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National Cervical Cancer Coalition


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PostPosted: Thu Jul 22, 2010 3:21 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
This is my first time to this board and I appreciate the help.
I have been having symptoms of herpes outbreaks for years, but I have never experienced lesions or bumps. I have been diagnosed as having HPV for so long, and smearing cortozone creams, trying aldara, and doing whatever I could to stop the constant itching and redness inside my vaginal area, (nothing works) that no one ever thought to consider herpes. (My husband has never once experienced any herpes symptoms for 20 years.) Finally, one doctor took a blood test to tell me that I "had been exposed" to herpes and gave me a prescription for antivirals. I am on the end of an outbreak now (which, to me, means intense itching and pain and soreness, but nothing visible) so I didn't take the pills because I want to see what happens if I start the medicine at the beginning.

But my issue is, since I know that Acyclovir may cause upset stomach, drowsiness, or other side effects, I am concerned about whether I actually have herpes or not! My symptoms are itchiness inside the vagina--in the same spots--ALL THE TIME! But there are times when it is so intense that I consider it an outbreak--and it lasts for about a week and I have to sleep with ice packs between my legs or else I can't sleep at all.

The doctor says I need to have a biopsy done in the middle of an outbreak, but I have had 8 bioposies done in my life, and since the lesions can't be seen, (I just point to the really itchy area, and they can sometimes see redness) no doctor has ever diagnosed herpes from a biopsy. The last doctor told me the result of the biopsy was "skin irritation" as if I was causing it by using scented bath soap or something. She said it was not HPV. So--how do I decide if I have herpes? Just take the medicine and see? Should I start to take it every day? It seems like a lot of medication if I don't have an outbreak and I am wary of strong medicines in general.

thank you for any advice you can give me.


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PostPosted: Thu Jul 22, 2010 3:50 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
there's no such thing as just being exposed to herpes. can you get the numeric results of your blood test to post here for me to look at? All I need to see are the actual numeric results - ie hsv1 igg 6.7 and hsv2 igg 8.9 or whatever they are.

having issues a long time like this makes me worried that folks will start just telling you it's herpes and stop looking for a cause when even when you do have herpes, it's not the cause of everything that goes on in your genital area. Perhaps talk to your provider about having the supplies at home to do home pcr swabbing the next time you have symptoms. far easier to do it at home than it is to try to get to the clinic within 48 hours of symptoms. It consists of you wetting a sterile medical q tip with water, swabbing the areas of symptoms and then putting it in a tube of transport medium and then dropping it off at the clinic anytime in a few days. easy peasy right?

betsy

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PostPosted: Thu Jul 22, 2010 4:41 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Thank you, Betsy. I will call the doctor now to try to get the numbers. There is no chance they will call me back today, so I hope to maybe have more information on Monday.

No one has ever suggested the swabbing at home, but it seems like a good idea. The real problem is that I need to switch doctors, I think. I have no idea where there would be someone who would be more expert at this in my area and don't know where to look. I have been to many doctors over the years, plus, about 20 years ago I had the entire vulva region lasered--which was horrible--but generally stopped symptoms for about 8 or 9 years. I was considering doing it again but of course I don't want to. They did that when it was diagnosed as HPV, but that hasn't been diagnosed again for years.


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PostPosted: Thu Jul 22, 2010 5:44 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I'd stick to a gyn and/or get a gyn and a dermatologist to work together.

sometimes it just totally sucks being female whether you have herpes thrown into the mix or not :(

betsy

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PostPosted: Thu Jul 22, 2010 7:02 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Me: Hello, I would like the results of my blood test.
Receptionist at major hospital where my gyn works: I can't do that for you. You need to call the medical records office.

Me: Hello, Medical records, I would like the results of my blood test.
Receptionist: Sorry, you need to sign a release form that you download off our website and fax it to us.
Me: How long will it take for me to get the information?
Receptionist: 8 - 10 business days , assuming you fill out the form correctly.

>sigh<


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PostPosted: Thu Jul 22, 2010 10:53 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Just ask them to read your results to you - the clinic nurse should be able to do that for you since your provider already made you aware of the results.

betsy

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PostPosted: Fri Jul 23, 2010 6:12 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Ok, they faxed me the records:

HSV1 IGG 0.470
HSV1 IGG 10.005

HSV 1 -IGM(IFA) 40
HSV 2 IGM (IFA) 20

HSV CULTURE - Negative, no HSV isolated

FUNGUS CULTURE - No growth of fungus

GENITAL CULTURE - Normal

RPR - Non reactive

I have no idea what all that means! Hope you can help!


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PostPosted: Sat Jul 24, 2010 6:56 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
I'm going to assume the 2nd igg result was actually hsv2 igg.

You are hsv1 negative.

you are hsv2 positive.

you don't have syphilis.

you didn't have any yeast infections vaginally.

your herpes lesion culture was negative.

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PostPosted: Sat Jul 24, 2010 3:07 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Thank you. I have been treated by about 10-12 doctors over 25 years and have never had a HSV blood test until now, but have had many biopsies and treatments for HPV and different creams, etc. It seems so ridiculous unless this blood test is a recent thing that could not be done before. Because I have no visible lesions, I guess nobody thought of herpes, but, still it seems like a no brainer, since I get outbreaks every few months.

I have three last questions:

1. The outbreaks are getting worse (more painful)--could that be because of menopause? Because I am using an estrogen cream three times a week for vaginal dryness and I wonder if there is any correlation, because I can stop using that.

2. I was given a prescription for Valtrex, which I guess i will keep until next time so I can start it at the beginning. But I can ask for the other medications if a different one is better. The only thing I was told was that the other medications have to be taken less often, which is a plus, so I don't know why they gave me this one.

3. 25 years ago I had a severe case of Pelvic Inflammatory Disease and had to be hospitalized, although I was luckily able to have children after that. But this whole thing started soon after that, and I wonder if there could be any connection. My husband was my only partner and he has never experienced any herpes symptoms, but was treated for HPV.

thank you. I wish my doctor would be more helpful but they hardly have time to call me back, if they ever even bother to do so...


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PostPosted: Sat Jul 24, 2010 5:20 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
1. The outbreaks are getting worse (more painful)--could that be because of menopause? Because I am using an estrogen cream three times a week for vaginal dryness and I wonder if there is any correlation, because I can stop using that.

changes in horomones can cause issues. changes in hormones also cause vaginitis , especially bv , which can be an issue too. I'd keep using the estrogen cream regularly. You want to keep your genital skin healthy while your hormones are changing.

2. I was given a prescription for Valtrex, which I guess i will keep until next time so I can start it at the beginning. But I can ask for the other medications if a different one is better. The only thing I was told was that the other medications have to be taken less often, which is a plus, so I don't know why they gave me this one.

my 2 cents on this is - you have had multiple issues over the years in your genital area. I'd start daily suppressive therapy with one of the herpes antivirals and take the herpes out of it all. If you are still having your symptoms while on suppressive therapy at the frequency of which you are having them now, then you know it's more than just you having hsv2 that is the issue for you genitally. valtrex is taken once daily for suppressive therapy, famvir and acyclovir are 2x/day for suppressive therapy and 3x/day for ob therapy. valtrex is the one you take less often. the herpes handbook goes into details about treating your herpes for more reading if you haven't read it yet. Anyways it just makes more sense in your situation to prevent recurrences of herpes, not wait until you have them and treat them and wait for them to heal and feel miserable until they do right?

3. 25 years ago I had a severe case of Pelvic Inflammatory Disease and had to be hospitalized, although I was luckily able to have children after that. But this whole thing started soon after that, and I wonder if there could be any connection. My husband was my only partner and he has never experienced any herpes symptoms, but was treated for HPV.

As I said, you've had multiple issues over the years. I don't think from the sounds of things you can pin it all down to just 1 thing going on. some of us just don't get a break :(

keep asking questions!

betsy

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PostPosted: Sat Jul 24, 2010 7:30 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Ok--it's time for me to order the herpes handbook! I have an appt. with my doctor in two weeks, but I am going to look for another one.
In the meantime I will take your advice and begin taking the acyclovir 3 x a day (sorry, I was wrong and it isn't Valtrex that I got). I am concerned about the particular side effect of stomach upset or nausea as I have a demanding daily job and there is simply no chance that I can take a medication that will cause those particular side effects, but we shall see. That's why I wanted to know if I should ask for the Valtrex or the Famvir instead so it won't be 3 times a day, or does it even make a difference?

Thank you for the useful advice.


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PostPosted: Sat Jul 24, 2010 8:00 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
the handbook is free to read online or print out at home - www.westoverheights.com

take your acyclovir with meals and if you do have headache or abdominal pain, it will pass in a week or so. You can also consider just starting out with 1 400mg tablet of acyclovir once a day for a few days with dinner ( assuming that is your biggest meal of the day ) and then up it to the 400mg twice a day suppressive therapy dose and see if that helps.

If your insurance covers valtrex it's the most convenient. Acyclovir is the cheapest :) I'm cheap at heart myself!

betsy

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PostPosted: Sun Aug 01, 2010 7:18 am 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Hi Betsy,
I have had my ob for almost two weeks now and no abatement. I can't get in to see my doctor until next Friday, which is 6 days from now. I was taking acyclovir once a day and as of yesterday I started twice a day but I don't have enough until I see the doctor as I only got about 15 pills originally.

I need to find a new doctor but don't have a clue where to look for one who specializes in this. I may have vaginitis along with the herpes, I guess, but it seems I have to sit with it for a week longer and it is so awful. I cannot sleep through the night and wake up to replace ice packs or take pain killers and simply don't know what to do. I used to put cortisone cream on all the time, but now I fear that I may have caused something. Sometimes I put on zinc oxide to coat the area so I can urinate with less pain.

What do people do for topical treatments to get through the night? It seems that being active during the day makes things better but not at night!


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PostPosted: Sun Aug 01, 2010 9:40 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
call monday and ask them to phone you in a prescription for more.

don't use topical steroids at this point. it tends to aggravate herpes.

you can try soaking in the bath tub with 2 cups of vinegar thrown in. that helps with vaginitis as well as herpes. the vinegar is soothing. Plus you can laugh about the smell ....he he he

you ever try dermoplast spray or do you have any prescription topical anesthetics ? helpful to spray them on for comfort.

A barrier cream like zinc or aquaphor also helpful too - heals the skin as well as protects it.

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PostPosted: Sun Aug 01, 2010 4:49 pm 

Joined: Thu Jul 22, 2010 2:12 am
Posts: 8
Location: Los Angeles
Ill try the vinegar bathtub soak. I used to use Aveeno in the bath, but I don't think it helped anything. I would get a topical anesthetic, but the real discomfort is inside the vagina minor labia and it seems that that is probably not a place you are supposed to spray with anything, right? I'd try anything at this point, though.

My one relief is two little blue cubes of "ice" that I bought at Walgreens. They come in a large packet, strung together, for a person to cool their lunch and they can be cut into individual pieces or strips. If you freeze them, and then cut two or three of them and wrap them in a paper towel and stick them up against the right spot when you are seated, or when you go to bed, it sort of helps.


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