Health Organization for Pudendal Education

Calluna, thanks for the tips. I'm guessing it's the gabapentin because I was having 2 bm's a day prior the impar block and starting the gabapentin. I'd like to give the gabapentin a chance to work so I guess I'll keep taking it but this constipation thing is not fun.

Carguy, I am taking alot of gabapentin and it was making me constipated also. But I am still taking my fiber but have supplemeneted with prunes and and Dulcalax. This has done the trick and my constipation is gone. Of course keep drinking alot of water.

Jim

Wow Biff101, I too have been trying to keep a lot of fiber in my diet and just tried Dulcolax the last couple of days. Things just didn't seem to be moving very well and then wow I started feeling cramps this evening in my abdomen and it was like the flood gates opened. I had a small bout of diarrhea and thought ok I'm definitely not constipated anymore. I was feeling somewhat decent today as far as pain and was thinking maybe the gabapentin was starting to work but shortly after having the quick round of diarrhea I started getting pain in my perineum again. Not shooting pain really but just more of a real bad ache type of pain. This beast is hard for me to figure out, first I thought my pain was more to the right side and in the middle then tonight after my BM it started flaring up on what felt like the left side and then a few minutes later it switched over to the right side. It didn't seem to matter much whether I was standing up or lying down the pain stayed about the same so I went to the toilet and sat there again but that didn't seem to help the pain subside either. So I really don't know what to think, I don't really have much pain anywhere except my perineum but I do have starting and stopping when urinating still and some spasms of my anal sphincter sometimes after a BM. Probably TMI but it's a challenge to try to pinpoint the problem areas when things move around.

I have more questions for anyone that can help. I went to a local PT here for the first time and she noted that my pelvis may be tilted such that the left side ilium is a quarter of an inch higher than the right side. She said that it wasn't extreme but that the ligaments might be tight on that side and lax on the right side. So we were wondering if that might put pressure on the pudendal nerve? I expect it has been this way a long time and I don't think I'm hypermobile but I'm most likely hypomobile in this area. I don't really have SI joint pain or lower back pain, just more like stiffness. A lot of the current stiffness is probably due to standing all the time the last couple of months. This PT is not trained to do internal manipulation and I didn't let her do anything really but evaluate me but she suggested I might let her work on the pelvis externally to get it into better alignment. I have already asked for appointments to be set up to see the team in Houston but now I'm wondering if I should pursue the PT and SI alignment first? I kind of got in a hurry to go to Houston because I am worried about damaging my nerve further. There seems to be so much info out there on these different issues but I'm at a loss to know what to do first.

Helllo,

My symptoms are a lot like yours. I have a pain just anterior to the rectal canal area too. It started after a bike ride in late 2010, and slowly developed into chronic pain. It was mild for many months, but then I made things worse by lifting a heavy log, straining my perineum. After that, I got much worse and I had to limit sitting to only that which is essential (at work), and either kneel, stand, or lay down at other times. Not sitting so much has helped in that my condition does not progress or get worse. In fact, I am slowly getting better in some ways (I can run/walk 4-5 miles now). Concerning your difficulties with medications, allow me to share my experience and perhaps it may be of help to you. I am on 1 mg Clonazepam daily and this really helps. It relaxes my perineal and rectal areas enough so that I can drive, work, and even play a bit (gentle), but still have to avoid prolonged sitting. Clonazepam is physically addictive and will make you more tired and sleepy. I am not concerned about the addiction potential, as I know that when the time comes to go off of it, I will wean off slowly. I did not like the idea of being on multiple medications for pain, especially with all the side effects. I was on Baclofen for about 6 weeks, but it made my feet and toes go numb, so I got off of that and all the feeling came back. Clonazepam works for me while I seek a solution to get healed. Perhaps you could ask your doctor for a try dose to see if it works for you. If you do not show improvement in symptoms within one week, you can conclude it is not working for you. My suggestion is to get off all the other meds first, and just try Clonazepam alone if possible so as to eliminate all variables and see if it works for you.

Final comment: I have been pursuing information on Shockwave therapy in Ontario, Canada through Dr. Kirk Andrews. He has had some successes in treating pudendal/perineal issues with shockwave therapy. I have been in contact with two people from this board who have both benefitted from the therapy. Dr. Andrews had pelvic issues himself, and was healed by shockwave therapy. He has a Facebook page if you are interested. I am going to try this therapy myself. It requires a week of continuous therapy, and from what I hear, it is quite painful to endure. However, I can put up with the pain if the payoff is improvement in my function and quality of life.

I truly hope that you get better. I know from experience what this condition does to one's life, how it limits one's life, and I hope you find a cure soon. Final piece of advice: don't rush into surgery until you have researched it thoroughly. From what I have read, only a third get "cured", about a third get somewhat better, and the last third stay the same or get worse. The surgery is very invasive and requires a prolonged recovery time - perhaps 12-18 months. Personally, I will try any and all avenues before having to resort to surgery, as I don't like the odds.

kone

Thanks for the advice Kone. My fear is that if my nerve is entrapped and I wait it will just get worse if I don't do something soon. Your advice might be the best thing for me but I wouldn't know of course unless I wait and tried it, who knows. The problem is I feel like maybe I sat too much with the pain (2 months) listening to a doctor telling me I just needed to get more exercise, it's just ibs, etc. Then I discovered the pne websites and decided to stop sitting, bending, etc. and for the first month I felt a lot better. I was using a donut cushion to drive otherwise no sitting really. Then a month later it started getting painful in the perineum area again trying to sit on the donut and I just stopped sitting altogether. And now 3 more weeks later I'm still having the pain even though I'm not sitting at all. I basically stand all day taking breaks once in awhile to lie down but lying down doesn't really get rid of the pain either. I'm not doing much walking either because that seems to aggravate it too. I don't know if I'm doing the wrong thing now by not stretching and walking more or what? Maybe by staying less mobile things are getting too tight and compounding the problem? It seems like there's so many variables it's hard to know what is the right thing to do. My local PT just wants to try to get my hips straight through therapy but I've read on here where that made things worse for someone.

So yes I'd like to try conservative methods first but just don't know if that's the right thing to do or just go down to Houston and get the nerve blocks, etc. and see what happens. I'm definitely not comfortable with the thought of that surgery but concerned about how long I can wait. The shock wave treatment sounds promising but seems like it maybe needs some time to prove out the results.

Kone, do you have any other symptoms other than the perineum pain? I also have occasional urinary symptoms like starting and stopping while voiding plus some anal spasm while defecating. But my pain is primarily confined to the perineum and if I strain to urinate sometimes I feel increased pain in the perineum. Seems like a lot of people have similar pain symptoms but other differences.

Need some help trying to put together more pieces of the puzzle. I had the PNMLT done and have 4.3 and 4.5 readings so supposedly have some neuropathy or nerve damage on both sides. From that alone would it be wise to assume there is entrapment? I have read that anything over 4 is abnormal so guess I could have a bilateral entrapment. It's weird that all my pain symptoms appeared at about the same time since I don't ever remember any pain that was really one-sided, it seemed to show up in the center as perineum pain.
Also had the blocks done in the st ligament on both sides. I got numb in the expected areas but since my pain isn't immediate upon sitting I couldn't say with 100% accuracy that it took my pain away. But right after the injections I did try to sit a little while and bend over a few times and didn't really feel much in the way of pain so I guess you could say that was a positive result. I haven't really tried PT yet so don't know if that's the route I should take now or if that would be a waste of time. I have found that bending over at the waste or squatting does produce more pain in my perineum area so would that indicate an entrapment or could some muscle impinging on the nerve be a possiblility? Anyone else out there with similar symptoms?

I remember Dr Hibner saying that referring to a person's history would be the best indication of whether there was true entrapment or not .
If there is a definitive trauma (fall,childbirth, surgery) actual entrapment is more likely.
However I'm sure that genetically or pathologically some people are more disposed to entrapment without any 'event', OR there is a build up of problems and one small almost unnoticeable incident triggers pain in what could be true entrapment. History would not show that. It has been reported for instance that the hyper mobile are predisposed to entrapments and even pain ( Ehlers-Danlos syndrome)
I think it's too hard a question to call in your case, although if I were to have a stab I would think it is likely to be muscle related and therefore hopefully can be helped by PT. I say this because you have similar pain on both sides and that pain was initiated bilaterally too??
If a physiotherapist can find trigger points in your pelvic muscles and can use myofascial release to ease the tightness this will hopefully ease any nerve pressure.
Well that's my theory BUT you don't need to take ANY notice, anyone else want to give it a go?
Take care,
Helen

Yes Helen that's correct, I can't recall any memorable event or injury that could have caused this and with the bilateral symptoms I was having a little trouble comprehending true entrapment. The pain symptoms came on with both sides at the same time so that I couldn't tell whether it was right or left but rather it appeared to be in the center. I do not have pain immediately upon sitting but start noticing discomfort within a few minutes. It's never been any shooting pain or sharp pain but more aching as well as a pulling or stretching sensation. I sense that some of that sensation could possibly be tight muscles? I'm assuming that the nerves are involved somehow otherwise I wouldn't have had abnormal PNMLT but is it true entrapment by ligaments or is it possibly muscle impinging the nerves? I feel that I really need to find out before agreeing to surgery and later find out it didn't help because it wasn't a ligament issue. I definitely can feel tightness and pulling sensation in my gluteal area and my perineum when bending over or squatting so there has to be either a muscle or ligament issue of some kind I suspect. I am thinking I need to give PT a go first before making any decisions but not sure what kind of PT is best. Thanks to anyone who can help shed some light on what these symptoms mean, I hope I am portraying them accurately.