Consultation with Dr. Conway- Seeking advice

[Jwisdom]

Hi everyone,
I’m relatively new to this condition. Everything started in May this year with tingling in the scrotum that soon turned into terrible penis pain that seemingly came out of nowhere. I immediately assumed it was linked to one of my existing conditions (herniated discs in the thoracic spine putting pressure on the spinal cord), but my doctors don’t believe the two problems are related, so we’ve ruled that out.

In my search for answers, I stumbled across pelvic rehabilitation medicine, where I received a pudendal nerve block that reduced my symptoms enough to provide a diagnosis of PN. I began PFPT soon afterwards, and have done 6 sessions so far in the span of one month (July 20th- present). My PT believes that my PN may be caused by a number of factors during the time that it started, as well as years of specific lifestyle choices, such as sitting for prolonged periods. During April and May, I was extremely depressed about the pain that my herniations cause, and was doing a lot of hiking to clear my mind and just escape from thoughts. I was also in the midst of losing weight, but and ended up losing a significant amount during April, 20 lbs in one month. My PT believes that my lifestyle of prolonged sitting, in combination with deconditioned and possibly atrophied muscles, may have pissed off the pudendal nerve. I’ve seen some relief from the combination of PT, meds, and lifestyle changes, but it’s been back and fourth. My symptoms currently are:

-Nerve pain in my penis (stabbing, sometimes constant. Not as bad as it was in the beginning).
-burning pain in penis when sitting, as well as a pressure/raw sensation.
-shocks of pain in my left and right glutes.
-pins and needles in my scrotum.
-2 instances of numbness with sitting.
-right foot buzzing (I’ve read that PN can cause this).
Sitting isn’t intolerable, and doesn’t always flare my symptoms.

I have an appointment with Dr. Conway in September to discuss my progress so far. So my question to anyone who has had surgery is: when should I ultimately consider it? I know this isn’t an easy question to answer, as surgery results are mixed.

[Pain_Darren]

Yes deffently consider it.
My specialist told me that most of us have a ligament predisposition for it and my 3t MRI proved that to be the case
PT never worked for me

[April]

Hi Jwisdom,

I think the surgeons want to establish that less invasive treatments didn't work and that you do have an entrapment. The first issue is established over time as you try other options (e.g., pt, lifestyle changes). The second one is established by reviewing your symptoms and history. If your symptoms match pn, a nerve block reduced the pain, that suggests it's the pudendal nerve. Establishing it's entrapped is harder, but having it one side and having an event or series of events that could have caused it is suggestive of it. You can also get an MRI that is designed to detect it (although it doesn't always). The protocol for it was established by a radiologist Hollis Potter. If you contact her office (in NY), they will likely send you the protocol for it that you can give to the clinic doing your mri. But there are so many cases that aren't detected with an MRI that some doctors don't bother with this during the diagnosis process. But, it may be good idea to get an mri anyway just to be sure there isn't something else going on.

Good luck with your appointment!

April

[Violet M]

So my question to anyone who has had surgery is: when should I ultimately consider it? I know this isn’t an easy question to answer, as surgery results are mixed.

Hi J,

That's the hardest question to answer around here because it is such an individual decision. The way I see it, if your quality of life is so bad that you are willing to take the slight risk of possibly getting worse, that's when I think surgery is something to consider -- but only if all of your symptoms, history, clinical exams, and response to nerve blocks are all pointing toward a likely entrapment. If an MRI shows an entrapment, that is an additional consideration, but like April said, MRI's aren't totally accurate in making the diagnosis. You can look at the Nantes criteria for deciding if you have an entrapment but personally, I did not match the criteria exactly and I ended up having an entrapment.
https://www.pudendalhope.info/wp-conten ... iteria.pdf
Even if your symptoms aren't severe, if it's extremely likely that you have an entrapment, it might be worth it to risk the surgery to prevent further nerve damage. It would depend on what the doctors recommend.
Wishing you all the best as you make this decision.

Violet

[optimus]

Hi everyone,
I’m relatively new to this condition. Everything started in May this year with tingling in the scrotum that soon turned into terrible penis pain that seemingly came out of nowhere. I immediately assumed it was linked to one of my existing conditions (herniated discs in the thoracic spine putting pressure on the spinal cord), but my doctors don’t believe the two problems are related, so we’ve ruled that out.

In my search for answers, I stumbled across pelvic rehabilitation medicine, where I received a pudendal nerve block that reduced my symptoms enough to provide a diagnosis of PN. I began PFPT soon afterwards, and have done 6 sessions so far in the span of one month (July 20th- present). My PT believes that my PN may be caused by a number of factors during the time that it started, as well as years of specific lifestyle choices, such as sitting for prolonged periods. During April and May, I was extremely depressed about the pain that my herniations cause, and was doing a lot of hiking to clear my mind and just escape from thoughts. I was also in the midst of losing weight, but and ended up losing a significant amount during April, 20 lbs in one month. My PT believes that my lifestyle of prolonged sitting, in combination with deconditioned and possibly atrophied muscles, may have pissed off the pudendal nerve. I’ve seen some relief from the combination of PT, meds, and lifestyle changes, but it’s been back and fourth. My symptoms currently are:

-Nerve pain in my penis (stabbing, sometimes constant. Not as bad as it was in the beginning).
-burning pain in penis when sitting, as well as a pressure/raw sensation.
-shocks of pain in my left and right glutes.
-pins and needles in my scrotum.
-2 instances of numbness with sitting.
-right foot buzzing (I’ve read that PN can cause this).
Sitting isn’t intolerable, and doesn’t always flare my symptoms.

I have an appointment with Dr. Conway in September to discuss my progress so far. So my question to anyone who has had surgery is: when should I ultimately consider it? I know this isn’t an easy question to answer, as surgery results are mixed.

I have exactly the same symptoms plus my thoracic spine too has significant disc bulge