Health Organization for Pudendal Education

Hello,

I have suffered from left only sided PN for the last 11 years. It is not completely debilitating but needs careful management at all times. As long as I sit on a hard surface (not for too long), don't wear underwear, trousers etc, don't drive for too long, don't have sex (unless I want a mini flare) then my pain levels are moderate to low. I take Lyrica and Co-Dydramol to help me cope but the side-effects can get me down too. Occasionally I have pain flares that can last months, weeks or days but the pain usually settles. In some senses I count myself to be quite lucky.

A few years ago I had several nerve blocks here in the UK. These did nothing to the pain levels but appeared to diagnose PNE.

Recently I went to see a new pain management specialist expecting her to tweak my drug regime in order to improve things if possible. Instead she was surprised to hear I had not sought intervention and encouraged me to consider neurostimulation as that is the most researched treatment in the UK. She questioned (in a very nice way!) whether I really wanted to live my life as a compromise dependent on Lyrica for the next 40 years which of course I don't but I thought I had no choice.

I have read that surgery is probably the first choice before neurostimulation but am I a candidate for either? Do I suffer ENOUGH? It seems to me that those who go down these routes are in a great deal of pain and perhaps I should be grateful for what I have rather than looking to improve things. I would actually be open to either surgery or neurostimulation if I didn't feel somewhat unworthy!

So, I could do nothing, I could try the neurostimulation in the UK or seek out surgery in France. I'm at a bit of a crossroads, any thoughts out there?

Thanks for reading.

Hello Holly,

If you are comfortable in your life with relatively low/manageable pain that is not worsening, I don't know why you would opt for invasive procedures. Hopefully in the next few years new treatments will become available, including stem cell therapy, which may help reduce pain without the risk of current interventions.

Sincerely,
Stephanies

I agree with Stephanie. There are always risks involved with invasive procedures and if your pain levels are manageable you just have to ask yourself it it's worth the risk of possibly getting worse. Maybe there are some less invasive things you could try that would be helpful.

Violet

Everything I have tried made things worse or did not do anything positive.
The neurostimulation has a lot of risks. I have not tried that.
One side I had 2 surgeries on and the other side I have done nothing.


I would hold off doing anything drastic.

Thanks everybody. I have been thinking hard about it over the last few days and read up more fully on the neurostimulation. I agree, it sounds far more complex than was made clear in the appointment I had last week. I would hate to swap my situation now for something even more unmanageable.

I do think I am fortunate to be in my current position. Long may it last...

I also hope there will be new treatments in years to come. Currently the options are fraught.

Thanks for your replies.

Hi Holly,
I was in a somewhat similar situation as you. Having gone the gamut of conservative treatment for 2.5 years with little benefit, surgery was the next option. For me it was a life changer, so I tend to be pro-surgery (with the right PNE vs PN indicators present).

IMHO the more you meet the Nantes Criteria, the better your chances for a positive outcome.

In my case, indicators were:
-clinical: long distance bicyclist, one-sided neuropathic pain
-PT: ruled out muscle as cause
-Blocks: all positive for PN
-MRI (Dr. Potter): strong positive PNE with scarred and deformed STL

Surgery confirmed PNE by STL.

I tolerated surgery well and had immediate benefit from deep burning. Note that just about all surgery patients report significant flares somewhere between 3-9 months post op.

Get the advice from experts, but make your own decision.
Best,
Bob

Thanks, RJR, for your honesty here. I think you are absolutely right that being as sure as possible that you are entrapped is vital. I really don't know if I have PNE, I have simply been told I meet the Nantes criteria and the nerve blocks I have had have indicated entrapment. The more I read the more I think that is still pretty vague! You did your research and reaped the reward. That's really good to see.

I didn't know an MRI could tell you very much. I had one many years ago and it didn't seem to help supply any information. Perhaps I need to think again about repeating it.

I do hope once I get to see the doctors in London again there will be some suggestions other than surgery or neurostimulation. i think I need to explore my condition further at this stage.

Really appreciate your support.

Holly

Holly,
If you would like to pursue an MRI to further tease out a possible diagnosis for PNE, I think it matters a great deal on seeing a doc who has experience. Am in the U.S., so my experience is limited, but have seen 2 that impressed me. Dr Hollis Potter at HSS in NYC (lots of press in this forum), and more recently Dr. Jan Fritz at John Hopkins in Baltimore. Dr. Fritz is also an interventional radiologist so it is a two-for-one with him...he trained under Dr Potter, knows the Pudendal nerve as well as anyone, and uses MRI guidance for whisker-close delivery to the suspect nerve regions. He is also a very nice man.

Both Potter and Fritz use 3T MRIs and special software to better visualize the small nerve bundle.

As you know already, an MRI is only more data and is not conclusive in and of itself. But the 4 pre and post-op MRI's I've had at HSS and Hopkins were done by PN experts and the reports read like roadmaps and are very specific.
Best,
Bob

RJR,

How did you get your MRI at JH read by Dr. Fritz? Did you see a him or another doctor at JH for evaluation and get the MRI prescription from him or did you go through your local doctor and take that prescription to Hopkins? I am post-op 8 years with a pain relapse and I got no useful information from The MRI I had with Dr. Hibner over a year ago. At that time, my pain had only been back about 5 months but now it has been over 18 months and I am thinking about trying another MRI to try to find out more about possible factors that may be contributing to my current pain levels.

Thanks for info,

Stephanie's

Stephanie's,
Dr. Fritz does both in one session - it is an iterative process where he first does an MRI of the region to plan/map where to precisely put the steroid injection(s). Then he puts numbing medicine in the dermal region where he inserts the needle. Next is a series of sliding the patient in an out of the tube while scanning and adjusting the needle tip position to the desired location for long term acting steroid delivery. The procedure takes about 1.5 - 2 hours. Plan on spending half a day at the hospital with the check in and post-procedure/resting. Dr. Fritz will discuss the results with you after the procedure.

He offers two options to reduce the pain of the needles: nothing or some level of putting you under (not out). I chose the former and found the procedure to be uncomfortable and not painful.

Counting all my pre and post op blocks...Houston (2 - ct scan guided), Phoenix (3 - ct scan and sonogram guided), and Baltimore (2 - MRI guided). IMHO Dr. Fritz is superior by a mile because: he knows the Pudendal region well having trained under Dr. Potter, MRI guidance is most accurate and gives best chance of the long acting steroid to do its thing, and he also provides you a face-to-face discussion on what he sees via MRI regarding the condition of the nerve (and cause of pain). Success potential for the steroid is all about precision of delivery. In my case he put in 2 needles, targeting 2 separate areas along the nerve. He visualizes post injection to confirm exact placement of the steroid. You then remain laying on your stomach for an hour to let the steroid absorb – another difference from other providers.

It has been almost 5 years since my surgery. The deep burning pre-op pain has been gone since then, and in fact was gone on day-1 post op when I first got out of the hospital bed. PNE does exist!...as evidenced by my surgery video and by the immediate elimination of deep burning pain - cause and effect. Pre-and post op MRIs confirmed this as well.

Since surgery I’ve been able to sit 10+ hours/day on a special U shaped pad (vs 0.5 hour/day pre-op). As I've noted in my annual reports on this forum (Case Updates), I've had “surface” discomfort since surgery...and so I've continued to pursue its cause and resolution. On 1 April I had a stat increase in the surface pain (a first in 5 years), much like your situation. I reached out to my neurologist at Johns Hopkins, and he did the referral to Dr. Fritz. I’ve had 2 sessions with Dr. Fritz, spaced 6 weeks apart, the first being 30 April. Five days after the 1st injection, I experienced a great reduction in the pain and that trend has continued. The second injection on 17 June built on the success of the first, and I consider my pain back to where it was earlier this year, which is very manageable. None of the previous blocks had an impact on pain, hence my belief that precision counts. Dr. Fritz also uses a new class of steroid. He will be the first to say that the medical jury is still out with regard to overall the efficacy of steroids, but in my case I experienced great benefit. Due to Dr. Fritz’ read of the MRI, I now clearly know the cause of my residual post op pain and have a plan. I should also note that steroids would not have helped me pre-op as the PNE caused by my right scarred/deformed STL was severe.

I remain grateful for the medical I've received: life changing surgery performed by Dr. Hibner/Castellanos, and expert intervention/evaluation by Dr. Fritz.

I hope this helps...