Health Organization for Pudendal Education

Hi Barb
I have pain in the perineum,only on the left side (operated side). I was totally numb until about 1 month ago and now I have one small area that is still numb but that is where the burning, stabbing pain is coming from. I don't have any pain in the gluteal fold. I did not have pain in my perineum pre op, only more foreign body type pain elsewhere. I am hoping this cream will help with the burning. I noticed you had mesh, I still have my mesh inside (tvt) and my right pudendal nerve is still entrapped. I really don't want to have anymore surgery at this point and am hoping and praying that things will settle down. I am still on a lot of meds and just had them switched up by my PM doc today. How are you doing with your medications? Do you still take anything for pain?

Wishing you well and pain free days!

Lara

Hi Barb
Sorry, I forgot something.... Your signature states you had an injection? Was this post op? Dr Hibner wants me to have a Perineal nerve block (ultrasound guided) in the area that I have pain. I am going to have this done here in Canada by the doctor that did my blocks pre operatively. I have an appointment next week. Can you give me any information about this? Any thoughts? I'm not expecting much pain since I am still numb but a little scared of an injection so close to the nerve again.

Take care
Lara

Hi Lara,
How did you find out your nerve was entrapped. Is the nerve entrapped in scar tissue? The injection was done at my surgery by Prof/ Dr. Aszmann. He saw inflammation on the ultrasound at the hamstring attachment to the ischial tuberosity and thought I had hamstring tendinitis, so he did an injection to calm it down. I did an MRI a couple of weeks ago and it did not show any tendinitis, so I am wondering if I also have entrapment of the nerve at the perineal branch. I was just asking if anyone knew anything about pudendal nerve block of the perineal branch.

Dr. Potter saw dense scarring of the muscle that attaches to the ischial tuberosity with entrapment of the nerve, but Prof. Aszmann felt the SS/ST entrapment was more painful.

I thought I would wait awhile and see how I feel after the nerve heals more, but if I continue to have pain at the ischial, I would definitely think about having pudendal nerve block of the perineal branch. I just wouldn't know where to go. I guess I could get Dr. Hibner to do it, but that would entail flying and I would prefer not to. There are no doctors here that i would trust........or who know about PN.

I am still on neurontin and I take 1 tramadol a day. It takes the edge off.

I hope the injection goes well and that it gives you relief. Let me know.

Barb

Hi Barb
I had bilateral PNE, I only had the left side decompressed. I had nerve conduction testing and a physical examination revealing bilateral PN issues. I am assuming my other side is entrapped as well since the left was very badly entrapped with scar tissue.... A reaction to the mesh? I I woke up from the gyne procedure 3 years ago in agony. Dr Hibner is waiting to see if my other side settles down before proceding with decompression surgery. Did you have bilateral surgery?

I am still waiting for my ketamine/xylocaine cream from the compounding pharmacy. The cost is $135 for one tube... Is that what you pay for your mixture? I am having a better day today. I started back on Lyrica and my PM doc added topamax to my cocktail of meds yesterday. Wondering if these can start to help with the nerve pain so fast?

Hope you are feeling well today, take care.

Lara

Hi Lara,

Sorry it took me awhile to respond to your questions. We have been going through the loss of our beloved little 16 year old bischon that stole our hearts many years ago and has left a hole in our hearts that is very hard to deal with. My pain has escalated, but I know stress can do that.

My compounded cream cost around $90, but I only got a small amount and I really can't tell any difference. It does say to use 3 to 4 times a day and I have only been using it once a day, so you may need to build the level to get any relief.

I am sure my problem is from the mesh. The doctor put it in without my knowledge and he did a tuck at the entrance of my vagina that I am sure caused the scarring of the muscle that attaches to the ischial tuberosity.

How did your block go? I am curious if that helped.

I only had one side done. Prof. Aszmann saw how enlarged my ligament was on the right, but that did not show up on the left, so he opted for one side.

Hope you are feeling better.
Take care.

Barb

Hi Barb
I am so sorry about your little bischon! I hope things will settle down with your pain soon. I was not able to have my nerve block here in Canada. The doctor here did not want to attempt to get close to the nerve through the perineal branch. I guess I will have to fly back to Phoenix soon to have this done with Dr Hibner. My pain is still pretty bad in that area and I was told it may be permanent caused from the nerve sheath..... Very depressing for me now. I wanted to tell you that I thought about the nerve pain that you describe in the gluteal fold.... I think I have that as well. I felt around and that area on me (left side) is numb and is quite tender as well. Did you have the on q pain pump post op ?

Hope to hear from you soon

Lara

Sorry to just jump in.. but i had the On Q pain pump with my TG sugery in 2012 and it did take a solid 18 months for the are around it to not feel numb. If I'm way out if turn, I'm sorry.

Oh and my first dog was a bischon, I know what you mean I think the more a dog is by your side the harder it is when they are gone. I have a Boston Terrier that is now 13yo and I am dreading that day.

Hi Blight!
I actually wanted to PM you today but chickened out. I read that you had perineal blocks post op? Dr Hibner wants me to have a perineal block (ultrasound guided) because I am having severe stabbing burning pain coming from a particular area that is completely numb. I saw my doctor today that did my nerve blocks pre op but he said he will not attempt to do them post op. He wants me to go back to the states to have these done. Wondering... Did the blocks help? I live in Canada so it's a long way to go and a hassle with insurance. How long after surgery did you have the blocks?

Thanks for any help that you can give me...

Yes, and no. I have had 3 blocks and i have found that they have helped with the hypersensitivity. I have also had more success with the TENS units. In the TG sugery ny PN had scarred into the nerve so my situation is not typical. I also have both SS ligaments completely removed.

When I consulted a nutritionist/Chinese Traditional Medicine Doctor he explained that my body need some key supplements to help repair the nerves.

I am not a big fan of supplements, except in certain situations where the body is abnormally deficient in one.

They were:

Refined Folic Acid supplements. You can read on this site more about them, but basically your body needs this to rebuild muscle and convert fat back to energy. And with most of us dealing with nerves for so long this can help replenish the supply for you body to help repair the nerves.

Also B12 injections, I prefer injections. They are 25$ at my local Chinese natural medicine Dr. But 5 hour energy works too, Again you need this or the nerved to repair themselves.

The reason I say this is because the injections only reduce swelling and promote healing, the do not heal themselves, so you want to help you body be ready to heal while the steroid is working around the nerve.

I would say that the injections were helpful but, in my scenario, the question really is how damaged the nerve was.

Hi I had bilateral TG surgery 3 months ago and both SS ligaments removed. As well as medication I also find magnesium and cod liver oil helpfully but will try vitamin B12 and folic acid. Have you found alternative therapy helpful? I am due to start PT next week but apprehensive as still in considerable pain. I have found relief from gently swimming several times a week, almost pain free in the water and only swim on my front holding a float, getting out of the pool is the painFUL though and not the most glamorous!
Good luck with your recovery