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?

Those who are saying about the coil, do you have a lot of side effects?
She was very unwell on both pill types she tried which is putting her off trying the coil and implants.

Just realised that’s the link for end of life care same team though….

DD (20) had awful periods from about the age of 13: heavy bleeding, missed loads of school due to pain, nausea, vomiting etc. She tried the pill briefly but it seemed to make the nausea worse. She now has something similar to the Mirena - different brand name, I think it might be one they prescribe for younger women - and although it hasn't stopped her periods as she had hoped, it has made them a lot lighter and less painful, and she doesn't seem to have had any side effects.

But if your DD refuses an internal ultrasound, would she cope with a coil insertion? It is equally invasive and potentially more painful.

@runfly every hospital should have an LD liason/nurse so definitely ask to see them
I have the Deprovera injection, completely stopped my periods. They were horrendously heavy but once I went on that, nothing.

Hi Op., my daughter aged 21 (also autistic) had similar issues and was finally (after changing GP) diagnosed with Adenomyosis last year.

she’d been on tranexamic acid which did nothing, the mini pill affected her mood swings and really didn’t suit her and mefenamic acid had some alarming side effects.

After much discussion she had the coil fitted. It was an uncomfortable procedure but things have been so much better since. It’s topical so doesn’t have the adverse effects of the pill. She does want a hysterectomy and has been told they will consider it once she’s 30 or so.

Has anyone suggested the possibility of endometrial ablation? Not quite as extreme as hysterectomy.

No side effects with mirena for me.
But there's simply no guarantee. No one can promise your daughter she won't experience some side effects from any treatment, including hysterectomy of course. But she's suffered so much already, trying something reversible and giving it a few months seems worth it.

Such a rough situation for you both

The injection didn’t stop my periods. I bleed literally everyday for six months! I’m a heavy bleeder a bit like OP’s daughter but not as extreme.

Both mirena (coil) and nexplanon (implant) are progesterone containing, but it's much lower dose that the progesterone-only pill or the injection, so you tend not to have systemic (whole body) side effects in the same way. Both are usually very well tolerated.

The patches (trade name EVRA usually in the UK) are combined oestrogen and progesterone, like the pill that you take for 3 weeks then have a 1 week gap, except that it's a weekly patch rather than a daily pill. If you have nausea/ problems swallowing pills/ upset stomach on the pill, these can be much better. Once you're used to them, you can run up to 9 patches back-to-back, so you're only having a (lighter) bleed one week in every ten.

Your daughter's GP should have put in the referral letter that she has learning disability and autism that makes it difficult for her to cope with internal examinations. If Gynae refused a referral because she won't go straight to vaginal ultrasound, then the GP needs to write back and assert that she needs reasonable adjustment for her disability, which means a clinic appointment first and then sedation for examination, ultrasound if needed, then mirena insertion. All of this could be done in the same sedation episode. This would be heavy sedation such that she wouldn't remember anything afterwards, but would stop short of a full general anaesthetic. Agree that you going through PALS would help with this.

Unfortunately, your daughter is unable to cope with the thought of procedures being done under sedation, she is unlikely to cope with major surgery and the recovery from that. She may well find the mirena life-changing and it will preserve her fertility options.

I'm another who had years of heavy, prolonged periods, so painful I used to faint regularly, and missed a lot of school. I tried lots of different pills, had the injection for the maximum 2 years, then had my first mirena fitted in my late 20's. I've had mirenas for 18 years now, apart from when ttc/pregnant, and have no periods at all.

Your GP could prescribe the patches whilst you're waiting for Gynae.
Generally, if a woman has tried pills (combined and progesterone-only), depo-proverb (injection) and patches, then the next treatment steps via gynae (following thorough examination/ ultrasound to see what the issue is) would be mirena, then endometrial ablation, then (if really no other option) hysterectomy. Statistically, very few women need hysterectomy to manage bleeding and pain, although your family history is significant here.

I was fine on the mirena and my doctor daughter and most of her doctor flat mates have them too. Definitely worth trying.

No one has suggested endometrial ablation, I have just googled it thank you.

Mirena under sedation might have negative side effects yes, but there's a really good chance that your DD would find it a magic bullet, and the side effects would be reversible on removal. The negative side-effects of hysterectomy could be permanent.

This mean she would be infertile forever, so it's not something a dr might agree to.

Be very aware that at 20, with learning difficulties, doctors are going to be ultra cautious of anything that makes her unable to have children.

It would be very sad if in 10 years time she felt differently and options were not open to her.

Definitely try the coil. My periods were horrendous. I reluctantly tried the coil and after 6 months they have reduced to nothing. It’s lovely!! No migraines anymore either which I used to get all the time.

If she's struggling with the idea of the coil, how will she cope with a major op?

Also, despite knowing at 20 she "never wants children", I don't think the doctors will take that as gospel.

Your poor daughter, that’s a horrible situation to be in. I was diagnosed with endo at 14 (accidentally during surgery to remove a cyst) and suffered throughout my 20’s badly (better now in my 30’s after children). I would definitely suggest taking the pill back to back (to stop periods) it really helped me or gynae consultant can prescribe medication to stop periods. I would also suggest asking for help from the national endometriosis society if you haven’t already, they run support groups not just for sufferers but also their families which can be helpful to find a good local consultant (not all are great at understanding endo).

She's at higher risk of female cancers and osteoporosis if she goes through with this operation.

It's her diet and her environment she needs to review.

She doesn't need an internal ultrasound to know that she's got endo, she could still have the symptoms of endo removed by lap.

Goodness she should definitely try the Mirena coil before more radical procedures such as ablation or hysterectomy. Hysterectomy is a major surgical procedure with serious risks.

I'm a medic and most of my colleagues have a Mirena which says a lot.

Also as a teenager/young adult I never had an internal ultrasound.

i had terrible heavy periods and in my late 30s I assumed I’d get a hysterectomy. But actually the implication regarding menopause is massive. Certainly don’t want that in early 20s. I had an ablation which helped massively. But does mean you can’t have kids. A coil might be a better option

She could have the mirena inserted under general if necessary. There is no way I'd encourage either of my daughters to have a hysterectomy without trying the mirena. A hysterectomy is a big deal

I thought ovaries normally failed within five years of a hysterectomy?

As your daughter does not consent to anything vaginally, I would strongly advocate for her with this.

It can cause unnecessary trauma when she's declined but health professionals suggest and she feels pressured.

Coil, ultrasound, internal examinations etc she needs to know she can still say no and get treatment for endo.

Gut health and hormones go hand in hand. Review foods that worsen the pain and inflammation (starchy foods often) and increase foods that help heal the gut.

Medications she may like to consider discussing with GP could be the pill, the tranexamic acid.

Tracking her temperature after breakfast can also help assist with finding what works for her.

Consider fluoride too.

Nothing to add but I do hope they can sort your DD out.