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What do you wish your doctor told you when first diagnosed with herpes?


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I am working on some Herpes Opportunity support resources for newly diagnosed herpster brothers and sisters and need your help! (Pretty please?)

 

Tell me what you wish you'd been told, what you needed that you didn't get from your doctor, etc. when you first heard the h-word. I know so many of us had really painful experiences.

 

The goal in sharing is to provide comfort, reassurance and resources for those who will have the same experience and hopefully educate healthcare providers toward more compassionate care.

 

Much love,

Kristin

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When my doctor told me she was testing for herpes, she mentioned that it was very common and was probably given to me by a family member when I was a child. Her assistant told me it wasn't an STD and that a lot of people have it. When it came back positive, she said that sometimes it travels from the mouth. It was confusing because I've never had an outbreak and had no idea why they were talking about cold sores when they were testing for genital herpes. I didn't think the staff was without compassion, but I do think that they are under the impression that people are more informed about these conditions.

I wish my doctor had been more clear and directed me to a resource that could properly inform me. When I was initially informed I was trying to absorb my diagnosis and it seemed like it wasn't a big deal.

Hopefully this is helpful.

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Hmm, what do I wish she would have said. Hell, anything would have been better than practically nothing. She came into the exam room told me the test came back positive for both. Her expression was something I do not have the words to describe. At that the appointment was done and she left the room. Even though I prepared myself for it I was a bit stunned.

 

I would have liked to receive information on the virus, antiviral meds, support groups, anything really. I understand the level of ignorance surrounding this condition, and even with that a good beside manner (so to speak) would have gone a long way. It's about being able to relate to someone on a human level. They've just been told they have something that won't go away and has a terrible stigma attached to it. A good start would be access to the right information directly from a healthcare provider.

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Hi,

well when i had my first outbreak my doctor touch the herpes area and the part around.I asked him what he is doing there , its very infectiv.He told me that he is wearing gloves and its not infective for him....whattttttttttt????And i said ....well i dont mean its infectiv for you guy, if you touch the are around the herpes ,it will spread around and get much worse.

 

But this guy didnt had any idea about herpes and i am not even sure if he was real doctor hahhahah.he asked me what he should do now and what i expect from him....i saw he had no clue so i went home and never gone back.

 

I wished the guy would have said that there are diffrent therapies with anti virales , that we have to do a test for HSV 1 or 2 and that he would have send me at least to a specialist for dermatolical or virus problems.

That they inform you about helping groups or give you at least some information letters.

 

The doctor dont think they need to br informed about this things because it dont kill you :)so its good that there websites like this , where you can inform yourself and speak to others. Thanks to all of you.

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Thanks for spearheading this, Kristin. Feels so good to have you as such an integral part of this mission. :) Big hug! See you in a few weeks at the seminar! Woohoo!

 

By the way, check out the new video I put together about the H Opportunity weekend. Gets me choked up every time I watch it. :)

This content is for informational purposes only. This information does not constitute medical advice or diagnosis. I'm not a medical professional, so please take this as friendly peer support. 

Helpful resources:

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I agree with the others, having some sort of information or a resource where you can find the information on herpes would have been really helpful. I left without so much as a pamphlet. All I left with was the diagnosis, being informed that I will pass this along to anyone I have sex with and I could take meds if I wanted. Have a nice day. Or not. I would have also loved to know about a local group of people that I could connect with here in Calgary. ANYTHING would have been helpful. My doctor and nurse were pretty good about judgment, but even then, I still felt judged and damaged. It wasn't until I reached out myself and found a local group and people like you here that I stated to see the positive side of this and also to feel like I was worthy again.

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Awesome krisitin! What would I have like to be told...? All the stuff I have learned since my diagnosis. I have a great doctor but she fell waaaaaaaay short with this, and I have told her too. Not sure if it will chance her approach with H though.

 

So...here's my list :-)

 

1. How common it is and stats

2. What to expect in the first year re outbreaks

3. How I can expect to feel emotionally dealing with it

3. Where to go for support

4. Commonly used Natural remedies I could try to relieve symptoms

5. Diet and supplement that could help

6. How it will change sex

7. What to expect long term with the virus.

 

I am going to start a support group here in my city this year...my New Year resolution :-)! Big hug my lovely friend...love your drive and compassion and BIG heart! xx

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It seems that my experience went quite well, compared to some. My doctor was very compassionate and allowed me to ask any questions I may have had. The problem: I was hysterical and couldn't think straight. I would have loved to have a source to go to later when I had calmed down. Almost all information she gave me that day was lost. So, I would have loved to receive some sort of pamphlet on how to live with it, maybe this site as a support, etc. What you're told that day or how you are treated can make a difference, but it's how to live with it that I think is the hardest. I was pretty naive and thought I could only pass the virus if I was having an outbreak, so I made some poor choices because of that. I waited to disclose, had unprotected sex, etc. I think cautionary information would have been most helpful for me. Being told the facts first would have protected myself with information that would have protected others in the future. lelani's list pretty much says it all! :)

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