Health Organization for Pudendal Education

I have read through many of the postings regarding Nerve Blocks, and some of the experiences and stories reported here are quite similar to mine. This leads me to wonder what suggestions folks might have for someone who has had two blocks, with the 2nd block being a total set-back. I have seen a few postings here regarding PRF, but not as many as there are on Nerve Blocks.

Regarding my own situation, I was actually in fairly good shape prior to the nerve blocks I had. My main symptom prior to the first nerve block I had this past August was that after running a mile or two, my pelvic region (scrotum mostly) would radiate with dull/achy pain. And, it took most of the summer to get to the point where I could actually wear running shorts to go running, due to the discomfort I had. I started taking Gabapentin in June, gradually increasing the dosage. In July I spent a week out in SF, doing lots and lots of walking, with no after-effects from walking. In fact, most of this past summer I spent doing lots of walking, at least 4 to 5 days a week, 6 or more miles each time.

So, a week after my SF vacation, I went in for my first Nerve Block with Dr. Howard at the University of MD Medical Center. The Nerve Block seemed to be successful - it probably took a week or more for the steroid to kick in. By the end of August, I was up to 3 miles of running, with no after-effects whatsoever. At this point I should have declared success, but for some reason, or perhaps my belief that "more" is better, I went in for the 2nd block about a month later. I was in very good shape at that point, but what really surprised me was how much better this block made me feel later that day. It was quite incredible - as if I had never even had any pelvic pain whatsoever. I felt incredible the next morning/day, and went for a very light stroll. On the way back home though, I started to feel worse, and actually felt the effects of the block wear off. The next day, things started going down hill. My pelvic region (mostly scrotum) was radiating like crazy, and that lasted a week. The symptoms just started morphing from one kind of pain to another.

About 3 weeks after this 2nd nerve block, things appeared to settle down a bit, to the point where I felt like going for a walk, but even after walking 4 or 5 miles, I would suffer from after-effects like crazy. I also started to develop slight ED.

I went in for a visit to Dr. Marvel in early October to find out why this 2nd block turned out the way it did, and to see what suggestions he may have, including another MED to get the edge off. He prescribed me Cymbalta, but I could not tolerate that MED. So, around mid-October I started back up PT, going in once a week. It seemed to start helping a bit, but again, after a 3 mile walk, it would take me several days to recover from the after-effects.

So, at this point, I have a constant achy/radiating/tightness/soreness in my pelvic region. I feel better in the morning, but symptoms get worse late in the afternoon. I can feel soreness even with routine movenments, like brushing teeth, etc. Very weird. Running seems like a distant dream at this point. I would love to just get back to where I can go for a 3 mile walk with no after-effects, but I don't think I can even get through a 1 or 2 mile walk without feeling soreness or discomfort during the walk.

So, if anyone has some suggestions or experiences, including PRF or other blocks, I would love to hear about them.

Thanks

Hi......I can't offer much advise other than, I have gone the conservative route and had no interventions at all other than physio.....my mother has PN and two ladies I have become friendly with they have all had nerve blocks and they are all worse, my mothers bladder has stopped working and she has had to end up with a supapubic catheter.

I am doing better far better than the others, as my research suggests there is no magic cure for this and a lot of the specialsits are feeling in the dark. Good Luck with whatever you decide.

Generally we try at least two pudendal nerve blocks. If we find you have excellent pain relief for even a few hours after each block, the diagnosis of pudendal neuralgia can be rendered. We also hope, of course, that you get long term relief from these injections. Some people only get short term relief, however.

This means standard pudendal nerve blocks are insufficient to eliminate your pain. At this point, we move onto more advanced treatments such as pulsed radiofrequency treatment, epidural steroid injections, botox, or spinal cord stimulation. There are many options.

My experience is similar to yours. Fitness was my life, I did a lot of running and even more cycling with clubs and on my own. I seemed to spend most of my life on a bike! However in mid 2013 I started to suffer from ED and numbness following club rides. Later I started to get the same problem simply from cycling to work (about 6 miles) and then later running seemed to start to affect things. I tried adopting other exercise to keep up my CV ability but they also affected me. It wasn't so much as suffering pain as "discomfort" and very occasional pain. This was devastating to me and at the end of 13 I started suffering from anxiety (which at the time I thought was my entire nervous system collapsing) however the PN symptoms actually seemed to decline a bit in late 2013 and I had no more ED unless I ran (at this point I had stopped cycling completely).

In early 2014 I had 2 nerve blocks, I was told that they basically come in 2s... They seemed to have no effect but as I said, the PN had seemed to decline and anxiety had become the problem. I also followed this up with pulsed radiofrequency neuromodulation in April 2014 after a short recurrence of pain in March 14 - this immediately caused problems for about 2 months, I was in daily pain through April and May 14. However at the same time I was seeing a physio who set me up with a return to running schedule. The pain eventually started to ease in June 2014 but I got too excited too quickly - got back on the bike and started walking 5 miles per day as well as running and in around July 14 it came crashing down again - not so much pain but ED.

Eventually in Aug 14 I started swimming, started very gradually and increased bit by bit. I am now focused on cycling, am again increasing bit by bit. I still get pain and ED and have had some pain since Dec 14 but am working with an excellent physio (who I wish I'd seen right from the start before all the nerve blocks and interventions) and also saw a psychologist for a while.

I feel much better in myself now and am steadily increasing what I do and using the psychological tools I have learned to get round the symptoms. I'm not on any medication - a GP suggested gabapentin at 1 point but I read up on it and was put off by the side effects and the fact that it simply seems to hide the problem rather than deal with it.

In almost 2 years I have learned a lot about how to deal with this... I could tell you a lot about my experiences, the pitfalls etc. If you need help or want to talk I'd be happy to do so. I live in London, if you live here or need to talk I'd be happy to... It would probably do me good as well!

I feel much better in myself now and am steadily increasing what I do and using the psychological tools I have learned to get round the symptoms.

Searching,
Could you elaborate on that?

ezer wrote:

I feel much better in myself now and am steadily increasing what I do and using the psychological tools I have learned to get round the symptoms.

Searching,
Could you elaborate on that?

Basically I try to use CBT techniques and meditation etc to keep my mind in check. I'm not saying that I don't have bad days and I'm still not back to where I was, not sure I every will be, but I am able to keep myself in check better than I used to. To be honest it sounds like my pain is not as bad as other people's here. But with the physio, the psychologist, understanding what exactly is going on and why helps me a bit