Stage 4 Endometriosis

I have stage 4 endometriosis and I was diagnosed when I was 17 years old. I went to get an ultrasound because I was in SO MUCH pain and the doctors found ovarian cysts. I knew this was the issue because I felt like I was carrying basketballs in my uterus everyday till oneday it was to much to take. So in 2009 I had surgery at UMASS to remove these cysts. When they started operating on me that day, they found not only 4 cysts on my ovaries, and my fallopian tubes tangled and wrapped around my uterus, but they also found stage 4 endometriosis. Since this was not an endo surgon, he did not touch anymore because it was above his level, so he suggested my Mom and I to go to Boston to see an Endomtriosis Specialist.

Now in 2010 I went to see a Specialist in Boston who did another operation that lasted a few hours. After recovering at home I had a LITTLE bit of relief but then the pain carried on weeks after that; I started bleeding again, and here we go again.... more endo, and more pain.

2011 we went back to Boston to have ANOTHER operation that lasted a good 4 hours. I don't remember much, but I do remember the specialist saying "She has a lot of endometriosis and we only got out what we could" which makes me think that's nothing at all because again, weeks later after recovery, I was in the same pain, and at square one again. After this crazy ride we then tried hormones; birth control pills, progesterone, etc. Nothing seemed to help...only the progesterone which made me feel depressed, angry, moody, having hot flashes everyday, hair loss, weight gain (I was 105 lbs and I weighed in at 130.) So we agreed after 2 years to take me off of this monster pill and I switched to Nuvaring 3 months ago. My 1st 2 months were great; no pain, but a little bit of spotting and that's it. Last months till today, I have been suffering with debilitating endo. pain; (pulling, cramping) the pain goes from my back down to my legs, in my uterus, on my ovaries, etc. Good news though is that I weight 122 now :D
This is now effecting my Relationship with my partner because sexual intercourse is extremily painful during and after, and then I suffer with more pain for weeks at a time, so I feel as I'm not doing my part in the relationship anymore which makes me sad.

My Mom and I are going crazy, especially me since I missed work for a week straight. We are agreeing to have another surgery, but we want someone who is exceptionally good at what they do because I think the endo. is now near or on my colon. I say that because it's hard for me to go to the bathroom and when I do, I have to strain every single time, and it's very VERY painful endo pain on my back and down my legs. I don't know what to do anymore but another surgery. If anyone knows the BEST endo. surgon who doesn't only scape out endo near your uterus and reproducive organs, but also near or around your colon, please let me know.
**The only BEST endo surgons I find online is in New York... 4 hours away from me, but i'm ready to do whatever it takes. This is rediculous.

Thank you to everyone, and I hope other young girls and women out there are getting some sort of relief from this horrible disease.

Chronicendo Chronicendo
26-30, F
1 Response Aug 31, 2013

I have a great endometriosis specialist surgeon in NYC that I work with, her name is Dr Jeannie Kim. She works for NY Presbyterian Hospital Columbia. Good luck!