To support 20 year old dd in wanting an hysterectomy and ask for advice desperately?

[runfly]

NC
DD is 20, she is autistic amongst other things and is also on the learning disability register but is able to express her own needs.
She has horrific periods and has had for 7 years, they really affect her quality of life, they are long, unpredictable in timing, heavy flooding, high pain and takes medication to try and reduce the bleeding and manage the pain but it is still awful and she really struggles with taking tablets . She is always having issues with anaemia too. Yesterday she was in so much pain she vomited numerous times. She has tried different types of the pill on more than one occasion and it made her feel awful. She is worried about the implant for the same reason.

She was referred to gynae but would not go as they offered only an internal ultrasound (although the leaflet said that they would not do it on those who aren't sexually active anyway)
She is very open and has been for years now about not wanting children, she has some needs herself and feels like she would either be overwhelmed or that SS would step in anyway because of her needs and she would have to go through all the pain for nothing.

We have a long history in the family of endometriosis. I lost most of my 20s having surgery for endometriosis and cysts and ended up having an emergency hysterectomy at 26, my Mum was 32 and my aunt has exactly the same issues.

I think there is very little chance of her getting an hysterectomy in the next few years isn't there? I fully understand it is a very dramatic outcome at such a young age and I understand that she could change her mind but she has said she would rather regret not being able to have children than live like this.

AIBU to desperate ask for advice, alternatives or experiences?

She’d end up with a vaginal prolapse. Would she want to walk around with her vagina outside her body?

Oh FGS!

Not all women who have that operation end up like that.
Why are you assuming so?

But not always. And especially in young women.

You need to explain that to discuss hysterectomy she has to go have all the gynae exams first incl scans
Find a gentle gynae who wont do scan straight off or maybe start with over belly scan then explain why needs to be intetnal scan under sedation if needs be

I didn't want a coil despite everyone telling me for years how much it could help my heavy and painful periods. I was asking for a hysterectomy instead when the gynae consultant said he'd put the coil in by general anaesthetic if Iit was too painful without. This made me trust him so I agreed to try it. Absolutely life changing, wish I'd done it years ago. No more pain, no more heavy bleeding, insertion was no worse than a smear.

Please keep talking to your daughter about the mirena option. The word "coil" put me right off, tbh, so calling it a mirena device or something might help.

Good luck, she's got a lovely caring mum.

@runfly Why are you asking for the cost of an MRI? Will her GP not refer her for an expert opinion and then further tests on the NHS?

I think the odds of having a hysterectomy on demand are remote. It's akin to sterilisation and no matter how certain a 20 year old is now, they may change their minds. A doctor would be very wary of going down that route.

The reasons are that there may be other less drastic treatments in the future and even now, there is the Mirena coil. I think you are likely to hit a brick wall if your D refuses some of the less invasive treatments.

Because she has a long time alive at 20 and it’s a known risk? You think her pelvic organs won’t collapse down and rest on the pelvic floor muscles?

Because ablation exists?

Because all other avenues haven’t been tried?

Because she will be on meds for life or have long term miserable health conditions?

Because other HCP put up with awful pain to avoid prolapses? Have you not noticed we don’t tend to go in for operations unless we have to?

Ive had pts with premature menopause, it’s awful for them.

And it’s all a moot point because no surgeon in the uk is going to do it because they won’t fancy finding out if their indemnity insurance works. No ones risking their livelihood for a patient.

My dd is 23 and has pcos. She wants to have the implant fitted (actually, she wants a hysterectomy as well) but I have told her when I had one fitted and had severe migraines from it it still took about 3 months to have it removed. The depo lasts as long so I would try the injection first and then if it suits your dd @runfly maybe try the implant? My dd has really heavy periods for a couple of days with intense pain that makes her sick, they are also not regular so she can't predict when they will happen.

I can't imagine any gynaecologist would agree to a hysterectomy in someone so young unless they'd already tried every other option including the coil.

I don't know what the answer is, but your dd has my every sympathy. I can totally relate to years of painful periods and flooding. I grinned and neared it hoping for the early menopause that my DM and DGM had (no such luck). Best of luck with finding some respite and resolution.

I'm so sorry your daughter and you are having to deal with this :(
I went through almost the same with my 18year old unfortunately, she is also neurospicy so struggles with appointments. We did meet with the gynae team when she was 13 and they suggested injections, implant or the coil which she was not willing to consider due to a needle phobia.
Her gynae was amazing though and put her on patches. They have worked amazingly, and she hasn't had many issues since providing we remember to change it on the right day! Maybe talk to the gp about that option, as like others have said they've got to go through motions, but for us that worked out x

The GP referred her to Gynae, Gynae would only offer her the internal ultra sound, dd would not have one so they referred us back to the GP. They would not even give us an appointment to discuss anything until after she had had the internal scan which she will not go for so we just ended up back at the GP and have tried the pill. tranexamic acid and mefenamic acid (think that is what they are called).
I had the same problems at her age and ended up having emergency surgery for absolutely huge cyst removals. I am worried that she has the same issue. An MRI would show that and we could at least get that seen to.

Can I ask what the patches are please?

Yes she has been on the mini pill and another one also (I cannot remember which one the other one was as it was when she was 13.

Is it that she won't have any internal exam or prodedure? That's fair enough and there are all sorts of situations where women find them too traumatic or can't tolerate it. But a mirena insertion under a general anaesthetic should be an option in her circumstances, and far less drastic than the major surgery of a hysterectomy. And reversible, should the need arise in the future.

I'm also autistic, and had similar issues, also absolutely didn't want children, I then met someone and got married, and then when I was 30 it was like something just switched on, I desperately wanted to have children, it was an all consuming need.

She's just so young right now, it would be awful to regret it later on. Please encourage shorter term solutions first.

Yes I absolutely have discussed both the good and the awful with her. I had an hysterectomy myself (emergency) after multiple surgeries to remove extremely large cysts and endometriosis. They had to take everything it was such a mess and I went into full menopause at 26.
My Mum had an emergency hysterectomy at 32 although they did not take her ovaries so she did not go into menopause.

I am not going into discussion with her blindly.

Would an organisation such as Autism UK or the Endometriosis Society be able to help advocate for your daughter? It's bloody hard getting doctors to take women's health issues seriously, and I imagine even harderto get any additional needs or neurodiversty taken into account. Sounds like you're going to have to push really hard to get the right solution for your daughter's needs and I wonder if any specialist organisations can help. Hope that doesn't sound patronising, not meant in that way, just wanting you to have someone on your side x

Thank you , she is on tranexamic acid and mefenamic acid but she really really struggles to take them because of their size) When you say dissolve do you mean you are dissolving them before taking them in water or such?

Gynae need to make reasonable adjustments for her disability.
could you get in contact with the learning disability team at the hospital she was referred to and/or make a complaint through PALS for the treatment (or non treatment…) of her?

My dd is on the patch for bc, her periods are much lighter on them. You put a new patch on every week for three weeks and then have a weeks break.

What is it called please?

I got the coil 3 years ago after awful periods and don't get them at all now, it's been life changing.

Rainyrainyrainy Yes that is a good option thank you.

https://somerset.eolcare.uk/content/contacting-the-learning-disability-liaison-team-at-musgrove-hospital#:~:text=Welcome%20to%20the%20Learning%20Disability,someone%20without%20a%20learning%20disability.

this is what my local hospital do, hopefully yours has similar