Intersticial Cystitis

[LoriBug]

I started haveing problems with very heavy periods when I was 17, then when I was 19 I was diagnosed with Endometriosis. I have had 3 laparscopic surgeries, a D&C, birth control, Depo and Lupron shots, and nothing is helping with my pelvic pain. One of my doctors suggested Intersticial Cystitis, but they havn't ordered any further testing and I don't really know where to go from here. I am now 23 and pretty much have no answers, and chronic pain that we can't get rid of. Any suggestions?

[Lennox Hoyte, M.D.]

Get an evaluation by a qualified pelvic floor physical therapist. They are exceptionally good at locating and curing musculoskeletal pain. Make sure you find one with specific training in female pelvic floor issues.

also make sure that you have had a complete workup by your gynecologist to rule out any serious causes for your pain.

[free spirit]

Did you look into peudenal nerve issues?      It really is time for a different doc. One who will look at the whole picture.  I repeatedly saw my GP, was referred to a gyn who didn't help much, then I 'referred myself' to a vulvar clinic.  It took a while, but I'm finally on the road to recovery.  I saw 3 docs at the clinic and 2 physical therapists, one internal, one whole body external.  Be pushy and find yourself a clinic.  The NVA has a list of docs to start with. Also, the women on the happy pelvis forum might be able to recommend a doc in your area.  

Good luck.

[LoriBug]

It is just gnawing pain and it hurts when I sit still, but it is way worse walking around, and sometimes I can't even walk around at all. I have looked into the symptoms of IC and the only symptom I have is the chronic pelvic pain. I think they are trying to link me with that because a lot of people that have endometriosis do have IC. (supposedly) No one has really suggested anything else, because the diagnosis of Endometriosis has already been made. It is VERY frusterating. I have been to 5 different docs.

[free spirit]

What kind of chronic pain?  Have you looked into the symptoms for IC? What about vulvodynia?    I would find another doc.  To  have one suggest a diagnosis without looking further into it, isn't worth much.  Has anybody mentioned pelvic floor muscle dysfunction?  If you have been in a lot of pain for a prolonged period of time, it's quite possible that your whole pelvic region is tight.  This will decrease the blood flow, irritate nerves and can cause referred pain in other areas.  A really good pt who works with chronic pelvic pain could help you.

It's worth looking into.   I would also suggest joining the yahoo group  happy pelvis.  The women on that board are very friendly and helpful. They may have ideas on how to start your search for treatment.