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Subject: "I thought my pain was from herpes, but I now know it wasn't..."     Previous Topic | Next Topic
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Conferences Neuralgia / Pain Topic #390
Reading Topic #390
amy_c
Member since Mar-19-07
22 posts
Jul-07-10, 11:14 AM (CST)
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"I thought my pain was from herpes, but I now know it wasn't..."
 
   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.


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C16679admin
Member since Aug-29-06
9733 posts
Jul-07-10, 12:40 PM (CST)
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1. "RE: I thought my pain was from herpes, but I now know it wasn't..."
In response to message #0
 
   Wow, what a crazy thing, huh? Who would have guessed upper back stuff could affect the pelvis and that was the root of all your constant problems?

I'm sorry you went for so long before getting real help, but it's great you were persistant and have finally seen real improvement.

Thanks so much for returning here to post. People really believe all their issues are related to Herpes, and maybe sometimes that's the case, but we so often say anything constant shouldn't be Herpes and folks don't believe it. So it's bound to help someone to see your firsthand account.

C.


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vulvopain
Member since Jan-12-11
2 posts
Jan-12-11, 03:26 PM (CST)
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5. "RE: I thought my pain was from herpes, but I now know it wasn't..."
In response to message #1
 
   I am just 2 months into vulvodynia and it is making me crazy. I have been to 3 drs. spent $400.00 on creams and am nowhere near feeling relief.

I believe it came on suddenly as a side effect of stopping a Xanax regimen but I have no concrete proof of this - still stabbing in the dark as you can see.

I would like to know what exercises you are doing to alleviate some of your pain. Best Wishes....


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Lenoreadmin
Member since Oct-22-04
4277 posts
Jul-08-10, 08:45 AM (CST)
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2. "RE: I thought my pain was from herpes, but I now know it wasn't..."
In response to message #0
 
   Thank you for taking the time to post. I often feel like a broken record when I tell people that not everything is caused by herpes and when you have crazy atypical constant symptoms you should start ruling out other problems. I'm sure it makes a big difference for people to hear that from you.

And I'm glad you're feeling better.


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Scooter
Member since Sep-27-08
500 posts
Jul-15-10, 09:26 PM (CST)
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3. "RE: I thought my pain was from herpes, but I now know it wasn't..."
In response to message #2
 
Hi ~
Thanks for sharing your story. I am so GLAD you found some relief from your phn. I was in the same boat and still live with unanswered questions as to what caused the severe debilitating pain that I lived with for years.

I had a severe reaction to contracting GHSV2 with severe itching, nerve pain, and burning in my vaginal and rectal area. The worst outbreak was in my rectal area and that is the place that H most reoccurs. After being very ill with flu like symptoms for 3 months I continued to feel dizzy and cognitively bad taking the valtrex so I switched to Famvir. I got progressively worse. I had severe pain - needle like pain and burning everyday - I then started to get severe muscle aching in my labia area. I then ended up in severe urinary pain at the doctors one day.

I again had the 100th blood test and I had no UTI infection - everything was normal. I too had seen about 10 doctors/experts - and I finally went to a pt that did vaginal trigger point therapy to release the muscle spasms around my urethra and in my vaginal area caused by the phn. That helped some but not enough and I got to the point where my entire pelvic are just hurt like hell. I had a lot of low points but that was probably the lowest and really didn't want to keep living that way.

I was very apprehensive about switching back to the valtrex but in desperation did. In reflection - although cognitively I did not feel well - it always did a better job of controlling the replication of the virus. I have now been on the valtrex about 6 months and my symptoms improved 80%!!!

For me I feel that pain is related to the constant replication of the virus. I had many more outbreaks on the Famvir that I now recognize looking back and still have them today but they are less severe. The chaffing in my rectum to me is an outbreak and now I recognize it.

I'm glad you found relief through the pt and getting more oxygen to that area is helping. My pt never mentioned my pelvic being out of alignment and in the many books I purchased and the many conversations JG440 I had, we did not discuss that. I do find that exercise in general will cut down my nerve pain.

That brings me to a conversation that I had with J a while back that I really wanted in the neuralgia section. Thanks for sharing I am always open minded to methods of healing.
So glad we are both doing better


Scooter

"The two most powerful warriors are
patience and time". Leo Tolstoy



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amy_c
Member since Mar-19-07
22 posts
Sep-08-10, 04:09 PM (CST)
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4. "RE: I thought my pain was from herpes, but I now know it wasn't..."
In response to message #3
 
   Just wanted to clarify - I don't think I ever had phn. I do think that in some cases herpes could be the "straw that breaks the camel's back" so to speak. A lot of pain "down there" can cause tension in the muscles, setting up pelvic area trigger points (just like you said you were treated for, Scooter). From talking to other women who have had the exact same symptoms and don't have herpes, other infections (yeast, uti's) have caused the same symptoms. It could be that it's not the actual specific infection itself, but the pain it causes that starts things to flare up and start a vicious cycle of pain leading to muscular problems to nerve problems to more pain to more muscular problems to more nerve problems, and so on.

I do have to say that I feel really fortunate to have found my current physical therapist - as I saw 3 others (who all were well-regarded pelvic specialists), none of whom did much to really improve my situation. Interestingly, for me, most of my trigger points that were the real troublemakers weren't vaginal, but, yes, rectal. (yeah - who knew those existed!) Once my physical therapist fixed those things really started to get back to normal.

One thing I can say is that doctors are woefully ill-educated about the complexities of things down there. With no miracle drug for doctors to prescribe, I think they are often stumped as to what to do. There is so much going on down there - that when you do encounter pain in that region, it is slow-going to figure out what's wrong and how to fix it. And I pray that everyone who is dealing with unexplained pain down there figures out what is wrong and finds a compassionate medical professional who can help them.


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