Health Organization for Pudendal Education

Hello Gabriel,

I just randomly came across your first post from a couple of years ago while I was searching something in Google. Have you ever found a doctor who understands that there may be a connection to your L5S1 injury?
Your symptoms sure sound just like a couple of patients in the US who had something happening at L5S1 that put pressure on their sacral nerve. I've been seeing Dr. Goldstein in San Diego, California (who, incidentally, sees patients from all over the world for pain issues like your and mine). He's been working in recent years with a spine doctor in San Diego who has performed some minimally invasive surgeries to correct their L5S1 issues (some have a herniated disc, some disc bulges...) and their symptoms have either completely disappeared or they are dramatically improved.
I can tell you that they have treated 8 patients for this..
Two men had pain with arousal, 4 had PGAD (persistent genital arousal disorder), one had itching, which I don't have more specifics about, and one had anorgasmia.
I talked to one female patient who had pudendal 'like' symptoms such as labia pain, pain with sitting, rectal pain, and groin pain, also internal vaginal pain on one side, and PGAD. After her surgery at L4L5 (which was also causing impingement of the sacral nerve), she's almost completely healed. It's only been 10 days since her surgery.

I had to login and share this information with you after reading that first post and seeing the comment about L5S1 combined with your symptoms.
I sincerely hope this is helpful.

michellek wrote:Hello Gabriel,

I just randomly came across your first post from a couple of years ago while I was searching something in Google. Have you ever found a doctor who understands that there may be a connection to your L5S1 injury?
Your symptoms sure sound just like a couple of patients in the US who had something happening at L5S1 that put pressure on their sacral nerve. I've been seeing Dr. Goldstein in San Diego, California (who, incidentally, sees patients from all over the world for pain issues like your and mine). He's been working in recent years with a spine doctor in San Diego who has performed some minimally invasive surgeries to correct their L5S1 issues (some have a herniated disc, some disc bulges...) and their symptoms have either completely disappeared or they are dramatically improved.
I can tell you that they have treated 8 patients for this..
Two men had pain with arousal, 4 had PGAD (persistent genital arousal disorder), one had itching, which I don't have more specifics about, and one had anorgasmia.
I talked to one female patient who had pudendal 'like' symptoms such as labia pain, pain with sitting, rectal pain, and groin pain, also internal vaginal pain on one side, and PGAD. After her surgery at L4L5 (which was also causing impingement of the sacral nerve), she's almost completely healed. It's only been 10 days since her surgery.

I had to login and share this information with you after reading that first post and seeing the comment about L5S1 combined with your symptoms.
I sincerely hope this is helpful.

Michelle, I am fascinated by your post because one of the trickiest parts of PNE in my view is to determine if there is a problem with the peripheral nerve vs a spinal radiculopathy. Most PNE docs recommend a lumbosacrl MRI to rule out a likely sacral nerve root impingement before even considering PNE surgery. I'm just wondering what criteria they are using to decide who would be a good candidate for sacral nerve root release. I would like to copy your post and start a new topic in a different thread on this subject is that's OK with you.

Violet

Michelle,

Thank you for your helpful post. I'd be interested in learning more about this as well. Would you mind also sharing the spine surgeon's name and your doctor's full name?

Many thanks,
April

Hello all,

I am in the process of waiting to hear if I will be a candidate for an L5S1 epidural performed by Dr. Choll Kim at the Spine Institute of San Diego. Violet, this is the diagnostic they use.. a successful epidural at L5S1.
I actually had an epidural into this area in 2013 when my L5S1 disc bulge was first discovered, and it was unsuccessful. I didn't feel any improvement or even numbness anywhere afterwards. However, having spoken with his PA, they apparently will be using a different concoction of medicines (more for numbing than pain relief, which I guess would be steroid), and say that there are several places to inject at every 'level.' Meaning, there's still hope for me that the epidural they would perform, could actually show numbing in areas where at least some of my pain is experienced.
I've had at least a dozen nerve blocks in different areas without much success. But if there's anything I know, at this point, about blocks, it's that the results are very variable depending on the exact location of injection which can be difficult to get right, the person doing the block, and the medicines used.
April, the Dr. I've been seeing for the last year for my issues is Dr. Irwin Goldstein at San Diego Sexual Medicine. He sees patients from all over the world for problems like various types of genital pain or dysfunction.

I split part of another topic and copied it here to start a new conversation about differentiating between spinal radiculopathy or sacral nerve root impingements as opposed to peripheral pudendal nerve root impingements.

Mod 3

I signal a similar old post: http://www.pudendalhope.info/forum/view ... f=48&t=710