Health Organization for Pudendal Education

I'm starting to see that the level of debilitation varies among individuals and over time. After 10 months of this PN trial, I cannot sit without ice, no matter the cushion. And I can last on ice for about 10 consecutive minutes. A total of 20 min/day. I can stand for about 20 minutes. I take meds, I've done therapy. No cause can be found for my pain, although the pudendal nerve has been convincingly identified as the culprit.

Is there hope for restored ability people like me? With no clear cause and sudden debilitation? I now think there may have been occasional symptoms over the years. But in any case, I'm wrecked now.

I'm starting to lose hope of recovery. My life is falling apart big time.

Grace, my understanding is that there can be more than one contributing factor to the development of pudendal neuralgia -- things such as aging with all of the musculoskeletal problems that can accompany the aging process as well as other factors such as a congenital musculoskeletal presdisposition, fibromyalgia, accumulation of injuries over time, a job that entails a lot of sitting, etc., etc..

For instance in my experience I can point to weightlifting but there are lots of people who weightlift who don't get PNE so I also have to blame other things such as my ligaments being hardened and sclerosed, the fact that some of my ancestors had PNE-type symptoms, and some other contributing factors. It wasn't just one thing. It was an accumulation of things. So the point of what I am saying is that just because you don't know an exact cause, you can still gather a lot of information from diagnostic tests and exams on what might be the culprit in causing your pain and what actions to take to try to bring it under control. When I had a pelvic exam by a pelvic floor PT and she pressed along the course of the pudendal nerves it was extremely painful. That told her (and me) a lot. When Bautrant did the same exam he when he pressed on those nerve he said "this is where your pain is, right?" and he was dead on.

So, there is a lot you can tell through diagnostics but it might be a matter of going to the experts who know how to diagnose. If you can't come up with an exact diagnosis even after seeing the experts then you are in a situation where you have to either decide to live with the pain or start trying different therapies to see what might work. Even though I wasn't 100% sure PNE surgery was going to help me, I decided I couldn't live the way I was and I went for it. Not saying surgery is the place to start -- just saying that most people, if they keep trying things, eventually find something that helps. It's not easy. It takes a fight and a will to succeed and keep fighting but I believe you have that in you. I don't see you giving up yet.

Violet

Well I am convinced that the pn pain will be with me forever. My question is about a nuerostimuulator. Do I need another emg ?How or will it help the burning rectal pain ?. I think it will help the sciatic which is with me always. Months on one side and months on the other.
I had a total knee replacement a month ago. Do I need to wait until that is totally healed?
I just feel like crying all of the time. I don't want to do this any more.
I am taking 6 10/325 norco a day along with 3000 mg nueroton.I start at 5 am and take my last dose at 1.pm. which lasts a couple of hours. So by 3 pm I am so miserable because I have taken my limit for the day. I don't want to have all of this pain or feel so sad . I try so hard to stay positive,it just gets too hard. Ellie

Dear Ellie,

I am so sorry nothing has worked for you so far. You have certainly been very proactive in trying to get well.

Dr. Peter's website mentions that people who meet certain criteria are more likely to have good results from a neurostimulator so I expect there are some guidelines but I don't know what they are.

Some people have posted that different types of compounded creams are helpful for rectal pain-- creams with drugs like ketamine, baclofen, and neurontin in them. I don't know if any of these would help at least temporarily until you try the neurostim -- might be worth a try.

Hugs,

Violet

I am unaware of Dr.Peters website. Would you help me with this please ? Thank you dear Violet.

Ellie, here is the link to it. http://www.beaumont.edu/destination-medicine-times-five
The gal who emailed me about this is doing very well after her procedure. She is not one of the 5 in the article.

Keep in mind that the type of neuromodulation he uses is directly to the pudendal nerve so this is a fairly new procedure.

The contact information is:
Kenneth M. Peters, MD
Beaumont Women's Urology Center
3601 West 13 Mile Rd
Royal Oak, MI 48073
Phone: 248-898-0898
http://womenshealth.beaumont.edu/womens-urology-center

If you decide to go the traditional neuromodulation route you might want to check with the medtronics rep on who are the most experienced docs for patients with PN.

You probably remember lottanerve from the forum also. Did you read her posts about her success with a pain pump? It's another option to consider.

Violet

Seriously. I don't know how I would maintain sanity without the Forum. Not that I'm 100% sure I am maintaining sanity, but...you know...

Thanks for feedback. I'm thinking of you, Ellie. Peace to you.

angel grace

My psychiatrist spoke with the pharmacist about the three compounds mentioned . They agreed that they would not give me relief. They want me to bring all medications with tomorrow ,my GP.Seems there will be a gathering of minds. All I want is to look forward to any part of the day that I do not have to deal with this constant pain.
I just read an article on web MD.about the pros and cons of oxycontin. They do not damage the stomach as nsaids do. I don't remember when taking oxycontin if it even cut the pain in half,did help more than the norco that i am taking now. I am at the point that I really don't give a darn. I really wanted to say damn,but thought better of it.
Violet ,I can not help thinking of how grateful you must feel for having the Dr.s know just where .to find your trapped pudendal nerve. Understandable why yours was such a success.I envy you. .

I too do not know the cause of my peudendal neuralgia. The effects if this condition have changed my life so radically.I have gone from being a homeschooling mom on the go to a somewhat disabled person.My family doctor has never treated anyone with pn before ,but bless her heart,she is doing her best.My pain was so bad that I could not function.Thankfully she put me on a fenalyn patch which has enabled me to function.Lyrica has made me very unsteady on my pins,gaining a tremendous amount of weight very quickly and lots of dizziness and nausea.We are looking for an alternative. Norytryptiline has helped with sleep.I am also working with a great physio but that will be a long road.I just don't think that at present there is a "cure" as such.It seems to be a case of becoming one's own advocate to try to get into the right doctors and trial and error with meds.How I wish there was a treatment proven to take the pain away but sadly, there is not.I think we have to dig deep to find the fortitude to deal with this condition.A pretty tall task but our only hope for happiness and being able to see beyond the pain.May God Bless each of us on this arduous journey.Warm Regards to All,Lise.

Lise, sorry to hear this has changed your life so drastically. I can understand because I was homeschooling also when PNE hit. I agree that cure is an elusive word although some people have said they feel they are cured. Many people get much better and move on with their lives. I do hope you find what works for you.

Best,

Violet