I initial started to have pelvic pain back in May 2019, the pain continued for 6 weeks before I felt soreness on the tip of my penis (see photo). On inspection I noticed the head of my penis looked red and sore and my testicle were red and felt very hot to the touch.
I visited my GP who had a look and said I think you have genitals Herpes and prescribed Antiviral medicine. I had no blisters present but accepted the doctors diagnosis of genital herpes and started taking the Antiviral medicine . The pelvic pain and soreness continued for many months without break but became milder and milder as time went on. The Antiviral medicine didn't seem to help and I started to believe that maybe I had been misdiagnosed by my GP and booked appointment for STI testing.
I was tested on three occasion over the next 8 months for all routine STI's. Blood, oral and anal swaps and a urine sample were taken for the below, all came back negative.
Chlamydia
Gonorrhoea
Syphilis
HIV
Hepatitis
I had now convinced myself that I had some strain of genitals Herpes which didn't form blisters and was resistant Antiviral medicine and i would have to live with it. The pelvic pain become very mild but the soreness remained.
February this year I became very ill with what I thought was flu but after several days I began to get the same burning sensation and soreness in my mouth and several yellow ulcers appeared, cleared up and never appeared again. Over the following 7 months I begun to feel extremely ill, continuous non stop flu like symptoms, pain in my legs, migraine headaches, aching neck, blurred vision, sore throat, shortness of breath, upset stomach, bouts of diarrhea and constipation, mild fever with body redness (hot flushing), brain fog, fatigue, lack of appetite and ended up in hospital on four occasions. The burning sensation and soreness in my mouth never stopped and I was sure this is the route of the cause. While in hospital I received ECG, routine bloods, CT, MRI which all appeared normal. The bloods did show a high white blood cell count and I was dehydrated.
My GP has tested my blood for everything they could think of and all results have come back normal. I have also had a COVID antibodies test and a lymes disease test to rule both out. I have seen several doctors, a haematologist, neurologist and await appointment with a ENT.
I had now been forced to give up the job loved and worked hard to gain after spending months on sick, bed ridden. I then decided to confirm the genital herpes diagnosed by my GP via a private blood test, this came back negative which confirmed I was misdiagnosed by my GP. Furthermore I discovered a number of STI's which are not routinely tested by NHS. I paid for further private testing for the below which all came back negative.
mycoplasma
ureaplasma
gardnerella
trichomonas
I the had routine tests carried out ones more for below, again all negative.
Chlamydia
Gonorrhoea
Syphilis
HIV
Hepatitis
Some of my symptoms have become milder but the burning sensation soreness and fever remain unaffected.
My partner has now began to show similar symptoms, burning sore mouth and throat and flu like symptom, fever etc. I now know that this is clearly contagious and live with the shame that I have infected my partner. Before this onset of illness we were a very hard working couple, working in very demanding jobs that we loved but our sex life's included other participants with unprotected oral.
This has complete ruined our life's and left us housebound with no future and feeling ill continuously. We really don't know what to do next. I would appreciate any advise or suggestions anyone may have or shared experience.
All the best,
this is crazy i have almost exactly the same symptoms , ive been tested for everything and im at a loss right now i can barely work and all i do is sleep , my symptoms are
sore on the roof of my mouth
brain fog
burning foreskin
urethra inflammation
bone aches
urethra discharge
burning tongue
leg pain
blurred vision
and the list goes on wtf is this ?
I’m having similar symptoms with no resolution 
have you guys gotten any answers?
i really really thought i had herpes a while ago i had muscle pains fever the lot i did a herpes test came back negative. i found out if under a lot of stress it can enhance symptoms for me anyway if youre clear on everything std wise you got nothing to worry about there. id be more concerned if its something else go to hospital get checked for as much as possible but try to remain calm stressing over symptoms only makes things worse
Have you tested for EBV mono? Fits a lot of symotoms.