Unsure what I really have???

[schnauzer]

My story starts with a UTI treated with antibiotics and the symptoms never went away. I tried all the OAB drugs, Elavil, Elmiron, Had Cysto/Hydro (showed nothing) saw several doctors and nothing has changed. I dont have frequency, food issues or any other health problems except uterine fibroids. I went to see the best IC Dr in SE Michigan and he think that I have PFD and Physical Therapy would help me. He gave me valium that helps a lot. The weird thing is that the Dr who performed the Cysto Hydro diagnosed me with IC probably because he couldnt figure anything else out. He never did a pelvic exam to check for muscle tenseness like the new Dr did and I have been suffering for about 5 years. I went to a few sessions of PT and was so miserable after I had to take vicodin and stay in bed for about two weeks. I think it is from the Kegals. They made me retain urine and caused so much pain. I also have fibroids in the uterus that I am getting rechecked tomorrow via ultrasound. I just wanted to get other peoples feedback on PT and is it even possible to have PFD without IC? I am a little confused.

[GriffsMommy]

From what I've read it is possible to have PFD and not have IC. I read an article somewhere by a IC specialist who said that usually if it's only PFD with no IC then the patient does not get up at night to go to the bathroom like IC patients do. I have PFD, IC, and endo and my PT told me that pretty much everybody has some level of PFD just some more severe than others. For instance I wasn't having bladder problems when I was pregnant other than the normal pregnant peeing but my PT said carrying an almost 10 lb baby def would have contributed to my pelvic muscles being messed up. From what I understand you can have PFD and not have IC but about 70% of IC patients also have IC. As for not being checked for PFD before, I saw a so called IC specialist who checked for PFD and said I didn't have it but when I saw my new dr after that he said that I most certainly had PFD and it was on the severe side. Go figure. I hope you start to feel better soon.

[Annie2]

I certainly am not qualified to diagnose IC, PFD or anything else, for that matter. There is no one test that is extremely accurate for IC. Your situation certainly exemplifies the tremendous need for such a test and researchers are working very hard to develop it. Until we have that diagnostic tool, I would think there will always be room for disagreement and confusion. It's so very frustrating, as you well know! IC and PFD can occur by themselves or together. The only thing I can suggest for IC is to seek the opinion of yet another doctor experienced in diagnosing IC.

Whether or not you have IC, since valium helped you and you are experiencing muscle spasms and other symptoms, it sounds to me like you MIGHT have PFD (only a qualified medical professional can determine that---another reason you might want to seek another opinion).

I developed severe PFD and am one who has had tremendous success with PT. The key to successful physical therapy is finding a therapist who is knowedgeable about IC, PFD and has a great deal of experience treating patients with these disorders. It is my understanding that for most patients with PFD, starting therapy with Kegels is counter productive and can result in increased pain as you experienced. Often PTs with no experience or specific knowledge of and training in treating PFD will treat PFD patients as they would someone with incontinence and that usually means Kegels.....ouch!

With PFD, the muscles are tight and spasming. The last thing you need to begin with is an exercise designed to further strengthen those tight pelvic floor muscles. That will only serve to strengthen the spasms and increase pain. Many believe PT for PFD should begin with exercises and procedures to stretch and relax the pelvic floor muscles. In time, once these muscles are more relaxed, other issues such as strengthening other weak muscles can then be addressed.

Giving PT another try might be of great value to you. The important thing is to find a well-qualified therapist knowledgeable in treating PFD and/or IC. If you need help finding such a therapist, you might want to check the list of health care providers given in the Patient Handbook here or you can contact the ICA. The ICA can send you a list of experienced therapists in your area.

I hope you can quickly find answers to your questions and help to relieve your symptoms!