Chronic Pelvic Floor Pain Sufferer

Hi...I am 63 year old female suffering from severe chronic pelvic floor pain. My story has been an unbelievable journey which started when I was 51. I had plantar fasciitis ( heel pain) and after all non invasive therapies did not help, I had surgery where doc released the fascia and shaved down large heel Spurs. This resulted I. Nerve damage in both feet. I was sent yo pain mgmt and I was on high doses of meds with major side effects. Doctor suggested a Neuro stimulator to manage the nerve pain,. I subsequently had that surgery and the leads were placed in my S1 nerve route. Incision got infected and they tried to treat for 6 months and incision kept opening so last culture showed I had staph infection. Ended up in hospital for 5 days. With in that time, started to have hip and groin pain which eventually led to Rectal and vaginal burning. I cannot sit easily. This has been going on since 2008. Long story, I have pudendal nerve entrapment where the infection caused scar tissue to grow and it is trapping a nerve. I feel this burning and pulling all the time. Very painful. This condition weakened my Rectal muscles and I could not expel a bowel movement by 2012 and I had to have a colostomy. Surgeon said he could divert the bowel yet it will not help the nerve pain and he was right. I just feel like the pain is getting worse,. I do my best to stay positive yet I do have some sad painful days. I have tried Botox, injections ...you name it... Nothing has helped. I am not sure how I am going to grow old with this,. I cannot sit. My most recent Doctor has suggested a stimulator and I am considering it.( After they took first one out after infection, they subsequently put in my legs attached to sciatic nerve to manage the pain in my feet and I respond very well to the stimulation ). I loved the first one,,,worked very well yet I had that infection. Doing a lot of thinking

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  • Have you tried a form of cryotherapy like iovera for the pudendal nerve pain? Also, you mentioned you took medicines but have you tried methadone? It helps my nerve pain, though not 100%. Maybe 50%. I'm guessing you've had a long course of pelvic physical therapy? Do you have trigger points that could also be causing some of the pudendal pain? Have you gone for a type of pudendal nerve entrapment surgery to see if maybe they can move the scar tissue off the nerve? I also have plantar fasciitis and after a car accident developed myofascial pain, which is causing my pelvic nerve pain. They are both myofascial problems, so I wonder if we just have a big problem with our connective tissue. Keep hope alive - there is bound to be something that helps that you just haven't tried yet.

  • Hi C, thanks for getting back..I have not heard of cryotherapy like Iovera. I would have to look into that. The medicines I am on seem to be best which too, gives 50% relief. I cannot imagine what i would be like between my pelvis and feet without them. I have had trigger point injections, botox, pudendal blocks, pudendal blocks with S1,2 and 3 block. I wont' even think about surgery for this. i have read up on it and the success rate is not the best and I won't take the chance of getting worse. I always thought there is a problem with my connective tissue.

    I recently went to a new doc where he developed a catheter that infuses pain medicine into the area where it is placed. He intitally did a diagnostic block to see if i had any relief. It was an 'inferior hypogastric plexis block". I did have relief for 2 days. So once he knew he had the right spot, I went back and he did the other procedure where he inserted a catheter which was attached to a pain pump which pumped medicine in there for 8 days. I was really hoping it would help. His theory is that the medicine calms down the area and 'reboots' the nervous system.

    He has had success with other patients.

    I am going back to him tomorrow to discuss any further options. He suggested a stimualator. They do help my feet.

    I have had 2 knee replacements and the colostomy. I also had to go back and have my rectum and anus removed. this is all over an 8 year period. I have not had any problems for those surgeries as far as nerve damage. Yet, sometimes I think i should go back to my pelvic floor PT for any scar tissue in rectal area. When I initially had the surgery, I went back to her so that she could massage to help reduce any amount of scar tissue that might be in there. This pain has gotten worse this past year. That surgery is a little over 3 years old.

    have you had this cryotherapy?

  • No, there is no one in my area that does it in the pelvic area. I thought of flying across the country, but the PN has gotten a bit better while my myofascial pain all over my butt and back has gotten worse and now Im trying to find a doctor who knows how to do trigger point injections (the right way). Most doctors here say they know how to do them, but then when they get started it seems like they've never done it before. Ive had 2 out of 10 doctors do them correctly, but 1 is across country and other stopped practicing pain medicine.

  • Where do you live ? There are quite a few docs in NYC area who do the trigger injections. I've had them plus pudendal nerve blocks with no success. I am going for a 'inferior hypogastric plexus nerve block' on 9/9

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