anyone know a good doctor for pelvic adhesive disease?

[Erin0313]

  Hi again - hope everyone is well :)

  I went to the gyn today to discuss exploratory surgery for my pelvic pain and bowel issues. I had a complete hysterectomy in 2001 for endo and the docs PA said she recommended the exploratory and set up this appt.

The doctor didn't even examine me just sat down and said that I have had too many laparoscopy procedures and even if the endo has returned it will be surrounded by adhesions behind the pelvic wall. He won't touch me unless it becomes emergent. Live with the return of the pain or find someone (a surgeon) who specializes in this.

Oh and by the way, when you feel that ripping pain it is your bowel working and pulling the adhesions that it is connected to. That might become a real issue in the future!

Thanks so much doc

Anyone have advice?

Thanks,
Erin :)

[ticked]

Sounds like my surgeon. I had stage IV endo and I also had a rectovaginal nodule with adhesions all over my bowels and bladder.  He removed them all and I do feel like they have come back after 3 yrs yet he wont operate unless I am ttc.. Argh.. its very frustrating.

What city do you live in?

[Erin0313]

Clymer New York , western part of the state in the sticks. 1 hour from Erie PA and about 2 hours from Buffalo NY.

I think it's crap that I can't find some surgeon that can take this stuff out and give me time without all this pain and bowel problems. I am not ready to give up so I am still looking for specialists when I have time and energy (not often sadly)

I will let you know if I am lucky enough to find a winner

Hugs,
Erin :)

[ticked]

That *****.  I would recommend you to the one in Toronto but he probably wouldnt operate because of your prior surgeries.  This disease ***** lol

[lisa6538]

I've had the same problems and have seen 3 doctors and no one wants to do surgery because they are afraid that it will not help me and there are too many risks due to the adhesions.  My last doctor that did surgery and removed my right ovary provided me with pictures and I've taken them to two other doctors and they don't want to touch me either.  I guess I'm thankful that everyone has the same opinion but frusterated that there's nothing that can be done.  I have cyst on my left ovary that is causing me pain and they are just watching it right now.  

[Erin0313]

  It is very frustrating. I have had all of my female parts removed so I thought that this was over for me - ha! It's worse I guess because my adhesions have attatched to my bowel, bladder and virtually every other organ in there instead. Lovely, huh?

  If I wasn't having symptoms I would try to pretend that all was well in there but I can feel it ripping and when I told the gyn that he said that is exactly what is happening. When your bowel tries to work the adhesions that are stuck to it pull on it and sometimes tear. OMG I don't even want to think about this stuff ripping organs!

I can't wait to hear what the surgeon says in 2 weeks. If he is a keeper I will let everyone know otherwise I will throw him back, lol.

Hugs,
Erin :)

[elyse83]

Dr. Andrew Cook in Los Gatos, CA specializes in this type of surgery, no matter how many surgeries you have already had. He has a pelvic pain center, Vital Health Institute, with the kindest staff you'll every meet and he knows everything about endo and adhesions. He's one of the top endo surgeons in the country.
http://www.vitalhealth.com
I'm in my 3rd week of recovery from surgery by him to remove adhesions and endo. I feel very confident all is out and won't come back again. He even gave me the DVD of the entire operation. Feel free to contact me if you have any questions.