It's so bad

[Fmluck]

Little background here.  Fresh out of long term relationship (8 years). Hadn't had sex in two years.  Really hit it off with Tinder guy.  Tinder guy gives me herpes then ghosts me when I tell him.

 

I caught the virus July 20th, broke out in "razer rash (5 sores) July 22nd.  Went to Dr. July 23rd and asked to be tested for h.  They laughed at me and told me it was razer rash but I knew it wasn't.   Test came back....negative for chlamydia and gonnhorea. WTH she friggin tested me for the wrong std.  Went back again on the 26th and asked to be tested again.  Blood work and scrape came back negative. July 30th is when the real party started.  I overnight went from 5 sores to 30.  Started Valtrex. 1000mg twice a day.  Since then I have over 70 blisters.  Some small some big.  All excruciating.  Yes.  Seventy. Basically everywhere I would shave is a blister as well as down my thighs.   I'm also on lysine, vit d and c, coq10, and zinc.  I'm done the Valtrex now and still getting new blisters every day.  I'm feeling pretty distraught. Any advice, similar stories, or words of encouragement welcome. 

Thanks in advance

[Flowerteacher55]

Hello,

First, I am so sorry for the emotional and physical pain you've had to experience and are still experiencing. You don't deserve this at all. 

Please know this isn't your fault. You are not dirty. You are not bad. You are clean. You are pure. You are beautiful. You are good. 

It isn't okay that you had such negative interactions with the medical professional you encountered. No one ever should be mocked for asking questions and taking charge of their own health. 

The reason why your blood test came back negative is because you took the IgG test too soon. For the antibodies to show up in your blood you need to typically wait 12+ weeks.

Swab tests only are super reliable if the sores are swabbed within 48 hours of appearing, and even then they are prone to produce false negatives, as if a doctor swabs too little of the virus or swabs an already healing/healed sore, the test comes back negative. 

It is great that you are on the vitamins, as they can help boost your immune system, and lysine helps with increasing the ability for the sores to heal. It's terrible that your sores increased in number at the degree which they did. You must be in such pain, I cannot even imagine. If it hurts to urinate, putting ice water in a spray bottle and listing it onto your skin can help. Ice packs also can help, as your body can't feel pain and temperature at the same time. 

Are you experiencing any other symptoms, such are neurological pain, tingling, fever, swollen lymph nodes, or headache? 

How many days have you been on Valtrex for? It does take a little bit for the sores to go away and start the healing process, especially when you couldn't start the medicine until the dozens of sores appeared. Usually, antivirals help suppress the virus when as out real strikes to prevent it from getting to the giant huge level yours is at. However, first outbreaks are usually the worst and most painful, since you body isn't used to it. Future herpes outbreaks are usually less severe and are smaller. 

Again, I am so sorry for your pain. Please feel free to vent on here and ask questions. We are all here to support you. 

I am sending blessings and prayers your way. 

You are not alone ❤️

-- Grace

 

[Fmluck]

Thanks for your response Grace. 

It doesnt hurt to pee, because i have no sores on the inside (thank god for small favors am i right?) However, the whole area is so swollen with inflammation it is unrecognizable.   Not even after childbirth was i this swollen.   So its hard to pee because of the swelling, but doesnt sting as in have no sores in the line of fire.  

 

I had fever, migraine, diarrhea, tingling, itching etc.  The only thing that i dont have anymore is the fever.   The itching and pain is unreal.  The only relief i have found is applying pure high grade lavender to the sores before bed. 

 

I did a 10 day course of valtrex.

 

I do get cold sores on my mouth.  Far and few between since i have had them since i was a kid.  Therefore i am kind of shocked this outbreak is getting so bad as i figured i would of had some antibodies!

 

I am immune compromised unfortunately.  I expect that isnt helping my case.  As well as about to start a new cycle.  Double blow. But still....  i have 74 blisters at various stages....  thats a lot even for a first outbreak is it not??  Somethings gotta give.  As if this isnt hard enough mentally.  My herpes are on steroids.  

[Flowerteacher55]

Hello! 

Oh my goodness, that is terrible 😢. I am so sorry! 

The physical symptoms you mentioned are very severe. Have they gotten better, worse, or have they stayed the same while taking the 10 day course of Valtrex? 

The swelling also sounds severe. Is the skin hot to the the touch? Is it throbbing at all? Or is the area just swollen and red? 

Being immunocompromised and having herpes can really affect the body and cause more extreme symptoms. Depending on the type of illness you have (you can keep it private, it's ok!! ☺️), The HSV could really cause some issues, or even could require IV antivirals to reduce the symptoms and help you heal. If you doctor knows you are immunocompromised, they DEFINITELY should have taken this matter much more seriously. That is just negligent! 

I am a huge fan of lavender and it's holistic properties! I grow some in my garden and it makes me very happy to even just look at. I'm glad it is soothing to your sores. 

If you think they would be more helpful (they probably would be!) You could go to Planned Parenthood and see a doctor or nurse there. They see STIs more regularly and would probably be much more sympathetic and helpful, and provide better guidance on what the best steps should be taken to help you. 

Yes, 74 sores is definitely a lot for a first outbreak. My first outbreak of Genital HSV-1 was probably about 12-24 sores, some externally on the outer labia and some internally in the vaginal cavity. It was weird, I woke up one morning and had like dozens of sores that were red and dimpled, then some went away and other started to go through the healing stages of oozing, crusting, scabbing, and eventually new skin growth. The factor of being immunocompromised probably has something to do with the high number of sores and terribly severe symptoms. Have you had a fever for over a few days? If so, definitely check back in with a doctor, as all this stress on the body isn't good and can be potentially fatal.

I'm here for you! ❤️ Hang in there. I'm sending prayers and healing vibes your way 🌼!

 

[Neverwouldathought]

So horrible that scumbag on tinder did that to you. Disgusting human being. It does sound very severe and you should put your foot down with the doctors. You pay them. If there’s any good news, for me anyway the first outbreak was by far the worst. Have had 2 since the first (early spring) and they were like 10% compared to the first. 
 

it sounds like you never tested positive. I’m very surprised the swab test did not show positive. Go back in about three months for blood work. Antibodies should be detected by that point.

Once again, the doctors work for you. Do not let them pretend like they are gods. 

[Fmluck]

Just the fever has stopped.  I had it 4 days.  Im drinking like a camel to stay hydrated through the other.   All other symptoms remain. 

 

I bare no secrets haha... i mean, you all know my newest and darkest.   I have sarcoidosis in my lungs, erythema nodosum (shockingly this is not a harry potter spell, it is a actual disease) and interstitial cystitis.    My doctor is currently on vacation.  I had to go to a bunch of different walk in dr for all of this.  Each was a horrible experience worse than the last.  I actually had to go to a prescribing pharmacist and show her photos of the blisters before i could even get valtrex.  Went to a dr a couple days later as i had gotten 20 more blisters and he said "you're going to have to deal with it.  There is nothing i can do." Then went on to lecture me that condoms dont protect against it and if i dont want any more std's i should really find a trustworthy person to settle with...  fr. 

 

I dont have anything like planned parenthood here.  Im hoping my doctor will be more sympathetic and helpful, but at this point im going to have to go to another walk in as he is still gone.  I hope there is an end soon.  I hope this isnt my new normal.  I wont make it. 

[Neverwouldathought]

Oh, (800mg) ibuprofen and loose sweat pants were a big help for me!!! Huge relief.

[Fmluck]

The scrape was done on a blister that had already started healing.   I figure whats the point now, my entire vagina is one ginormous swollen blister in various stages.  I know my answer. 😕 ill get the blood test done mid october to confirm its 2.

[Fmluck]

I havnt worn panties in 2.5 weeks.  Cant. No way no how.  Super loose pants kill me.  I think my pubic hair hurts the worst.  I obvi cant shave like this.  Ive never had hair. Always been shaved.   I fear that i wont be able to ever again now 😞

[Flowerteacher55]

I am so happy your fever had stopped. Staying hydrated is so important, especially with the fever and diarrhea.

Ugh, I hope you doctor comes back from vacation soon! 🥺 That's such a bummer!! 

Since the sarcoidosis and erythema nodosum (which does sound like a Harry Potter spell!) are inflammatory illnesses, that would make sense that the HSV sent your body into an overdrive inflammatory response. But note, I'm not a doctor! 

Have any of the doctors you've been to explained how your three diagnoses would impact the HSV? If not, that's just wrong 😡!

Also, what audacity they had to lecture you on safe sex practices while you were in such pain. We can't control if someone doesn't tell us they have an STI. I'm so sorry you had to experience all that in addition to your symptoms. 

Pharmacists are honestly such a great resource. I'm happy that they finally gave you the Valtrex after you had to show a photo (which honestly you shouldn't have had to do). 

Hang in there. We are here for you. Things will get better. There is hope! ❤️

Blessings and Health,

Grace

 

 

 

[Flowerteacher55]

Also, in regards to the shaving...

Yes, for right now, don't even try to shave or do any hair removal. The bummer is, the growth of pubic hair may cause some pain, itching, and burning, since the follicles of hair are so thick, and the skin is already so inflamed. I am so sorry!! 

I was afraid to shave for a while down there after my first outbreak. Eventually, I was able to, but it definitely made me nervous. 

For right now, it's okay to be a little fluffier (yes, I said fluffier) than usual down there. No matter the hair, you are still a beautiful human!! 

It will get better ❤️ I promise ❤️

[Fmluck]

It has now spread up my stomach 3 inches towards my belly button is all new blisters forming.  Around 20.  I wont be able to know the count until the blisters form as its just all red raised bumps and angry swollen skin.  I think i need medical help 😕

[Flowerteacher55]

Hello,

Yes, I agree. Your body is still having a severe response to the virus, and I reccomend going to the hospital or an urgent care ASAP. You may need IV antivirals or additional testing to see if maybe there is another factor that is causing such extreme symptoms and outbreak.

Please head to the ER or emergency clinic ASAP! If you are unable to drive, phone a friend or neighbor, or if things gets really bad, calling 911 is always a backup.

Let us know you are okay. 

I am praying for you. Stay strong 🌼🌻❤️

[Ebelskiver]

I second that you should go to an urgent care or emergency department. Do you take steroids for your other illnesses? I really believe you should be on IV antivirals with an outbreak this severe. Is there any chance this could be shingles?

[Fmluck]

Wouldnt shingles only be on one side of my body?  This is my entire crotch. Both thighs. Stomach now. Its pretty textbook symptoms besides the severity of it.

[Fmluck]

Ive attached a photo from 2 weeks ago ish.

 

If you look towards the bottom of the photo, there is a little fresh one. thats what all the blisters look like.   Various different sizes, but none of them look like cold sore dimpled blisters.  Weird right?  Its much worse that this now.  Blisters ulcers and scabs have taken over every area of normal skin. 

[Flowerteacher55]

Hi! Did you get to an urgent care or reach a medical professional for the symptoms? @Ebelskiver is a nurse practitioner, so her suggestion to get urgent help is certainly a sign that you need help and more medical care ❤️ 

The photo you submitted looks like very healed sores. Did the sores look like herpes sores? Herpes sores are usually dimpled in the middle, and eventually fill with fluid. This fluid then oozes, and eventually they crust over, and the scab falls off. The sores you posted look almost like dry skin lesions that are peeling, which is odd. Are they scaling or producing scales at all? Also, do the sores have a head (center point), and if so is it filled with anything? Sorry I can't tell from the photo! 

I hope you are doing better today ❤️ 

I am so sorry you are struggling! 

Prayers and blessings,

Grace

[Ebelskiver]

You are correct that shingles tends to only affect one side of the body at a time (except in rare cases with immunocompromised hosts). The pics you have are a bit inconclusive. Could easily be herpes but could also be folliculitis. But with your comorbidities and other symptoms, I suspect herpes. I wish you had a medical professional who would take your issues seriously. 

[HavingAWobble23]

Hi sorry to hear of your situation.  I’m day 2 of a suspected primary outbreak but I also have interstitial cystitis and I couldn’t work out whether this constant burning and feeling like I need to wee is an IC flare up brought on by the infection or whether it’s typical of herpes as it’s sore and swollen near the urethra.  Have you noticed your symptoms have changed etc x

[Fmluck]

I initially thought i had a ic flare as well.  All the symptoms of it. 

[Fmluck]

The doctor thinks that it is folliculitus 😭😭😭😭😭😭😭😭😭😭😭😭😭 i guess i am still running a fever too.  I hadnt checked in a week.   He said "ive seen a lot of herpes.  I really dont think you have it.  But i will test a blister anyways"  im still in utter disbelief that this many blisters on my crotch could not be herpes. I was 100% convinced for 3 weeks.   I  have created such a monster in my head that i still dont believe this dr.  What is wrong with me actually?! Ugh. Im afraid to be happy.  Afraid hes wrong. 

[Flowerteacher55]

Hi!!

Oh my gosh. That would be A LOT of folliculitis. And would that cause all the extreme symptoms? 

Did the doctor give you anything to help with the fever, pain, and other symptoms? If the doctor doesn't think it's herpes, did they not give you any antivirals? 

See what the swab test says, but it may come back negative especially if the doctor swabs a healed or semi healed sore. 

Hang in there. I am praying for you. If it is herpes, you've already started mentally prepping for this which is good. 

If it isn't herpes, we will continue to support you regardless. ❤️ Also, you can get an antibody blood test twelve weeks from the date of exposure to double check if your swab comes back negative. 

We are here for you. Sending  prayers and blessings your way ❤️❤️☀️🌄🌼!!

[Fmluck]

You guys are incredible.  Im sticking here regardless.  🥰

I just have a bad feeling he is incorrect.  In october i will take the blood test again.

Thank you for supporting me through my darkest days.  All of your kind words and advice will not be forgotten.  Ill keep you posted on whether the antibiotics work

[Fmluck]

He only gave me antibiotics and told me to keep it dry.  

[Flowerteacher55]

Hooray! 🥰

Yes, keep us updated. In the meantime, I hope you feel better 🌼. You are in my thoughts and prayers!! ❤️❤️