Pudendal Neuralgia... the road less traveled

[BurningBlues]

I keep hearing how this problem is "rare", so I'm interested in connecting with those who have taken this unfortunate path in life. It is disabling at times... sitting should not be painful. Traveling anywhere should not be painful. But it is. I am just now starting to try to find relief but when the first attempt fails, it gets discouraging from the get-go. Anyone actually found relief longer than just a few weeks at a time? It was disappointing to find that my own GYN was hesitant to even help with this matter and immediately refered me to a specialist. That makes a long waiting time with no pain relief in sight. sigh.

[pizon]

hello…I personally do not think this horrid condition is rare..i belive many many of us have been and still are being misdiagnosed..I was not given a correct diagnosis for almost 2 years..if you can find a pelvic pain specialist that is were you need to start..here in the states the dr.’s are great for passing you on to yet another dr…and if there isn’t a pill to help then you are pretty much on your own…read the book by Amy Stien “Healing Pelvic Pain” and the dvd by Dustine Miller “Your Pace Yoga” these are the only things that have helped me…I also work with an herbalist…I worked with many medical dr.’s and most had no clue what was wrong with me I also take valerian root and hops this is a nerve tonic..I did a lot of research on my own..this web site has been a God send..I hope this can help…I am not able to do all I use to..but after I stoped going to the medical dr.’s I am able to live life again ..I can now sit for 2 hours and garden …I am no medical profession however this is my personal story…I hope this is helpful…the take away here is to do your own research start by reading …take care

[Ehm63]

I see a pelvic floor specialist now and received my first nerve block 3 weeks ago. Although I still have discomfort, it was relieved somewhat by the block. I also think I have other things at play like vaginal dryness which I’m working on. Basically we had to tell the specialist what I thought it was because she was treating me for muscle issues. I suggest you get a foam cushion such as a kabooti on Amazon, it will help. Also avoid anything that will flare you up. Stay away from any tight fitting pants, I live in sweats and flowey pants. I would look into a nerve block once you see the specialist. Also walking and swimming have done wonders for my mental health and it makes me feel a lot better physically. You may also want to do breathing exercises and meditation. I am going to physical therapy and will be getting a temms machine to help with pain. Hope this helps you. I also have a very supportive husband who goes to all my appointments with me. Good luck and realize this is a long process, but there are things out there that will help. I’m still in the process and trying different approaches to this. Good luck!

[RafaelGD]

If you have done all the medical testing, mri's, blood tests and everything that has to do with that particular area and the doctors have cleared you then give a try for the mindbody route. Read Howard Schubiner's book Unlearn your pain, read about TMS and follow this route. You don't have anything to lose. A lot of people write on these types of forums about this particular condition. PT, nerve blocks and other stuff and very few find consistent relief or cure from that. It makes more sense if you are prone as a person to these types of mindbody afflictions. And don't think that I am telling you that your pain is in your head. I am in pain for more than 10 years and I have found relief only by changing my mindset about pain. Look up on YouTube Lorimer Moseley, a pain scientist. Once you shift your thinking and don't look at this like a constant threat you will see results. Especially if you say that the pain is not constant. Just think about it. Why does it comes and goes? How come this pain is in a very sensible area of our bodies? Dr. Schubiner says that 90% of pudendal pain is not structural and it's more of a psychosomatic type of pain. But you have to do your own research. Give it a try. I honestly stopped reading forums like this one. They can be great for some people because they don't feel that alone in their suffering but they can also be a powerful nocebo. I only replied because I saw it in my email. Do your own research and don't be ashamed about the mindbody approach. Many people dismiss it as nonsese but once you figure out that connection, you're on the road to recovery. I wish you an easy recovery and good health from now on.

[BurningBlues in reply to RafaelGD]

Thanks. Will give it a try. They found nerve damaged tissue so I was assuming it was physiological, not psychological.

[RafaelGD in reply to BurningBlues]

That is a very important point to start on. Rule out or in the physical aspect. Where do they find that damaged tissue? On the mri? Have they explained to you why or have they given you a clear reason?

[SouthernSally in reply to BurningBlues]

It could be both. At the very least the mind body practice can be very calming. Dr Schubiner is the real deal. He is a very well respected MD. He frequently gives interviews you can find on podcasts and YT.

[Puzzlelover54]

Yes, I have PN and have had it for over 23 years. I agree that it is not as "rare" as some people believe. If you use Facebook - there are a TON of great PN and Pelvic Pain Support Groups on that platform. I would recommend it. You MUST be your own advocate. What works for one PN sufferer might not work for you. You have to know your body and listen to it. Know how certain activities effect your PN and what helps it to feel better. I take Lyrica every day. I get a lot of rest, (as a result of my PN, I had to stop working full-time in 2013. I now collect Social Security Disability and work just one day a week.) I lie down with ice a lot or a heating pad. And when I have to sit, I use special cushions. I also use an OTC Neuropathy Oil that I put on my abdomen just about every day - it helps to take (along with the Lyrica) the edge off of the burning pain. I have also written a book - my memoir, about my decades long struggle with PN and the time that I spent in the Catholic Convent. It is entitled, "Behind the Tapestry: My Discovery of God's Grace Amidst Chronic Pain and Loss." It is the compelling, true story told from behind Convent walls of all that I experienced in order to "make peace" with a mysterious chronic illness (my PN which causes widespread, intractable chronic pain) and the loss of my religious vocation. It is available on Amazon, if you'd like to check it out. No pressure! Just thought I'd put it out there. You'll be in my prayers. Take care!