Pudential Neuralgia advice :(

[Farce6537]

For the past month I’ve been dealing with irritation, burning, and stabbing pain around the perineum, vulva, and rectum. The area that is most affected is my anus. Everyday I wake up with it feelings itchy and swollen. When I walk I get these cramps in my anus that feels like I have poop stuck in there and like something is crawling. Going to the bathroom to defecate is a struggle because it feels like I have blades down there as the poop comes out. It’s been a tough month and a half. I constantly battle my symptoms and go though these episodes of anxiety where I think I’m going to die or be strapped to a bed. I think about my world crashing down as the flare ups continue. I try to be positive sometimes that I will get better but sometimes I don’t see a way out of it I’m 27 and I want to live a regular life like I used to. My pelvic floor therapist has diagnosed me with pudential neuralgia. I’m going to continue going to PT as I’ve only had one session so far. However, the medication that I’ve been given is not helping. I’m on gabapentin 300mg, I take one per night. I also have these Valium suppositories and this lidocaine crème. The gabapentin helped for one week but now i feel like my symptoms are back and I feel twitches on my hand and feet. Did anyone experience these symptoms and if so what is some advice you could give me in terms of lifestyle, medicine, and techniques to avoid flareups? Thank you all.

[Violet M]

Hi and welcome to the forum. That's good that you are giving PT a try. You should know fairly soon - within 6-12 sessions if it's helpful. Did the PT say whether your pelvic floor muscles are tense? Were they able to press on the pudendal nerve at the ischial spine during the vaginal exam to determine if the pudendal nerve is tender there? Hopefully they checked you for any pelvic misalignments, hyper or hypo mobility, or any other musculoskeletal anomalies that could be contributing to your problem.

Not sure where you live, but if possible, it would be a good idea to see a pudendal neuralgia (PN) physician. Also, I don't know what caused or triggered pudendal neuralgia for you but typically an MRI is ordered to rule out anything visible on the MRI that might be a problem. There are different types of MRI's so you might want to check with a PN specialist on what type of MRI should be done in your case.

300 mg of gabapentin is a pretty small dose so it's not surprising that it's not helping. But even when I was on 900 mg., gabapentin did not help me and I had some side effects from it -- shooting pains. Different drugs work for different people. This page on our website discusses some of the medications often used with pudendal neuralgia. https://www.pudendalhope.info/medication-management/
I noticed that lyrica (pregabalin) is not mentioned on that page. It is another drug that many people find helpful for nerve pain. Also, some people have found anusol suppositories or nitroglycerin suppositories helpful for rectal pain. So, if your medications aren't effective you might want to let the ordering physician know so they can adjust your meds.

I don't know if you have problems with constipation that make it harder to have a BM. If so, there are some ideas on how to avoid constipation on this page of our website. https://www.pudendalhope.info/constipation/
If you keep your stools soft, maybe it will help ease the rectal pain.

Many people on this forum can understand the hopeless feeling you are experiencing. There was a time I thought my life was basically over and that I would never have a good life again. But, with the right treatments, I am doing great now, so please keep fighting. There are many people who have come to this forum who have gotten better and moved on with their lives. I hope you will be one of them.

Violet

[Farce6537]

Thank you for all the tips! Yes, my therapist assessed my my pelvic floor and used the q-tip to trace the nerve pathways. That led to confirmation of a pudendal nerve block. Unfortunately, I don’t have a pudential neuralgia specialist near me in Washington DC. Is a pudential neuralgia specialist supposed to be a neurologist since it’s a nerve issue? I’m also going to schedule an appointment for a colonoscopy. I believe I may have an anal fissure which is making my discomfort worse. When you were experiencing symptoms, did you also feel twitches in your hands and feet. Also, can these suppositories be purchased over the counter ?

[Violet M]

Different specialties of doctors treat pudendal neuralgia. It kind of depends on whether the doctor has an interest and any experience/training in treating it. There are some doctors in Maryland who treat pudendal neuralgia but there is also a colorectal specialist in West Virginia who does. There is a list of doctors on our website who treat pudendal neuralgia. https://www.pudendalhope.info/united-states-physicians/ I'm sure there are many more than these who I don't know about but these are the ones our organization knows of. You could also check with John Hopkins to see if there are any doctors there who are currently treating pudendal neuralgia. Have you asked your PT if they know of a pudendal neuralgia specialist in your area?

Anusol and nitroglycerin suppositories are prescription medications but you could ask your doctor about them. I don't remember having the twitches you are describing and that is not something PN patients typically describe on this forum. That might be something you would want to see a neurologist about - or ask your primary care doctor who to see.

Violet

[stephanies]

I am in the Washington, DC area and have found that the Center for Vulvovaginal Disorders has doctors that have expertise in PFD and pudendal neuralgia. I used to see Dr. Andrew Goldstein there but he only practices in NY now. Dr. Rachel Rubin, a urologist in Bethedsa, is also knowledgeable about PN.

Stephanies

[Farce6537]

Thank you both for the helpful tips and advice! I am currently on pregabalin and trying out dry needling with my pelvic floor therapist.

[Maryslittlelamb]

How is this going now?