Newcomer shares her story and seeks advice.

[ayodele]

Hi,

I'm new to this forum. I've been reading it on and off for the past few weeks, but I wasn't ready to accept that I might have PN. This has been very challenging for me, as I'm sure it's been for everyone on here. However, I'm trying to reach out rather than endure the isolation that I've been feeling due to my condition.

I'm not sure of the appropriate course of action here, meaning that I don't want to be obnoxious or not follow the rules of the forum. I've noticed that when people introduce themselves the other members usually ask for their story and so I thought I'd give you my condensed story and a few questions.

Last December I got a really sharp horrendous pain on my left abdominal side. I was given two rounds of strong antibiotics "just in case" but it turned out to be an ovarian cyst. In January, right after my cyst pain went away (I went on birth control), the burning began. It's the whole burning vagina, piercing pain, etc. I told my friends that my vagina was very angry with me. We nicknamed it. I figured I'd find the cause and heal soon. After several months of lidocaine cream, steriods, antiobiotics, and ice packs, I was desperately searching for help online. In April, I had my first herpes outbreak. My boyfriend (of 5 years) has it and I'd known, taking the risk because he was on daily Valtrex and because love does funny things to your brain. This is important because it might be the cause of my PN. However, at the time I thought I'd had a prolonged outbreak and almost felt relieved when I got a diagnosis (it's amazing what you'll welcome when you're in debilitating and mysterious pain). But the outbreak subsided and the pain persisted. I found a website that discussed vulvodynia and vaginismus. I had been through a slew of compassionate but confused doctors and I took my new possible diagnoses to three doctors. Finally, in July an obgyn recognized that I have vaginismus, sent me to a PT and put me on Neurotin.

I love my PT. She is wonderful. Since August we've been working through the pain, trying to figure out a cause for all this pain. I have vulvodynia, vestibulitis, and vaginismus. She is also thinking that perhaps my pain is really stemming from post-herpetic pudendal neuralgia. She is doing myofascial release on my legs and inside my vagina (I have these trigger points alll over my legs and butt-- who knew?!), nerve gliding, stretching, and a few other techniques that I can not remember. I use the foam roller, stretch, use a seated cushion, walk for exercise (I hate to swim) and go to Kundalini yoga to work on relaxing my tight pelvic muscles and strengthening my nervous system. My SI joint is apparently "unstable" and my obturator is incredibly tense and possibly contributing. I'm currently on 600mg of Neurontin, daily Valtrex, lots of vitamins and I used to use Estrace but I couldn't really tell a difference so my gyno. told me to get off. She's a minimalist and so am I. Oh, and I go to acupuncture as well. My PT is thinking of PN because the burning, throbbing, piercing and/or "crankiness" starts when I'm sitting. For a few months I simply could not sit down. Also, I get weird throbbing and aching sensations at the base of the nerve...I don't know if this is a correct description...on the very lower part of my labia.

I'm sorry this is so long! I have a few questions, if anyone knows the answer.
-What do you think of Neurontin? I can't tell if it's helping. All I know is that it makes me incredibly spacey and I've been gaining lots of weight.
-Have you heard of pudendal neuralgia caused by genital herpes? (I have type II)
-I've read online that PN is difficult to diagnose. I've read that getting a nerve block is the ultimate way to determine if it's PN that's really causing your pain, but then I've read horror stories about nerve blocks. I just worry that my body won't respond well to the nerve blocks. I guess I'm just scared.

If you are still reading I appreciate your patience! I've become pretty saddened and depressed by this condition. I really want to read stories of hope because lately I feel like I don't have much to fight for. Meaning, I'm afraid I will always be in pain, never be able to sexually active, and I'm worried about my emotional health. This condition is very isolating.

Thanks from the newcomer!

Ayo

[missyrg]

Welcome! I am sorry I do not have an answer but this site is great and so are the people. It sounds like you are going through a lot but you do have a good support team of help. I've had 4 nerve blocks and they did not help me but made me feel worse. I am currently looking for another dr to help me locally and then make an appointment with a pn specialist. I pray you have a Happy Thanksgiving! Missy

[Celeste]

On Neurontin, I felt kind of drunk. I could still feel the pain, but I just didn't care. You might try a low dose of either Valium or Klonopin instead. I know a lot of people who use that for pain management.

If you're going to try nerve blocks, my suggestion is to wait until you've chosen a PNE specialist, and then get your blocks done through them. I say this because none of these forums have any stories of people getting one and being cured; they can be diagnostic for sure, though, and you might as well get them done someplace where they do them all the time and let it count towards treatment. I had some done before I went to a PN specialist, and the results could not be accepted; I had to repeat them to move forward with my treatment of choice.

[Charlie]

I would have a 3T MRI with Dr Potter or MRN scan done so you can asses what is going on in there. I think you would be better off spending your money on this, Bear in mind that there is no evidence that myofascial/ trigger point physical therapy is an effective treatment for pelvic pain. It usually gives temporary relief but I have never known someone to become pain free from it. http://www.pudendalhope.info/forum/view ... f=35&t=384

Having said that it is very good of your PT to explore the possibility of PNE.

[ayodele]

Thank you for your responses! It's so nice to connect with people who understand pelvic pain. I am going to talk to my PT and gyno and then probably call Dr. Renney's office (I live in the South). I don't want to jump the gun with this, but I keep reading that it's best to catch PN early. However, I don't know how long "early" is. I've had this pain/burning/stinging/aching for about eleven months. I just sat on it with ice packs (probably making it worse) for a few months, but I don't think nine months seems that long. Maybe I'm wrong. I will admit, after posting I found a few answers to my questions after thoroughly reading the site again. Apologies for that. Still, opinions/advice are welcome.

Again, thank you for reading and/or responding to my post .

[nyt]

Hi Ayodele, welcome to our forum. I am glad you were able to find us but sorry that you are struggling with these awful painful issues. I would not be surprised if the herpes could be the cause of a post-herpetic neuralgia. I am not a dr. but I say this because it is well documented that individuals who get shingles in the nerve that run to the eye can develop very severe neuralgia along that nerve so why couldn't the pudendal nerve be affected the same way. Just seem logical to me.

Sounds like you have a wonderful PT that you are working with and if it is helpful than continue.

If you have the money I would suggest that you find a PN specialist and see one of them. As Celeste stated they don't usually accept pudendal nerve blocks done by other physicians. There are a variety of reasons for this. Therefore, safe your money and just to go one of the PN experts to begin with. When you do you will be able to have the appropriate work-up, know for sure that you have the correct diagnosis and treatment plan that is specific for you.

There are other medication options besides Neurontin that you can ask you dr. about to see if you can minimize side effects. Probably most of us on the forum would say that they do give some side effects some worse than others. An oldie but goodie is Elavil which is a tricylic antidepressant. There are other tricyclic antidepressants that are newer, there are serotonin uptake inhibitors (SSRI), serotonin-norephrinine uptake inhibitors (SNRI), and anti-seizure drugs. There are a lot to choose from so don't get discouraged if one doesn't work. Sometimes you might need a combination of drug therapy.

It sounds like you are being very proactive with your health which is always good. Take your time and read some of the old posts. They are filled with lots of information. I will keep you in my prayers during your journey to recovery.