LOTS OF PAIN! Negative Herpes Blood Tests and Cultures

Hi,
     I am 27 and having my second 'outbreak' of 'not herpes'. Sounds strange, I know. When I was 17, before any sexual contact, I came down with bronchitis, followed by an outbreak of 4 lesions on my inner labia. They were the most painful things in the world.  The lips actually swelled up like globes and I could not put my legs together, walk, sleep, or go to the bathroom because the pain was SO EXCRUCIATING! I was out of school for 5 weeks because of it. I went to emergency rooms, doctors, walk-ins, and many different gynecologists. I had blood tests and cultures, all of which came back negative for herpes, STD's, and anything else they tested for. Eventually, the sores healed and it went away on its own.
    It was gone for 10 years, but last week, the night I was diagnosed with bronchitis, I began taking amoxicillin and I began feeling discomfort between my legs. I am now 27, married, and not had any sort of outbreak of anything in 10 years, though I have had bronchitis many times since. The next morning, I woke up with all 4 sores in the same places they were last time. I go an emergency appointment at the gynecologist, who said it was probably herpes, took cultures, blood tests for EVERYTHING at my request, and sent me home with Valtrex. Over the next day, the swelling got worse and the scabby-sores worsened and got bigger. The second day, the swelling had gone down, but the pain was so bad and I knew it would be getting worse, that my husband called the on-call OB/GYN who had me come in to meet her at the ER, where she was. I got checked in, she said 'herpes' and to wait for the cultures. I wasn't surprised, but the ER doctor checked me into the hospital for being dehydrated and my viral bronchitis, I was there for 2 nights. The third day, I wanted to go home because I wasn't getting sleep. Little did I know how painful it would be when I got home. At the hospital a lot of the pain medication was helping me cope with my vaginal pain and making it possible to urinate normally.
       Now, I have been home for 3 days, and I cannot urinate without EXTREME PAIN. My body is still very worn down, worse so, maybe, since I don't want to keep drinking because I don't want to go to the bathroom. The 'scabs' have since come off of the sores and the swelling is completely gone. Although the sores look like craters of 'new skin' and look like they shouldn't hurt at all, but THEY ARE SO PAINFUL!!!  The pain occurs when I move the wrong way, URINATE, or accidentally put something on my lap in the wrong place.
     I'd like to know if there is a name for what I have, and if there is any way to sooth the pain. I am a teacher and I have been out of school for a week and a half. I have to contact my short term disability company tomorrow. I don't want to be out of work for a month because of this pain. Please help me! I would appreciate any type of specialty doctor you suggest I go see. I live in the DC area. I am not on here because I am afraid to ask REAL people, but because I haven't been able to fin any answers as to a diagnosis or for pain management.

Thank you.

[mandy407]

i was in the same situation as you. i couldnt walk, sit, anything physical. i had to go to a sexual health clinic and talk to them because i had had outbreaks before and this was by far the worst. they checked me and swabbed me for the possibility of another infection. they said that anything could have caused me to get an infection during an outbreak and that you need to keep it super clean downstairs while you experience an outbreak. so they did send me home will medication for an infection and the medication worked beautifuly. turns out when they called me days later with the results i did have an infection. they just test you for it by swabbing a soar that you get. so my suggestion to you is to go to a sexual health clinic and ask them to do a test for an infection on the herpes. good luck

[phoenix28]

For anyone who stumbles upon what I've written and gone through, I found another thread in "Undiagnosed Symptoms" that seems to describe my experiences to a 'T'. I got a lot of ideas from this page and I am planning to bring my information to the GYN as soon as I get an appointment. Oh, yeah, and this morning I woke up with a sore throat.... I'm thinking this fits in well with the auto-immune disease aspect. My body is so run-down that everything that can happen, is happening.

http://www.medhelp.org/posts/Undiagnosed-Symptoms/vaginal-ulcers/show/202635

Mandy- Thanks for your support and ideas. I've been on antibiotics, valtrex, and some other meds for about a week. The trick is that I don't have herpes. You can check out the posts above, I was actually amazed to find so many others who've had similar problems with the same test resultts. I'll be looking into Lipschutz Ulcers and some of the remedies that have worked for people.

[gracefromHHP]

Your first clue was that you had this originally before you were sexually active.  Obviously it wasn't herpes then. It' s too bad your provider's aren't listening enough to you :(  

Did they also test you for yeast and bacterial vaginal infections too?

I actually recommend a dermatologist at this point. Ask  your gyn if they have one that they have had good results from from other patients for consults for genital issues in other patients that they needed help with.  Obviously you need seen sooner rather than later so that you can finally get some better ideas of what is going on.  

At this point I recommend a few things also - call and ask for stronger pain medication.  No reason to keep suffering. Also even though this sounds like the worst advice anyone in this world has ever given you, drink TONS of water. It will dilute your urine so that it stings less running over open lesions. Also consider picking up a sitz bath set up. You set it in your toilet, fill it with warm water and urinate into it to dilute your urine even more. Then there's a bag that comes with it to use to rinse the urine off your genitals and then gently pat it dry afterwards.  Also soaking your bottom in epsom salts in the sitz bath periodically will also probably be soothing and help dry up the lesions.  

Best of luck with getting a proper diagnosis so you can treat this and have faster healing!

grace

[tee100]

Hi
I have just been diagnosed, my problem started Feb 2009, i have spent thousands of pounds trying to come to the bottom of this, every single std was tested for and hiv, tb all very costly in the end and then i was surfing the net and found something on lipschutz ulcers and it all sounded so similar to what i have, so i suggested to my gyno, who then sent me to see a dermertologist who diagnosed me on the spot, lipschutz, she suggested a steroid cream and minocycline when i next get an attack, i'm hoping never, this my first and i am 44, i had 4 huge ulcers internally in feb 2009, and they took all year to heal until jan 2010 and then immediately another one on the liba minora.  but that is healing beautifully now after 5 weeks of hell with it