Recently diagnosed with Pudendal Neuralgia

[Steedie]

Hi All,

After 3 years of pain following a hysterectomy, I've been diagnosed today with Pudendal Neuralgia by Dr. Popeney here in Houston. I'm relieved but am now wondering what is next?

I had a lap supra cervical hysterectomy with anterior & posterior repairs and bladder sling performed by my GYN, Dr. Byron Holt, in July 2009, due to prolapse. Part of the mesh was removed in Oct. 2009, with the remaining removed in July 2010 by Dr. Lotze. Somehow, I have managed to work at a desk job part-time, but have had to resign recently as the pain seems to be increasing and I am unable to tolerate sitting and office politics (both a pain in the rear).

Dr. Lotze has been fantastic. Since I had the mesh removed, he has been very supportive and always has a new plan of action for me to try. Some things that work for me are using Valium vaginally when the pain is too much, Tramadol for pain, and Neurontin, which I've used for over two years and it works much better for me than Lyrica and/or Cymbalta (not sure which gave me brain zaps every 30 seconds or so). I've had Physical Therapy at two locations and have some relief after for a while, though sitting at my desk would bring the pain right back again. Some of the take-home exercises hurt so much that my eyes would water, so I don't do them all of the time. I had a TENS unit prescribed in December with no benefit, only transferred stomach and leg cramps.

This spring I saw Dr. Phan. My diagnosis at that time was Piriformis Syndrome and I had two nerve blocks - superior hypogastric, I believe - that didn't have any effect. It was nice that they offered sedation, though, as I find the experience stressful. I changed to Dr. Popeney mainly because I couldn't handle his back office and waiting room waits. It was impossible to get a refill for Neurontin while under his care and I had to do without it for over two weeks until I could see him again.

I've recently seen Dr. Popeney and had 3 tests: an MRN, an EMG and a nerve block in the Ischial spine by Dr. Twiford. The MRN was very uncomfortable. Apparently, I have scarring of the perineal branches in the Alcocks canal bilaterally. I didn't even make it through the complete set of tests for the EMG, but long enough to get a result that suggests damage to the pudendal nerve. The nerve block was uncomfortable but I had relief right away. I am looking forward to my next nerve block, but have to wait three months. I like both of these doctors very much, they are very knowledgeable.

I will be going back to Dr. Lotze for the next game plan. The diagnostic tests were very difficult, but I am so happy to have a solid result.

I appreciate whatever guidance anyone can provide regarding exercise/yoga. I am unable to find much online and don't want to aggravate an already painful situation.

Best regards,
Stephanie

[janetm2]

Welcome Stephanie,
For exercise ideas there may be some in the FAQs off the home page and in the physiotherapies techniques section of this forum. Also two books are Amy Stein's healing pelvic pain and Wise's headache in the pelvis. You seem to be on track for getting this diagnosed and treated. Are you seeing a physical therapist that is PN aware? They should be able to give you exercises you can do and you should not be in that much pain doing them. We have PN aware physical therapists listed off the home page. I know others will have some more guidance and good luck.
Janet

[Steedie]

Thank you, Janet, for your reply.

I will be making a third visit to PT soon. The prior list of exercises that I have are aggravating the pain so I am unable to continue with them. I am fortunate to live in Houston where there is a large medical community so I am sure that I will be in capable PT hands before too long.

Thanks again,
Stephanie

[Violet M]

Hi Stephanie and welcome to the forum. It sounds like you are on the right track. Unfortunately for most of us it just takes time and trial and error to figure out what treatment is the correct one in our case. I didn't know you could get the MRN in Houston now. Could you share where you were able to get that from? Dr. Popeney has been treating PN for a long time and has lots of experience so he should be able to guide you through this journey.

Regarding exercise, if you have a possible entrapment it might be important to avoid anything that would cause a stretch injury to the nerve such as bending or stretching. Avoiding sitting is important too if it aggravates the nerve but that is easier said than done. You could check out this link for more ideas about exercise: http://www.pudendalhope.info/node/19

Take care,

Violet M

[Steedie]

Oh dear, I just realized that I didn't reply.

I had the MRN done at Memorial Hermann Imaging Center - Upper Kirby, located at 2900 Richmond Ave., Houston, TX 77098. The Memorial City location also has the 3T MRI available now.

I am still seeing Dr. Popeney and am very pleased with his treatment plan. That doesn't mean, however, that I am not still struggling with constant pain! I've just received my first tube of G4 cream (Ketamine/Gabapentin/Diazepam/Lidocaine) that he's prescribed to help me through the lag time between nerve blocks. After reading other people's experiences with similar creams and burning, I am hesitant to try it.

Also, I am not comfortable with PT massage and have not pursued that again. Driving to and from the facility seems to undo the positive effects. I really wish someone could come up with some basic yoga poses for us. It is difficult to find any that don't require bending!

- Stephanie

[Violet M]

Stephanie, I found a numbing cream to be helpful for burning pain. I just had 20% benzocaine though -- I would expect that what you have is better and I would be interested to hear how it works for you.

Violet

[maryflaw]

Hi Stephanie,
I just want to really encourage you. I have the same team of doctors as you do, and I agree, they are terrific.

As far as exercise, you might want to try aquatic therapy. I have found it to be very helpful and it is harder to aggrevate your condition in water.

I have had blocks, botox and take lyrica. I will have another round of Botox using MRI to guide and hope that there is success with that.

My best wishes and prayers go out to you through this journey. With support the journey is less scarey.