While I could probably do a better job explaining my symptoms, that link pretty much gives the reader a good summary of what I am doing to manage my pudendal neuralgia/whatever: pelvic floor therapy, hot bathes, stretching, gluten free diet, nothing tight around my waist, and do not push myself physically. Although it sinks to refrain from things I previously enjoyed doing, I am doing much better than I ever thought possible.
My symptoms have always been a bit strange. First, I am the only person I know of that has to take an alpha blocker to be able to urinate effectively. In fact, it has to be the brand name Rapaflo; the generic, Silodosin, is the bane of my existence because insurance companies want me to take it, yet it does not work for me at all. Next, it seems like most people suffer more from most PN symptoms than I do minus one or two: my pelvic pain from wearing anything tight around my waist and AFTER sex [it works great during] is really really painful. Recently, I would add that I have a lot of pain if I bend my hips in an athletic/yogaish position in any serious manner. This will be important in a second. Also, I have an L5/S1 protruding disk that out dates my PN-like symptoms by at least 5 years. Finally, I had an umbilical hernia, several small inguinal hernias, two nerve entrapment wrapped around my spermatic cord on both sides, and a crooked tailbone all fixed in previous surgeries.
I recently made a decision to stop working full-time in an attempt to go back to school, which downgraded my health insurance. It really did not matter since I do not go to a doctor very much and have gone over a year without seeing a pelvic floor therapist before. After doing some internet research, I found a person who presented themselves as a pelvic floor therapist in my network. While I do not want to trash this person, they indeed possessed the skills to perform pelvic floor therapy. Their hubris, however, led them to the conclusion they could fix me by prescribing more traditional physical therapy/yoga type work outs. The first session was almost exclusively pelvic floor therapy, the second was a mix between pelvic floor therapy and traditional physical therapy, and the third and final session was almost exclusively traditional physical therapy. Although I found the vast majority of things therapeutic this person advised me to do, enough of them irritated my nerve to the point I start burning, like the good ole days, about 4 or 5 days after seeing them.
Although I was in agony for a week or so, I am grateful for this experience, in hindsight, for diagnostic reasons. The pain I felt after this session was very high in my butt, almost going into my back, extending to the place where my butt meets my hips. From my internet research, based off my limited knowledge of anatomy, I am pretty much sure the pain is coming from one of the branches of my cluneal nerve. In prior years, I would have felt pain everywhere but it apparently has localized due to my hard work and past surgeries; I have been dealing with this for nine years now. This has led me to reconsider the prospect of sciatica-like symptoms that will probably lead to the frightening suggestion of spinal fusion surgery. This desire to go down the back surgery road was increased when I found an old Lumbar Myelogram Injection Report that stated "there is potential for irritation or impingement of the exiting left L5 nerve root.
Like many of you, and probably the premise for this site, I try to do internet research to see if I can figure out what the heck is wrong with me. Recently, I Googled something like "pain when rotating hips." This led me to discover "piriformis syndrome." Besides the obvious pain when binding your hips, it sounds like a possibility because some symptoms of it seem to sound a bit like PN symptoms while others are more back-like symptoms. Trying to separate my PN issues from my back issues has been extremely hard this entire time. It also explains why I sometimes have almost no pain and sometimes it is very very acute. It also helps that I would not need spinal fusion to treat piriformis syndrome!
One thing I am curious about is can piriformis syndrome cause problems with urination? When this first started all those years ago, I initially thought I had "cauda equina syndrome." Although I do not have it, I am always on the lookout for something similar because of the Rapaflo element of my issues. Alpha-blockers are designed for people with enlarged prostates because this enlargement puts pressure on their bladder; the alpha-blocker loosens the prostate in order to reduce its sizes, which takes pressure off the bladder. Since I do not have an enlarged prostate, something else could potentially be pushing on my bladder. While I cannot prove it, the back seems like the most likely candidate. This remains especially true if a back nerve can explain my nerve pain.
Anything is possible with these PN-like symptoms, yet I would appreciate any feedback in regards to this matter. While I doubt anything is a "total cure," I am very thankful that each of my four surgeries has reduced some of my pain.
