Health Organization for Pudendal Education

Hi, I used to come to this forum years ago when I was in tons of pain. Anyways, I thought it would be helpful to let some of you my PN journey and how I got rid of It. It started when I was 18 and I thought my life was over. I went on and ended having 7 pudendal nerve blocks, 3genitofemoral, 4inferior hypogastric, 4illioinguinal, and 18 trigger point injections throughout the 6 years thinking magically it would just go away. I got a little better with injections but the unrelenting pain would just come back. I reached a deep depression with this happening. I kinda deleted those six years from my mind. Anyways, after years of injections and zero hope, the pain spread throughout my body. I went to Mayo clinic and was diagnosed with fibromyalgia. My pain originally started as intense clitoral pain (1st 3 years) then moved to rectal, vaginal, lower abdominal, thighs etc.. After all, I learned for myself that I had a full body, mostly pelvic floor clenching problem. I would tense my muscles 24/7 which caused pain, which caused anxiety, and more pain. After $26,000 in debt from injections at age 18 and learning that it was me just me clenching my pelvic floor then three years later surrounding muscles. I learned stress causes muscle tension and once you have the pain, the tension is hard to get rid of bc you think you just have pain from nerve damage or something pressing on the nerve. In the end it was so simple ...I did physical therapy and worked on relaxing my body which takes a lot of practice. I still tend to clench but can correct it easily. I hope this helps people!! I never knew I was tensing my muscles until I was able to relax I just the the pain was just the pain stemming from the nerve. After six years of tears and pain all I had was tears of joy on my wedding day! If anyone has questions please feel free to ask me. I would love to help! I know how bad the burning, stabbing, Arousal, irritating, and how never ending this pain can be. I feel like this could be this case for so many people!

always pleasure to read some optimistic lines...
it is giving us hope that there is a space for improvement in every case.
Now struggling with some flare-up, but sticking to PT firmly because it has generated some benefit for me in the past.

Glad to hear you found the answer for you. I agree that it is always wise to start with PT first and then if that doesn't work you may have to try other things. In my case, PT made me worse so I made the decision to move on to nerve blocks and finally surgery but it's nice to hear when PT works for someone and they can avoid some of the other more invasive treatments.

Violet

Can you share some of the methods you used to help yourself relax your muscles?

Did you ever have a diagnosis of Pudendal neuropathy?

Glad to hear you are feeling so much better!

kone

Hi! Yes I was diagnosed with pudendal neuralgia and " nerve entrapment". The whole thing was a learning experience for me. Chronic pain was something I needed to learn about for myself. Once you are told you have nerve entrapment and nothing and is helping the tension only gets worse adding to the chronic pain cycle. Yes, my chronic started from getting kicked in soccer but nothing that should have led it to continue for six years. So my wedding was coming and my PN doctor was no longer in practice. I was devastated. I did not want to continue a life with pain. So, I got worse and got pain throughout my entire body from so much stress (muscle tension). It took me getting to my worst point to finally understand why I had pelvic pain for years. It was the fear. The fear of having pain causes muscle tension. It's a viscous cycle. http://allthingswildlyconsidered.blogsp ... m=1...this website explains the cycle. So, I was so convinced to get better for my wedding. I did physical therapy and she taught me how to relax my pelvic floor muscles. It helped a little slowly and slowly. Then I went to a therapists and she taught me about the mind and body connection. My muscle tension became a habit an it was something I needed to break the cycle of. I still tend to do it when I get stressed but now I can say to myself I am causing my pain and stop clenching. But, i also clench when not stressed! It was a habit that was hard to break and it doesnt help im a extremely anxious person.Everyone who has chronic pain is clenching there muscles at the moment ..its part of the flight or fight mechanism whether you realize your doing it or not. When I was in pain all I could do was think about it research it. I came across things like PN never going away and it was set in my mind that I had it forever. The hopelessness was awful. I cried and cried. All I could think about was dying. All life pleasures went away. Now I do meditation 2 times a day to help relax my muscles and it helps a lot! It's takes a lot a lot of practice and reassurance. Then I was doing all things I thought was causing pain like exercising and running and now trying to conceive.. which was never even a thought with all the pain I had! Hope this helps some people!!! If I read this when I was in pain years I would have said to myself yea right this could never be me but it can!! I even considered surgery ...and what a waste that would be! Sorry I feel like I sound like a how to get rid of pain salesperson. All I can say is be hopeful and just try what I'm telling you! xo

it makes sense, until I got the diagnosis of "vulvodynia" and "it's not curable", I was feeling decent, with vulvar unilateral pain. Now my entire pelvic floor plus back hurts, I also have TMJ.
The panic attacks, lack of food and sleep plus stress caused my PN to flare up

Can you describe how you meditate?

That's really encouraging! Yes, do share how you let go of the stress.

Wow. What an experience you've had. Can I ask what helped you in physical therapy, Westtown12? I have stabbing nerve pain on mostly the outside of my vulva and mons pubis continuously for 3 years now. I also have stabbing clitoral pain at times. You mentioned that even though you were diagnosed with pudendal entrapment, you didn't need surgery to get better? I think I really hurt some nerves there, but I am a clencher too. Any really good PT exercises you can tell me about would be so appreciated. Also, any main things you did that helped, I'd also love to know about. Thank you.

Jeanne