Endometriosis - Please help!

[freespirit78]

I was diagnosed with severe Endo in 2009 and have since had 2 operations, one laporoscopy and a laparotomy last feb of last year, after both ops I was put on decepeptyl injections for 6 months each time. I was almost pain free for this time. When I finished my Injections last october I started on back to back pill and have been on it since. I have severe pain since stopping the injections and it continutes to get worse. I was in A&E  last week and they kept me in for 3 days, they did an ultrasound in which they could not see my left ovary. since then I have been back to see my gyne and he said everything looks fine from the ultrasound. I am far from ok, I am in constant pain and have had dark brown discharge for the past 40 days and no sign of it stopping. I am in pain when I need to pass urine and also bowel movements, my gyne said this is all just part of endo and gave me strong pain killers. He dismissed my gps request for a full hysterectomy saying  I was too young, but despite my age I have no quality of life!  now my gp is sending me for a second opinion.  I am so fed up with all this pain and no relief. I can not go on like this but I am also worried about having a full hysterectomy. I am 33 and have no children althought I do not want any. Any advice please.

[am511]

def get a second opinion. I had a lap for endo done in nov of last year and they found small amount of endo and lasered it off. about 3 weeks following the procedure i bleed like you speak of the brown nasty stuff for about 27 days. I was also in constant pain and had to pee ALL the time. my gyn was not interested in doing anything and brushed me off. So i got a second opinion and that has made a world of difference. It turns out that I also have interstitial cystitis which was causing a LOT of my pain. Since the new dr change my BC and started me on treatment for the IC my pain is essentially gone. Before this I was in pain almost 3 weeks of the month. So I say look for someone who specializes in endo and see them before you make any big decisions.

[freespirit78]

Thank you for your reply. I certainly feel my gyne has no idea. I was in so much pain during the night I thought I was dying. How he can say that its all just part of the endo is beyond me. I know there is something not right. I hope I get better treatment from my second opinion.. I will keep you posted.

Good luck with your surgery and you keep us posted too on how it goes.

[Nina0108]

What kind of dr. has been treating your endo?

Im 28, married, 3 kids, endo confirmed via laparoscopy in 11/11, none removed because of the location and my gyn who performed the surgery was not equipped to remove it. The lap also confirmed ?fibroids. Saw an endo specialist a few days ago along with a pelvic u/s which confirmed either fibroids/adeno. I decided to have the endo excised and a hysterectomy (removing the uterus and cervix). My dr. was also hesitant to recommend hyst secondary to my age, but I confirmed my absolute desire for NO MORE KIDS! Lol! So that's my plan...

I think your second opinion is a good idea but im hoping its with a specialist...

During my surgerh I will also get a cystoscopy to rule out interstitial cystitis...

Good luck, keep us posted...