Have Pudendal Neuralgia. New to forum

[jess188]

Hello my name is Jess and I have PN. I am so tired of this burning pain.
It has been a long road and I have been sick with various ailments since I was 20 ( now 40) but this began in mid July when i had a ct scan and then had a ruptured cyst. i was in alot of pain, but figured it would subside. After that I had abdominal pelvic pain tht wouldn't go away and extreme pain. I had been to the ER 4 times in a month. They ran CT scans, bloodwork, pelvic exams, MRI, cultures, Xrays etc and all were normal. I was so frustrated. I now take Bentyl for muscle spasms ( colon) and Nexium. The abdominal pain went away but the burning in the vagina remained. This is very difficult.
I was referred to a Neurologist who determined nerve pain and put me on Neurontin. I am now titrating up to 1800mg and no bad side effets. I am on Neurontin, Lexapro 10mg, Bentyl. When I have more pain, I take hydrocodone.
Today the pain was worse in the morning, when I was doing well in the morning as the pain usually gets worse at night. I can't sit, have been unemployed now, this is the only thing on my mind. I belive it was the muscle spasms and chronic consitpation that may be the culprit.
What should my pain level be WITH medication? should i expect a level 0-2? or be happy with a 5-6? I don't know what to expect or if the Neurontin is working? I hope someone can help.:help: THANK YOU jess

[Kara29]

Welcome Jess to the ICN!:welcome:

You are not alone! Unfortunately there are more and more of us being diagnosed with PNE each day. But the good news is that the more of us there are.....hopefully the more treatments and procedures will become available to us.

Can you ask your Docs if they can switch you over to Lyrica? You can take much less of it and much less often. I used to take 3,900 mg of Neurontin a Day, now I take 150mg of Lyrica 2-3 times a day, usually only 2 times a day. It lasts much longer in the system if you can tolerate it and find someone to switch you over.

Since I am also disabled and can't work, I am addicted to a new thing..........ICE, yes I know it sounds silly but it really helps the burning/urgency pain for me. What I do is get a premie pampers diaper and break it open by separating the middle of it. Then I add rounded or crushed ice, put it in a ziplock bag or pharmacy plastic bag, and put it between my legs. It seems to last a very long time 6 hours or so.

I will take photos so it's more understandable. That with my pain meds seems to help bring the pain level down to a 6 or 7 instead of a 10.

For pain each of us is different. Some of us want a pain level of 0-3 and some of us don't care as long as it drops even a tiny bit. It's all subjective to each individual person.

I will add photos tomorrow. I'm not doing well tonight.

Kara

[leelee88]

Hello and :welcome: Jess..

I am sorry you are suffering with this.. I hope the meds you are on do start working soon..

[jess188]

Thank you for the welcome.
That sounds great the ice thing. Goofy question, but can you " wear them" out or does the ice then melt and not work while wearing with pants. I wish there was something that could last longer that you can " wear" like the thermacare products for menstral or back pain.

[leemclemore]

Jess,

I have heard great things about Dr. Michael Hibner in Phoenix, AZ. I am scheduled to see him next month in mid November 2008. You might consider making an appointment with him.

Good luck and I hope you are able to find relief from your chronic pain, there is nothing worse.

Sincerest regards,

Lee McLemore

[Kara29]

I only wear the premie size diapers at home in the privacy of home.

Ok I am going to take photos now so you can get an idea of what the heck I am talking about. I will be back in about an hour with some explanation.

Do come back and look at it. My Husband is going to help me do it now.

Kara