This condition is so confusing please advise

[Laura]

Ever since I developed this horrible condition I have tried to educate myself through this website. It seems that from everything I've read that with pne you get progressively worse. I have also read with pn (without entrapment) you have a chance of getting better through lifestyle changes and
other conservative measures. I have been hoping that I only have pn because mild pain and slow improvement due to lifestyle changes and conservative treatments.
Now I've read what Shawn Melliss(happy for Shawn) had to say about his success with lifestyle changes and has had great improvement even though he is entrapped. I don't know what to think and I'm worried if I'm entrapped too.

[calluna]

I think that all that any of us can do is to go with what helps. There is no way that we can really know for certain whether or not the nerve is physically entrapped until a surgeon actually looks, so there is not a lot of point worrying about it.

[Violet M]

Laura, there are people who can live with a low level of PN pain indefinitely as long as they are careful. The pain and severity does not progress for everyone.

Unless you can see a definite entrapment on an MRI or MRN prior to surgery, there's no way to know for sure if you have an entrapment so I think it makes sense to try lifestyle changes and conservative therapies before rushing into surgery. The key is you have to really change your lifestyle because if you continue to exercise, sit, etc. and you have an entrapment, you could permanently damage the nerve.

Violet

[Karyn]

Hi Laura,
Yes, you're right! This condition is very confusing!
However ....

Now I've read what Shawn Melliss(happy for Shawn) had to say about his success with lifestyle changes and has had great improvement even though he is entrapped.

http://www.pudendalhope.info/forum/view ... 063#p18063
I hope this clears up at least some confusion!

[Violet M]

Right, Karyn. Shawn's report is not that of a typical PNE entrapment which may explain why he was able to improve just with lifestyle changes.

[pomegranate]

Laura, there are people who can live with a low level of PN pain indefinitely as long as they are careful. The pain and severity does not progress for everyone.

Unless you can see a definite entrapment on an MRI or MRN prior to surgery, there's no way to know for sure if you have an entrapment so I think it makes sense to try lifestyle changes and conservative therapies before rushing into surgery. The key is you have to really change your lifestyle because if you continue to exercise, sit, etc. and you have an entrapment, you could permanently damage the nerve.

Violet

Hi Laura,

I've lived with a low level of pain for about 18 months. There are more like me, but not a lot of us post on the sites. We've figured out how to manage our specific pain level, and I'm not necessarily looking for answers anymore. I have what works for me currently, and I've discovered some other conditions needing medical care along my PN journey. I never got a Potter MRI, but I'm glad. My pain levels are low enough I don't need to know if I'm entrapped, although I highly doubt I am at this point. I think I have just more true pudendal neuralgia from other causes.

I don't have super strict lifestyle modifications anymore, but I did for awhile. I still avoid sitting, don't take long car trips, am limited in exercise and intercourse, and other similar things.

I had a really bad time of pain late 2009-early 2010, and I didn't believe I would ever get better without invasive measures. Thankfully, I found some more conservative approaches that work for me. We'll see what the future holds.

Lauren

[jacko]

Hi Laura,

I I've had problems for just over 3 years. I have never been diagnosed because where I live there are no pn/pne doctors. I have full adapted my lifestyle completely with only only sitting for max 10-15 mins in the car. I would say that the last year has been slightly improved on the previous ones with less major flare ups and quicker recovery after a flare up. I have been doing some stretches each day for the last year these are mainly priformis strecthes and I think that thas helped. I will say that if I attempt to any normal activities such as walking up even the slightest of inclines or lift anything Im in for a bad time will probaly be in bed for a week but if Im sensible I can remain with only low level pain. So it dosent mean you will definalety get worse.

I wish you luck and if you have any questions just ask,

Jacko

[shawnmellis]

Hi Laura, I guess nobody knows for sure if we are entrapped until surgery, but my own guess is that if we have had this for over 1 year, then we have a more likelihood of being entrapped. Even though I did post that I am now off prescription pain meds, and that making lifestyle changes over time has eventually helped to some degree, I am not cured. I will likely need surgery soon, but need to make sure about choosing the right surgeon for me. Since I posted the last post, I did get another small flare likely due to not adhering to my strict lifestyle change plan, but still not sure what exact thing caused the flare. You are right that this is confusing The major part of my success story that I wanted to say was that I had gotten off of Tramadol for pain after over 1 year, and that my pain had improved although I still have pain. Every day, and every week is different it seems as far as my pain level, but overall it has gone done some. I still take Ibuprofen or Tylenol for pain when I have it, and I still have urinary frequency/urgency problems at times during flares. I think that if somebody like me is truly entrapped that only time and the right lifestyle changes, or surgery will be able to tell how much improvement you see. I wanted to just let you and everyone know that although I am off prescription pain meds now, I am not totally cured now and therefore think I am still entrapped. I also wanted everyone to know that I had improvement in the area of pain medication. Still not totally cured though, and still fighting PNE! The Laproscopic surgery approach done by this surgeon in Turkey seems promising, as does Dr. Hal Martin in Oklahoma. Still too early to say for sure, but anytime I hear of another PNE surgeon joining the mix the happier I am, because there needs to be more surgeons, and there needs to be more surgeons who can decompress all areas of the nerve, including Perineal and Dorsal.
Shawn