Please help me, this is so hard!

[awiddoes]

I have been struggling for almost 3 years now to figure out what is wrong. I finally found some piece of mind when it was strongly believed that I have pudendal neuralgia. The pain management Dr. who performed the block put me under general anesthesia for both times and I was out like a light for both blocks. The first block was for the piriformis and when I came to, I had no relief. The second block was the pudendal nerve block and when I woke up, for the first time I didn't feel anything. I cried from relief. Then I was sent to a dr. who specializes with pudendal neuralgia. He believed I had it due to my symptoms and the successful block. He ordered another pudendal block, performed by a different dr than the first, and I had no relief. I was not put under general anesthesia for that one. I am now discouraged again that this may not be pudendal neuralgia and that the relief I had from the first pudendal nerve block was only from the general anesthesia. Although I was put under general anesthesia for the piriformis block and when I awoke I had no relief, meaning not even from general anesthesia. I am very confused now and discouraged again. I could really use your thoughts and advice. Please help me, it's so hard by myself.
-Amy

[janetm2]

Welcome Amy,
I am so sorry to hear you are now confused instead of more clear on a diagnosis. What are your symptoms, there is a list off the homepage and the FAQs have a great deal of info. Was your second PN block guided? I had unguided first and did not get full relief, they need to get the right spot so your second just might have missed the mark? Have you seen a PN aware PT? There is a list off the homepage and they may be able to help, especially if you are not entrapped. Hang in there. We are here to help and talk to having been through the diagnosis phase and unfortunately knowing there is not as much help as we need but you mat finally be heading in the right direction, it just is a bit tricky to get all the info together. Are you in a lot of pain or is pain management helping you out? There is a list of medications in the faqs and the pain or PN dr should be at least easing some pain until you get treatment. Take Care,
Janet

[awiddoes]

Janet,
Thank you for your response. I pretty much have all the symptoms described. The tricky thing is it's not really pain but more like radiating burning/tingling. It can get unbearable and when I'm lucky it is pretty manageable. I've seen so many doctors. I just recently started physical therapy and they do know about pudendal neuralgia. One therapist went internally putting pressure around the pudendal nerve but I didn't feel pain from it. Does that mean it's not pudendal? I have so many symptoms that are exactly pudendal related. The PT's found spasms in my pelvic floor, I'm constantly clenching those muscles. But the relaxation techniques only work temporarily. When I resume daily activites I go right back to clenching. Therefor my PT thinks the clenching and spasms are from pudendal nerve issues rather than the other way around. I also think I have symptoms of pgad and that is so hard. I worry that is what all this is but hopefully those symptoms are just occurring because of the main problem.

[janetm2]

Amy, I am sure one of our experts will chime in but I believe pain is not always a symptom of PN. I only mentioned it because we try suggest people get meds to avoid getting stuck in a high pain cycle that could be hard to break. Not that it is worse than what you are goung through with the burnin, tingling and pgad! There is an older newsletter about pgad that you may want to read off the homepage. Also not sure which causes which with muscle spasms and PN but hopefully calming the spasms will help lower your symptoms. You may want to try to lower the daily activities , of course either way it may some time for PT treaments to take effect.
Janet

[Violet M]

Hi Amy,

There's a lot about pudendal neuralgia that can be confusing partly because there is not a %100 accurate diagnostic test. Nerve blocks are not 100% accurate. I had some that gave more relief than others so I wouldn't base your diagnosis entirely on the fact that you had one successful block and one not successful.

When you can't get a 100% certain diagnosis then really what you may have to fall back on is trying the different therapies available starting with the most conservative, least invasive, to see if they help and make sure to rule out other possible diagnoses like tarlov cysts that could be causing pgad. Do you have any idea what started this for you? History can be important too.

The PT's found spasms in my pelvic floor, I'm constantly clenching those muscles. But the relaxation techniques only work temporarily. When I resume daily activites I go right back to clenching. Therefor my PT thinks the clenching and spasms are from pudendal nerve issues rather than the other way around.

Just wondering how long you've been trying PT. It takes time to retrain the muscles but I'm guessing your PT has had experience with how soon it should be helping. The one difference I had was that myofascial release of the pelvic floor was very painful and caused severe flare-ups and I had severe pain on palpation at the ligamental grip and along the alcock's canal. If PT is helping temporarily it might be worth it to give it a little more time unless you've already been doing it a long time with no significant improvement.

Best,

Violet