Help! Is this really IC--8 month flare!

[SemperFiBabe]

I have posted on this website before, but I never really explained my situation.

When I was 13, I was diagnosed with endometriosis. And then, before I joined the military, I was diagnosed with IC from a cystoscopy at the age of 24.

For the past 8 months, I have been having a major flare. It has been consistent, with the exception of one month where I felt relief. I am on the usual meds, and DMSO, TENS therapy, etc. Nothing was helping.

My doctors recently did a laparoscopy and cystoscopy. THere was a minimal (microscopic) level of endo on the outside of my bladder, but it was level 0-1 and my doc did not think it was enough to cause the intense pain I have been having. My bladder looked great apparently--no sign of IC, looked like a healthy bladder.

My doctors prescribed me some medicines that treat fibromyalgia. I am still waiting for them to get approved from the pharmacy. Do you guys think it sounds like I have fibromyalgia?

I have all the normal IC symptoms--pain in the bladder and urethra, frequency, nocturnia, burning sensation, etc. I am the worst my Uro-Ob/GYN has ever seen.

I also have vulvodynmia, which includes pain upon deep thrusting, and vulvar pain.

I don't really have pain on my limbs, but I do have an extremely stiff neck and traps. I get massages regularly, and the masseuses say I am the tensest patient they have seen. And they can never remove the "lactic acid bubbles" that they find.

I also have the symptoms of being very sensitive to cold/heat and being exhausted all the time--my muscles feel literally like I was working out when I wake up.

I am asking you guys because this website has provided me with so much help in the past. Does it sound like I have fibro? Even though I don't have this limb pain? What else could be causing severe bladder pain if NOTHING is there?

[lissad]

sounds like me . A good looking bladder yet constant pain . My only relief is the day I get my period . I have been sick for16 yrs and no fibro . Sorry you are in pain . Hang in there

[ginaaa22]

My dr told me that people with endo can have no sign of endo or minimal signs yet have horrible pain and people who have endo all over have little pain. There is no correlation between the two. Most of the fibro trigger points arent on your limbs. You do need to see a rhematologist to be properly evaluated to make sure you dont have RA, or an autoimmune disease.

You sound similar to me. I dont have any evidence of endo, but have severe IC pain. It gets horrible when I'm on my period. I also have vulvodynia and fibro. I also always have lactic acid buildup in my shoulders and neck which i believe is contributing to my migraines. I have seen other people on here say that lyrica really helps with all 3- IC, fibro and vulvodynia. Not sure if I'm ready to take that leap yet. When I was first diagnosed with fibro I was given cymbalta and flexeril. Cymbalta didnt really help and flexeril made me feel like I was crawling in my skin and I could not sleep. It normally has the opposite effect on others- very drowsy and relaxing.

[ginaaa22]

Even if there is nothing around your bladder- like in my case the nerves could be causing a problem. I believe for me personally from all the signals being sent to the brain for so long now that the signals arent being sent anymore the nerves are still hypersensitive. My gyn told me because Ive had many yeast infections that even tho the yeast isnt there the nerves down there are hypersensitive and send signals to the brain of pain and itching. Also it lowers your threshold of having symptoms. I can have just a slight yeast infection that barely shows up on a test and have horrible itching and pain. Even if I was to have my whole reproductive system removed and my bladder I'm almost positive I would still have pain. That is why some say that drugs like neurotin and lyrica can help calm this nerve pain. Maybe someone else will chime in...

[babygirl1071]

I understand how you feel. I have all the symptoms and a normal bladder too. I always feel tired, have the burning, etc. I had a cysto/hydro back in April and that brought me relief for about a month. Now I am back to flaring and have been for about a month. I have been popping tums and baking soda to try to keep it under control. I don't have time to feel crappy from DMSO, but feel that I will probably have to get them this fall when I do have time. I try to stay positive, but it's hard. That's why I'm glad I can come here and let it all out.