New member needs help an info

[doonadoone]

Hello.. I have many questions as other newbies do and I just don't know where to start. I have had problems, severe pain in (lower back,sharp shooting pain into rectum, vagina, clitoris, hips, groin n down inside thigh) since a surgery four years ago and as time goes on its getting unbearable. I've been thru a few test, ARM, Cystoscope, UDS, removal of a sling ( Cat Scan was neg for tumors or abnormalities.. ( going for a colonoscopy in a few weeks) exams too numerous n painful and injections of steroids in vaginal wall( holy ouch i.e.!) I saw a pain dr and w/o an exam he said it sounds like PN damage but would not treat me because he doesn't "deal with this situation" seeing Uro-Gyno at Duke who removed sling and is only treating me w muscle relaxers. They help spasms but not sever pain. I feel like I have a weird disease that no ones heard of and I'm getting depressed because I don't seem to be moving toward w a diagnosis and treatment options. Where do I go from here? I researched the data base n there r no spec in my area so what do I do? I feel so helpless to myself. I'm not into pity parties, life is too short, but I hate the idea of this "rotating door syndrome" I call it looking for a dr that can help me. Any suggestion would be ever so gratefully appreciated, also my symptoms have worsened each time I've been catherized. It never hurt before surgery now when it's done it burns and causes such severe pain I want to die.

[Patty]

What kind of surgery did you have? You need to see a pelvic floor PT ASAP. You need to find a gyn that specializes in vulvodynia. I know this is not want you have but for me they were the only group that understood how incredibly painful this condition is. They can prescribe medications by mouth and hopefully some vaginal suppositories. Believe me I know where your at. It sucks.

[doonadoone]

Thanks Patty for the reply! I had bladder prolapse surgery n rectocele(sp) four yrs ago....Had sling removed 6 months ago and some symptoms are better but others worsened terribly and I've just progress to deeper pain after all test that required catherization....did PT didn't help... Made worse...I'm seeing Uro/Gyno one of the best in my area. She doesn't like to prescribe pain meds because of my severe constipation. It's like I'm banging my head against a wall! I had Valium suppositories and they caused sever pain too..tried them for 5 days and was ready to go to ER pain was so bad...

[stephanies]

What kind of work did your PT do? External work/ internal work?

Stephanies

[Violet M]

Doona, I have not had good luck with gyn's prescribing pain meds. If you can find a local pain management doc who will manage your oral meds that might be helpful. Sounds like your pain is way out of control. There are many options for managing constipation. There are some ideas at this link: http://www.pudendalhope.info/node/32

You can check out the left hand menu on the home page at pudendalhope.org for the physician and physical therapists nearest to you. For a proper diagnosis you could try Dr. Michael Redmond (on the east coast) who has an excellent reputation -- at least from everything I have ever heard about him.

Is the purpose of the colonoscopy to check for possible polyps or cancer or is it to diagnose the pain? Just wondering because colonoscopies exacerbate the pain of pudendal neuralgia for some people and I think it's only fair that you be aware of this risk. If you have a family history of colon cancer and you are at the age where you should have a colonoscopy anyway then I can see the benefit. Otherwise, you might want to think twice about it and discuss with your physician whether it's really necessary.

Have you tried gel ice packs for pain relief yet?

Violet

[Patty]

Agree with Violet 1000% about colonoscopy and PN. It happened to me.