Endometriosis

Is there a forum on endometriosis? My 18 year old daughter began having pelvic pain last year. We have been to every ER in the city primary care dr etc and finally in August the gyn scoped her and found the endo and several ovarian cysts that were all removed . We are two months out and she is having the same stabbing pain and the dr is saying no way can it be the endo already. They Are writing it off and it's wrong. Being 18 and in chronic pain she is struggling horribly and I don't know what actions to take for her. Any ideas ?

Thank you
Cheri

Hi Cheri,

Sorry to hear about your struggle as well as your daughters. Pain is a tough thing to deal with, especially when there's no end in sight. I'm sure you will connect with lots of wonderful people here with lots of great advice and support to offer.

I agree with backtolife that if at all possible, I'd look for a new doctor. They have already dx her with endo and the ovarian cysts, so obviously there's something going on there, and she needs a doc who will listen and do something about her pain. The idea of a women's center is great.

However, I really don't think that a urologist would be the right kind of doc to help her with this problem. They treat urinary issues in women, not problems with the reproductive system. There are specialists called urogynecologists, but I don't think they would be of any use to your daughter either. They treat women with incontinence or pelvic floor disorders. Sounds like she needs a gynecologist (a doc that specializes in diagnosing and treating problems of the reproductive organs) who specializes in endo and/or treating young women with pelvic pain.

Sorry for defining the different specialists if you already knew all that, it's just that sometimes it gets confusing remembering what specialist does what. A gynecologist is definitely the route you want to go. The trick is to find one that knows a lot about endo and other pain conditions. Often, as I'm sure you know, you can look up docs online and get some info about things like what types of patients they typically see or problems they specialize in.

As mentioned, Dixie will certainly be able to offer some good advice and insight, and I'm sure lots of others will too.

Know that you and your daughter are not fighting this alone! And please let your daughter know it will get better. Same goes for you!

If I were you, since she is 18 she will have to be the one to do, but she needs to get a copy of all her medical records including the surgery records. You mentioned being a patient at the university why not take your daughter there. I would be willing to bet they have drs there that are specializing in endo & that may be where to start.

The problem you are running into over her pain not being treated is typical of what all of the young people are being told regardless of their medical condition. Drs just turn their head & keep walking out the door.

To answer your question concerning an endo forum at Healing Well, no there is not one. I hope you can get some help for her.