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Wondering Your Opinion
Hey all,
About two years ago I went through a very stressful time where a doctor misdiagnosed me as having herpes. You can check the history here, if you're so inclined:
http://www.medhelp.org/posts/Herpes/Not-sure-if-this-is-herpes/show/1894552#post_8827068
Anyways, I've been having non-stop rashes under my foreskin for that past two years and my mind just isn't letting herpes go since the doctor that misdiagnosed me mentioned it. I can even say comfortably that the "little blisters" she was seeing were actually Fordyce spots (they appear as white spots underneath skin surface), which I have many of and are clustered in tight groups.
The rash typically comes and goes within 24-48 hours after appearing and has responded well to Lotriderm (powerful corticosteroid in there), Ketanocazole, Lamisil. I have had two IGG blood tests come back negative (the most recent being 6 months after last exposure) and multiple doctors and a dermatologist try to reassure me I have nothing to worry about. The blood tests were the 1/2 combination type, but that's all that's available to me in Canada.
I worry because the rash is recurrent. I'd say it comes and goes every 2-4 weeks, lasting 1-2 days each time. Never any pain, blisters or ulcerations.
Anyways, the reason I write this post is because I want to start dating again, but because this experience has been so emotionally scarring, I don't know what, if anything, I should say to the person I'm dating. Obviously I wouldn't bring anything up on the first date, but I feel this experience has impacted me in such a profound way and part of me still doubts my negative status even though a lot of my symptoms point to some other issue.
Any help, advice or reassurance would be greatly appreciated.
Duey
About two years ago I went through a very stressful time where a doctor misdiagnosed me as having herpes. You can check the history here, if you're so inclined:
http://www.medhelp.org/posts/Herpes/Not-sure-if-this-is-herpes/show/1894552#post_8827068
Anyways, I've been having non-stop rashes under my foreskin for that past two years and my mind just isn't letting herpes go since the doctor that misdiagnosed me mentioned it. I can even say comfortably that the "little blisters" she was seeing were actually Fordyce spots (they appear as white spots underneath skin surface), which I have many of and are clustered in tight groups.
The rash typically comes and goes within 24-48 hours after appearing and has responded well to Lotriderm (powerful corticosteroid in there), Ketanocazole, Lamisil. I have had two IGG blood tests come back negative (the most recent being 6 months after last exposure) and multiple doctors and a dermatologist try to reassure me I have nothing to worry about. The blood tests were the 1/2 combination type, but that's all that's available to me in Canada.
I worry because the rash is recurrent. I'd say it comes and goes every 2-4 weeks, lasting 1-2 days each time. Never any pain, blisters or ulcerations.
Anyways, the reason I write this post is because I want to start dating again, but because this experience has been so emotionally scarring, I don't know what, if anything, I should say to the person I'm dating. Obviously I wouldn't bring anything up on the first date, but I feel this experience has impacted me in such a profound way and part of me still doubts my negative status even though a lot of my symptoms point to some other issue.
Any help, advice or reassurance would be greatly appreciated.
Duey
I agree...I think the doctors would more likely do the tests if they tested individually for HSV 1 (which is usually, but I understand not always, oral) and HSV 2 (which is almost always genital). However, they test for types 1 & 2 at the same time. Since ~57% of the population has oral herpes, it makes sense that about %50 of the people taking the blood test would test positive since we can only take the combination test. If that test comes back positive then they do a type specific HSV 2 test (all IGG, no IGM...we at least have that right in Canada as I've read the stated pitfalls in the actual testing manual).
Due to the tiered testing system and the sheer number of people that would test positive on the first test, I'm sure the health care system doesn't want to instill fear, panic and anxiety. It took a lot to convince the system to test me the first time when I was in the highest panic mode after hearing the first doctor misdiagnose me with herpes. The second time I was tested, the nurse at the STD clinic was impressed. She said I must have had a silver tongue as most doctors wouldn't even consider a second test. It would be for the same reasons STD panel tests in the USA don't routinely screen for herpes; the psychological impacts of the disease are far far greater than the physical ones in most cases.
My logic regarding "no one deserves this disease" was misunderstood. Compared to many conditions, it is benign. However, having been misdiagnosed, I went through the medical system as "guilty until proven innocent" if you know what I mean; I more-or-less did that to myself, I suppose. For 6 months I felt the psychological sting of being "positive". What I really meant to say is that the stigma with this condition is overwhelming, and no one deserves to feel that way. I meant it in a compassionate way...I'm sorry if I came across differently.
Due to the tiered testing system and the sheer number of people that would test positive on the first test, I'm sure the health care system doesn't want to instill fear, panic and anxiety. It took a lot to convince the system to test me the first time when I was in the highest panic mode after hearing the first doctor misdiagnose me with herpes. The second time I was tested, the nurse at the STD clinic was impressed. She said I must have had a silver tongue as most doctors wouldn't even consider a second test. It would be for the same reasons STD panel tests in the USA don't routinely screen for herpes; the psychological impacts of the disease are far far greater than the physical ones in most cases.
My logic regarding "no one deserves this disease" was misunderstood. Compared to many conditions, it is benign. However, having been misdiagnosed, I went through the medical system as "guilty until proven innocent" if you know what I mean; I more-or-less did that to myself, I suppose. For 6 months I felt the psychological sting of being "positive". What I really meant to say is that the stigma with this condition is overwhelming, and no one deserves to feel that way. I meant it in a compassionate way...I'm sorry if I came across differently.
Then you tell them it is your body and it is the express wish of yourself and potential sexual partner to get this testing done for the ongoing protection of your joint health. I'm not sure a doctor could or should resist that logic.
You have done all a reasonable person could expect of you to eliminate herpes as a cause here. More than most people ever do entering into a sexual relationship.
I'm not sure how your logic that no one deserves the disease really stacks up. The bulk of the population has it. You yourself may get it one day from a HSV1 positive partner for example. For many it is simply a fact of life, a virus that has formed a symbiotic existence with humans.
You have done all a reasonable person could expect of you to eliminate herpes as a cause here. More than most people ever do entering into a sexual relationship.
I'm not sure how your logic that no one deserves the disease really stacks up. The bulk of the population has it. You yourself may get it one day from a HSV1 positive partner for example. For many it is simply a fact of life, a virus that has formed a symbiotic existence with humans.
Okay, that's what my dermatologist and many others have said too. Symptoms are too frequent, resolve too quickly and are not displaying the classical signs. Plus, multiple visual inspections of the rashes by 3 or more doctors and 2 blood tests and 1 swab have cleared me...I need to accept this - this is hard to do and I know Terri is very much aware of this psychological problem with herpes.
Please forgive me for my paranoia about this; my fears stem more from having a missed diagnosis and then unknowingly passing something on to another person; however unlikely that scenario may be. No one deserves this disease and it certainly doesn't warrant all of the stigma attached to it.
I agree with the mutual testing idea. Do you have any tips on how to bring up a conversation like this? I feel like I may not have the confidence to get it across in the right way. I do have printed results from my previous tests. Also, based on a response I got from Dr. Hook, the concern with the HSV IGG 1/2 combo tests is not a sensitivity issue (so negative results can be trusted), it's the specificity issue that results in false positives. So you may not be surprised to understand that I don't really want to expose myself to receiving a false positive result by doing further testing. How do you suggest I tackle that issue? It's surprisingly hard to convince a doctor to give a herpes test where I live; having had two negative tests and no subsequent partners since the last test, I don't think a doctor would give me another anyways.
Please forgive me for my paranoia about this; my fears stem more from having a missed diagnosis and then unknowingly passing something on to another person; however unlikely that scenario may be. No one deserves this disease and it certainly doesn't warrant all of the stigma attached to it.
I agree with the mutual testing idea. Do you have any tips on how to bring up a conversation like this? I feel like I may not have the confidence to get it across in the right way. I do have printed results from my previous tests. Also, based on a response I got from Dr. Hook, the concern with the HSV IGG 1/2 combo tests is not a sensitivity issue (so negative results can be trusted), it's the specificity issue that results in false positives. So you may not be surprised to understand that I don't really want to expose myself to receiving a false positive result by doing further testing. How do you suggest I tackle that issue? It's surprisingly hard to convince a doctor to give a herpes test where I live; having had two negative tests and no subsequent partners since the last test, I don't think a doctor would give me another anyways.
Yes I read the other posts. Herpes would not continuously appear with the kind of symptoms you describe.
No this is not a disclosure that needs to be made when having the STD discussion. It may even be that mutually testing is a good idea before sex with a future partner. With a serious partner that is going to include unprotected sex then discussing your persistent issues with fungus is a reasonable thing to do.
No this is not a disclosure that needs to be made when having the STD discussion. It may even be that mutually testing is a good idea before sex with a future partner. With a serious partner that is going to include unprotected sex then discussing your persistent issues with fungus is a reasonable thing to do.
Thank you for the reassurance Fleetwood. The Fordyce spots don't bother me at all; been there since I was 12.
For some reason my dermatologist isn't convinced I'm dealing with fungus anymore. For sure he said that could have been what I had the first couple times earlier on in my problem, but as I switched to use the Lotriderm earlier on with my issues, which has betamethasone (up to 150 times more potent than hydrocortisone), it would work wonders on the rashes. As long as I was using the cream the rashes would be gone. As soon as I went off the cream I'd start to get the rashes within 1-4 days again.
The way I used the Lotriderm was I started at the recommended two weeks, then the next time 3 weeks, the next time 4 weeks and finally up to 5 weeks of consecutive use (~3 months). When I finally got in to see my dermatologist he took me off the corticosteroid and put me on ketanocazole and Lamisil, which both also worked - he was concerned my skin had become reliant on the corticosteroid, which makes sense as the frequency of the rashes between treatment increased; I was likely experiencing corticosteroid withdrawal between treatments.
The dermatologist thinks my skin has a sort of "memory", so any irritation, whether it be chemical or mechanical or even biological (thinking fungus), it gets reddened due to the sheer number of blood vessels in that area. Perhaps this is akin to muscle memory?
I'm also not sure if you had time to read through my history, but my symptoms don't sound horribly concerning? I guess I should put that one to rest as Terri and Dr. Hook weren't concerned. I've been asking my doctors about circumcision, but none seem to want to go there with me.
And sorry for the length of my post, but you don't think I need to bring any of this up with my future partner? It has unfortunately changed me, for both good and bad.
For some reason my dermatologist isn't convinced I'm dealing with fungus anymore. For sure he said that could have been what I had the first couple times earlier on in my problem, but as I switched to use the Lotriderm earlier on with my issues, which has betamethasone (up to 150 times more potent than hydrocortisone), it would work wonders on the rashes. As long as I was using the cream the rashes would be gone. As soon as I went off the cream I'd start to get the rashes within 1-4 days again.
The way I used the Lotriderm was I started at the recommended two weeks, then the next time 3 weeks, the next time 4 weeks and finally up to 5 weeks of consecutive use (~3 months). When I finally got in to see my dermatologist he took me off the corticosteroid and put me on ketanocazole and Lamisil, which both also worked - he was concerned my skin had become reliant on the corticosteroid, which makes sense as the frequency of the rashes between treatment increased; I was likely experiencing corticosteroid withdrawal between treatments.
The dermatologist thinks my skin has a sort of "memory", so any irritation, whether it be chemical or mechanical or even biological (thinking fungus), it gets reddened due to the sheer number of blood vessels in that area. Perhaps this is akin to muscle memory?
I'm also not sure if you had time to read through my history, but my symptoms don't sound horribly concerning? I guess I should put that one to rest as Terri and Dr. Hook weren't concerned. I've been asking my doctors about circumcision, but none seem to want to go there with me.
And sorry for the length of my post, but you don't think I need to bring any of this up with my future partner? It has unfortunately changed me, for both good and bad.
You should believe that you are negative for genital herpes. Although not necessarily common, you do appear to have issues with fungus under your foreskin and possibly fordyce spots.
You can date with confidence with the knowledge that you have done more that most people ever do to eliminate the possibility of herpes.
You can date with confidence with the knowledge that you have done more that most people ever do to eliminate the possibility of herpes.
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
