Update

[Barre]

Hello,

An update after suffering with symptoms for 10 months,

Current symptoms are allodyniai n th groin/perineal/anal area, burning and pain in perineum and general perineal after sitting for longer than 15 minutes on soft chairs. Luckily not much functional problems, except for weaker and less intense orgasms.

Here is a compilation of what I tried so far,

-months of PT, pelvic floor therapy and now an osteopath with minor to moderate results.

-many visits to doctors and urologists, including doctor Bollens (he did not examine me but diagnosed me with a pudendal nerve problem based on my symptoms, history and duration)

-Three successive nerve blocks with steroids , after the second nerve block I was as good as cured for about two months but symptoms, burning perineum, slowly crept back in, and now a big flare after the third , hopefully temporary.

Doctors, includin Bollens gave contradictory advice so I don't know what to do anymore.

Symptoms are mostly mild but very annoying, I work as a painter on commission for hobby and my job also involves sitting , I would rate my pain and discomfort from everything in between a 0 and a 6 .

I have seen some improvement in some areas and worsening in other areas, driving is still uncomfortable alot of times but manageable, compared to how it was I couldn't even drive for 5 minutes without increasing pain.

Sitting for painting I use cushions with variable results.

I'm now considering surgery, Bollens said that in 80 % of cases this will be as good as a cure.

My uro said that the laparoscopic approach is minimally invasive. He said that I should not wait to have surgery, he said that months ago so now I'm worried that if I wait longer recovery won't be optimal.

Any advice on what I can or should do next?

Thanks !

[Violet M]

Hi Barre,

It's such a tough decision to make whether to go for surgery or not. Did Dr. Bollens discuss any likely risks with you, including the risk of not doing any5thing?

Some of the criteria I considered when I made the decision was whether or not the pain was severe enough and my quality of life was already so bad that it was worth taking the small risk of getting worse. But you also have to weigh the risk of whether not doing anything could make you worse. What I did was make a list of the pros and cons side by side on paper and it sort of helped me determine what made the most sense whether the cons or the pros seemed to have a stronger argument.

The other criteria I really considered was whether or not I actually had an entrapment and that can be difficult to determine and you can't know with 100% accuracy before surgery. But many of your symptoms are pointing towards meeting the Nantes criteria for a likely entrapment. I'm trying to remember which doctor gave you the opposite advice. Was it a pudendal neuralgia specialist?

Violet

[Barre]

Thanks for the reply Violet,

Yes doctor Bollens was very kind and took his time answering my questions including the risks, but they are very low in his experienced opinion but off course it's still surgery and never completely risk free.

Off course the risk of not doing anything is very real as well, prognosis is unclear but if I wait too long damage can become more permanent and/or worsening of symptoms.

We discussed how he could be sure the nerve was entrapped he said that the fact my nerve was irritated for so long without real improvement was evidence something was compressing it

It's a difficult decision for sure, if I was100 % sure it was this nerve and it was entrapped I would have the surgery done tomorrow,

The nerve blocks seem to help a lot but it seems temporary unfortunately, still have some pain/discomfort but very minor and very manageable, no burning in perineum. But these blocks just mask the symptoms and Isa bad long term strategy according to Bollens as they don't do anything to address the root cause.

Without the blocks my quality of life is greatly reduced, I can't even enjoy family diner time for example with the kids because of the pain/discomfort, same for hobbies.

So yes, I think surgery is indeed the best long term strategy, I have another appointment with Bollens the 15th of January to discuss moving forward with what has to be done.

[Violet M]

The problem with too many nerve blocks is that they can damage the nerve even more, so I agree, it is not a good long-term strategy. Since the nerve blocks help temporarily, that is one of the signs that it is likely the pudendal nerve, but like you say, nothing is 100%.

Violet

[Barre]

Laparoscopic surgery with Dr. Bollens is planned on the 17th of April.

But to be honest, i'm still not sure if this will actually fix the problem.

I have maybe five different diagnosis ranging from a lower back issue (MRI showed disc bulging and spinal stenosis) but according to the doctors this is a pretty standard result for my age (47) and should not give this issues, but my osteopath still thinks it comes from my lower back to tendinitis.

Dr. Bollens is convinced it's the pudendal nerve, because of history and "positive" reaction to nerve block.

PT thinks it's my hip because I have radiating hip, groin and hamstring pain and at times pretty bad sciatic like pain (much worse than the pudendal pain) , PT also confirmed piriformis issues, basically my whole left buttock side is one big mess.

This is an impossible decision to make but I just hope to get rid of this and Bollens seemed pretty confident that I would make a good recovery.

Ah well .....

[benraycamp0]

Can you get a spine neurosurgeon’s opinion? Honestly Bollens isn’t a good diagnostician so I wouldn’t put any weight to his opinion. He just operates pretty much anyone with PN-like symptoms, no matter the cause

I’m just nervous when someone has hip/back issues and PN symptoms and they are pursuing PN decompression. When someone has 0 back/hip issues then the PN diagnosis is easier.

Any other evidence you have that this is definitely an issue with the isolated pudendal nerve and not some other issue going on?

[Barre]

I already went to a neurologist a year ago after they took the scans and he did an EMG test of the sciatic nerve and back and results where fine, so he concluded it was not from my back.

Bollens said pseudo sciatica is pretty common with PN though because the piriformis muscle gets tight and compresses the sciatic nerve resulting in incredible pain. Never had problems before. He sees it amor with his patients and he operated about 500 people, including his own wife, with PN symptoms so he does not lack in experience regarding the symptoms.

But eight years ago I was diagnosed with chronic prostatitis and according to Bollens this diagnosis is just an umbrella term for when they don't know what caused the pelvic pain, and that this is the pudendal nerve.

I guess Bollens, and my own urologist too, say that the surgery itself is quick and minimally invasive with a very low risk profile, complications are usually with older people. So they can try and see if it resolves the symptoms, he seemed confident that I will completely forget that I even had pain in a few months because my symptoms are still on the milder side. Risk of not doing anything is that the pain will get worse and functional problems will become problematic.

When I asked Bollens about some of the mixed reviews I read online about the procedure he laughed and said, that's the internet for you, if you ask a patient one month after surgery about his experience you will get a completely different answer than when you ask that same patient the same question after 6 months.

[Violet M]

Bollens said pseudo sciatica is pretty common with PN though because the piriformis muscle gets tight and compresses the sciatic nerve resulting in incredible pain.

I developed piriformis syndrome along with PN. A good PT should be able to tell you if your piriformis muscle is involved.

Violet

[cwb125]

Bollens said pseudo sciatica is pretty common with PN though because the piriformis muscle gets tight and compresses the sciatic nerve resulting in incredible pain.

I developed piriformis syndrome along with PN. A good PT should be able to tell you if your piriformis muscle is involved.

Violet

You mean a pelvic floor physical therapist?

[April]

Hi cwb,

Yes, that is what Violet means. I think they are also sometimes called physiotherapists.

April