It's me again, does anyone on here have endometriosis who I can talk to please??

[singyswife]

I suspect I have endometriosis and need to speak with someone who has it can anyone help?? Thanks

I think I was able to lose weight after I had the mirena put in because it made the endo stop - that hjad stopped me lose weight.
Yhe mirena is very different to the old coils.
I'm sorry you're having such an awful time - isn't the mirena worth a rtry?

Hi singyswife

I am another one here with endometriosis; I;ve had this since I was 14 (was 31 when I was diagnosed).

The ONLY thing that will detect endometriosis if if is there is a laparoscopy op; NO ultrasound scan or blood test will detect it. I had these during the course of my fertility treatment: it was only when I had laparascopic surgery that endometriosis was discovered. Fortunately the gynae who diagnosed me had lots of up to date knowledge (very important). It was all over my uterus, small wonder therefore I had been in pain all these years.

Actually as well a hyst may not be the answer to your problems - endometriosis can recur post hysterectomy particularly if the deposits are also sited in the intestines. Your ovaries will have to be removed if you have the hyst thus sending you into surgical menopause.

I would return to the GP and ask to be referred to a consultant gynae at a major NHS centre in the nearest city to you (not the local hospital). The two gynaes you have seen to date have been hopeless. Your other alternative is to go private.

You will need to be persistant in order to get answers or you'll keep being fobbed off.

www.endo.org.uk is a great website for all endometriosis sufferers and they also have a telephone helpline number as well as a useful message board. Take a look, use their services.

Mirena will dampen it all down but it won't address any long term problems.

What treatment do you all have then????. How do I shout about a laparoscopy????

Hi okay I have totally missed out my gp and have contacted my local well women clinic who said I was to go in and tell them my problem and they would see if I needed specialist help, if I did then they would refer me internally to one of their clinics. Lets hope they help me more than my gp and local gynies have. Thank you all for helping me.

Just found this thread. I have endo - terribly painful periods from age 14 but had to wait until I was 29 for a diagnostic laparoscopy (GPs think 'Oh, PMT, stop whingeing' if you present with period pain). I used to pass out with it, every month, and almost od on painkillers. But like shelleylou I had Zoladex injections which worked wonders and 2 yrs afterwards I conceived my first dc immediately (endo can cause fertility problems). Easily conceived again, had mc, then had DS. Pregs and breastfeeding kept the endo at bay. But when we started ttc again 2 yrs ago when I was 39, the endo had crept back - over a year of ttc and nothing doing. So I had some Decapeptyl injections (a similar drug to Zoladex, that gives you a fake menopause and allows the endo to atrophy) and 5 months after stopping am pregnant again. Worth looking at www.endo.org.uk message boards to find someone with similar problems to you. Good luck - you can usually do something to improve your symptoms if you can get doctors to start listening!

PCOS can be confirmed by a pelvic scan, your GP can request this. It's very simple and easy will at least confirm PCOs or not?