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Avatar universal

chronic papercut sensation between buttocks- herpes?

27 y/o female. symptoms: papercut like sensations btwn buttocks for at least 10 months, prob longer (not just on anus but actually on the skin between my butt cheeks). once i notice it, I can often trigger it mechanically (by taking a wide step to the side), but it can also happen while I'm walking around or sitting. triggers seem to include going # 2, and working out. 4 clinicians have seen it which sounds like alot but they all saw it in different stages (eg i might not have had symptoms since multiple days prior, or milder symptoms). they all basically said it just looked a little red/irritated but nothing to worry about and advised to keep it dry. NP at planned parenthood said she could see healing fissures on both sides of the inside skin of my butt- she said she had seen herpes in all stages before and didn't feel it looked like herpes. she just said she thinks i have sensitive skin. Dont know when symptoms started bc i only started paying attention to it when i read you can have herpes in/on butt without having had anal sex. my history includes a lot of partners, almost always protected. i felt ok about it until recently for two reasons: 1) it was on both sides and i read recurrences rarely cross the midline, but then saw an article by EWH saying this thinking has now changed? 2) it happens more as a week in/week out thing- eg one month when i attempted to track it, i noticed the papercut sensation around 4/9, 4/22 and 4/25. id say i can go a few weeks or maybe a month without the sensation, but its typically around every week or two for maybe a day or two at a time (occasionally persists longer), so i felt it was too frequent for herpes. how valuable is tracking the actual sensation for estimating frequency? whenever I look, I do not see the papercuts that I am looking for but see other "scary things" that turn out to be nothing, so i've stopped looking. im so afraid to have a blood test, i fear itd be positive but this wouldn't end up being a real symptom.
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Avatar universal
OK, that's what i figured, but I was hoping you would have a perspective on that score, if you'd ever seen it before. I am tearing my hair out over this!!!
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239123 tn?1267647614
MEDICAL PROFESSIONAL
You've started a new thread with Dr. Hook.  Any further questions or comments must go there.
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Avatar universal
Hello again. if following up at this late date is illegal I apologize. I got a blood test and I am concerned the test failed. I did so at the prompting of Dr. Hook in response to a different paid question, but didn't know if I could still get your input as well... here is what I wrote to him:

"HSV-1 IGG 0.21 <0.90 ISR   HSV-1 INTERP Negative    Comments:   No IgG antibodies specific to HSV1 detected.  Patient ispresumed to not have had a previous exposure to HSV1 throughinfection.  Such individuals are presumed to be uninfectedwith HSV1 and to be susceptible to primary infection. ------------------------------------------------------------------------------  


HSV-2 IGG 0.00 <0.90 ISR   HSV-2 INTERP Negative    Comments:   No IgG antibodies specific to HSV2 detected.  Patient ispresumed to not have had a previous exposure to HSV2 throughinfection.  Such individuals are presumed to be uninfectedwith HSV2 and to be susceptible to primary infection.

does the 0.00 seem suspicious, liek the test failed? or am i jsut looking to be infected? ha....."

he said it was a little odd but he'd trust it. however, i have seen him grace and others say that 0.00 is an impossible result, as if the lab failed the test. do you have any persepctive on getting that 0.00 result?
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Avatar universal
Thanks for your time!!!
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
I would recommend testing as soon as symptoms start.  The earlier a PCR is done after onset of a lesion, the more reliable it is.  Even before an open wound appears, if there is redness and an irritated appearance, the PCR result will be valid.

However, I don't really see a need for yet another test.  Given the current negative PCR result plus all the other evidence aginst herpes, as discussed above, I would consider the case closed -- you don't have herpes. But if you feel you need still more evidence, a blood test would the the logical next step.

If sometime in the future you have a positive test for HSV (either blood or PCR), feel free to let me know.  Other than that, this thread should end; I won't have any other advice.
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Avatar universal
i had a mild paper cutsymptom (very mild, but still did happen) and got a PCR swab the next day. the result was negative. The same NP who examined me initially took the swab. said that she could see a differentce from the healing fissures she saw intially- when she did the swab, one of them was reddened, though not raw. She offered to do a second swab in the future if I have more severe symptoms again...if you wouldn't mind addressing my question above I'd appreciate it, or else I guess I can just go in the next day after feeling a STRONG papercut sensation?
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Avatar universal
sorry but i have one more practical question. i know you're supposed to get swab within 1-2 days of a potential outbreak. in this case, should i wait till a certain # of days have passed with without the sensation, then go in as soon as i feel it next (and if so, what would be a good of number of days to go "sensation-less"), or just wait till it feels particularly strong? i feel it's hard to know when its newly occurring since it's a chronic issue. i appreciate your input.
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239123 tn?1267647614
MEDICAL PROFESSIONAL
No offense taken.  But FYI, Dr. Hook's editorial comments on research (by colleagues of mine) concerning mostly asymptomatic viral shedding in people with HSV-2, which indeed often involves many areas of the genitals, both sides.  But my comments above still hold for symptomatic recurrent outbreaks.  Perhaps more to the point, there has never been any difference of opinion about the fact that some recurrent outbreaks occur at or near the midline; and that those oubreaks often spread to both sides of the midline.

For more dangerous conditions, like HIV, such routine testing -- everyone should be tested at least once -- is indeed the recommendation of all public health agencies.  The problem with doing that with herpes is that the blood tests just aren't good enough -- lots of misleading results.  Such misleading results are uncommon in some settings, but are quite frequent in people without symptoms and with no particular risk.  So most experts agree that routine testing of asymptomatic people isn't a good idea and should be limited to people with symptoms or at particularly high risk.

This is a fine place for commentaries like this -- but they can't go on indefinitely.  Let's pick this up again if and when you have a PCR result to report, or if other new information comes to light.  In the meantime, best wishes.
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Avatar universal
Well thank you for the input, I honestly appreciate it!  I will specify the PCR swab at Planned Parenthood.

I hope I didn't offend you- when I mentioned the debate, I was referring to the general sense I've gotten on this forum, and from google in general, that recurrences are almost always limited to one side of a person's body. Then I saw an article by EWH (http://jid.oxfordjournals.org/content/201/4/486.full)..so I wasn't sure if this means the school of thought is changing, or if you would consider these exceptions that you've always pointed out when stating a general rule.

I know this isn't the place for this commentary, but I really wish doctors would either test everyone or no one. I hear what you are saying about the fear of the test being rather ridiculous. but it seems so unfair to have knowledge that others dont have...a potential dating partner who might say "oh well, i dont have that so we cant date" when they actually might!especially when you can't really do much with it.
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239123 tn?1267647614
MEDICAL PROFESSIONAL
There is no debate.  Most recurrent herpes outbreaks are in more or less the same location (give or take an inch or so), usually one side or the other, and the same side each time.  But there are exceptions, with some people having outbreaks in different locations or on different sides (I never said otherwise), and midline outbreaks also occur.

The frequency you describe is more frequent than I have ever seen in confirmed herpes.  If it happens, its very rare.  Individual outbreaks rarely if ever last more than 2 weeks, usually 7-10 days.

If you have a swab test for HSV, make sure it's a PCR test, not culture.  The latter misses HSV more often.  As for other tests, I have nothing to recommend.  Assuming the HSV test is negative, as I expect (the reason for testing is for reassurance, not because of high suspicion of herpes), I would recommend that your next step be to request referral to a dermatologist to consider possible causes.
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Avatar universal
Sorry, also meant to add that I'm open to the swab. The provider offered that suggestion too after I woudln't stop harping on herpes, so it's just a matter of getting there as soon as I feel this sensation next. Should I request swabs for other things too?
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Avatar universal
Do you have a thought about the midline debate?

Also, in terms of frequency: Lets say I have the sensation June 1. If I have it again 3 weeks later, that essentially rules out herpes (or could it be the same recurrence)?
Helpful - 0
239123 tn?1267647614
MEDICAL PROFESSIONAL
Welcome to the forum. Thanks for your question.

This really doesn't sound like herpes.  As you suggest yourself, the pattern of recurrent symptoms is too frequent; herpes rarely if ever recurs more often than once every 4-6 weeks, with absolutely no symptoms between outbreaks.  The location is a frequent one for other kinds of localized inflammation, such as a superficial fungal infection or other dermatologic problem.  Although herpes could cause a fissure-like lesion, that would usually start as a blister (or cluster of blisters) before it becomes similar to a fissure or "paper cut".  Finally, the opinion of at least two experienced providers after directly inspecting the lesion also argues against herpes.

Should you be tested?  On one hand, I don't have much tolerance for avoiding testing for fear of the result.  It isn't the test that gives someone herpes (or cervical or breast cancer if you consider pap smears and mammograms).  When people delay testing for fear of the result, anxiety and stress decline when it's finally done, even with a positive result.  The uncertainty usually is more stressful than knowing the bad news.

On the other hand, a positive blood test for HSV probably would mean you have asymptomatic herpes plus another explanation for your symptoms.  Instead, I would recommend a PCR test for HSV from the lesion.  It should be done with a fresh, new lesion -- within a day or two of onset.  I would expect it to be negative.

I hope this has been helpful.  Best wishes--  HHH, MD
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