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?

I'm so sorry your daughter is going through this. It's truly horrendous. I have extremely heavy bleeding, flooding, huge clots. I'm trying to get a Mirena Coil but on waiting list and last 2 appointments cancelled due to staffing shortages.
They've given me the Depo Provera injection while I'm waiting (had 3 now) and it's much worse, I've been bleeding heavily for 8 days now, changing tampon every 2hrs min. I was hospitalised with heart palpitations due to blood loss a few months ago and am on iron tablets but still can't get help.

'If she's struggling with the idea of the coil, how will she cope with a major op?'
drspouse it is the idea of anything being done vaginally that she is refusing.

I am so sorry that you are going through this too.
Like you she has had palpitations and is actually about to be seen by cardiology and blood tests again next week for iron again.

It is awful.

Thank you everyone. Sedation may be an option. We have been going round in circles with this for years now but no one suggested that sedation might be an option!

This. It sounds like her learning difficulties are making it hard for her to understand that there is no side-effect-free option here.

a Uterus does not just serve the purpose of allowing women to have children . It is an integral part of our anatomy. I would advise you to do some serious research on the implications of hysterectomy and hrt before advising your daughter to proceed with this surgery.

There are alternative treatments like uterine ablation available that preserve the organ. She would still lose her fertility, and there is no guarantee of it solving her problems for life, but hysterectomy should be considered the last resort, not because she shouldn’t control her own body, but becuase there is no going back if the side effects are problematic.

The trouble with having a hysterectomy young is that it dramatically increases the risk of bladder problems later, my gynaecologist told me that you only really get one shot at a bladder prolapse repair too , I had similar issues to your DD. I went for an ablation, I paid privately and was booked within two weeks. I spent about 8 hrs in hospital and had cramps for two days. I’ve never bled since. I can sometimes get ‘arse daggers’ for a day or two each month ( I believe I have some endo on my bowel) but other than that I’m in very very good shape. So please look into this option before major surgery like a hysterectomy, I’m one of the women that it’s really worked well for.

My dd had terrible painful long heavy periods. It took 6 years of multiple OBGYN's who tested for all the usual stuff like endometriosis and polycystic ovaries and kept putting her on higher and higher dosages of birth control pills (starting at age 12) and then the mirena coil and depo provera shots and tranexamic acid...none of which worked. Until finally a young obgyn straight out of medical school figured out that she had mild hemophilia. She had to go off all the hormones for 3 months (this is important) and then they ran the Bleeding Disorder panel and she was diagnosed. The treatments are still putting her on the pill and tranexamic acid, but it was hugely helpful to get a diagnosis so that she knew what was going on and the teachers/professors/medical professionals stopped telling her to just grin and bear it and that it would get better. And most importantly, she won't bleed to death when she has a hemostatic challenge like having her wisdom teeth out or having a baby.

Note that we have NO family history of hemophilia...this is a spontaneous mutation. Apparently about a third of adolescents with unexplained heavy menstrual bleeding turn out to have a bleeding disorder:

https://www.benendenhospital.org.uk/book-now/

If you can afford the £100, look for a private consult with a GP who specialises in women's health. It is worth going private. The NHS is hopeless. Good luck.

I doubt if she'd get a hysterectomy plus she would need HRT, but I would ask for an endometriosis ablation which would end or dramatically reduce her flow( I had one at 47 which was life changing)
First stop Ask GP for a gynaecology referral
Poor girl

Just realised she wouldn't need HRT unless her ovaries are removed, sorry
Highly recommend the ablation
It's a minor op done under a light GA
She would need a scan beforehand to check the endometrium but this is not vaginal
Sedation is an option too

Sorry I haven't read the full thread. But with regards the injection/ implant I've had both. I found the injection did send me hormones all over the place and I didn't like it. The implant however I found great. I had no periods at all and if you don't like it you can get it back out. Plus they last 3 years.

What about an ablation? That can ease flooding. It's not as invasive as a hysterectomy.

If the problem is ‘doing things vaginally’ then hysterectomy doesn’t solve the issue. Most hysterectomies are done vaginally, and even abdominal hysterectomy requires some vaginal manipulation of the cervix. Endometrial ablation is a vaginal procedure, and makes you irreversibly infertile.

If she can manage examination/ mirena fitting under sedation or anaesthetic that’s by far the least invasive option.

If she can’t cope with the idea even under sedation, then you’re limited to pill/patch/implant/ injection.

Also, ablation is a good option for older women, or women who have completed their families, but wouldn’t usually be considered in a young woman (who may change her mind later about wanting children, as many of us do!) unless all reversible treatment methods had been tried first.

Just wondering if there was a possible misunderstanding over the ultrasound as every ultrasound letter I get says about the two options and about not having to do the transvaginal one if you have never been sexually active.

I think you need to look into the possibility of going along as a chaperone or reading her appointment letters etc (if she is happy for you to do so) to help explain what is expected and not expected.

Maybe there is an option to visit to see what it would be like but without the actual scan happening so that she is comfortable with the situation and location one the day? Or to watch a video of what would happen.

Hope it all works out for her. I’ve had gyne surgery, anaemia, and still get flooding so can sympathise. 💐

Hormonal contraception, you change them once a week, my daughters are called Evra x

My daughters gynae said no need for any breaks x

I'm on a hysterectomy FB group, having recently had a total one.

A lot of the women who have retained their ovaries have found that they don't function well post-hysterectomy. I believe Louise Newson says there's a case for HRT in these cases.

I’m sorry I can’t remember it was good few years ago now but it showed absolutely everything (I also had cysts, fibroids, and andiomiosis whereas after the normal scan I was told it wasn’t endo and there was nothing wrong!

@runfly you asked about experiences of the mirena coil.

Well I have loved it. Reduced my pain completely, reduced my periods in length and amount. Made it easier to have a bowel movement (I was having problems having a BM during my period). Mood swings balanced out.

It's been amazing.

For a while it reduced my libido but I soon readjusted and I think (but can't be sure) that it may have contributed to some weight gain.