What could this be ?

[ShayW10]

I have had the same sex partner for the past 11 years. Three years ago we broke up and I had unprotected sex (for 2 minutes lol) with someone else. A year later my body broke out in a rash that doctors and dermatologists diagnosed as “erythema nodosum”. I was on a anti-inflammatory “naproxen” for a wisdom tooth infection at the time and they believe this rash was caused by an allergic reaction to the medication. I had large swollen raised bumps all over my body. I even had two sores on my labia. The sores were swapped and tested for HSV which came back negative. (They were swabbed within 24 hours of appearing) I also had blood taken and tested for HSV which also came back negative. My doctor wanted me to get another blood test in 6 months time, incase this was a “new infection” and hadn’t built up antibodies yet. I knew this wasn’t a new infection and would have been in my system for a year at that point but I waited and in 8 months time (just to be certain) got another blood test that also came back negative. It has been 16 months since everything and I have now been dealing with red dots in my groin area that come and go as my scrub pants rub there for the past 5 months. I’ve also been getting very itchy under where my bum cheek fold and I expierence similar bumps sometimes they are small or look like mosquito bites and are sometimes even gone the next day. They don’t hurt to poke or pick at but they do get irritated when walking or if I go to the gym and sweat i get a burning sensation on the rash. When I walk it feel like my skin is cracking! Sometimes they scab very minimal, sometimes they go very dry and show up as dry patches. I have been to three different doctors who all tell me it doesn’t look like herpes but also diagnose me with different things “folliculitis” “psoriasis” “stress rash” from guilt. After about a month and a half of having this rash I started to experience leg pains. Sometimes in my thighs, sometimes in my knees, shins, ankles and even feet. It feels achy/ or sometimes sharp. My buttocks feels achy/or as if I’ve pinched  a muscle. my doctors did more blood work and my vitamin d and b came back very low. I know this can also cause those symptoms. But the leg pain really does seem to come back with the rash. I’m starting to feel like my doctor thinks  im crazy for going in for the same thing and stressing it’s herpes. I feel a burning sensation in my vagina on and off and have felt it burn to pee twice in these past 5 months which also isn’t out of character for me as I have endometriosis and have been prone to UTIs. Does this sound like anything to anyone ? I have been reading horror stories online about symptoms being so minimum or herpes testing coming back wrong !

[auntiejessi]

I'm sorry you're dealing with so much. Endo alone is terrible, much less everything else.

Do you know what kind of herpes blood tests you had? Can you get copies of those results? It's important to know if they were IgG or IgM.

I had endo for a really, really long time - from the time I was 12 to when I got a hysterectomy at 33. Women with endo get loads of different symptoms, but it doesn't cause rashes (as you know). A couple of years after my hysterectomy, I got hsv2, and I've had it for 15+ years. Herpes symptoms can vary, but it wouldn't cause all that you're experiencing.

Other than the initial cultures that came back negative, have you had any other cultures or any biopsies?

And what is a stress rash from guilt? Do you feel guilt from something? You don't have to share what, but is that even a thing?

I'd wonder if you're allergic to something - laundry detergent, body wash or soap, some fabric - you mention scrubs, and I wonder what material those are. Are those professionally laundered or do you wash your own? Do you notice any improvement on your days off or even better on vacation?

I'd also wonder if your pain is coming from a pinched nerve or disc injury. You could also have endo on a nerve that is causing problems.

I know how frustrating it is to have pain and not know the cause. I hope we can help figure this out for you.

[ShayW10]

Thanks so much for the reply ! I have copies of my results and had both blood tests IGM and IGG what is the difference ? And then a swab as well.

Sorry I worded that wrong, ever since the rash I had three years ago I constantly stress that something is going to happen again, another body rash or have a herpes outbreak. I constantly look for things. My boyfriend who I was with for 11 years and I got back together shortly after our breakup and still to this day he doesn’t know i was with someone else. So my doctor always says if I’m constantly looking for things I will eventually find something or stress myself out enough that I’m probably giving myself the rash lol that’s what I meant by a “guilt rash”.

I’ve wore scrubs for years and never had this problem, and i launder them myself. I tried switching my detergent but same thing is happening. I know the spot where I currently have the red bumps would always get really itchy after I shaved. Improvement on my days off  for sure  as I don’t have something rubbing that area. But I was on vacation last week and was completely fine all week! Minus some leg and hip pain.

I do have scoliosis as well and question if the leg pain is from that. But I guess we will see after my Endo surgery next week ! My doctor said “lots of rashes can cause leg and muscle pain” and didn’t seem to concerned if the rash was what was causing my leg pain.

[auntiejessi]

Ok so first - the difference in IgG and IgM is that IgM is supposed to look for new infections, and IgG looks for established infections. "New" infections means that the tests looks for a certain antibody the body makes initially in response to an infection. For many infections, the IgM test works great, but for herpes, the test often fails. It gives as many false negatives as it does false positives, so it's not recommended that adults get that test.

The good news is that you had the IgG, and more than enough time had passed - and good for you for advocating for yourself. It can take up to 4 months to develop the IgG antibodies, and way more time had passed than that, so your tests are conclusively negative.

It's interesting that you were on vacation last week, and were fine, minus the leg and hip pain. Try to think of things you do for work that you didn't do last week - maybe it's a lotion you use, something you eat at work but didn't eat last week - I mean, it really could be anything.

The leg and hip pain could be from scoliosis, but you should address that with your doc who treats you for that.

The stress rash - you can let it go now. It's been years, and whatever is causing your symptoms isn't herpes. But guilt is a huge thing, and can do a number on our bodies. You were broken up. You owed your boyfriend nothing. I know that is easy for me to say, and I have no emotional investment in your relationship, but it's been years. It's time to let that go. You have enough going on - endo, scoliosis, pain, etc. - don't add needless guilt to it.

Good luck on the endo surgery. Let me know how you're doing. :)