Trying to Get a Diagnosis

Hello,

Like many people on here, I have anxiety over genital herpes infection. In Dec. 2010, I suddenly got a burning sensation in my vulva about a minute following urination. A week later, I went to my ob/gyn b/c I was afraid of having an hsv outbreak (thank you internet). My doctor didn't see any abnormalities or signs of irritation and sent me home. The pain has been on and off since then. I got myself tested for STDs, including a type specific blood test for hsv1 and hsv2 in Feb. 2011. All of the tests were negative. I had another type specific blood test for hsv in Oct. 2011. I did not see the results but my doctor reported them as negative. I can make a few generalizations:

-The burning sensation is always in the vestibule, while the rawness/irritation is always on the inside of the inner labia, outer labia, and perineum. I occasionally get stabbing pains and a tingling in my clitoris. I never see any irritation upon self examination.
-A flare-up usually starts with the burning sensation and then moves to the rawness sensation. Sometimes it goes back and forth between the two, and rarely I feel both at the same time.
-The flare-ups typically last 3-4 weeks, and I will have some days with pain and other days with none during that time.
-I don't have pain to the touch, when urinating, or when washing the area. Sometimes applying pressure to the area temporary relieves the pain.

Between December 2010 and January 2012, I've seen my gynecologist four times, and she always says that there is no visible irritation or skin abnormality. The only things she has done are visual examinations and made slides to look for bacteria or yeast. She tells me that it's just my body's response to stress. I know given my blood test results, it is unlikely to be due to herpes. However, I can't let go of that fear. My point is what I should do next. Is there anything that my doctor isn't doing that she should be? I don't want to miss a herpes diagnosis. Thank you for your opinion.

[Terri Warren, RN, Adult Nurse Practitioner]

First let me say that I feel you can depend upon your negative herpes results.  Your symptoms are lasting for too long a period of time to be consistent with herpes outbreaks.  

I think attributing this to stress is unfortunate.  I guess that's possible, but what does that mean exactly and what do you do about that?  

Have you tried anything to deal with these symptoms?  In terms of medicines?  What is your sexual history, for example, number of lifetime sexual partners?

You are posting on a herpes board and you've had herpes testing, so I'm guessing that you still have herpes on the list of possibilities of what is going on with you right now.  It may help you to have your physician order a herpes western blot antibody test to confirm the ELISA tests that have already been done for you.

Terri

[WhereToGoFromHere]

Hi Terri,

Thank you for your reply. The idea of these symptoms being due to herpes came about because the burning started so suddenly and stuck around, so I did an internet search and that seemed to be the only thing that would come up when I searched it. I hate the idea that my doctor is telling me this is all in my head. It can't be because I've never experienced this before in stressful times. To answer some of your questions, I've been in a 100% mutually monogamous relationship for going on 10 years. My husband is my fifth partner. I could have been exposed to something in college, though back then when we got tested for STDs, herpes wasn't included in the bunch. In fact, I was told that they can't test for it unless you have symptoms. At any rate, I know that my symptoms don't exactly follow a typical herpes outbreak (on and off pain throughout days, weeks, months with no clear end or start to the symptoms), but I would just like some answers. I'm a worrier by nature so once the herpes idea was in my head, I kind of started obsessing over it. What has me the most concerned is that my husband and I are trying to conceive, and I worry about neonatal herpes if I miss a diagnosis and don't take the proper precautions. Things I've tried myself have basically been changing the products I use, such as laundry detergents and soaps. I'm not keen on just trying prescription drugs that will mask the pain if I don't have an explanation of why I'm having the pain in the first place. I just want to make sure that I'm doing what I can to rule out herpes. I suppose I'll try to seek a second opinion about the pain, but I just wanted an opinion from a herpes expert before I start trying to make doctors run tests that they don't want to or think is necessary. If I was your patient, would you really like to see the Western Blot done? I won't go there if you don't think it's necessary. Since you have so much experience with this, I fully trust your opinion. I want to put this to rest and find answers elsewhere if I've truly ruled out herpes. Thank you so much!

[Terri Warren, RN, Adult Nurse Practitioner]

Yes, I would probably order  western blot, not so much because I think that herpes could be a cause but because you are so worried about herpes being the cause of the issues, and if you could put it aside with the best possible test, I think it would help you move on from this particular issue.  Has you husband been tested for herpes already?  Perhaps I missed that.

Terri

[WhereToGoFromHere]

Ok, I will consider asking my doctor about that. My husband has not been tested. He thinks that at this point no amount of money spent on testing is going to ease my mind because I've had no obvious skin abnormalities associated with the pain; my two blood tests were negative; and my gynecologist thinks there is nothing wrong with me. He's also never had symptoms and has had fewer partners than me. He can look at this from an objective, evidence-based viewpoint. I, on the other hand, can only believe there is nothing wrong with me when I'm having a pain-free day. I've started to second guess myself and wonder if my pain really is all in my head. I'm not sure that a negative western blot would ease my mind since it won't explain what's actually happening to me. I cringe at the idea of having to accept this pain as part of my life. I think that's why the idea of herpes is still in the back of my mind. At least, I'd have an explanation and could try to treat it and move on with my life. The only other thing I have found on the internet that describes my experience (more closely than herpes, actually) is vulvodynia, which doesn't really mean anything. This pain has completely disrupted my life and my ability to have an intimate relationship with my husband. That's taken an emotional toll. I know you don't have the ability to diagnose me, especially over the internet, but I needed to hear it from someone who is an expert in hsv diagnosis that my blood tests are sufficient to rule out hsv and that my symptoms aren't typical of herpes. My doctor dismisses me every time I try to talk about what could be going on with me whether it's herpes, a nerve issue, hormonal imbalance, etc. Being written off is what made me seek out your opinion. Thank you for taking the time to address my question. It sounds like it's time to move past herpes and look into other explanations....and probably find a new gynecologist!

[Terri Warren, RN, Adult Nurse Practitioner]

Well, moving to a new GYN might be a good idea if you can believe that you don't have herpes, yes.

Terri