New Member: Pudendal Nerve Damage - Desperate for Relief

[Violet M]

Hi Videosandwich,

According to the publication that lists the Nantes criteria for diagnosing pudendal nerve entrapment, there can be tenderness when the PT presses on the pudendal nerve at the ischial spine and like Hibner said, it is typically unilateral. Here is how they describe it:

"Presence of Exquisite Tenderness on Palpation of the Ischial Spine

Palpation of the ischial spine (posterior and slightly lateral)
during digital rectal or vaginal examination is very often
tender. This does not constitute a true Tinel sign, as this
palpation is locally tender, but does not trigger the distal pain
described by the patient. Many anatomical structures are
situated at this level, making this tenderness very difficult to
interpret: passage of the pudendal nerve in the sacrospinous
ligament, insertions of the sacrospinous ligament, ischiococ
cygeal fibers of levator ani muscles, diffuse hypersensitivity.
Furthermore, tenderness of this region is not specific as it is
also observed in asymptomatic subjects. However, unilateral
tenderness at this site is suggestive."

For me, when the PT pressed on the nerve at the ischial spine it was tender and when Dr. Bautrant pressed there he could tell right away that I had a nerve entrapment, but it isn't always that obvious with everyone. You can have bilateral neuralgia without a nerve entrapment and the pain would be in the distribution area of the pudendal nerve on both sides -- genitals, perineum, and may or may not include the rectum. Eventually over time my symptoms started to feel like I had been hit in the crotch by a baseball bat and it was pretty much diffuse pain throughout my pelvis. I don't remember having abdominal pain and I don't hear that typically described on this forum, so I don't know if PN is the primary culprit in your case, although maybe the pudendal nerve is affected in addition to other areas.

I'm glad you are sleeping better. Just the fact that your symptoms are somewhat positional makes one suspicious that there is something mechanical going on. But it is a puzzle for sure.

Violet

[VideoSandwich123]

Thank you Violet.

I guess I’m still somewhat confused what “tender” means in this context. Like it reproduces the exact pain? Or just that there is a feeling of pressure? Sorry for all of the questions but I appreciate your patience!

Hit in the crotch with a baseball bat is a pretty good way to describe it. I often feel this from time to time. And yes, I’ve only recently started to experience more rectal pain. But I do have pain in all of those other areas (mostly tingling/burning/tightness/numbness, and it feels diffuse through the pelvis. Very concerning and seems to be progressively getting worse. The accompanying abdominal burning also makes me suspect there is something else at play.

Still don’t know what’s going on. Had to reschedule nerve block on Monday at a new pain clinic for various reasons. Hoping to have more answers then.

Thanks again.

[Violet M]

I guess I’m still somewhat confused what “tender” means in this context. Like it reproduces the exact pain? Or just that there is a feeling of pressure?

Based on my experience I wouldn't say it reproduces the exact pain everywhere in the pelvis like it was traveling along the nerve - it was just local tenderness where they pressed at the ischial spine. And it wasn't the kind of pain that makes you jump off the table. But it was definitely uncomfortable, and for me it was more than just a feeling of pressure. I think anyone, even a person with no neuralgia, could experience a sensation of pressure there if the nerve is pressed on.

Violet

[VideoSandwich123]

Thank you Violet, I really appreciate your responses. Considering I felt no explicit tenderness at the ischial spine (and the fact I even ask to ask) leads me to believe that I don't have damage/compression/entrapment there. I haven't tested Alcock's canal yet (honestly I'm nervous to, as I think that's where the pain is probably located). But I think I can at least rule out ischial spine for the time being. Thanks again.

[Violet M]

If I remember correctly, the article does not list tenderness on palpation at the ischial spine as an essential symptom for a diagnosis of entrapment, but it can be an accompanying symptom, especially if it is just on one side.

[Balenul]

Hey April and Violet,

Thank you for taking the time to read and respond and for the information/advice. You both are very response on these boards, and it is much appreciated!

Yes, I do have many muscle spasms throughout my entire body really but especially the lower half. I only did one round of the trigger point injections on one side, and I haven't followed up with them yet as I honestly didn't really like the experience there. They recommend doing at least 6 rounds before you start to see any real benefits.

The telecom with Hibner went really well. He was super nice and knowledgeable. Took time to answer all of my question/concerns, etc.

He definitely suspects this is all just muscle spasm related and that there isn't any true entrapment/damage. Especially since Xanax will often calm my symptoms for a bit. He also mentioned that my "delayed" flares also point to muscle issues.

But it seems to me that after 2 months of pelvic floor physical therapy, I've been able to "relax" my pelvic floor quite a bit according to my PT. He said I'm not that hypertonic or spasming. I'm also not so sure my pelvic floor PT is very knowledgeable on nerve issues (I asked him to palpate the pudendal nerve to see if he could reproduce my pain symptoms, and he said the nerve is too deep to palpate!) Yet my symptoms remain. So need to find a new PT.

My symptoms are also bilateral, and Hibner mentioned true entrapment is almost always unilateral. I've already tried the gabapentin/valium/baclofen suppositories for weeks without any real relief. So I'm not sure what to make of all this in my case.

Hibner obviously would need to see for himself with all of the more conservative methods before even considering other issues/options. He's going to send valium/baclofen/ketamine suppositories. He wants to see how the ketamine helps. He's also suggesting an examination with his PT as well as the botox injections. This is obviously really expensive. And I do have concerns about my ability to sit and travel there without pain/discomfort/flares. And of course it's not guaranteed to help, but could be a useful step in the process.

Before making any decision on the botox option, I definitely want to explore some nerve blocks first. I'm worried there are multiple nerves at play. Specifically pudendal/iliolingual/genitofemoral.

I did see a a spine/pain doctor yesterday. He reviewed my MRIs and noted that my L4/L5 disc bulge is not trivial. He isn't quite sure how that exactly could be impacting nerves downstream, but due to my symptoms, he immediately recommended a ganglion impar block as a first diagnostic step to see if I have any relief. I have that scheduled for next Tuesday.

What's still strange to me is that my symptoms seem to be at their worst when I'm sleeping. I have to be very careful with how I sleep. I still haven't found the exact triggers yet. And they also sometimes get worse shortly after eating or when I feel my bowels shifting. So I'm going to schedule with a gastro doctor as well just to rule anything out there. I also have an EMG for my legs scheduled for Friday.

I'm beginning to suspect these issues might be more related to the lower spine causing some kind of cascade effect on nerves downstream.

Not so sure what you mean by delayed flares maybe you elaborate.I had botox with Hibner and did zero for me and now after botox is gone my pelvic floor is very spastic.....my symptoms are only in urethra and penis...constant desire to pee ( non stop ) ruining my sleep and Pgad ( but now very rare ).I met Hibner in Warsaw and he told me i am in top 5 patients knowledge wise...this doesn t help me since i am not sure what i have and i doubt pudendal surgery alot .What i can tell you for sure a real hipertonic pelvic floor hurts as hell my friend....i had 2 major surgery , i know what pain is but at 1 session of pelvic therapy i almost fainted.My confidence in doctors start to be lower and lower , my knowledge is vast but every day i discover new things and i realize so little i know....Hibner is a nice person , with knowledge but still i expected abit more.

[VideoSandwich123]

Hey Balenul,

What I mean by “delayed” flare is that I cannot trigger my symptoms in the moment. So I don’t really know what causes them.

But let’s say I’m active or sitting a lot one day. Maybe later that night or the next day, I’ll have a “flare up” out of nowhere (no particular trigger). So I’m just suspecting that these are just “delayed” flares from the activity. But that is pure speculation. Although I’ve heard it can happen with PN.

I’ve since seen a third and very experienced pelvic floor PT. She also confirmed that I do not have a hypertonic pelvic floor.

Sorry to hear about your symptoms man, and that is unfortunate that Botox did not seem to resolve the symptoms or find relief. It definitely sounds like you should have benefited!

Yea Hibner’s next option is stem cells. I’m not very confident in this as a treatment either, as I haven’t really heard success stories.

I definitely share your concerns. I don’t know what I have either. My next steps are to explore spine issues, get nerve blocks, and see a CRPS doctor.

What are your next steps after Hibner and Botox? Hope you find some relief and a cure soon friend.

[Balenul]

For me internal therapy worked.Now it seems a girl can do it in Romania.Like i said pudendal blocks failed but Gabapentin worked so 100 % my pelvic muscles press on something but prolly not only pudendal or not enough on pudendal to make a block work ( anyway on my symptoms i read on forum sometimes blocks fail but still i think a surgery is a big risk ).They told me my bladder neck is also very tight but i must find out if is from the pelvic muscles or is a malfunction.Also my abdomen puts alot of pressure on pelvic floor since i had scars from my rectal prolapse surgery.....also not sure what that absorbable mesh did inside.....also i suspect maybe paintfull bladder will see a very good specialist on this soon.So as you see it could be from many places but 100 % muscles and nerves are involved.I have no pain or symptoms except my urethra and Hibner wants to do surgery....i don t want to do it since i don t think my nerve is entraped...irritated for sure entraped i guess not.I have some steps in mind but will take time and i am in a dark spot atm.....if nothing works i consider a neurodomulation device since i guess is more safe than pudendal surgery....if is not entrapment i will ruin myself even more.Hibner botox also fucked up my muscles alot i have huge spams and i barelly urinate.From what you describe i guess is more o dorsal branch of pudendal problem in your case.Hibner did not impress me tbh ....i am sure is a good pelvic surgeon but as knowledge i think he is not the best.....i hope we will both solve this problems.3 years already not sure how more i can suffer....

Crps is developing in time....so not sure you have it but human body is very strange.I told you , in my opinion your pelvic floor seems ok , i know cause i almost fainted....Doctors are a dissapoinment for me , i saw 40 plus i guess.First 8 urologists.....

[Sanink9]

For me internal therapy worked.Now it seems a girl can do it in Romania.Like i said pudendal blocks failed but Gabapentin worked so 100 % my pelvic muscles press on something but prolly not only pudendal or not enough on pudendal to make a block work ( anyway on my symptoms i read on forum sometimes blocks fail but still i think a surgery is a big risk ).They told me my bladder neck is also very tight but i must find out if is from the pelvic muscles or is a malfunction.Also my abdomen puts alot of pressure on pelvic floor since i had scars from my rectal prolapse surgery.....also not sure what that absorbable mesh did inside.....also i suspect maybe paintfull bladder will see a very good specialist on this soon.So as you see it could be from many places but 100 % muscles and nerves are involved.I have no pain or symptoms except my urethra and Hibner wants to do surgery....i don t want to do it since i don t think my nerve is entraped...irritated for sure entraped i guess not.I have some steps in mind but will take time and i am in a dark spot atm.....if nothing works i consider a neurodomulation device since i guess is more safe than pudendal surgery....if is not entrapment i will ruin myself even more.Hibner botox also fucked up my muscles alot i have huge spams and i barelly urinate.From what you describe i guess is more o dorsal branch of pudendal problem in your case.Hibner did not impress me tbh ....i am sure is a good pelvic surgeon but as knowledge i think he is not the best.....i hope we will both solve this problems.3 years already not sure how more i can suffer....

Crps is developing in time....so not sure you have it but human body is very strange.I told you , in my opinion your pelvic floor seems ok , i know cause i almost fainted....Doctors are a dissapoinment for me , i saw 40 plus i guess.First 8 urologists.....

I send you PM

[Balenul]

I did not found any private message.