I used to be a frequent reader of these boards several years ago, but haven't been around for a long time since I'm so much better. I am lucky enough to have my first outbreak in nearly 2 years, though, and it made me think of how much emotional support I got reading everyone's post back in the day.
I just wanted to share my story because I struggled with never-ending pain "down there" - itching, burning, aching for years that I thought was herpes-related before I finally figured out what it was - a muscular/skeletal alignment problem. I know everyone's struggle and body is different, but maybe my story can help someone.
I thought all the pain was due to herpes, because it started after my first outbreak. It was pretty mild and I became pregnant shortly after that, so I wrote off all the tingling and itching to my being pregnant and my immune system being compromised at the time - thinking the herpes was probably a bit overactive. My (not-so-smart) obstetrician agreed.
By the end of my pregnancy, though, (14 months after my diagnosis), I had horrible nerve pain downstairs constantly. Sometimes, the aching pain got so unbearable throughout my whole pelvic area, I could barely stand. I couldn't sleep because of the itching. I couldn't sit either. It was all just horrible. I would read this board a lot.
I went to doctor after doctor - 9 in total - who did nothing for me except give me post-partum depression quizzes and tell me that I needed to relax and should try taking yoga.
I found a physical therapist who treated pelvic pain. She verified for me that I had a lot of problems down there and diagnosed me with pelvic floor dysfunction - my pelvic muscles were hard as rock and they were squeezing a bunch of nerves down there and she could actually reproduce and exacerbate the pain by pressing on some well-placed trigger points. She couldn't help me get better, though. I found a doctor who diagnosed me with regional vulvar pain syndrome and gave me all kinds of lotions and potions and did several intravaginal nerve blocks (yes they stuck needles up inside there). Nothing helped. I tried acupuncture. I saw 2 more physical therapists (both who specialize in pelvic pain) before I found the one who finally helped me.
The PT who finally fixed me started treating my body as a whole unit. She did a lot of work on my upper back (which I now know probably had some areas that were locked up for years!) and once she fixed that started working more on my pelvic area. My pelvis has a remarkable tendency to slip out of alignnment - which causes the muscles to compensate in not so good ways and then squeeze on those tender nerves down there - a recipe for disaster. And before my upper back was treated, it just kept pulling my pelvis out of alignment.
After finally figuring out the root of the problem, I have gotten better and better. I can go weeks with almost no nerve pain. I still have some intermittent itching and an occasional flare-up, but it is so mild compared to what I had before, it is easy to live with. I can stand, I can sit (I used to not be able to take trips because sitting in a car or plane was unbearable). I can do just about anything without thinking of my pain.
I still see my physical therapist regularly (she helped me get through having a second baby) but I now know the cause of my problem has been structural. I have learned that certain trigger points in my abdomen can actually send shooting pains into my vagina (of all places!) and I know that I need to be religious in my strengthening and stretching exercises. When I don't, I can get some pain, but I now know it will go away after 1 or 2 good PT sessions.
Anyway, that's the short version of my story. I hope it might help someone.