Health Organization for Pudendal Education

Where to go when you arent getting answers. first off, let me say, Im sorry I ask so many questions. If someone asks a questiom and i had useful info,Ill share. But for now, I dont have useful info. ANYWAY, Im 7 months into this. First thought it was just IC. Left tingly in labia a month after IC sympts led me to this forum. So through the months, Ive tried simple things, slowly watching symptoms progress. Like many in this journey, u travel from dr.to dr. who dont have a clue. I need to find a dr.who has a clue what they are talking about. What started in the bladder,led to genitals,to lower extremedies,pgad,to muscle twitching,-worse on certain meds which I had to come off,Now sensitive to touch,vibrating like buzzing sensation in lower back. Had Chiroprtic work,bladder meds,seen naturopath,3 urologists,1 neurologist, finally a tesla mri.still not showing enough info. Thinking of trying internal medicine to check for auto ammune issue as well. Also,PN itself only hurts to touch during most recent exam. When trying to meds I need to take into.consideration being careful because of my pgad symptoms,and Im also very sensitive to gabapentin. Still considering Restorative Excercise but not sure. I need to seek a dr. who is familiar with all of these things to help get SOMETHING under control because apparently Im doing something wrong.
Ive tried Physio already. I thought it was good to have found an obgyn who actually knew what PN was. But hes.already told me he willing to help "manage" symptoms with med.and vaginal nerve blocls,although he had had hardly any PN patients. He suggested I google for a familiar dr.with all this. Is there a dr. in the south that can acknowledge all of these things?? I dont know where to go from here. In Georgia btw but fully aware traveling is in my future.

Lindsay,

Do you feel as though you continue to worsen or have you symptoms stabilized? You seem to need one doctor to coordinate your meds and care. Hopefully Dr. Echenberg can help you with that. I believe that there are many causes of PN pain, only one of which is nerve entrapment. If you can get on a medication that helps dial the pain and fear down a little, maybe a little patience, as well as problem solving on the part of you and your doctor, can help. I know how scary the intense pain can be and how it can make you feel out of control.

Stephanies

Yeah,it would help to have at least some guidence from a dr.and yes it hasent stabeleized it just snow balls. I would like/need tp find what will help with my triggers and such to help me cope. I dont know what muscles are involved but if I knew what woyls be helpful to heel them,I sure would.

Dr. Redmond in Columbia SC should be fairly nearby. Also I have heard of a Dr. Kapural at Wake Forest Baptist. There are excellent PT's that are also worth traveling to see. Check the PT list.

I once had some buzzing type nerve pain and I found sublingual methyl b-12 to be very helpful.