Health Organization for Pudendal Education

Shana, glad to hear the hip injections helped. Is your other pain gone too or just your hip pain? Please take it easy and try not to over-do.

Violet

I wish I can say I'm feeling much better and all my pain is gone, but at this point I'm happy saying that my hips, yes only my hips, are pain free. In the last few weeks I started with new pain that I never experienced before, labia pain, butt pain, anal burning and sensations that there's something stuck in there and pain radiating from my thigh to my ankle in both legs but worse in the right leg, come to think of it my entire right side is worse than the left. It's def. nice that my hips aren't killing me, it's a nice relief, but these other pains are driving me crazy!

I did start taking tramadol to help with the pain last week, I can't tolerate anything stronger, I'm not going to say it works great but it def. takes the edge off. I got to continue to live my life so I can't afford to take something stronger that will make me into a zombie. I have a high pain tolerance and I'm going to use it to my advantage for now

Shana

shana wrote: anal burning and sensations that there's something stuck in there

Both symptoms could be attribute to the pudendal nerve, specifically the inferior rectal branch.

shana wrote:pain radiating from my thigh to my ankle in both legs but worse in the right leg

If this is at the back of the leg but off centre a bit to the outside of the leg it could be scaitic nerve related. I would get your physiotherapist to check the piriformis muscles as both nerves run near (sometimes through) this muscle which also has a close association with the hip.
Glad the hip pain is gone RESULT! but I would still pace things as well as possible and not over do it. I'm like you and do have a high pain tolerance (and I'm sometimes sick of being careful) but then it gets to a time when I just crash and can literally do no more, which is usually around dinner/tea time. This would be fine if I had a husband who could cook but his only skill in food provision is dialing a local takeaway.
Take care,
Helen

Just got home from my second pudendal nerve block with Dr. Chapman. I opted to go without anesthesia and I have no regrets. Yes it was very painful but the minute it took to place the needle before I would have been woken up in my mind makes no sense to have anesthesia and have extra drugs enter my body if going to be woken up for the most painful part, the nerve block. The whole procedure lasted less than 5 minutes as Dr. Chapman managed to find the nerve almost immediately.

Here's where it gets even better, we hit the right nerve! I'm totally numb right now, the vagina feels so weird as I've never experienced this feeling before, and peeing, that was the weirdest feeling of all! lol! I'm also having numbness in my left thigh and leg causing me to be very unsteady on my feet but I was told some people react that way and it will wear off in a couple hours so for now I'm staying in bed as I'm scared I'm gonna fall

My question though is, if I'm numb in the vaginal area, and I can't feel the vaginal pain right now does that mean the block was a success? Does it mean I have PN or PNE? Do I have to go through another block?
.
Shana

Yeah to hitting the right nerve! I can't even seem to get that completely accomplished. I would think that since your pain is gone, it is a good indicator of where you may be entrapped or the least, have nerve irritation. I am glad you were able to have the block done how you wanted and made it through. I am too chicken to go without anesthesia at this point, but probably should choose that route. Yes, the numbness does feel quite strange....I agree! Do you have a PN doctor in mind that you could see, to find out what your next step should be? Sounds like you are getting closer and closer to getting this worked out!

Thanks, Meliora I am happy we hit the right nerve and that it didn't take long. About anesthesia, since I tried both ways I can honestly say I do not understand the purpose of having anesthesia. I guess if someone is freeking out or something to that affect and they need it to calm down it makes sense. But I knew what to expect, I spoke to the PA and anesthesiology prior to making my decision and they both said it's just to make you comfortable but you do have to be up by the most painful part. In my mind a couple extra minutes of pain is not worth getting drugged up. Then Dr. Chapman comes in and says I hear you decided to go ahead with no anesthesia it's gonna be very painful, so yes, he freeked me out! Yes it was painful getting the needles in, because they have to go so deep, but the actual block was much much more painful. The first block I had overall was much more painful, even with anesthesia, as it took longer to find the nerve, this time he hit the nerve so fast the whole procedure took less than 5 minutes.

About a PN doctor, I think I'm going to start with Dr. Conway since he's the closest (a 5 hr drive instead of a plane ride) but I first want to take care of my hips. I wish there was a one stop fix all type of doctor so I can just take care of everything at once but I guess that's not realistic!

I'm wondering if I should maybe consider going to Dr. Marvel he's even closer (less than 3 hrs) and I have family that lives right nearby. It's so confusing all these doctors, I wish I knew who to chose but everybody has a difference of opinion.

What is any of these doctors going to tell me? So I had a successful nerve block, is there other forms of treatments that they are going to want to put me through or do they all recommend surgery? (I'm nowhere near ready to have surgery just yet)

Thanks again,
Shana

I think for some procedures the doctor needs a patient very still. I was told by Dr. Hiber's anesthesiologist that I needed to be under (not even just twilight) because any movement during the procedure could have caused the Dr. to puncture an artery. I agreed that a bleeding artery was not something I wanted to add to my misery for the day. I would think that most blocks could be given with or without anesthesia though. Your choice may have aided in the doctor finding the right area of your pain. In fact, when the radiologist at Hiber's do their blocks, I think you are awake for some of it to guide them. Dr. Hibner did my blocks via ultrasound, not the CT guided by a radiologist. I also had extensive botox placed in many areas. I know I must have because I had mild vaginal bleeding and a nice bruise afterwards.

Dr. Conway certainly seems like a very good physician. I would give him high ratings. I do not know much about Dr. Marvel, but I know people on the board have used him. He might be a good option for you as well.

I completely understand not being ready for surgery. I am only ready because I feel I do not have much left to try. I have done blocks, botox, vein embolization, PT and my last stop is surgery I feel. I am checking with a general surgeon this week (hernia/hip,) but after that...PN surgery is in my very near future. You have more you can try and surgery never has to be one of them.

I do not know what each PN doctor could offer you. Perhaps they could guide you in a plan and tell you more about your individual PN issues. I have only seen one true PN physician, Dr. Hibner and a couple PN aware doctors. Do you feel you have any muscular components to your pain (spasms for instance?) Are you are looking to try botox or want to try more blocks? I know Dr. Antolak says he has successfully treated some PN with his blocks.

Some people get results from PT alone. I would chose very carefully in regards to a PT, someone that really knows their stuff. Many PN doctors have a PT they work with that may be able to help you or refer you.

Shana, you can do a search in the upper right to see what patients have said about Dr. Marvel and Dr. Conway.

If sensation was gone in the perineum, lower third of the vagina and clitoral area, that means the pudendal nerve was successfully blocked. If your pain in those areas was relieved, that is diagnostic of pudendal neuralgia. Blocks are not typically considered 100% diagnostic but yours does sound like a successful pudendal nerve block.

Good luck with your future decisions.

Violet

Shana,
I can give you some input on Dr Marvel (FYI AlecLucy just posted a failure for her with Dr Marvel) as I had some success and am strarting to get more help from a pain center. As for what Dr Marvel would besides the block you had he may at a minimun as with me send you for an MRN but note this he said was to rule out other things(not sure what those are). Also he does not always go to surgery but in my case I was going downhill rapidly and not only quality of life but I saw myself losing my hob without surgeey. My paat history along with the successful PN block and chronic foot lowering my quality of life he said I was a candidate. He said he tries to lower your pain without surgery ( not sure how -meds or other treatments) andif he cannot give you decent quality of life he will then consider surgery. If you checkout the post I just did on AlecLucy's request on info for a Dr Gordon I posted my post surgery treatments at a new pain clinic that is helping me. I would be glad to talk with youif you would like - Please PM me a phone number or just ask for mine and you can call when it is best for you. I am working but am home usually by 4pm EST in Maryland unless a treatment delays me like acupuncture tomorrow. It is a ling a difficult journey but there is hope and at least some pain lowering and I have kept my job and hope to put in my last 3 years until retirement!!!! Janet

Thank you all for your support and input. I had a successful nerve block 2 1/2 days ago and I'm happy to report I have not felt vaginal or pelvic pain since then. Today I did have labia pain and itching. I continue to have anal pain and burning which was not impacted in any way with the block. Yesterday and today the injection site was very painful and I was having pain in my thighs as well as anal pain do I took 100mg Tramadol and lucky me I reacted badly and got the most horibl headache ever!!! (I do tend to react badly to rveryghing) I'm a bit frustrated as Tramadol is suppose to b the lighter narcotic and the over the counter meds do nothing. I would love to know whst else a doctor would suggest doing for PN besides pain meds as I really can't handle it.
I'm seeing a local doctor in 2 weeks he's a urogynecologist who supposedly knows PN. I'm hoping for either a diagnosis of PN or for him to tell me something else is wrong and I'd it is PN then I will decide who to treat with as I don't think he knows enough to treat PN. I am leaning towards Dr. Conway though I'm not sure if I should even start with him before I have my hips fixed.
Its never ending
Shana