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A blog, it turns out, about pudendal neuralgia (not vulvodynia, as we thought for two years) - treatment, pain, other assorteds.
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minimal stuff about me
- Kate
- United States
- I'm married, have a young child, and developed pudendal neuralgia in January 2007 - literally overnight. Well, the Sx appeared overnight. I have another blog, but that doesn't feel like the right forum to write (vent, scream, bitch, etc) about this, so here we are, at vulvodyniasucks.blogspot.com.
13 comments:
Dear Kate
I have just been diagnosed with PN after suffering for a year. I've read all your posts with great interest. I am just starting my treatment with topical neurontin and lidocaine, neurontin tablets and PT. My question is: do you have any advice for someone who is just starting treatment for PN? Are there any missteps you made over the years or regrets in the treatment options that you pursued? Are there any therapeutic paths you took that you wish you hadn't? If you had to do it over again, would you approach it differently? I'm sorry that you have suffered so much over the years and hope that the future will bring you some relief.
Thanks so much and take care.
My first bit of advice for someone who has a wife that has been dealing with these pain issues for 10 years now is to make sure the diagnosis is correct, there are many docs that think they know what the problem is that may or may not really know. Which becomes a very expensive and painful path to take. There are very few docs, at least in our experience that really know this area. Dr G is one of those that we believe is really good in this area.
Then just keep up hope and expect the treatment to take a while.
Husband's advice is exactly what I think: diagnosis is important.
I can think of two things I regret. One is persisting with a provider whom I didn't like and whom I didn't get the sense had any goal in treating me other than to get me off narcotic pain medication, regardless of the cost to my life (I was not and never have misused or abused them). The other is continuing to undergo nerve blocks that were completely ineffective (in desperation that it would work "this time"), despite no reason to expect a beneficial outcome for me. If they work, they are likely worth the pain...but they didn't for me.
Husband,
Did you and your wife see the doc in DC? What did you think?
Thanks,
Kate
Thank you, Husband. I hear you. It took eight years (off and on) of "endometriosis" pain and three pelvic surgeries (including a hysterectomy) before I finally obtained a diagnosis of PN from a pain doctor/neurologist just before Christmas. He is the acknowledged expert in Canada (where I live) who treats PN medically. There are no PN surgeons here, but given my complex surgical history I am not too keen to go that route anyway.
I am on the (infamous) Canadian "waiting list" for a nerve block to confirm the PN diagnosis (approx. 3 months). But my neurologist is fairly confident of the diagnosis, given my inability to sit in a chair even in his office (and obviously all the other painful symptoms in the crotch, groin, hips and lower back). The PN pain flared about a year ago and has not abated since. I cannot sit (at all) or walk for more than twenty minutes.
I start the gabapentin tonight (300 mg, working up to 900 mg by three weeks); the PT in three weeks (again, waiting list); and I have started using the ointment twice a day (which is lovely). I was already on sertraline (150 mg), clonazapam (.5 mg) and naproxen (1000 mg) daily. I am on a first-names basis with my local pharmacist and my three teens think I have a drug problem since I am always sending them to the pharmacy to pick up my mysterious prescriptions.
Thank you for your well wishes and of course I wish the same for your wife.
Thanks, Kate.
Take care.
Dear Husband,
Whilst this condition directly impacts the woman involved it obviously has a huge effect on their partner. I have suffered from 'chronic pelvic pain' (no one wants to give me an actual diagnosis in case they are wrong) since I was 15 and I am now 20. I have been with the same partner the whole time and obviously this condition is a huge part of his life too. Whilst I have therapy, my consultant and pain team and these blogs for support, I feel there is little support out there for the partners of sufferers. Have you come across anything/are you interested yourself in writing a blog?
Best wishes
Kate,
Yes my wife did see the Dr in DC. Dr. G. She has actually seen him twice and has her third appointment scheduled for late Feb. At the first visit he totally dismissed Dr. A’s diagnosis of PN. He then put her on a 3 month plan that he said would get her something like 40-50% better. By the end of the three months she was reporting mostly 4’s on the pain scale where she was at 8-10’s three months prior. So for those of you dealing with this, you know how huge that change is. Dr. G was also very insistent that even though the pain would be down it wouldn’t be fixed, and sex is a full contact sport and until the pain is gone it would still not be where we want it and to expect that.
He then put her on another shorter plan that involves most of his first plan and added PT. This progress has been a lot slower and does cause some spikes of higher pain after heavy PT. The physical therapist says my wife is making progress but it is slow. So for now it is weekly PT, creams, etc… but with the plus that there is now sex in our relationship, given not perfect sex, there is still some pain, and we are limited to one position as allowed by her physical therapist.
So Kate my advice is to hop on a plane and see what Dr G says. The way we looked at it is we have tried just about everything else, lets give this a shot and see what happens.
Anonymous, I haven’t really thought much about starting my own blog for two reasons. The first is I’m obviously not the one going through the issue and I don’t know that I would have much new material to share, and the second is I don’t know that I would get much traffic as most guys aren’t really big into sharing their stories. The reason I started posting on this blog and one other on the same topic is to get more info for my wife and to give others going though it a male sounding board/perspective.
I guess I would consider it if there was enough interest.
Husband
What the heck, Husband?! Dismissed the PN dx? Wow. I am very glad to hear things are improving. Will you say what the doc said about why the PN dx was inappropriate? Freaking out a bit, here.
I do have an appt scheduled to see that same doc, in late April.
Oh, and Husband, what is the new dx?
Again, really glad things are moving in the right direction.
Kate,
Sure always glad to share. The formal names for his dx is: Dyspareunia, Atrophic Vaginitis, Pelvic Floor Dysfunction, Vulvar Vestibulitis Syndrome, and Candidiasis. So how is that for a mouth full :-)
When we did the interview with him prior to the exam, which he asks you everything, so do your homework on what all you have tried, done, etc... He has you write it all down, but make sure you verbally tell him as he reads it really quick and is expecting you to tell him everything on there. But we told him about the Dr A diagnosis of PN and that the shots didn't work, and all that good stuff. He highly questioned the dx at that point but said after the exam he would know for sure.
When he did the exam, which mind you will really really suck to go through. He had my wife flying off the table in pain many times, and made her quantify her pain on your beloved 1-10 scale. At one point he said ok, what is the pain level here where I'm pushing, not anywhere else. My wife said it is uncomfortable but not painful. He did this several times in a couple of different areas. He then said she didn't have PN as he was really working over the PN nerve and if she had it there is no way she would have been able to stay on the table.
So the layman's term he used for my wife's condition is she has the vagina of a 90 year old woman (my wife is 32). Her hormones are all messed up and her pelvic floor muscles are a mess. So off of all birth control (hormonal that is, condoms ok) Add an est/test cream and then follow up with PT, which we found a really good PT in Burnsville that works based off of some of the Dr G's writings.
We still have a ways to go, but we are in much better shape than we were in a year ago or anytime in the 10 years before.
I completely understand. The anniversary is the worst. I am at my year and a half mark and I felt I wouldn't survive the 1 year anniversary. You're angry that you have no choice but to acknowledge it and you're sad for those friends and family members that aren't counting the days with you. As I write this at 4am I can't help but cry at what my life has become. This monstrous stabbing pain has to come to an end for us somehow. This is inhuman.
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