I have endometriosis. AMA

[Endo33]

Also adenomyosis.
Ask away :)

Hey what treatment have you had and how old are you?

I'm nearly 40 and unfortunately ineligible for treatment :(
We're TTC so can't take any birth control. The adenomyosis means surgery won't really help.
So I managed it as best I can by keeping energy up when I'm not on my period, eating well, lots of heat packs, and absolutely crash when on my period.

Thank you. My 22 year old dd suffers very badly to the point of wanting a hysterectomy but I think she's far too young

Honestly I've thought about it too :(
But I feel like that comes with other complications so am a little scared to mess with my body, plus want kids and now am close enough to menopause that I can see an end to this!

Do you suffer from migraines too

No

A hysterectomy would only really work for adenomyosis. Endo deposits would all have to be excised from wherever they are visible, not just laser treated. Sadly endo produces its own oestrogen and blood supply and can be found anywhere in the body.

If you or your DD want information, I know it seems crazy but Tiktok, Ditto-menstrual research, a lab on menstrual health, Dr Andrea Vidali, (a surgeon who does endo surgeries daily) are good.

@Endo33 What age were you diagnosed?

What pain relief have you found to be best for your pain? I was diagnosed at 20 after 10 years of pain. I’m 50 this year, post menopausal and still have daily pain. I suspect HRT is irritating it. After many years of a variety of drugs and using pethidine and morphine to get through my nursing degree, I’m settled on dihydrocodeine and paracetamol 4 times a day every day. Ibuprofen works well but I can’t take it due to gastric issues and asthma. I look back at my 20s and wonder how I survived. Pregnancy made it worse too to start with.

I only just got diagnosed but have had symptoms for decades

Honestly this doesn't really answer your question but sleeping a lot :(
And massage and heat.
None of the pain relief I've tried has worked

@Pinklightning there is medical evidence to support ongoing endo even after menopause. I am no expert but you might want to ask your GP to increase your progesterone or drop your oestrogen level or refer you to a specialist. If you haven't already, post on the menopause board. I destroyed my stomach with ibuprofen in my 20s, prescribed by the GP but no stomach protection alongside it.

@Endo33 sadly it does take a long time to get diagnosed but hopefully now there has been more of a spotlight on it over the last few years including the short film winning a Bafta this year it might be easier for other women.

For pain I use a plug in heat pad, lightweight and doesn't lose heat. A TENs machine and I am lucky to have access to a hot tub. I take supplements too, basically anything to help myself. The sleeping is good, you are listening to your body, it is what it needs.