Hi everyone, I'm new here, and have been really interested to read everyone's experiences. I wanted to share mine - I think it's quite different to most so far.
I do not have a definitive HSV diagnosis, but I'm 99% certain this is what happened to me. At the end of January I was with a man I had been dating for a while for the first time, and as I always do I insisted on using a condom. He took it upon himself to take it off halfway through intercourse (he was swiftly kicked out of my house), and it seems passed HSV 2 onto me. I don't know if it was deliberate, but I really, really hope not.
I started to feel sick about 4 days afterwards. I didn't have any visible lesions at all, but I had mild swelling and discomfort in my genital area. I was concerned, but I developed a yeast infection and became less so.
I started to develope flu-like symptoms - a very sore throat, aching limbs and a very high fever. I became very weak, in particular I suffered lots of pain and weakness in my legs and feet.
I then became constipated, and after a week of not being able to go even with laxitives I began to pass blood from my back passage and I realised it was starting to get difficult to begin to urinate. I also noticed I had swollen lymph nodes in my groin. I went to my doctor, who gave me antibiotics for a suspected UTI and gave me stronger laxitives.
The next morning, I woke up and couldn't urinate at all. I was compelled to urinate, but couldn't make my body release it.
I went to A&E, and this is where 4 weeks of hell started. They catheterized me (horrifically painful as I now know I probably had the beginning of an outbreak in my urethra at the time.) They assumed I was constipated (this can cause urinary retention) and treated me aggressively with laxitives and enemas, none of which were particularly successful.
Eventually I was admitted, seen by the uroglogy teams and general surgery, who could not figure out what was wrong with me. I was catheterized for over a week, undergoing almost daily rectal and pelvic examinations. A pelvic ultrasound showed no abnormalities, and a colonoscopy showed mild inflammation but no serious problems.
The urologists taught me how self catheterize - a process that took about 20 minutes every time I became aware of my bladder being full (about 6 times a day). Amazing how you take natural bodily functions for granted! And, believe me, as a woman it's not an easy process to do to yourself - the female urethra is *tiny* and so difficult to find - I'll leave it to your imagination.
It was then that I developed pain in my lower back (coccyx area) and spreading numbness from that region, in my buttocks, anal area, genitals and inner thighs. When I reported this to the doctors, they finally got a neurologist on board who ordered an immediate MRI.
They ruled out spinal cord compression, and MS. All good. Only then did they suspect HSV had infected my central nervous system.
I had numerous very painful lumbar puncture attempts. Eventually, they were successful and sent my spinal fluid for analysis. They took blood samples and swabs from my vagina and anus (despite the fact I have NEVER had anal sex in my life) to test for every sexually transmitted disease under the sun.
My spinal fluid showed I had 11 times the normal levels of white blood cells, all consistent with a diagnosis of sacral myeloradiculitis, or Elsberg syndrome.
HSV, as we know, invades the nerve cells, and in the case of genital HSV infection this is specific to the sacral region. The virus had somehow infected my spinal cord, and was causing inflammation that had essentially paralysed my bladder and bowel, and left me completely numb from from the base of my spine to the middle of my thighs, with the numbness spreading to my feet. I developed leg weakness and jerking.
All my swabs were negative, I had no visible lesions at any point, my spinal fluid whilst showing I categorically had a viral infection in there tested negative for every herpes virus (EBV, HSV, VZV). My PCR came back negative for HSV 1 and equivocal for HSV 2, so we can only assume that it was an early equivocal result and that it is now positive.
I was given a 10 day course of IV acyclovir for 2 hours 3 times a day. Let me tell you, acyclovir is not easy on the veins as the drug has such a high PH - I could take about 2/3 of a dose before my veins swelled and the pain literally made me scream. I can't believe they have to give this stuff to infants.
I started to improve, but developed the most intense pruritis (itching/tingling/skinscrawling) in my buttocks, thighs, genitals legs and the soles of my feet.
My neurologist prescribed me gapapentin - a neuropathic drug used commonly for epileptics, diabetics with neuropathic pain and amputees with phantom limb pain. For those who are suffering from chronic pain and the itching and tingling, I would highly recommend this drug. It did make me drowsy at first, but quickly had my symptoms under control. The sensations didn't disappear, but the amp was certainly turned down - I was even able to sleep.
I eventually managed to void urine myself after 8 days of acyclovir treatment, and was able to open my bowels myself the day after. Some feeling started to return.
They did another lumbar puncture (again, 4 separate attemps were required) and despite the worst post lumbar puncture headache ever, the results were encouraging. My white cells had dropped to a still elevated but more reasonable level - the acyclovir had worked. Again, no signs of any virus in the fluid, nor again in the repeat swabs they did (I started to feel like the whore of babylon after a while when they couldn't believe I didn't have chlamydia, gonhorroea, trich, syphilis or any other godforsaken illness in any orifice.)
After 28 days in hospital, I got out last week. So today will mark day 50 since my exposure and I'm still not quite there yet.
I have regained most sensation - my perinium and vagina are still quite numb, as are the soles of my feet. It's still a bit painful and difficult to start urinating and I still have severe lower back pain. The itching and tingling is still mostly under control by the gabapentin, but when I tried to come off it, it was almost unbearable still.
I never seemed to develop any lesions at all - not a bump, not a crack, not a sausage. I realise they could have formed on my cervix but I did have an internal examination by a gyneacologist who couldn't see anything at all.
I'm obviously shocked and confused. And terrified that another outbreak will mean another infection in my spine, and another hospitalisation. Nobody has actually confirmed a diagnosis of HSV 2 to me, but we can only assume that's what it was. Nobody knows what to expect - whether I will develop visible lesions next time like most others, whether I won't notice, whether it will just be inflammation and itching or whether I will be so sick again.
I'm not on any anti viral therapy to prevent recurrence. I'm still living with numbness and the horrible skin-crawling sensation in my groin and buttocks. Is it ever going to get better or has the virus just damaged me so much?
I am also obviously greatly concerned about transmitting the virus to future partners, and very angry about the way I contracted the virus. I think living with herpes is bad enough, but the fact is, there was great potential I could have died from it had my neurologist not made the decision to treat me with anti viral chemotherapy without a definitive diagnosis.
I'm not sure what the point of my post is. I think I just needed to document what happened to me, ask if anyone else has experienced Elsberg syndrome as a complication of primary HSV 2 infection, and also make a recommendation for gabapentin as a possible treatment for the chronic neuropathic pain and itching/tingling/skinscrawling nerve problems associated with herpes infection.
That's all for now...