Testing unsure

[Testing unsure]

I have been with my current partner for 12 years. About eight months ago I slowly developed lesions on my labia until it got to the point where I was unable to work or function or even sit. I did not immediately go to my doctor. I’d had similar lesions in my mouth and throat (not lips, although I can’t be sure because I also have lichen planus and it can be oral at times and so I may have assumed any lesions were the LP) The throat and mouth lesions (they were enormous) had recently been seen and remained undiagnosed.The throat and oral lesions occurred three times within that year and were so terribly painful I could not eat or swallow even my own saliva. However, at the time of this genital outbreak my mouth and throat were all clear. I went to my gynecologist about a week after the sores showed up. she said the lesions did not look like herpes but did a culture anyway and it came back positive. It was not a specific culture, so I am not sure if it was positive for Hsv1 or 2. They also ran antibody labs which came back negative and I was thus told that it was a new outbreak. I then became very ill for another week with extreme sciatic pain, exhaustion and cognitive impairment. I went then to my primary for more help. They did a culture and it was negative for anything other than candida growth, which was minor and not even visually obvious. Also to note, I am not sure what kind of culture my primary ran and am unsure if it was comprehensive. Also, my gynecologist initially called me and told me that my culture was all negative. Then two days later she called back to explain that some part of it was positive after all. I am so confused. How did I contract herpes from my partner after 12 years? I truly believe he has been with no one else. I know that sounds ridiculous to just hear, but in the name of finding out what is wrong with me let’s agree that he has been monogamous. Could he have had herpes, not known ,and only just now have given it to me? We did have oral sex about one month prior to all of this. He also reports having had oral blisters years back. Also notable: I have had no sex in all this time since the initial outbreak as my labia and vagina have remained raw and painful all these months. I also now develop hard, painful, pea-sized lumps under the surface of my labia majora. My entire pelvic region is in fact quite sore and painful, and I have been having horrendous pelvic pain during ovulation. My coccyx tends to hurt, especially when I bend forward. There are however no, and never were, any blisters anywhere: just these discolored lesions and extreme rawness. Also to note is that, in the months before the initial outbreak event, I had visited several ob surgeons to talk about correcting a severely posterior cervix that has been prone to blocking my colon at times. These appointments were quite invasive in their exams… I wonder if I could’ve contracted something at an appt? Twice the doctor manually moved my cervix back into a (eventually) less painful place. Also to note: 15 years ago I had unprotected sex with a prior partner. After about two months I developed incredible, debilitating pain with urination. I went to several clinics (planned parenthood type) who could find nothing wrong, but the pain persisted on various levels for about ten years, often times forcing me to quit working. I never received antibiotics until I was treated separately for lymes disease, for there was never any infection to be found. I was suspected to have interstitial cystitis and one year ago had a procedure under general anesthesia that essentially filled my bladder with a solution for the purpose of distention and visualization. I can’t remember the name of the procedure, but I have had very little trouble with that type of pain since. Also to note, I have had two quite sick, although functioning, IUGR babies in the last nine years. I test negative for everything antibody-wise, but… What is going on?! Do I have herpes or something else? It has been suggested that my children could have suffered from a viral infection in utero, based on their presentation throughout childhood and no other diagnosis to be had, but many doctors have also said they think that a virus or maternal infection is not the culprit. I also have a history of being sexually violated in childhood and adolescence (sorry, I know that is unpleasant to discuss but possibly relevant) -is it possible that I contracted something so long ago and so do not have detectable antibodies after twenty, twenty five years?
Also to note: I did test positive for lymes and some parasites two years ago. The parasites were most likely from travel and were treated, but I remain in a subtropical region so the reinfection risk is always present. The lymes symptoms (mostly heart and valve related) have noticeably improved with treatment. I realize some of this information may be outside the herpes related box, but I cannot figure out a direction to take. I do not know if I have herpes, not herpes… Something else entirely? I do not wish to go to doctor after doctor when so many are less educated than someone in their position ought to be, and I have been tested for everything imaginable… Any ideas?

[Terri Warren]

You have given me a lot of information here and it is my task to sort out what is relevant and what is not.
So you had a positive culture for herpes so we know that you have some kind of herpes, right?
Now what we need to know is do you have HSV 1 or HSV 2? Have you had a type specific antibody test, and IgG test?

Terri

[Testing unsure]

i have had one positive culture, one negative culture and a negative blood test. I have had unrelenting symptoms for nearly eight months, including considerable neuropathic pain along my sacrum, coccyx and inguinal area. I provided so much information because I am thinking this may be something else, but no one that I have been to has been able to help me. I am also confused as to how I could’ve contracted herpes after 12 years in a monogamous relationship. I know that may sound naive, but for the sake of accurate diagnosis, I remain firm that it has been monogamous.

[Terri Warren]

So when you say that you had a negative antibody test, was it negative for both HSV 1 and 2? Were both done?
Have you had sex with anyone in your life besides this relationship? Has your partner been tested? Are you the receiver of oral sex in your relationship? I’m asking because it is possible that you contracted herpes from the mouth of your partner. Are you able to get a copy of the test results? I ask because it is confusing to me what you said about part of it being positive – that doesn’t make great sense to me. Are you able also to get a copy of your blood test results? I want very much to help you but I need a little more information about what exactly has been done and the results. Thanks so much

Terri

[Testing unsure]

this is all very confusing to me as well. All of the blood tests have come back negative. I have had two separate cultures and one was positive, but for which (HSV1 or 2) I cannot say, as it was unspecific. The positive culture was from my gynecologist office. She told me that it did not look like HSV but we culture anyway. My gyn then tells me it is HSV but which kind they cannot say, and also told me it was a new outbreak since my blood tests were negative. They actually told me that my partner must have been with someone else. When I insisted otherwise, I was told to see an immunologist since my body was not producing detectable antibodies. Another culture, taken three days later at my primary office, amidst worsened symptoms, was negative. My primary says it is not HSV, since the cultures and blood taken at their were negative. There is something clearly going on, but what it is and how to treat it is unclear to me. I feel that I have run out of options with consultants. I have had too many exams of late and do not get any new information when I go to seek it out. Why go back? . I cannot figure out what is accurate. This is why I provided abundant information in my initial post.– —If it is indeed HSV, why does it not go away (in all these months) and how could I have contracted it after 12 years with the same person? Could I have contracted it during a pelvic exam (at a busy teaching hospital staffed by students?) (hospital has a serious history of negligent malpractice)

[Terri Warren]

Are you able to get me copies of these results?
Here is what I am thinking: perhaps you have genital HSV 1 (which is why I asked you about receiving oral sex and I don’t think you answered me)
The screening test for HSV 1 misses about 1-2 out of 10 infections, so it could be the case for you. Also, if you do an antibody test too soon after infection, it will be negative because not enough time has passed to seroconvert. I don’t think you need to see an immunologist, just for this anyway.

Even if you have herpes, all of your pain does not sounds anything like herpes. I think you are dealing with two separate problems here, honestly.

Again, I would like to see the actual test results for blood and culture. Then, I believe I would recommend a herpes western blot as it is far more sensitive for HSV 1 than the screening test. Do you know if the antibody tests were IgG? How long after your sores developed did you have the last antibody test?

We are out of questions but I hope you will renew as we have more to talk about.

Terri

[Author]

Posts