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?

Ask GP for referral to a meeting with a gynae consultant. I was offered one in my 20s but had to demonstrate how I was 100% sure.

It really sounds miserable poor DD. Definitely meet with a gynaecologist and talk about her options

Would she consider the contraceptive injection? I begged for a hysterectomy for many years (unsuccessfully) and the only thing that gave me any relief was the injection as it ceases them entirely and only needs done every 12 weeks

A hysterectomy might not be unreasonable in her situation but it's never going to be an option unless other things have been explored.

Even if her mind is fixed on this, I think you need to encourage her to engage with other examinations and methods.

Perhaps if you present it to her as a necessary 'tick box' rather than with great expectation of a miracle solution. To remove healthy organs you need to e sure there wasn't a less drastic solution and all other avenues should be explored first. If she hasn't done this then she's effectively stuck where she is.

I had two young children was in my 30s didn’t want more children, had horrid periods but the Dr wouldn’t even discuss a hysterectomy or anything else at my age so I doubt your daughter will get very far.

Have you looked into the negative impacts of having a hysterectomy at a young age? It affects bone density among other things. I really sympathise with horrific periods but it'd just be swapping this issue for another one in the future.

@ThreeB that’s what’s helped me most, I’ve been on Sayana press for a year now, I give it to myself at home too so no need to go to the Drs every 12 weeks.

Bone health.

Due to her age if she had a hysterectomy she will need to go on HRT for her bone health. If she has endometriosis and not just adenomyosis she can't.

She needs to have investigations starting with an MRI of her abdomen not just an MRI/ultrasound of her uterus and ovaries to check what she actually has.

Poor girl.

Bear in mind it isn’t just about children, a hysterectomy can trigger early menopause which has a whole host of negative effects on the body (HRT helps but not fully). For this reason alone I would explore every other possible option.

Your DD will not get a hysterectomy on demand, she will need a diagnosis which means she is going to have to see a Gynaecologist and have some Investigations. She will then be offered treatment, she will not automatically be offered a hysterectomy, not just because of her age but because it's major surgery which may be unnecessary.

I think you need to find a way to reassure her about a Gynaecologist appointment and go with her to advocate for her.

She has my sympathy, I suffered in a similar way and if I had known at 20 than none of the treatments I tried would work for me I'd have had a hysterectomy too just to get my life back.

Would she consider an alternative LARC such as the injection or coil? They’ve both controlled my heavy and painful periods and then would still give her options. I know many people who have said they didn’t want kids in their teens/20s and changed their mind later… my mum being one of them!!

i had severe endometriosis and have also had a hysterectomy due to it. Prior to this I had scans which showed absolutely nothing but I paid for a private mri scan with a endo specialist hospital, which showed extensive damage. Is this an option for you? So she doesn’t have to go through a scan which in my opinion is useless?

I have severe endometriosis and am in my 30's. I take medication by monthly injections that completely stops my periods. It's put me into a chemical menopause basically. I take HRT alongside it which protects me from osteoporosis and stops any side effects. Like every form of treatment it comes with risks so you have to weigh up the pros and cons. But thought I should mention as it's an alternative to surgery that you might not have been aware of. It took many years before I even got a definitive diagnosis of endo, let alone had the opportunity to discuss surgery with a consultant and by that time it had spread and stuck to my bowel, which means surgery would be very risky.

A hysterectomy is not healthy at a young age. The female body needs estrogen.

You need to explore other contraceptive solutions that can end her periods.

If she does have endometriosis, it can still come back after a hysterectomy unfortunately. Plus there are other issues that can come with early menopause!

Definitely take her to the GP to discuss options, I think quite often they recommend the coil?

I feel for her, I have endo and cysts too and had awful awful periods for 20 years!

Also get her iron/ferritin/B12 checked. Low iron makes periods much worse, something about the clotting. Mine have improved since I got the iron under control.

I'm confused about these oestrogen comments; I thought total hysterectomies were only done on older women/in unavoidable cases now.

Also remember that the our body is built around the organs removed in a hysterectomy. When that's removed other organs can collapse.

I have the mirena coil. It was painful getting it inserted but it's changed my periods from being heavy for 7-10 days to a smear lasting 7-10 minutes!

I think she probably needs further investigation re pcos or endometriosis as a first port of call to find out the cause for it being so awful. (Unless you've already done this and I've misread). There's other options, I know a lot of people find the non copper coil really helpful. It took mine a long time to settle down but once it did it made a difference - I also can't take the pill or have implant etc due to side effects. So it might be worth trying. But ultimately its her choice. I think sitting down with a specialist and discussing the pros and cons in depth and fully understanding the ways her body might react to a hysterectomy would be really important so she can make a fully informed decision and then I'd support whatever decision she wants to make.

Suggest trying implant or injection that can stop periods totally

As a starting point, why not try a Mirena coil? It stops many women's periods completely.

And then, once the heavy periods (hopefully) go, it will be clearer if she has endo.

Your poor daughter. I take tranexamic acid which really cuts down on the heaviness. You only take it the days of your period. It stops the flooding very quickly each time. I don’t know if that’s the medication she’s on? The tablets are huge but dissolve easily.

Not necessarily. If they leave her ovaries they may still keep on working (although yes, in older women they can fail after a hysterectomy.)

And yes, women with endo can take some forms of HRT.

One option would be the Mirena coil but they may want to insert that under a GA as she is sexually inactive and not given birth.

It's only a total hysterectomy where the ovaries are removed. Otherwise, it's just the uterus and the ovaries can carry on working.

I think you will struggle to get anyone to do it at such a young age. Although I can totally understand why she would want it done.

I agree that making an appointment with her GP and exploring all the options first (including a Gynae referral) would be expected before jumping straight to a hysterectomy.

Just to answer some of the pp, oestrogen is very important, however the uterus can be removed and ovaries left behind- to prevent a surgical menopause in younger women (depending on the reason for surgery in the first place).