Newly diagnosed- itching??

I don't normally post on forums, but I'm so grateful to have stumbled upon this page! You all have helped immensely with my mental, physical and emotional well-being. I'm astonished that in 2021 there's still no literature available on these symptoms, and doctors are still so uninformed.

I was diagnosed with HSV1 last week on 4/20 at 33 years old. I was so upset and in disbelief. After years of stringent safe sex practices, I get it now 1 year into my marriage because my husband has cold sores. I should have insisted on dental dams and I'm trying not to beat myself up too much over it now.

4 weeks ago I booked a room with a jacuzzi and soaked in THC bath bombs all long weekend. This gave me the most painful thrush I've ever had, everything was swollen. A pimple appeared and was excruciating when trying to use tampons. They attributed it first to a boil and then to an infected shaving cut. I used some prescription antibiotic cream on the sore which helped to bring it down. Luckily I seeked a third opinion and got tested and found out my diagnosis. By that time, it had mostly gone away so I didn't take my acycolovir.

I kept asking doctors about the tingling in the back of my legs and shooting pains in my feet I had been feeling for weeks, and they all turned me away like I was out of my mind for thinking it was related. And one day I had a sudden onset of shooting pain in my thumb while I was at a restaurant, I had to ask for a bag of ice to calm it down. I know my body well and I could sense this was all related, and I'm just so glad to know I'm not alone experiencing this.

Sure enough, after a few days of relief when the pain finally subsided, the intense itch ensued and led me to this forum. Before reading all these answers (twice), I was using coconut oil, tea tree oil, peppermint oil, oregano oil - to no avail. I tried my hydrocortisone eczema cream and that curbed the itch enough to function again.

Here's what FINALLY gave me relief:

Benadryl topical antihistamine spray. I went with the ointment rather than cream since I haven't shaved for a month. I tried spraying directly, but found it's better to spray a cotton pad and apply. Be prepared for it to burn for several seconds and then itch beyond belief for a minute. But after that the itch was gone! I had to reapply after a few hours, but I could finally feel normal again. Please don't use this stuff internally, and remember to start front to back if using the same cotton pad.

This post is so old, but everyone's collective input and research they've shared over the years has truly helped me through this tough time. I hope anyone looking for answers that they can't get from their doctors can find relief with our suggestions. I was feeling so isolated in my despair not being able to talk to my closest friends about this. But I have taken real comfort in reading your stories, and feel hopeful to return to a normal life. Thank you to everyone that posted 💖

Like other posters on this forum, while suffering serious symptoms from HSV-2 infection, I felt a great sense of relief to be able to read about similar experiences to mine that others had gone through. The doctors don't seem to know anything about them.

In December 2020, I got HSV-2 from my long term boyfriend whose doctor had twice swabbed him for it and come up with a negative result. In summary, it gave me severe problems with itching, severe numbness and 'pins and needles' in both my legs and the pelvic region, severe urinary retention for weeks (the most distressing and inconvenient symptom along with the severe itching), constipation for weeks, odd but not severe pain in the skin of my legs and pelvis, and itching in the 'saddle region' more intense than I could have imagined possible (like a 20 to 30 out of 10) at the same time as total numbness down there otherwise! Now, 9 1/2 months later and still on anti-virals, I only have slight loss of sensation and 'pins and needles' in my left foot, and genital itching which may be related but is usually bearable at only about a 6 to 7 out of 10 and occasionally getting unbearable and more like a 10 out of 10. I had nerve conduction tests done by a neurologist a few months after contracting the HSV-2 and no nerve damage was found, but that doctor admitted that the numbness and tingling in my feet might be from nerves that are too short for the test to cover. I went to hospital for a night a few weeks after I contracted the infection because a doctor thought I might have some rare nerve disease. They did loads of tests of everything that might be related according to what they know but found absolutely nothing wrong with me. Most of the doctors did not believe that these symptoms were related to herpes, but I know they were due to the timing and how unusual they were etc. The doctors told me the symptoms sounded like sciatica but nothing happened to injure my back just before they started and the HSV-2 did. Also, they know it resides in the dorsal root ganglia and should know that the location of symptoms corresponded to the relevant prodromes (google this if you want to know about it). Also, for many years I have had back pain regularly in a particular location of my back and know the symptoms well. These were nothing like those!

Like some of the other posters on this forum, I even got the impression that the doctors suspected I was imagining these symptoms! I suffer from severe anxiety and I was in distress from the urinary retention, fearing that my bladder may explode (and then how do I survive). When I saw the doctor in this state, he treated me with utter disdain. Like some of the other posters on this forum, I can't believe what a disconnection there is between my clarity and certainty about what was going on for me and the doctors' dismissal of most of it. They are throwing valuable data away by not listening to us, as if they are disinterested in knowing more and being able to help.

My first symptoms were actually physical tiredness, leg weakness, and numbness and pins and needles in my feet, at first only when I was exercising, but increasing day by day. A couple days after this started, I felt an odd tingling sensation and slight numbness in the saddle region while urinating that was unlike anything I had previously experienced. Then a couple days later I felt quite sore on my genital region, and the next day I felt sores down there and looked in a mirror and was shocked to see them. I also had a sore lymph node in the groin on one side for quite a few days. I never thought I would get an STI and it made me feel like a leper for months, especially after I was diagnosed officially by the doctor. My GPs were nice about it and tried to make me feel that it was common and normal, but it made me feel like if I ever broke up with my boyfriend, I wouldn't be able to have another one. It sounds like there is nothing you can do to prevent infecting someone else, but please take heart that female symptoms seem to usually be much much much more severe. I have seen data on this. All my boyfriend has ever suffered from it is one little sore on the shaft of his penis that happens every couple of months. Nothing else!

After the sores came on and I went to the doctor, I had severe exhaustion like a flu and it was hard to even walk around the supermarket. This lasted about a week. My vulva felt like it was burning, the sores hurt, and at first it was excruciating to urinate, but I found that taking 1 paracetamol every four hours cured the urination pain. A couple hours after taking the first anti-viral after the diagnosis, the pain from the sores and urination went away, thank goodness. I got odd pains on the skin of my legs and pelvis, especially when clothes brushed against it. My saddle region felt burning, numb, and tingling all at the same time. At some point, it went totally numb. I mean totally! From the time that the sores got painful, I had more and more trouble urinating. I got to the point a couple weeks AFTER contracting the infection that I could not urinate even when my bladder felt like it was going to burst. This made it very difficult to focus on anything, do anything, or go anywhere as it was so uncomfortable. Even when bursting, it took a few hours before I could FORCE the urine out and then only by squatting low with legs wide apart. At the same time, my legs were getting number and number by the day and with more 'pins and needles', rising from my feet, up my legs, eventually right up to about halfway up my pelvis. I had a lot of trouble walking for weeks and I was hobbling around with obvious difficulty. It got to the point for a couple of weeks where my feet got very sore when I stood for too long. I was obsessed with urinating and wrote down every time it happened for over 2 weeks! At the same time as this is happening, my saddle region gets itchier and itchier until I feel, just like someone else described, as if little insects are crawling all over it and biting it. This was like itching with the volume turned up to deafening. I think this lasted about 3 weeks and absolutely nothing helped: paracetamol, ibuprofen, even oxycodin in hospital!, thrush cream and pessaries (the GP thought I had thrush, but the pessaries caused me even more irritation somehow!), anti-histamines, pinetarsol. I tried tea tree oil, which gave me a strong burning sensation, but the burning was worth it for a short while as it seemed to temporarily numb the area. However, then it stopped working. The incredible itching made it very difficult to sleep and was particularly torturous at night when I was trying to get to sleep. Having all this going on for so many weeks was very distressing and fatiguing for my 'nerves'.

Gradually the itching started to decrease and the numbness and tingling descended down my legs. I started walking for exercise again 7 1/2 to 8 weeks after contracting the herpes and got wierd electric shock sensations shooting up my leg that made me feel like the knee was about to give way although it didn't.

Anyway, I just thought I would share these symptoms for others who are distressed about them, as I was ( and I was very distressed for WEEKS), and to whom the doctors don't seem to be able to give any useful information. It may take quite a while, but the symptoms do go away eventually.

Hi Katie ive just came across your post, im hoping you will reply although it was a long time ago your post. I am experiencing this post horrible itch after an outbreak that isnt going away? Can you help atall? im hoping yours eventually went? im desperate for some help as professionals dont know what it is and its not thrush or anything else?

Thanks so much

Gemma

hi,

i just got diagnosed 4 weeks ago and experienced a vaginal tear that hasnt healed since. my bf and i have tried to be intimate since, but we stop bc of my discomfort. have any of you been taking l lysine supplements for hsv and still been having vaginal tearing?