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Joyce hopes that the new patient group in the Netherlands will help thousands of people like her
Will a new patient
group help to improve the lot of people with herpes in the Netherlands?
My name is
Joyce and I am 22 years old. I live in the Netherlands. I had my first
symptoms of herpes when I was 16. For years I didn't know what it was.
I still don't know for sure where I got it. I still have many questions,
but I hope that the new group being set up in the Netherlands will provide
the information that I - and so many others like me - need.
My long journey to
a diagnosis and treatment
The first symptom I experienced was a big spot on my bottom that itched
a lot. When I went to see my GP, the blisters had almost dried out, and
the doctor said it was eczema and treated it with cortisone cream. After
about two years I realised that the liquid-filled blisters could not be
eczema, and I went back to the GP. Then he said instantly "this is
not eczema, this is herpes". He completely denied ever diagnosing
eczema or prescribing cortisone-cream! This time I got antiviral-cream.
He did not give me any information about herpes.
After that I came back to my GP several times with all sorts of questions, and finally he sent me to a dermatologist. The dermatologist took a blood test and a small sample from the blistered spot during a recurrence and he sent it to the laboratory. Both tests confirmed herpes simplex virus type 2 HSV 2. He prescribed an antiviral medicine, which I take when I have an outbreak. I also take multivitamins to try and keep generally healthy.
I guess I will never
be sure where I got it from
Up to now I am still uncertain of how I acquired herpes. I may have contracted
it from my stepfather, who sexually abused me, by rubbing himself against
my buttocks, from when I was 8 until I was 13. Or it might have been from
the boyfriend I had when I was 16. After a while he developed some symptoms
too. Maybe I transmitted it to my boyfriend. I suppose I will never know.
Living with herpes
During a recurrence I have a lot of neuralgic pain - like having aching
muscles -in my thighs.
But there's more to it than the physical effects of having herpes. I'd like, for example, to wear a string bikini in summer, but I've noticed that UV light makes my spot flare up. I've tried to use a sunblock, and even discussed this with a woman who works at the local solarium where I go. But when I told her I had a cold-sore on my bottom, she replied "that's herpes" and I did not dare to go back for while.
I still have so many
questions…
I am still very uncertain whether I could be contagious to others
or not when I have a spot. How about towels, bed sheets and shared clothes?
As well as this I worry about being contagious while having sex. Can I
shed virus when I don't have a spot?
I hope to find some answers in the future. I got in contact with someone in my home country, the Netherlands, who is forming a support group, and I am learning more and more about herpes. I hope others will join the group and help to make a difference for people with herpes in the Netherlands.
For more information on the Netherlands support group - Herpes Informatie & Support Organisatie (HISO) - visit their website - www.hiso.nl
Sebastien
Sebastien
Natalie
Jenny
Christine