better with regards to the pill as a treatment for endo, explaining that the progesterone component will treat/suppress the endo therefore helping with pain and symptoms. Maybe this point isn’t highlighted enough. Also yes, some doctors are bad, and probably do fob off a number of female complaints with the pill. I’m glad you’ve found some relieve with POP. Mirena device is also a good option, but I appreciate that’s a little more invasive.

@buffyspikefaithangel I had a similar experience when I was trying to get a diagnosis. I had all the symptoms, I mean ALL of them. Asked a male GP if it could be endo and he cracked out laughing and said 'what on earth makes you think it could be that?' I had rectal bleeding as a symptom and he shrugged his shoulders and said haemorrhoids. When I finally got to see a specialist it was found in my bladder, bowel, rectum, ureter, pelvic ligaments, ovaries, pelvic sidewall. The biggest nodule was the size of a golf ball. FWIW I never had to argue for a hysterectomy, I was told straight away that I would have to have one because I had an obliterated POD. They had to cut my uterus off my bowel. It sucks. I feel for you.

I mean they've said until they get in there it's all theoretical but the meeting will look at the MRI in depth
I know my ovaries are kissing, the endometriomas are up to 9cm, it's on my rectum and they found adenomyosis
Currently on 240mg dihydrocodeine plus naproxen, paracetamol and oramorph for flares

No but tying tubes can.

And my point is that men are awarded autonomy over their bodies and women are not.

I saw a male specialist about my horrendous periods aged 40 - he asked if I was finished having children (which I was) and then asked "but what if Brad Pitt wanted you to have his baby, would you be done then?" Was given a coil, which made periods worse

I read that news story and thought she would prob get fast track if said she was a man!!

Or on Starmer fast track assistance for early death … which made me think it’s for people avoiding inheritance tax!!!

Nothing rational any more.

I agree.

A lot of women on here are bizarrely gung-ho about what is major surgery that IMO should always be a last resort. And I find the apparent eagerness of some doctors to remove a major female sex organ disturbing and rather Victorian (hysteria, anyone?). This seems to be particularly the case in America, perhaps because of financial incentives.

Hysterectomy has a number of nasty and significant risks, including increased incidence of dementia and early-onset dementia, pelvic organ prolapse, incontinence and reduced sexual function/orgasm - and, in some cases, complete inorgasmia. I personally would not want to fuck around and find out with something that increased my risk of dementia!

And women need to know that neither hysterectomy nor natural menopause are guaranteed cures for endometriosis. You could well end up with early-onset dementia and endometriosis in your 40s!

And yet someone I know is on injections to induce menopause because her endo is so severe.

But it’s not just tying tubes they are talking about and even that comes with far greater risks than a vasectomy.

@driedonion having been on those drugs (which, btw, are the same drugs being used as so called 'puberty blockers') and having had a hysterectomy and premature menopause due to removal of ovaries in my 30s, the drug induced menopause is only a taster of what surgical menopause is like.

Also anecdotally, I have heard from patients that they sometimes don’t actually get that much pain relief from the temporary menopause inducing medication like Decapeptyl and Buserelin. Some still have pain.

They didn't work for me. Didn't even stop the bleeding 😔.

I was actually menaced by a Consultant when I refused a Mirena Coil to control very heavy periods and said I wanted a womb ablation instead as I already had children and was at the time 43.

He was insisting I may still want to have another child. He was so furious about it that his face turned red then purple.

I got my way and had an ablation.

It would be sad that this young lady cannot have children of her own but as long as she signs a waiver then they should help her.

I’m sorry, it really is such a pesky condition. I wish there would be more focus on women’s health in medical training and research.
Have you found anything that’s been helpful so far?

The Mirena coil delivers a steady dose of progesterone to your body. Progesterone calms endometriosis so it would have helped your symptoms which might have been coming from deposits outside the womb. Just ablating the womb lining will help with heavy bleeding, but it won’t treat endometriosis.

Oh, apologies if your post was just that you had heavy bleeding, not endometriosis. I assumed you had endo because of the title of this thread.

@LadyGabriella that's a hard question, tbh, because I've tried basically everything, including hysterectomy and excision, and the deep disease in my rectum has come back anyway. The surgery has helped but didn't fix it. None of the hormone treatments worked. Pelvic physio has helped, as has CBT, specialist pain management, support from a dietician, a menopause specialist, kicking things and complaining a lot, a decent endo specialist. It's all about coping really, because pain free isn't possible.

Yes, well, I would caution any fellow endo sufferers against unwittingly accepting that "treatment" and advise them to do thorough research into the potential long-term effects of "temporary" menopause. I would also suggest exhausting all other options first. Doctors tend to assume that patients are uninformed - and most probably are - and, IMO, they take advantage of the fact that someone who is in a lot of pain is likely to be desperate and amenable to the suggestion of extreme measures.

My experience is that gynaecologists are suspiciously eager to push chemical menopause. They misrepresent it as some sort of miracle cure, downplay the risks and negative effects, and do not tell you about the many cases where it doesn't help. Yes, that's all very well, Mr Gynaecologist, but you're never going to go through menopause of any kind.

The heavy-handed, baby-out-with-the-bathwater approach in gynaecology seems to reflect a long-standing view of women as simple, primitive creatures, whose ailments are entirely rooted in the uterus, and shows no understanding of the complexities and interconnectedness of the female reproductive system, and, indeed, the whole human organism.

Personally, I am taking a third of my prescribed dose of Norethisterone (progesterone-only pill), and have found that sufficient to effectively take away almost all of the symptoms of my stage-4 endo.

Again, my anger is at the fact men are granted autonomy on their bodies, women are not.

I think elective hysterectomy should be allowed at any age. It would have to be made indelibly clear that the patient is fully responsible for any regret she may feel, though, and that absolutely no compensation will be given. Otherwise there'll be a slew of lawsuits and sadface Daily Mail articles about how "the NHS sterilised me while I was vulnerable, they should have given me more counselling first, the doctors should have realised my partner was coercing me into it", etc.

They are declining because women are too stupid to know their own minds.

And I would have thought constant debilitating pain has more of an effect on your life than something that might happen 40 years hence. Also means you can't get uterine cancer - if it's not there, it can't get cancerous.

As for women who have hysterectomies dying younger, my 85 year old mother hasn't got the memo. And if she dies next year and would have otherwise died at 96, I think she would take that, given she has been pain free since her operation in her 40s - the operation does work for some people.

I wouldn't want a significantly higher risk of dementia either, although it would be more of a concern for my son than for me.

But if I was in debilitating pain, I wouldn't care about what might happen in my 80s, I'd care about the now. Quality of life has to come before what might happen in old age (within reason, like you don't stuff yourself and then complain about type 2 diabetes).