Constant prodrome or something else?

Hi everyone,

I have somewhat of a long story to tell, so please bear with me! June 4th I had just started my period and felt an itch towards my rectum, gave it a scratch and thought nothing of it. The next day I was sore but thought "I probably just cut myself, no big deal". That was until I took a look at what was going on and saw a small open area clustered next to three blisters on the left side of my perirectal area. I tried to convince myself that it was from scratching as I had long nails at the time. I also noticed a swollen lymph node in my left groin. The first thing that pops up when you google swollen groin lymph node is: herpes. I thought that there was no way, I've been in a committed relationship for two years and neither of us has had even so much as a cold sore! ANd then I started to see that anyone can have the virus and have it lay dormant for a period of time or forever, that's how so many people don't know they have it. Anyway, I spent the next two weeks with EXTREMELY high anxiety. Like I couldn't function normally it was that bad. I saw one doctor who mentioned nothing about herpes, giving me an antibiotic cream to make sure the "cuts" didn't get infected. I tried to take comfort in this because she didn't even mention it, so it couldn't be that, right? Then a couple of days later after sobbing and telling my fiance what my worst fear was, I took off of work and made an appt with a gyn doctor who took one look and said "this is fungal in nature, buy over the counter clotrimazole and it'll be gone in a few days". I tried to take solace in this too, this was the second medical professional to NOT mention herpes which is good..? But something in me knew that this was being brushed off. Three days after that, June 16th, I saw a THIRD medical professional - a midwife - whom I told my story to and she asked about a history of herpes and then said she wanted to swab the open area for herpes although her suspicion wasn't high. I was anxiously awaiting the results, knowing that even if it was negative that it could be a false negative as the only remaining small open area was almost healed when it was swabbed. I got the call 6/22 that it was negative for HSV2 and positive for HSV1. She then started me on antivirals, which I'm sure were probably moot at that point as I started them two and a half weeks after symptoms started.

I've had my ups and downs coping with the news since then. My fiance is great, he's super supportive. We had a sit down meeting for Q&A with the midwife last Tuesday, 6/27, and decided to do a blood test for me. Again, confirmed HSV1 IgG was positive, HSV2 IgG was negative. My fiance is getting his blood test done tomorrow so that we know if he carries the virus.

Now that the background is explained, the reason for my post. Since the first week of the sores being there, I started with on and off burning on one side of my vulva. Then after the lesions healed, I began to get what I've seen described as "prodromal" symptoms. I get random twinges/zings/itches/stings/etc in the area around where the sores were as well as on the other side of that area where I haven't had lesions. These happen randomly throughout the day, every day. I elected to take suppressive therapy with 500mg of acyclovir once a day so I am on that. I constantly feel the need to feel and check that no more lesions have popped up because of these feelings. I also still have some irritation and itching on and off to my vulva and clitoris (mainly only the right side, makes me think nerve distribution?), where there were no lesions of any kind. When I look nothing looks out of the ordinary. And when the midwife had looked when I was experiencing the symptoms (back when she swabbed me) she saw nothing visible of concern. To make things complicated, I have a history of a form of vulvodynia, vestibulodynia (aka vulvar vestibulitis), for which my main symptoms were irritation and itching. I've had this under control for several years and went off of meds (cymbalta for nerve pain and estrogen cream) within the last year and have been pain free.

The midwife said to up my pill to twice a day if I experience symptoms. My question.. how do I know if I have symptoms if I ALWAYS have the prodromal feelings?! When I asked when those feelings would stop, she said that they would and that "it'll take time". My thoughts are that they are one of the following:

1. Left over nerve irritation as I didn't take any antivirals until two and a half weeks after symptoms started (I know some are skeptical of this as this isn't "typical" and there isn't much research on it)

2. The virus is constantly active and trying to form an outbreak (note that I DID have these symptoms even when I was initially on 1000mg of valtrex twice a day for ten days)

3. The virus is shedding constantly at this point

Any thoughts? Similar experiences? Also of mention, when I got my first outbreak, I had just finished my first pack of a new birth control they wanted to switch me to with different hormone concentrations related to developing a large ovarian cyst on my previous pill. I go to see the NP I see for my vulvodynia on 8/9 and hope she can shed light on some of this if these symptoms continue.

Thank you for reading!

Since this is a new infection, the "it just takes some time" advice may be pretty accurate. Everyone's response to the virus varies. Initial infections may have longer-lasting symptoms than recurrences. It varies so much from one person to the next, and even over the years.

Were you experiencing the prodrome symptoms before starting Valtrex? I acquired HSV2 18-25 years before ever being diagnosed with it because my symptoms are so mild. I tried Valtrex to reduce transmission since I was seeing someone at the time, and Valtrex gave me constant zingers. So annoying. I'm now on acyclovir with no tingling. It's awesome.

Glad you're seeing the NP who manages your vulvodynia. Hopefully she can shed some more light on this for you!

@HikingGirl

Thank you for your response! I know this is a long post and a lot to read. I have read some of your other posts and responses on the forum and was actually really hoping that you would chime in! :)

While it is an initial experiencing of symptoms, the virus isn't new to my body as my IgG is positive (9.48). So I'm unsure how long I've been carrying it around with me and not knowing. I will be curious to see if my fiance carries it. It won't tell us who had it first, at that point it would be the "which came first the chicken or the egg" scenario, but it is important to know his status. And luckily he seems to understand that it IS possible to carry it for years without symptoms, whether is be oral or genital.

Thinking back, I really think that I did NOT have the prodrome symptoms until after beginning the valtrex. I was on the really high dose at first (1000mg twice a day for 10 days). The only "prodrome" I can think of preceding the outbreak I had was an itch that went away when I scratched it. After that I just remember the open areas hurting and being sore, but not particularly itchy or zingy or tingly or any of that.

I have to correct my post, I'm on 500mg of valacyclovir***, not acyclovir*** So, I am on valtrex. Which I've read is the only one FDA approved for reducing transmission rates. I've read that acyclovir similarly decreases shedding, but not as much as valtrex. I'm waiting to see if my fiance carries the virus. If he does, I may ask to try switching to acyclovir to see if that helps these feelings go away. Because if he carries it I will just be more worried about having outbreaks as opposed to transmitting it to him. That being said, I had noticeably less of the prodrome feelings yesterday and today I haven't had a ton so far, it is early though.

The feelings make me constantly feel as if I'm contagious or if an outbreak is going to occur. That coupled with the vulvar irritation I have off and on, and not knowing if that is herpes related or related to other things, scare me. If I could just get back to a time of normalcy where I physically feel normal, that will do wonderful things for my mental health. I think I can cope with having an outbreak that causes discomfort here or there, as long as I know it is very temporary and that I WILL feel normal again.

My vulvodynia NP is so awesome and I am truly excited to see her, as odd as that sounds! The midwife has been great but has offered no thoughts up regarding the vulvar symptoms.

I am in the process of planning our wedding - we are just finalizing our venue and now have a little less than a year to get everything planned. So this will be a highly stressful, albeit in a good way, year! I want to minimize my chances of outbreaks for this year and especially during our wedding and honeymoon. Prior to my diagnosis, we had chosen 6/22 as our wedding date. I only realized the other day that 6/22 is the day I received my diagnosis. Ironic, huh? That 6/22/17 will be one of the worst days of my life, and then 6/22/18 will be one of the best.

Thanks again for reading and replying to me!

That's interesting what you mentioned about only Valtrex being FDA approved for lowering the risk of transmission. I went back and re-read a few sections of the Terri Warren book to understand that better, since I do not want to go back to Valtrex when I resume dating someday!

Warren says that the reason Valtrex is the only FDA approved antiviral for reducing the risk of herpes transmission is because it's the only medication which has been studied specifically for that outcome. In other words, no one has bothered to do the same study with Famvir or Zovirax (acyclovir). However, all three anti-vitals have been shown to drastically reduce shedding, so there's reason to believe the others would also work in the same way to reduce transmission. It's also worth mentioning that valycyclovir (Valtrex) converts to acyclovir when it passes through the liver. It's just that taking acyclovir from the start isn't absorbed by the body as well, so it has to be taken twice a day instead of once a day.

By all means, you should take the drug you feel the most comfortable with. But if you continue to have frequent zingers and other prodromal symptoms, it might be worth considering an experiment with one of the other drugs to see if there's a difference for you.

Even though I am not a fan of big pharma (I'd give anything to be able to ditch my $250/mo asthma inhaler!!!), or their marketing/scare tactics, I personally find a lot of value in taking antiviral medication. Obviously, reducing the frequency or duration of outbreaks is a plus. The biggest plus, in my opinion, is that when you reduce the physical symptoms of herpes, it's a helluva lot easier to cope mentally and emotionally because you're not always thinking about it!

One of the things that really ate at me in the first 6-8 months after diagnosis.....and I hear some of this in your post, and also in the posts of others.....is the uncertainty. Is this symptom related to herpes or something else? If I don't recognize what herpes symptoms are for me, how can I possibly avoid sex during that time to protect my partner?

It's been 17 months since my diagnosis and I am just now really starting to find some acceptance of the fact that I'm just not always going to know when I'm shedding the virus. I might not always recognize a prodromal or outbreak symptom. I am human, I am imperfect, and I am doing the best that I can. I can do what I can to reduce transmission (condoms, antivirals), and I can do my best to recognize symptoms, but it's not a perfect science. And at the end of the day, there's always the asymptomatic shedding to consider which I'll never recognize. There will always always always be a risk of transmission when someone has sex with me.

I've somehow arrived at this place recently where I'm just tired of worrying about it, I guess. I'm sure others can relate! :-) There is a loss, of sorts, with a diagnosis like herpes. A loss of control. As I've spent time trying to work through that, I've realized how much I obsess about controlling the outcome in other areas of my life. And how much energy that uses.

Now my big concern is, if I wasn't obsessing over the fact that I have herpes and what my body is doing and why would anyone want to be with a walking contagion.......

.....how else could I use that time to create an awesome life?

I guess all of this rambling is to say that the thoughts and feelings and concerns you're having now, being newly diagnosed, are very normal. It's a lot to process, but you are well on your way. I can see from your posts you have a tremendous positive energy about life in general and a very strong will to move forward. No matter what happens, there is no doubt in my mind that you're going to be okay. :-)

Thank you for researching and sharing all of that info! I did know that about valtrex, that it is converted to acyclovir in the body, which I thought was interesting. I have been feeling *less* zingers and random intense shooting itches/stings/etc the past few days and have settled into just random areas having some itchiness or irritation. I'm going to try to wait it out a bit and see if I continue with less of the prodrome symptoms while on valtrex. If not, I will definitely ask about switching to acyclovir. When I brought up my thoughts of switching meds to my fiance and the transmission reduction part he stated that I should take whatever medication I need to take and not to worry about him because it isn't a big deal. This was of comfort to me and definitely comes from a place of unconditional love and support from him which is much needed right now.

While I want these remaining off feelings to go away, I find them a little easier and a little less anxiety producing than all of the constant prodromal symptoms, as I have dealt with similar feelings before. It took me over a year to be properly diagnosed with my vestibulodynia. It was a horrible year, almost constant irritation, itching, and pain. I tried every thing I could think of for whatever the doctors (whom although well intentioned, had no clue what was going on) would throw at me in addition to natural remedies. I also went on a special diet to try to help things and lost about 20 lbs and weighed only 107lbs (I'm 5'4, I looked like bones). I think that situation has helped my resilience in coping with this thus far. I got back to normal after more than a year of feeling awful with the help of the right nurse practitioner; I keep telling myself I can surely do it again.

I totally agree with you when it comes to the antivirals. When the midwife offered to put me on suppressive therapy and said it was totally my choice, I absolutely wanted to try it. It does give me some peace of mind, and I know more will come with time and learning what things feel like for my body with this virus. I have moments now where physically I *almost* feel normal and my mental state is always at its best at those times, compared with the past 5 or so weeks.

Its crazy how the diagnosis can eat you alive - little things you NEVER would have questioned before now come into question as to whether they're herpes related or not. I can have what is clearly a shave bump.. or is it something more?! I have a slight itch, is it herpes?! I have a random red area, is it herpes?! I have a pimple on my butt, is it herpes?! My thigh itches, is it herpes?! Before, I would have paid these things no mind! Now I question literally everything. And I'm trying to get better at that but I know it will take time.

I LOVE reading about what your thoughts are and where you are mentally in this process! They make sense, you're right in that there's no way to ALWAYS recognize symptoms or know when it could be passed. My fiance has told me that I have an issue with wanting to be in control of things, so it would make sense that I am struggling with a loss of control over my body.

Thank you most of all for pointing out the positives you've found in my posts - the positive energy about life and the will to move forward :) I am doing my very best. I still have my moments, but the support of my fiance coupled with this forum and a very inspiring blog I've come across have helped me tremendously to make me feel like this is something I can live with and that I can lead a normal life

@Hikinggirl I forgot to mention you in my reply!

No worries (I usually see most posts), and you're very welcome. It makes so much sense that having your experiences with vestibulodynia would help you here with HSV. Someday a friend or family member is going to have a hard time with a medical diagnosis (or lack of one) and you're going to be a huge support to them.

And then to have the added support of your fiancé is just awesome. Most people on this board need to hear, over and over and over, that there *are* men and women who are willing to look past the virus to see the person. Give him a hug from all of us.

@HikingGirl I certainly will give him a big hug :) I was shocked at how accepting he was from the start before I even knew for sure. One thing he said to me during one of my break downs was "You may never have an outbreak again; or you could have one, or three, or have one every month. We will figure it out". Just goes to show there are certainly people out there who will look past it and don't see it as a big deal!

I'm a nurse so its easy for me to think logically about medical conditions under normal circumstances. When its in reference to someone else, say a patient, I'm all facts and logic with a sprinkle of emotion in the form of empathy or sympathy. It is totally different when *you* are the one it is happening to and its easy to focus solely on emotion instead of facts. I think my empathy for others will only increase after this experience.

From what I understand HSV 1 sheds very infrequently in the genital region

@Neewbiehsv1g it does shed less frequently than HSV2, but it still sheds!