Health Organization for Pudendal Education

Dear Members:

I am new to this group and would like to introduce myself and my arduous history. I just happened to have found this group by yet aother extensive attempt at research; upon my "landing" here I read and re-read a few of your stories/history which prompted me to join as they sounded just like mine. By joining I hope that we can share our stories and help each other in our quest at the very least for relief; be it short-term or lasting. Hopefully there is a cure on the horizon for all of you. If this post sounds a bit haphazzard, I apologize. I woke up with an extreme amount of pain, took 3 Advil as recommended by one of my many physicians, of which, didn't help (I knew it wouldn't, however did it to document what does and does not help). I then resorted to pain medications and ice which has helped - at least for a short while anyway. I am now dreading having to go to one of my 3 jobs later this afternoon which entails sitting for 5 hours at a stretch, and, I have to work this entire weekend totalling 17 hours of sitting; God help me.

As for my story: I have been experiencing seemingly non-stop chronic pelvic pain that primarily began approximately 26 years ago. At that time I was informed that I probably had endometriosis. I followed a specialist's recommendation of having a lower GI (back then that procedure was much more commonly utilized than today), the radiologist lost his patience with me before the procedure got into "full swing", indicated he didn't have time for me... My response: "I don't have time for you either." It was at that point that I got up and left. Due to my much younger age and naivete, and the fact that I didn't hear the "C" word from the referring physician, I chose to drop the chase of an answer. Speed forward 20 years later: I ended up having a laparoscopy, my first of many more to come, resulting in the diagnosis of endometriosis, lysis of adhesions (left ovary was adhered to my sigmoid colon, all of which were adhered to my pelvic sidewall, hysteroscopy, and one other procedure - the name of which escapes me at the moment. For approximately 3 months following that procedure, I felt great. It has been downhill since then. I was then given Lupron injections which caused a whole host of other problems, one of which is reactive hypoglycemia; my spleen is trashed. My bowel function is out the window (never been the same since), have had too many procedures to count/name, I'm now significantly older (post menopausal), and my pain issues have increased. My pelvis has and does feel like its being torched and it feels like a piece of heavy equipment is rolling over it, the pain very often extends down into my thighs, I get shooting pains in my suprapubic area, left lower quadrant (adnexal (ovary) area), and the left side of my pelvis. Over the past 2 years or so, I wake up nearly every night and morning with excruciating back pain which seems to coincide with bowel function/movement/trapped gas. This on top of the fact that I haven't been able to sit for extended periods of time, I cannot stand for extended periods of time, I've lost a great deal of weight (for me), one of my jobs - as indicated above - I'm certain I'm about to lose largely due to all of this, and everything has caused a vicious cycle of pain, depression-feel slightly better-then more pain-depression, et cetera, et cetera. I am at my wits end. One day recently I recalled a terrible horseback riding accident that occurred on May 27, 1995 - the same day famous actor had had a horseback riding accident which unfortunately later resulted in his death. My accident; I landed directly on my coccyx, and, had hit my head on the ground resulting in numbness in my right arm. I couldn't walk for at least 3 months during which time I had seen a number of physicians who took x-rays resulting in "you're fine." Right about at the 3-month period, I found another orthopedic surgeon who ordered specialized views... low and behold there was a fracture; could have been an occult fracture, but I'll never know - another long story... an orthopedic surgeon whom I saw months earlier blew me off, I then saw him much later, he asked if he could copy that film - Interestingly that film has vanished. The day before my appointment with the new orthopedic surgeon, I tripped going up the stairs, and shortly thereafter I was able to walk, sit, et cetera. I relayed this incident to the surgeon the next day who exclaimed, "you just set that fracture!" He was amazed. Bottom line (no pun intended), he indicated that I may have serious problems down the road. I am now wondering if that fracture is and has been the cause of much of my pain. Upon reviewing posts, et cetera on this site I believe I may have found some answers, and, "hope."

Question/s: Do any of you experience what I experience? Do you feel that there is some connection between bowel movements (sorry - sensitive issue here) and low back pain? For instance, and again, I woke up this morning with incapacitating back pain. I get an almost immediate urge to have a bowel movement during which can be painful to my back, but this morning I could not get up from the commode without yelling from the pain.

Any comments would be most appreciative. My physical health as degraded to the point in which I feel totally helpless and alone; I feel as though I'm losing my mind. Please... I need help.

Best wishes to all.
JAT

Hello JAT and welcome to HOPE. You are not alone in your pain. I too have had a long history of endometriosis and your story sounds very familiar to me. Bowel movements have always been a source of pain and discomfort -- yes even in the lower back/sacrum -- and I usually feel significant pain relief after having one. I too have had laparoscopic surgeries finding my bowel stuck to my pelvic wall. Because of my bowel problems I developed chronic constipation which probably contributed to the pudendal neuralgia that I have now. I have taken Danazol, Lupron, and a couple of other "new" drugs whose names now escape me, to address the endometriosis, to no avail, and so last November had a hysterectomy. By then, however, my pudendal nerve was already damaged and so the surgery had no effect on my pain.

My advice to you is to read as much as you can on this website and then if your symptoms seem to match PN, to find a PN specialist in your area to obtain a diagnosis. And once you have a diagnosis you have many treatment options to pursue.

Please do keep in touch and do not lose hope. We have all been through what you are going through now and have survived to tell the tale. Once you have a diagnosis things will be a bit easier since at least you know what you are dealing with and what is causing your pain.

Warm regards,

Lernica

JAT, both endometriosis and falls causing pelvic misalignment/SI joint problems can be possible causes of pudendal neuropathy and difficulty with bowel movements . Have you been evaluated by a physical therapist yet?

Jat,

Your story sounds similar to mine. Prior to having my hysterectomy, I was told that I had sever endometriosis. My bowel, and ovaries were adhered to my uterus and some internal organs. This was revealed by four years prior to hysterectomy, during a tubal.

I used to have bowel problems about every other month, when I had my period. I'd have pain in my legs during the bm. After the bm, I experienced relief, and symptoms returned every other period. I vaguely recall rectal burning too.

I feel that my hysterectomy was the match that kicked off the PN pain, which was probably going to occur in time. I also used to experience cold feelings down both legs. The only way I can describe them, is if someone was running a cold piece of metal along my shins. Prolonged sitting at work probably didn't help either.

My main issues are rectal and heel pain. When my rectum isn't burning, I feel lots of weird muscle spasm-like twitches around the rectum.

Violet M wrote:JAT, both endometriosis and falls causing pelvic misalignment/SI joint problems can be possible causes of pudendal neuropathy and difficulty with bowel movements . Have you been evaluated by a physical therapist yet?

Hi Violet.

I apologise for the delay in responding. After I undergo a battery of procedures today; chest, abdominal, and pelvic CT, and, nuclear medicine bone scan (my oncologist wants to be sure that there isn't any cancer "lurking' - he did a huge round of blood work which came up negative, and, a urinalysis and culture; negative... I had breast cancer 10-11 years ago), I'm scheduled to see a neurologist (woman) who specializes in women's issues. The latter physician wouldn't see me until 12/30/2011 (I say "wouldn't" as the first thing out of the receptionist's mouth was, "she's not taking any new patients until 12/30" - I've been around the block for many years and have been in the medical field for 37 years and know that that very often - not always - those words are a way to say... "no... she doesn't want new patients"). Thanks to the physician that recommended her (he and my oncologist believe there's a strong possibility I just may have PE or PNE; the nerve being entrapped in scar tissue from one, perhaps 2 coccygeal fractures), called her as soon as he found out about the very long delay; she's now going to see me 8/31/2011. I've been suffering with whatever "this" is for at least 20 years. Anyway, he, the physician that called the neurologist, wants me to go to physical therapy to diagnose and treat concentrating soley on the pelvic floor. However, I decided to wait and see what the neurologist has to say; my guess is that she'll want me to have the physical therapy... we'll see.

Side note: My employer has refused to respond to my request for this day off to have these procedures; the mindset of this institution (hospital); is that everyone is abusing "the system", there are first-hand accounts of 1) a transcriptionist who had a hip replacement; her surgeon stated that she was not to return to work for a specified number of weeks; employer some how overroad her surgeon's orders and forced this poor woman to "get back to work." 2) another transcriptionist who had cancer (type escapes me, but is in remission) had to have a breast bx. She was told by her physician to NOT return to work that day; "manager" indicated you WILL return to work immediately following the bx. These are the type of people who'm I work for, and who's "mission and values statement is hypocritical. Needless to say, my manager has ignored my request for the day off. My stance: my health is more important. If I get fired I'll take them to court.

Sorry - as usual... I digressed, and I apologize.

Wow, they are really playing hardball aren't they? Are there no sick day benefits where you work, Jat? If there are sick day benefits it doesn't seem like they could legally tell you which days you can be sick. Maybe check with your state attorney general.

I am new to the site. I have limited talents doing much more then my E Mails, A little about me and my story. I am 67 years young, I had a vestibulectomy on my left side four and half years ago. I was diagnoised with pudendal three yrs ago. AT first my family and I were sure I could lick this. Little did we no. I live my life on vicodin, oxycodyne neurtrons, throw in blood pressure , nerve pills, few aspirins, estrogens lipitor,laxatives, occassionaly steroid. I laugh at this because before my surgury I was a health nut, I took nothing, walked 5 miles every day.Now sometime I don't think it is necessary for me to get out of bed. I have tried doctor after doctor,recently made another appt. with the original surgeon in hope maybe he can release the surgery spot. It always seems to draw as the day goes on and burns so much. Any suggestions or just someone who wouldnt mind talking to me. I need to be a tougher bird, but it is wearing me down.

Linda in Ohio

Hi Linda,
Welcome, you will find a lot of good information and hopefully end the trail around for a doctor who recognises this problem and can give you treatment that will work (I hope)
Take a Look at the home pages http://www.pudendalhope.org/node/58 to start you on the right road at last.
You will definitely find others who have arrived here by a similar surgical route, and will doubtless gain much emotional support and comfort from the wonderful people here.
There are always tons of discussions about medication and suggestions from others of different options which have certainly helped me. The whole forum has helped such a lot. ( just started on lyrica/pregabalin so might be a bit spaced here it's weird but I like it so far )
I'm English but I know that others will be sending you their best wishes and valuable information from nearer to you and possibly from far flung further away too.
Take care
Helen