PMDD/Surgical menopause help please

[rae1234]

Hi,

Just wondering if anyone can help/advise for what to do next..I’m at my whits end with gynaecological/PMDD/Adhd problems.
Im in the UK, no kids and I’m 30 (although feel 100)

So I’ve got endometriosis, Ive had heavy periods and bleeding since the age of 12 (I’m based in the UK so back and forth to the NHS) until finally urging gynae for a refferal for a laproscopy. I was diagnosed with Deep infiltrating Endo at 21.
Since then I’ve had 4 surgeries with a diagnosis of adenomyosis, which came last year
.
I had spinal surgery for L5S1 slipped disc back in 2025 and I’m convinced it was to do with the endo..in my uterosacral ligaments

Because of the endometriosis and heavy bleeding I’ve got low ferretin (level of 2) and had infusions for this before, it always drops back and my iron stores are so low. Going to get 1000mg next week privately because sick of waiting for a hospital refferal on the NHS
Ive then been diagnosed with ADHD at 29 for which I’m prescribed Elvanse..not great for me as i struggle to take it and don’t get this magical calm that everyone else gets? I’ve no trouble with exec disfunction but I really struggle with emotional regulation and irritability.

For the past few years I’ve REALLY struggled with my luteal phase, I have a 25 day cycle and due to a 10 day bleed (I have the copper coil) I feel like I have 2-3 days in follicular then straight back to a very long luteal phase ..it’s slowly killing my soul.

As soon as I’ve ovulated I feel and look like a complete different person. I’m so agitated, overstimulated and off snap with everyone around me, any minor inconvenience can tip me over the edge..my partner knows as soon as its luteal time. Im NOT wanting to end it all (you know what I mean) but I genuienely feel like what is the point in life, sick of my life etc etc. I bloat and I’m oily, my face looks like a moon. My body aches and is stiff..I’m absoslutely exhausted. it’s getting me so down at the moment that I go to bed everyday after work so I can just sleep and not think.

Ive been prescribed citalopram and fluxotine for this which doesnt help, makes me numb and put 2-3 stone on each time I take it so ive taken myself off now.

In terms of contraception:
-cant have the combined pill due to migraines
-had the implant and bled the entire time.
-tried to get the mirena coil a few years ago and had to undergo surgery to put this in, was woken up without a coil and was told my copper coil has made a false passage so they couldn’t fit it.
-was then told to try desogestrel and was that anxious and tearful that I was off work for 6 weeks. bled the entire time also.
-tried cerazette and was moody/bled the entire time.
-I’ve had 3 copper coils (I’m CONVINCED they although say are non hormonal - do something to the hormones in my brain).

• currently on cooper coil because I don’t want a bebe but of the long periods/iron so I’ll be having it out next week..roll on celibacy!

I was offered Zoladex years ago but wasn’t sure due to the hormones etc..I’m considering this again but I’ll have to wait for a gynae appointment. At this point i JUST want to live a calm, normal and happy life - I literally feel like BEGGING for a hysterectomy with ovary removal but I do feel like I’ll want at least one baby in the future..also lowkey scared to death of having to mess around with HRT for any of the above two options..

OH and to top it all off I have Hashimoto’s disease which leads on to my underactive thyroid!

Sorry for the rant, I know I’ve got a complicated medical history..I’m just so done with it all and looking for a relief?!

If anyone has any similar stories or any resolutions I’ll be truly grateful to hear please x x

bump

I'm really sorry to hear of this.

How many gynaecologists have you seen and are they experts in your condition? You may even have to travel outside of your own area to find consultants who are experienced (if necessary.)

Surgical menopause is the last 'resort' for this if hormone treatments haven't worked.

If you do have a surgical menopause you will have to take HRT in the form of estrogen (and perhaps progesterone if you stil have some endo) for at least 20 years because you'd be in the same position as women with POI- premature ovarian insufficiency (premature menopause) which means you are at a very high risk of osteoporosis, heart disease and dementia.

It's a huge step as you say and if you want children it's probably better to try other treatments as far as possible if there are any options left. Or there is maybe the option of egg freezing for the future.

@JinglingSpringbells thank you so much for your response, I’ve seen about 4-5 at my local hospital via the NHS which is a BGSE specialist centre…thank you again.
i was going to ask for Zoladex but just worried about side effects..xx

If you've had expert advice it's hard to know what else to say.

However, is it a complete no-no not to use the combined pill? If you don't have migraine with aura, you can take the Pill.

There are some newer versions which have a more natural estrogen in them. One is Zoely and the other is Qlaira.( I think they are less likely to cause blood clots if that is the concern with migraine)

Also, I don't understand why they can't insert a Mirena. The copper coil has always been known to give heavier periods so it seems weird you've got one, with endo and adeno.

Have you contacted the charity for women with endo?https://www.endometriosis-uk.org/

Zoladex won't be a long term answer, surely, as it puts you into chemical menopause. You can't be without estrogen for 20 years as it will cause other serious issues.

The other question is if the gynaecologists you're seeing are experts in endo or if they are 'just' gynaecologists working some of the time in the centre you go to.

There's often a huge difference in expertise and they should be specialists in endo and hopefully they are.