Struggling to get a diagnosis

[Lula22]

Hi there,

I'm so grateful I found this forum, it's been helping me out so much. I'm hoping I can get some insight/ solidarity by making my own post.

I'm a 21 year old person (assigned female at birth) and I believe I'm currently having my first genital herpes outbreak. I've been in a relationship for over a year with someone who has genital herpes.

The symptoms I've been experiencing for the past nearly 2 weeks have been absolutely horrible. On top of that, I haven't been able to get a positive diagnosis for herpes, and the provider I've been seeing at planned parenthood seems to be confused by my symptoms which is a bit stressful.

My outbreak started when I noticed a paper cut-like lesion at the top of my vulva between my labia majora. I didn't see any kind of blister, I just felt a burning/ stinging sensation in that area when I wiped and then noticed the little cut. In the next days after that, my symptoms continued to evolve. I got a mild fever, intense headache, general fatigue, and chills. I also felt some nerve pain sensations and soreness in my legs and arms. I had a lot of discharge that was watery and clear and had a fishy odor. A couple days after my first lesion appeared, my entire vulva, anus, and butt crack started to itch soooooo badly. Like the worst itch I have ever experienced. I have barely been able to sleep since my outbreak started, I usually just writhe in discomfort all night from the discomfort. I didn't develop any other noticeable sores, but the entire rim on both sides of my labia majora seem to be covered in tiny lesions that leak yellow discharge and become crusted over. The skin around my anus and butt crack is cracked, dry, and peeling. It's so irritated that is bleeds a little when I poo :(. On one of the days, my whole vulva was bright red and swollen to almost twice its size. I feel like every day has brought more strange symptoms that seem to come and go. But overall, the itchiness, burning, and discharge have been consistent .

Throughout this whole time, I've been going to planned parenthood for care as I don't have insurance. I got my first lesion swabbed which came back negative, but that's not surprising given that it was over 48 hours old. The doctor was hesitant to say my symptoms seemed like herpes because I don't have any stereotypical looking herpes "sores". Luckily she still gave me acyclovir because I told her my partner has herpes. She did a wet mount on me and it came back negative for BV and yeast, but she gave me a pill for yeast just in case. She also said that she found a lot of white blood cells in my pee. I honestly don't feel like the acyclovir has been helping but I'm taking it every day. After my first visit, I waited a few days and then made another appointment because my symptoms were getting worse and  I wanted to try to get some more help for the unbearable itching and inflammation. The doctor one again seemed doubtful that my symptoms could be herpes. She also did another wet mount and this  time she found that I had BV, (pretty mild, and I wasn't surprised because I was on my period at the time and that happens to me sometimes), so now I'm on antibiotics too. That was two days ago. She asked me to come back in for another appointment today because she was concerned that my original lesion still wasn't healing after 5 days on Acyclovir. Today during my appointment, she told me that my symptoms "didn't look like any herpes case" she'd ever seen before. I keep pressing her for details on why she thinks this, but it seems like it's mostly just because I don't have typical herpes "sores". She really wanted to do a biopsy on me and prescribed me steroid cream which I haven't gotten yet. I said no to the biopsy for now because i don't have the money and I'm already in so much discomfort. I'll probably go back for it in a couple weeks when I have the money though.

Anyways, thank you so much for taking the time to read this and please let me know if any of these symptoms  sound familiar to you, or like something else I should be looking out for. My fear is that I actually don't have herpes and I'm not properly treating whatever is going on. I got tested for all other STIs (chlamydia, gonnorhea, HIV, hep C, syphillis), and they all came back negative. I haven't slept with anyone new in the past year either. I really don't see what this could be besides herpes, but the lack of knowing is making it more stressful. I've also learned from reading forums that doctors tend to have a pretty narrow and simplified view of what qualifies as herpes symptoms. But the fact that a planned parenthood doctor who must see a lot of herpes outbreaks says it doesn't look like one is kinda freaking me out.

I hope you're well and please let me know your thoughts ❤️

Lula

[Km_girl]

Hi. I was clinically diagnosed recently, I am 21 years old too. Many of these symptoms are familiar to me. 

I also had headaches, fever, malaise, chills and had three small "paper cuts". I also had itchy anus. Symptoms can vary greatly from person to person. 

Overall, it seems that doctors are only clinically sure when they see the characteristic clustered blisters. But with your description, it looks like herpes to me. 

I was confused about the yellow discharge, as the liquid that comes out of the blisters is citrine. Something like a clear pee. And it's liquid, not thick. Sounds familiar? 

I also had slightly smelly discharge, but it was white. I know it's possible if herpes gets in your cervix, but I don't know what different forms this discharge can be. 

It is very stressful to have to wait 12 to 16 weeks for a blood test. Do you intend to do it? After that time, you will certainly have antibodies. I hope you get well soon. 

It is very common for the first outbreak to last two to four weeks. Overall, it looks like herpes. I wish you good luck. You can text me whenever you want. I came out of my first outbreak a few days ago. 

I imagine I can understand you well. Cheering for your improvement!

[Flowerteacher55]

Hello Lula! 

I am so sorry that you are struggling with all the physical pain and emotional stress. You don't deserve that at all 🥺! 

Being in a situation where a doctor is unsure what is going on definitely can cause us to feel scared, since we look to doctors to diagnose us! She wants to do a tissue sample to get a better idea of what is going on, and I suggest going forward with the test when you have sufficient funds. It may provide an answer! 

In terms of the symptoms you describes, the cut you first noticed could have been thrush (little fissures or cuts on the inner and outer labia areas and it actually caused by candida yeast overgrowth). Thrush also can cause burning, itching, redness, and clumpy white discharge.

However, your symptoms of the lesions that oozed yellow goo that crusted over, the tingling, flu-like symptoms, watery discharge, and pain line up with HSV. However, the fact that the symptoms have been going on for two weeks is obviously not a good sign, and the symptoms aren't clearing up with the antivirals, so this is why the doctor is thinking a tissue sample needs to be taken. 

The consistent burning, itching, and discharge can be explained by the BV that your doctor discovered. Have you noticed any improvement since taking the antibiotics? 

The increased white blood cells detected in your urine indicate your body is fighting an infection of some sort, whether viral or bacterial. Your doctor could also do an IgM herpes blood test to see if you possibly were recently infected with HSV, considering your partner has it. Also, your doctor could take bloodwork and check different vitamin levels, white blood cell count, and antibody counts, too! 

It sounds like you may have more than one thing going on simultaneously, and they could be playing off each other (the burning and itching from one is worsening the symptoms of the other, and vise versa).

I reccomend getting the biopsy done, as it could really help see what is going on. Also, ask your doctor to take blood for an IgM test to see if this is an early infection of HSV. Furthermore, keep your doctor updated about any changes, and take note if the antibiotics are showing signs of improvement with any of your symptoms. 

It is so scary to not know what is going on, but an answer will arrive! Sometimes medical diagnoses takes some 'detective work'. Also we have to be our own advocates and really advocate for the testing and medical support we need, even if a doctor may not agree right away or at all. We know our bodies best! Don't be afraid to question your doctor or ask for a test! 

I hope you feel better and get a diagnosis! I am praying for you! It will be okay. Take care of yourself and be kind to yourself ❤️🌻🌄! 

Blessings, 

Grace

[Lula22]

Thank you both so much for your responses.

My symptoms have continued to evolve and get worse today and I have to face the fact that this is definitely not just herpes. From what I can gather, my symptoms seem most like lichen sclerosis and herpes together. I definitely need to get a biopsy ASAP but unfortunately planned parenthood doesn't open until Monday. I'm going to try to get some steroid cream from the pharmacy and see if it helps.

I finally broke down and called my mom and told her what's been going on. I was shocked to learn that she actually has HSV-2 as well as a hormone imbalance that has given her a lot of the same symptoms I'm experiencing. I've always had issues with hormone imbalance around my periods so I think this is something I struggle with too. Apparently hormone imbalance is linked to lichen sclerosis.

It does seem like the antibiotics have helped with everything, because physically I feel a lot better today but my vulva looks a lot worse. There are red patches and dots, areas of bleeding, and some white patches as well. I'm honestly just really scared right now.

Thank you both so much again for responding to me

best,

Lula

[Km_girl]

It's a difficult situation. But I'm glad you can now find support in your mother. Surely that will pass. I'll be rooting for your improvement.

Please update us if you need support, I know how important this is. Be alright! 

[Flowerteacher55]

Hi, Lula! 

I am so sorry that things continue to be difficult. It is so great that you confided in your mother and that she can be on your team as you navigate your health and find a diagnosis. 

I also have hormone issues with my period, however mine are emotional, as I think I have PMDD and am currently on birth control to see if it will regulate hormones (it doesn't seem to be working but I hope it does!).

It's great that the antibiotic seems to be helping, but the worsening of the inflammation and white dot rash of the vulva sounds like a bacterial or viral infection of some sort, which hopefully the biopsy will explain.

I am praying for you! Stay strong and be kind to yourself. You can do this! We are cheering for you ❤️🌄.

Reach out for advice or if you just need someone to talk to! We are all here for you. 🦋

Blessings,

Grace

[Lula22]

Hello again,

Thank you both so much for your support, I'm super grateful 💕. I hope you're both doing well.

I'm still having a lot of symptoms and still pretty confused! My vulva is doing a lot better, but my original lesion/ fissure is still there and kind of gets better some days then starts to come back. But overall much better. However, it seems like my symptoms are currently attacking my bum. I'm experiencing extreme itching around my anus and it feels like I have thousands of tiny paper cuts around it. My whole bum area (just between the cheeks) is covered in a super painful and itchy red rash (even colored) that is starting to peel around the edges. I don't have any obvious lesions or sores, but I do bleed when I have a bm. I can't find any info on a red rash being connected to herpes but I really feel like it's connected. Have either of you ever heard of this?

I'm hoping I can get an appointment for my biopsy soon, at this point I'm just confused. I also seem to have herpetic Whitlow on one of my fingers (super painful white blister that burst and is now infected). 

Also @Flowerteacher55 I have PMDD too! Its truly awful I'm sorry you're dealing with that as well. I definitely wonder about how it interacts with herpes. 

Thank you once again for your support and feedback, 

Lula