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?

https://www.nhs.uk/conditions/hysterectomy/risks/

"Ovary failure

Even if 1 or both of your ovaries are left intact, you may still have symptoms of the menopause earlier than expected."

There are many procedures now that can ease her periods without needing to have a full hysterectomy and all the complications that arise from one. Most will make her infertile (but so will a hysterectomy) but won't require extensive recovery in the same way.

Definitely speak to a gynae.

Thank you everyone!
Can someone tell me what the injection is please? Does it have a lot of side effects?
The GP has discussed the coil and she will not have it done.

Jakc can you give me an idea of the cost of the MRI please?

yes - she could end up with a vaginal prolapse as there will be nothing there holding the vagina up, so to speak.

The hysterectmoy itself won't affect bone health etc - it is the ovaries, which are attached to the womb, which provide oestrogen. So if the ovares are not removed (and they don't need to be unless its for cancer/to reduce cancer risk), she shouldn't have too many issues.

People can get hysterectomies for heavy bleeding but as she is only 20, it is unlikely that this would be done unless all other options had been thoroughly tried and she was suicidal because of it. Have you looked into edometrial ablation? It has a high success rate and is much more likely to be offered.

It sounds horrendous. For decades I had 23 day cycle with heavy bleeding, clotting, pain often showing through clothes and destroying mattresses/bedding in my wake. I have every sympathy. Having kids made them lighter (not recommending this at her stage btw) and then having a Mirena stopped them altogether.

Hysterectomy should be the last option, not the first. She may want kids down the line. I hope you find a sympathetic and knowledgeable gynae.

Poor kid! If it helps, my DD has had nightmare periods too. (She has other compounding medical problems that make them even more painful) She can’t take the pill as they caused horrible migraines, and increases her stroke risk. When she was 14, I requested an urgent referral to a gynaecologist who was SOOOO lovely. She really listened to DD and suggested the Mirena. She had twilight sedation for the insertion and doesn’t remember any of it. As explained by the gynecologist, she was crampy and irregular for a couple of months while it “settled in”. (There were times when we questioned our choice.) After a while it all stopped. She has no more cramps, barely bleeds (and of course if she does, it’s not regular.) She said she gets some light pink spotting occasionally, and it’s been absolutely life-changing for her in a really good way.

Would she consider seeing an alternative practitioner? You can PM me if you like.. I am not in the UK so couldn't help and am not touting for business but equally don't want to derail your thread if it's not an option for you / her.

The GP has discussed the coil and she will not have it done.

Has she been on the mini pill where it's failed to help her?

I think she'd have to explore other options first. I had awful periods, the injection helped a lot when I was younger. After having DC, my periods really were horrific. So heavy, I coukdnt leave the house,and went on for weeks.

Tranexsmic acid helped a lot - yes, theyretablets and I had to take 8 a day to start with. One thing though, it lessened the flow a lot but the pain increased. Ultimately, I had an endometrial ablation. Not as drastic as a hysterectomy, but it would prevent her from being able to carry a baby.

What's concerning me is she's turning down very minor procedures and medications. Does she fully understand what a hysterectomy is, the recovery process and long term effects?

Does she just want something to stop her periods? In which case contraception will do that or if she wants something more long term an ablation or embolization may be the way forwards. She really needs to comply with medical treatment to show she can cope with the surgery both short term and long term.

HRT is a long term commitment.

The depo injection is long-lasting progesterone as contraception. If she refuses the implant, it's the same as that but can't be removed from your body if she doesn't like the side effects.

You don't need to be sexualy active or have given birth to have a coil fitted in clinc. I was told this by a GP once and had to go on the mini pill which didn't help. Luckily another GP pointed me to the sexual health clinic to have one fitted and they said they insert them on young women all the time. Yes it can be more uncomfortable, but you don't need the risk of a GA to have one fitted.

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

Has she tried progesterone-only pills, the mini pill? In young people they can take an off licence double dose of Desogesterol to cease cycles

I've struggled for year and I'm now finally on waiting list for hysterectomy. I refused coil as none of the hormonal treatments ever worked- in fact I was bleeding more.

She absolutely has to see a gyne to get the hysterectomy done anyway. Plus she will need to have an ultrasound to take a look. There's no way around it, she'll need to make a case and part of that is going to scans etc.

On paper yes, a hysterectomy sounds an idea solution however you've said that one of the reasons your daughter has given for not wanting children is that social service would probably take them away because she can't cope. I think that almost implies that if she thought she could cope (with support) she wouldn't rule it out. I think any doctor would rule out sterilisation for this reason alone.
In your daughter's case I'd be looking at two separate issues. The first is an unwanted pregnancy. If your daughter is not sexually active and unlikely to be she's not going to fall pregnant. Do you see this changing considering she refused the ultrasound?
The second is quality of life. She's been offered treatments (hormonal meds) which she's declined without trying. Surgery is generally a last option. A hysterectomy doesn't necessarily cure things as the condition may return elsewhere. Sometimes a salpingo/oophorectomy (tubes and ovaries) can be removed taking away the hormonal trigger.
Whilst I understand your concern, the NHS has a limited budget and its not always possible to 'choose' your treatment. My biggest concern would be that your daughter might imply she would consider pregnancy under different circumstances. If that's the case, any treatment affecting fertility will be ruled out. I'm unsure how successful 'zapping'the lining will be but without a diagnostic ultrasound that's not going to happen. Clinicians need to be sure exactly where the problem is before they can consider treatments. If the issue was lack of explanation/prep then watch a few videos of the procedure (there are animated and real ones) so she's prepped.
Good luck

Can only really be on it 2y is the prob due to Osteoporosis risk

Ask for a gyna referral something like a mirena maybe worth a go as most people cease having periods with it. Can be put in under GA (combined with smear test) for those with LD but will prob be quite a wait unfortunately

I had similarly awful periods from being young and was refused even a referral for hysterectomy until I'd tried every other option due to my age and lack of children.
My gynae consultant got me to try a mirena iud which worked brilliantly. Would that be something your daughter might be willing to look into?

My friend had a hysterectomy at 25 for endometriosis , she could not cope with that level of pain any more. So I know how bad it can get, and I don’t think it is unreasonable to want to resolve it.

Poor love. It's essential to thoroughly research the long term impact of having a healthy set of organs removed, and the instant menopause kicking in if ovaries go too.

As a short term solution Accupucture has been a complete game changer for me with my cycles - reduced blood flow, days I bleed and pain enormously

I feel for your DD op, but hysterectomy is the last option that will be offered after others have been tried as it is major surgery with significant risks... and if she struggles with the idea of coil/investigations and is neurodivergent... recovering from a hysterectomy will be pretty traumatic. I think as multiple pps have said... have to fully establish a diagnosis first.

other options include hormones delivered in various forms, endometrial ablation, myomectomy etc. etc.

I had an endometrial ablation in my 30s due to excessive bleeding after trying hormones and it really helped. but it doesn't work for everyone and it does mean I am unable to have children...

How horrible for your dd and i can completely sympathise. I’ve been going through the same for years and would often pass out from the pain when I was younger. Until I had my child via ivf I didn’t realise that the pain I had was just like labour pains. The one thing that worked the best for me though only for a year or so as I took it out to ttc was having the Mirena Coil inserted. I had no periods with this and no pain after the first month. It was life changing.
From my late teens I wanted a hysterectomy though I also knew I wanted children. I’ve gave myself till I’m 40 and then i will be pushing for it. Only the other week I was trying not to scream in pain because I didn’t want to scare my child.

I have endometriosis, I was told that a hysterectomy is not always cure so its no longer offered as a treatment option. The 3 things that may help and would be worth a shot if she isn’t keen on an implant or coil are:

The depo injection - this completely stops periods, is only needed every 12 weeks, side effects can include weight gain.

The mini-pill - this is taken 7 days a week so also tends to stop periods, I’ve found this to be a real game changer.

There are also other drugs (not sure what they are) that can be used to induce menopause but need to be taken with HRT.

I think a hysterectomy would be a mistake because you have no idea how she might feel about having kids in ten years. The contraceptive implant could be a good idea. I had one and didn't have a period for a couple of years. I had adenomyosis and a few other issues with periods but I'm very glad I stayed fertile, otherwise I wouldn't have my two children.

I don't know if this is 'allowed' but I have been on norethisterone for ten years plus due to being unable to have an ablation/ surgery for super heavy periods.
Would something like that help?
I do take supplements as well.