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Nami3

New Diagnosis, Longtime Knowledge of Virus

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Nami3

Hi everyone, 

I apologize for the length of this post in advance, but I wanted to share my story. Questions at the end.

Last Christmas Eve, I became very itchy down below out of nowhere. At first, I thought it was just hair regrowth as I had recently waxed, but after a while, I realized the itch was a little too intense and widespread to be regrowth. Over the course of the evening (Merry Christmas to me!) I kept escaping to the washroom to examine myself—but found nothing. Over the course of the next few weeks, my labia became inflamed and reddened (not overly so, but noticeably) and I just had a general feeling of malaise down below. No lesions whatsoever (I would inspect myself several times daily with a 10x magnification mirror and flashlight). I also started developing what I could only describe as "nerve pain" in my right leg. It did not feel like pain from trauma. There had been no trauma. The leg pain disappeared after about a week, and the general "malaise" (discomfort wearing underwear, etc.) disappeared after about a month and a half. Yes, a month and a half! I went on to feel random itchiness, tingles, "electric shock" type feelings sporadically (but daily) for about another 4 months. Over the subsequent four months, I had noticeably fewer symptoms, though, there were one or two occasions where out of nowhere, it felt like I had developed a hundred tiny paper cuts between my butt cheeks (there was nothing there)—but what an uncomfortable sensation. I also started to experience intermittent lower back pain. To this day (one year later) I still cannot wear panties as they irritate my skin down below. (I'd like to mention that none of these symptoms, save for the paper-cut buttcheeks, gave me more than like a 3/10 pain. But the discomfort caused cannot be underestimated). 

The very first week this all started happening, I had concluded after doing much research that I must have Herpes. I had recently done a full STI panel (not including Herpes) and had only been with one person since (my boyfriend of several months). We both went to get re-tested and came back negative for everything. I asked several doctors for a Herpes test and they declined, telling me that if I didn't have lesions, I didn't have it. I saw numerous dermatologists hoping they would diagnose my itchy/sensitive skin as something else. My gyno recommended I see a psychologist because she believed me to be imagining symptoms out of anxiety. My boyfriend, who continues to have zero symptoms, thinks I'm being silly and that I'm a hypochondriac. I even went as far as to write to Dr. Terri Warren and Dr. HHH Hansfield—well-known experts in the field with online presence and accessibility— to inquire about my symptoms. Both told me that my symptoms didn't line up with a Herpes diagnosis. 

Fast forward to this week, almost exactly one year from the first suspected episode. I was taking a walk outside and listening to a podcast when I got a sudden must-scratch itch in one of the folds of my labia. That same area continued to itch for a few days, but I carried on with my walks, workouts, etc. The other day, I was lying in bed and the itch became so annoying that I decided to go apply some lemon balm and DMSO (yes, I have all of the supplies because deep down, I knew)—and that's when I saw it. A little open lesion. Not deep, not painful. Just slightly itchy and most definitely not a pimple. Not a blister ether—just a tiny patch of open skin. Unmistakably Herpes (for someone who has done as much research as I have). 

TL;DR 

There are a few observations I'd like to make and questions I'd like to ask: 

(1) I feel like I was traumatized by the prospect of finding out I have Herpes for so long that now I can't even cry or really be sad about it. I feel like I've made peace with it. I'm a super happy and jovial person and nothing much has changed about me in the past year even though I suspected I had it all along. 

(2) Why is it that doctors, but especially so-called Herpes "experts" cling to Herpes dogma so hard? Why do they refuse to acknowledge even the possibility that there are a wide variety and breadth of symptoms experienced by sufferers that might be linked to Herpes (even though they aren't "textbook" symptoms)? I was able to diagnose myself by reading through testimonials on the internet—real symptoms had by real people. There are enough people experiencing weird stuff with this virus that I think it definitely needs to be studied more seriously and education of physicians on the subject needs ramping up/a major update! 

(3) Sincerely, how much has your life changed since being diagnosed? Is your sex life really that different? How's oral sex? Still on the table?

(4) How much alcohol can you realistically consume before experiencing an outbreak (I rarely drink, but sometimes when I go out I like to have 2-3 drinks). 

(5) Do I really have to live the rest of my life acting like a have a peanut and chocolate allergy? Peanut butter is honestly one of the best things in life! 

(6) What are your top 3 supplements for helping keep outbreaks at bay? 

(7) For those who have a partner and have had to tell them, how did that go? 

If you've made it this far—thank you so much, I deeply appreciate it. Especially since I know you've probably come across countless other posts just like this one. Thank you. <3 

 

 

Edited by Nami3

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WilsoInAus

Hey no problems, great post. What you describe could be something along the lines of an entrapped pudenal nerve or pelvic floor dysfunction. Have you been through all these options with your doctor?

On some of your questions:

1. I don’t know why this happens, but like many things in life, fears are often way worse than reality.

2. This is not hanging together rationally. Reading Google is not a diagnosis. How is it possible to diagnose herpes with no lesions to swab and negative blood tests? Of what value is there to focus on low probability events when you haven’t explored the higher probability ones. That’s all the doctors are encouraging you to do.

3. The only difference is what you make it. What do you want to be different?

4. Food and drink are rarely triggers on their own. Stress is by far the more universal trigger.

5. Foods are also rarely triggers just be healthy. Healthy people eat a balance of all things, including nuts!

6. There are none, just what makes you generally more healthy in yourself.

7. What do you have to disclose?

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Nami3

Hi @WilsonInAus, thanks so much for the quick response! I suppose there are a few key details I've left out here—I do (currently) have a lesion on my right labia. I've also been getting a 'pimple' at the base of my right butt cheek, recurring, for about a year, perhaps longer. It always shows up in the exact same spot. Sometimes it's tiny and other times it's bigger. It never bursts or ulcerates, but it does hurt to sit on. I dismissed it for the longest time because it doesn't look like Herpes at all. It looks quite like a normal pimple. But the recurring nature of it, and the fact that it always shows up in the same spot, give or take an inch, has caused me to start to worry about it—but only in the past month or so. Prior to that, I just dismissed it as a pimple. When I said I had no lesions, I meant the kind you think of when you think of Herpes: blisters, ulcers, open sores, etc. That 'pimple' was finally swabbed earlier this month. Alas, positive. 

I also want to clarify that I didn't say I had a negative blood test; I had said there was no Herpes blood test done. Bloodwork is my next step here. 

I'm glad to hear that foods, alcohol, etc., seem only to work as 'triggers,' for the most part, when coupled with stress. 

With regard to your mention of the entrapped pudendal nerve or pelvic floor dysfunction: anything's possible, of course, and I wouldn't want to rule anything out without properly exploring the possibility. It just seems I get nowhere at all with physicians. I've seen more doctors in the past year than I've seen in my whole life, and none have been of much help, unfortunately. I wanted to believe, for so long, that this was something other than Herpes. It just seems like the symptoms all started at once, and that the catalyst was a Herpes-like episode, minus the lesions (which isn't uncommon). 

Of course, I know that you can't diagnose yourself via Google. But I had a strong suspicion, based on research I had done, that turned out to be true in this case. I'm not claiming to know all of the answers and I wouldn't recommend anybody self-diagnose and take it as fact. That's also why I proceeded to get tested to check my suspicions. The reason I even tried to self-diagnose in the first place is that I felt I had little support from my doctors. 

Thanks again for reaching out and responding. It means a lot! 

Ps. You're certainly right that the fear of things is, far more often than not, much worse than the reality. :)  
 

 

Edited by Nami3

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emz

Hi @Nami3 

I had a similar build up of symptoms to you which lasted roughly 10 weeks between my exposure and my first outbreak. Odd random itches, nerve pain etc. I too had sort of made peace when i got the diagnosis as I'd already been through the trauma, sadness and fear during those 10 weeks and I although I was disappointed that I caught it so easy, I had already accepted it ( and researched a lot!) 

I can't answer all your questions as it's early days but I really don't think life has to change that much; stick to your original life goals and maintain a healthy balanced lifestyle :)

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