Hello Pudendal Hope community, first of all I am sorry for everyone who suffers (has suffered) from this terrible condition. I have been coming to this forum for several times in the last year, reading stories of people describing what they're going through, trying to relate my experience with theirs, and it almost always seemed to me that I can't be possibly suffering from the same condition they are, I am not having such severe symptoms, I am not experiencing this to the same extent they are, but generally I guess I just don't want it to be true.
My story is pretty long (at least that's what I believe), so I will try to explain everything chronologically from the start of "my journey" to where I am now.
Things started a year and a half ago, I started to experience more sensation than usual in my genital area, I didn't think much of it, am in my twenties, considered it normal, that went on for a few days until that sensation intensified more and more, to the point where I knew something isn't right, googled my symptoms, there wasn't much I could relate to except something called PGAD, and when I read about it, it scared the crap out me, I basically didn't get to sleep that night, so the next day I went to an urologist (I actually knew him from before), he diagnosed me with an UTI, I was relieved, took the prescribed antibiotic for 10 days, my symptoms started to get better and better, to the point where everything was getting back to normal, then on the 10th day something new and weird started to happen, I began to feel a vibrating sensation from the base to the tip of my penis, so I immediately went to the urologist again, he said that it was all fine and it was all in my head (classic), the next days went by and that vibrating sensation started to expand, the area around my pubic bone, bladder on my stomach side, and the area of my lower back (sacrum) started to have these sensations too, this went on for a few days, the vibrations on my penis though were the only ones who felt like they were constantly there, the others I felt almost only when I laid down, then things became even more strange, I started to experience weird sensations around my anus and rectum, it felt like something was literally stuck somewhere in the rectum (towards the perineum), I'd have muscle spasms at and around the perineum and anus, bowel movements became painful and would exaggerate the sensations even further, urinating became painful as well because whenever I contracted the muscles on my perineum (the ones used to start/stop the urination process) I felt pain, and when going to sleep (I usually sleep on my stomach) I would experience strange sensations around my anus, sensations like if something was moving around the anal opening, and occasionally stabbing like pain (this was strange because it seemed to happen only when I was sleeping on my stomach, when the penis was being pressed against the bed), then things became terrible I started to have pain on the perineum and anal area when sitting down and when walking (every step I made felt like scratches being made with a sharp object on my perineum), nothing I'd do would help with anything, and what I could not grasp at all was the link between the penis and anus, just touching the penis would trigger that stabbing pain in and around the anus.
So I actually went for the third time to the urologist, explained everything to him, he still refused to believe any of it, and just let me go. At this point I became depressed to the point where I didn't know what to do, told my family what was going on, my dad suggested to go to an internist (due to the anal area issues), so we went to one, explained everything that had been going on before the visit to him, and he didn't know what to do either, physically I seemed fine, so all he did was order a ultrasound scan of my abdomen and some blood tests (which both turned out fine), so we left him without any answer whatsoever. Next I suggested we go to a neurologist, since nothing had turned out from the ultrasound and blood tests, and we went to a neurosurgeon (my dad knew him from an earlier time), I again explained everything, and it seemed to me that I was making sense to him, he prescribed me some muscle relaxants and told me I'd be fine, except I wasn't getting fine, except the foreign object feeling in my rectum which subsided everything else was basically the same. After some days while putting on my shoes I hurt my low back somehow, I would have incredible pain on my sacrum mainly but no exclusively, this feeling was completely new, never had experienced such pain, I could barely walk, and bending was an absolute no!!! So I thought could everything be related to these spinal issues now. Went back to the neuro, he prescribed me some injections (anti-inflammatory), took 2 injections per day for 3 days, those helped my spine tremendously but everything else stayed the same, at that point the neuro told us I'd have to make an MRI, which I did afterwards, and all the MRI could account for was the spine issues but nothing else (mild L4-L5 and L5-S1 central protrusion). The neurosurgeon suggested me PT (general PT), which I also did, the results from that I'm not even sure myself, with time everything seemed to heal (extremely extremely slowly though), but it was still bad, I couldn't sit, work, simply couldn't be normal, at that point I decided I would do the PT exercises I had learned for a while, so after some time I did hurt my lower back again (same as earlier basically), this time though it was 5 times more painful, I took the same injections again and it solved that issue again, after a month or so with little to no improvement I decided to go to a new neurosurgeon, same story though, all he did was tell me to do more "exercise", desperate as I was with no definitive answer I just did that for a month or so before going to ANOTHER neurosurgeon (which is supposed to be one of the best in the area), I again explained everything, he however based on everything I had done did conclude that it couldn't be possibly spine related (central nervous system related) and thus couldn't help me in any way. After a week I went to neurologist this time, explained everything, he did the basic physician tests and he couldn't conclude anything specific because I wasn't having muscle weakness or hadn't lost muscle control, he suggested that I should visit an internist/proctologist and do a colonoscopy (which I did, and which turned out normal except a little scar I might have caused somehow), with that colonoscopy result I consulted 3 other internists/proctologists, and the first diagnosed me with an anal fissure (from that scar) and wanted me to undergo surgery, the second based off the rectal exam said I had nothing, and the third based off the rectal exam as well, diagnosed me with light inner hemorrhoids (which can't be causing all this mess), during that time I actually visited another neurologist with no results whatsoever.
Right now it has been a year and a half which has passed while I suffered each day, during this time however I've been getting better, most of the mentioned symptoms are gone except the pain while sitting, and muscle spams (mostly when laying on the side) but I developed other symptoms/conditions as well, now I have a general lower back pain, sometimes pain in the sacrum and around the sacrum, coccyx pain and pain in the glutes.
At this point I have absolutely no idea what to do, but I kind of don't believe it could be PNE related due to the fact that I have been getting better overtime, but could it be some sort of PN and what is causing it, that is a question I feel like I am not even close to answering, but I am not giving up, I know at some point I will beat this, I am just not sure what I'll have to do to achieve that.
Sorry for the long post and I'd be more than happy to listen to any advice or suggestion you may have.
Possible PN
Re: Possible PN
Hello Wert,
It sounds like you have experienced the same frustration many of us have in going from doctor to doctor and not finding any answers.
The diagnosis of PN is based partly on the location of your pain, your history, and the results of a clinical exam. From what you have described, the location of your pain was initially in the areas innervated by the pudendal nerve. But you also have pain in your lower back which means there could be some underlying problem that is causing the PN symptoms. For me it was a combination of musculoskeletal predisposition, bad ligaments, and history of exercise. I don't know what your history is. Do you have any idea what might have triggered your symptoms? It doesn't sound like you have had a clinical exam that included an evaluation of your pelvic floor or an evaluation of your response when the pudendal nerve is pressed on via the rectum.
I'm not sure what country you live in but your next step may be to find a provider who is knowledgeable about pudendal neuralglia and how to diagnose it or rule it out. In my case, a physical therapist figured out my diagnosis and the underlying cause but it wasn't just a general PT, it was someone who knew about PN and how to diagnose it.
I think your assessment that you are going to beat this is accurate. You are young and more likely to heal than an older person would. But I think getting a proper diagnosis so that you know what kind of treatments to pursue is important.
Violet
It sounds like you have experienced the same frustration many of us have in going from doctor to doctor and not finding any answers.
The diagnosis of PN is based partly on the location of your pain, your history, and the results of a clinical exam. From what you have described, the location of your pain was initially in the areas innervated by the pudendal nerve. But you also have pain in your lower back which means there could be some underlying problem that is causing the PN symptoms. For me it was a combination of musculoskeletal predisposition, bad ligaments, and history of exercise. I don't know what your history is. Do you have any idea what might have triggered your symptoms? It doesn't sound like you have had a clinical exam that included an evaluation of your pelvic floor or an evaluation of your response when the pudendal nerve is pressed on via the rectum.
I'm not sure what country you live in but your next step may be to find a provider who is knowledgeable about pudendal neuralglia and how to diagnose it or rule it out. In my case, a physical therapist figured out my diagnosis and the underlying cause but it wasn't just a general PT, it was someone who knew about PN and how to diagnose it.
I think your assessment that you are going to beat this is accurate. You are young and more likely to heal than an older person would. But I think getting a proper diagnosis so that you know what kind of treatments to pursue is important.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Possible PN
Hello Violet,
Well I have thought very much to what might have caused all this mess, and there resulted a lot of reasons, at least from my perspective, here I will list them all :
- 2 months prior to everything starting I have had a minor surgery on my lower abdomen, it all went fine, but during the recovery period I most certainly did over tense my abdominal and back muscles way too much trying to avoid certain positions, bending and such to escape the pain as much as possible.
- Generally poor posture, and terrible seating positions. I can say that I spent years sitting improperly by sitting on my sacrum and having my back bent unnecessarily (reason why I think the L4-L5 and L5-S1 issues).
- Sitting way too much, I can recall that prior to when things started I spent an absurd amount of time seated in a poor posture and in a very bad chair (10+ hours each day for a few days), working for finals.
- The UTI. I am not sure about this one, I know infections can cause damage to nerve tissues as well, but was it that bad that it caused all this mess. This was the incident though which took my full attention to the area, prior to that I haven't had such levels of stress before.
- There was also an incident which dates about 5-6 months before everything started. I became constipated, and had a terrible bowel movement, which may have caused the scar in the wall of the colon which I did mention, reason why I believe that is because I found blood afterwards and had incredible anal pain, but it had healed.
- Lack of exercise, if it counts.
So I believe that everything that happened must have contributed to it, but what triggered the final shot I am not sure, probably the prolonged sitting.
As of doctors, I live in Eastern Europe, absolutely no one seemed to have an idea of what I have (heck I am not even sure myself tbh), so you can imagine my desperation on this manner, I remember asking the neurologist if it could be a nerve issue, he told me that if that were the case then it would be extremely hard to prove and closed that topic.
At the moment the only hope I have is that I might get the chance to go to Germany, but even then it will be hard since I haven't been able to find much information about how this kind of issue is treated or who treats it there.
Well I have thought very much to what might have caused all this mess, and there resulted a lot of reasons, at least from my perspective, here I will list them all :
- 2 months prior to everything starting I have had a minor surgery on my lower abdomen, it all went fine, but during the recovery period I most certainly did over tense my abdominal and back muscles way too much trying to avoid certain positions, bending and such to escape the pain as much as possible.
- Generally poor posture, and terrible seating positions. I can say that I spent years sitting improperly by sitting on my sacrum and having my back bent unnecessarily (reason why I think the L4-L5 and L5-S1 issues).
- Sitting way too much, I can recall that prior to when things started I spent an absurd amount of time seated in a poor posture and in a very bad chair (10+ hours each day for a few days), working for finals.
- The UTI. I am not sure about this one, I know infections can cause damage to nerve tissues as well, but was it that bad that it caused all this mess. This was the incident though which took my full attention to the area, prior to that I haven't had such levels of stress before.
- There was also an incident which dates about 5-6 months before everything started. I became constipated, and had a terrible bowel movement, which may have caused the scar in the wall of the colon which I did mention, reason why I believe that is because I found blood afterwards and had incredible anal pain, but it had healed.
- Lack of exercise, if it counts.
So I believe that everything that happened must have contributed to it, but what triggered the final shot I am not sure, probably the prolonged sitting.
As of doctors, I live in Eastern Europe, absolutely no one seemed to have an idea of what I have (heck I am not even sure myself tbh), so you can imagine my desperation on this manner, I remember asking the neurologist if it could be a nerve issue, he told me that if that were the case then it would be extremely hard to prove and closed that topic.
At the moment the only hope I have is that I might get the chance to go to Germany, but even then it will be hard since I haven't been able to find much information about how this kind of issue is treated or who treats it there.
Re: Possible PN
Hi Wert,
You are in a difficult situation there. And yes, it is true that often many things combine together to trigger PN.
You could private message Flyer28 to see who he might recommend you go to. There are some excellent European doctors who treat PN. http://www.pudendalhope.info/node/57 We don't have any listed for Germany but I'm quite certain there are some and if you read through the German section of this forum you can probably find out who they are. There are some excellent PT's too but I don't know if there are any in your country. You may have to travel, unfortunately. I know how difficult that is because I traveled to France but it was worth it.
Violet
You are in a difficult situation there. And yes, it is true that often many things combine together to trigger PN.
You could private message Flyer28 to see who he might recommend you go to. There are some excellent European doctors who treat PN. http://www.pudendalhope.info/node/57 We don't have any listed for Germany but I'm quite certain there are some and if you read through the German section of this forum you can probably find out who they are. There are some excellent PT's too but I don't know if there are any in your country. You may have to travel, unfortunately. I know how difficult that is because I traveled to France but it was worth it.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.