Does it ever get any easier.

[Rosesimba]

I'm 21 and have been told that if the last chemcial fix doesn't work (60% chance of failing) doesn't work i will need a hysterectomy. Does the condition ever get any easier as I has a cyst removed last year that was a fair size and has left my with pelvic abrasions.

[Christin_a]

Hello

Do you know why they are saying for you to get a hysterectomy. As a hysterectomy isn't a cure for endometriosis as by definition endometriosis are cells outside of the uterus.

Have you had excision surgery?

Everyone with the condition is different so yes so people get relief from just hormonal birth l control, others it's only after surgery to remove the endo, some don't get relief from either of these and require help from pain specialist in ways to manage the pain aspect of endometriosis.

[Rosesimba in reply to Christin_a]

Hi yeh I've had some of the endo tissue removed but what they took out has come back really fast and ive already had one large cyst on my Overy removed as well. They are saying a hysterectomy as a last plan because the endo has started to go into the walls of my womb i cant remember the full name for it. But its blocking tubes ext and where its started to grown in the wall lining its causing so much irritation. They want to remove everything and see to think that will help as after the first operation I have a fair bit if scar tissue and pelvic abrasions and the cyst was a fair size so caused organ displacement.

[Christin_a in reply to Rosesimba]

Are you based in the UK? And if so are you being seen by a BSGE gynaecologist? They are specialist centres for the treatment of severe endometriosis, as it sounds like you should been seen by these specialists centres not a general gynaecologist.

You said you had some of it removed do you know if they used ablation or excision to remove it, and if they removed everything that was found during the surgery or only bits of it?

Adenomyosis? Could that be what they said you might also have? If so a hysterectomy can cure that, but won't do anything about the endo, as they are separate issues.

Due to our ovaries doing so much more than just gynae things, make sure you're aware of all the possible side effects of both any medication they are suggesting (I'm guessing they've said one that will put you into a medical menopausal state?). As it can cause issues like brittle bones (amongst others things) especially in someone of your age where your bones are still gaining the density.

[GrittyReads]

Have they tried you with a mirena coil? That worked for me after years of pain! Also, the only op. I had - where endo tissue was removed - resulted in even worse agonising pain within about 6 months of having the removal. It was then that I saw someone private and he suggested trying the Mirena … and it worked.

I was much older than you, and through most of my adult life the endo had been - just about - controlled by the pill. But when I was told to stop that, the pain became unbearable - hence the first and only excision, followed by the mirena: the only things that ever worked for me.

Hope this helps,

Gritty

[Rosesimba in reply to GrittyReads]

Yeh ive looked at the coil and it doesn't suit me apparently. Just wishing there was a fix so I could still have kids 😔