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Vulvodynia and Herpes
Has anyone experienced vulvodynia after acquiring a genital herpes infection?
I am either having constant outbreaks or I am experiencing outbreaks and vulvodynia. I can't find out which is which.
Hoping to hear from anyone with experience in this.
Some sites say STDs can cause vulvodynia, others say they can't. I am a little confused and looking for someone's personal experience.
Thanks
I am either having constant outbreaks or I am experiencing outbreaks and vulvodynia. I can't find out which is which.
Hoping to hear from anyone with experience in this.
Some sites say STDs can cause vulvodynia, others say they can't. I am a little confused and looking for someone's personal experience.
Thanks
Thanks grace.
Went to neurologist. Did an MRI. She said its nothing neurological. Ugh
I will do the things you suggest. I still feel it's herpes but I would be happy it's sthng else that I won't carry around my whole life.
Anyway in a tough period of my life likely midlife crisis mode so it hasn't been easy.
Some stuff could be premenopausal I guess
I will try changing my diet and will repost when I get a diagnosis.
Went to neurologist. Did an MRI. She said its nothing neurological. Ugh
I will do the things you suggest. I still feel it's herpes but I would be happy it's sthng else that I won't carry around my whole life.
Anyway in a tough period of my life likely midlife crisis mode so it hasn't been easy.
Some stuff could be premenopausal I guess
I will try changing my diet and will repost when I get a diagnosis.
1 Comments
Hi, I have had hsv 2 for 25 years, always well controlled on antivirals until I hit 42. Then I continuted to take them with outbreaks every few months, but since my last outbreak in october i have daily burning of my labia and a buring feeeling under the skin of my butt. I have been to my gyno and he said its not herpes related. Tested me for other STD's and nothing. I am so depressed. I always feel contagious. How am I going to live like this.
what is this sex thing you speak of? lol
many things can cause all the issues you are having unfortunately. sometimes they are connected and sometimes they aren't. ruling out what is going on can be hard unfortunately. make sure you are getting tested for vaginitis when seen. if there are red areas or tender areas, a biopsy may be helpful to see what is going on. make sure you are also following up with a neurologist for your numbness and tingling issues too.
on the far out there front ( in other words I have watched too much tv lately ), consider a gluten free diet for a month and see if that changes anything. I always figure it doesn't hurt and all the veggies you end up eating are great nutrition :)
when you do get answers, please come back and update your post too. so many posters want to know "the rest of the story" and I like to see people getting answers and feeling better :)
best of luck!!!
many things can cause all the issues you are having unfortunately. sometimes they are connected and sometimes they aren't. ruling out what is going on can be hard unfortunately. make sure you are getting tested for vaginitis when seen. if there are red areas or tender areas, a biopsy may be helpful to see what is going on. make sure you are also following up with a neurologist for your numbness and tingling issues too.
on the far out there front ( in other words I have watched too much tv lately ), consider a gluten free diet for a month and see if that changes anything. I always figure it doesn't hurt and all the veggies you end up eating are great nutrition :)
when you do get answers, please come back and update your post too. so many posters want to know "the rest of the story" and I like to see people getting answers and feeling better :)
best of luck!!!
Thanks grace. I hope you feel better too
I fear though herpes has caused vulvodynia and post viral syndrome and that's why so many parts are affected but your deduction seems just as plausible.
I am tired. I have abstained from sex for 9 months and I am slowly becoming weaker I don't know what I disclose or what to say to potential partners.
Anyway thanks for ur support
I fear though herpes has caused vulvodynia and post viral syndrome and that's why so many parts are affected but your deduction seems just as plausible.
I am tired. I have abstained from sex for 9 months and I am slowly becoming weaker I don't know what I disclose or what to say to potential partners.
Anyway thanks for ur support
this sounds like something non-herpes related. Your symptoms, how many body parts they are affecting and the length they are lasting really point to something else going on. finding out you have hsv1 is just a coincidence from the sounds of things.
Hopefully you soon start getting answers!! From my own been there, done that files, I know how frustrating it can be to know something is going on and not getting quick and easy answers :( My herpes has been the least of my genital woes ! So many things can be going on that have nothing at all to do with herpes. Finding a provider who is willing to figure out what is going on, makes all the difference and it sounds like you found one that is determined to help you :)
Hopefully you soon start getting answers!! From my own been there, done that files, I know how frustrating it can be to know something is going on and not getting quick and easy answers :( My herpes has been the least of my genital woes ! So many things can be going on that have nothing at all to do with herpes. Finding a provider who is willing to figure out what is going on, makes all the difference and it sounds like you found one that is determined to help you :)
I feel so comforted that you are responding Grace.....much appreciated...I feel so alone....
Yes at 8 months post exposure positive hsv1...i have no score....i am in canada....they don't report it like that just positive or negative
No biopsy has been done...just swabs of any white fluid filled pimples they look like near perineum...swabbed these for hsv a few times all times negative and there was definitely enuff stuff in them to get a positive or negative.....all dr said didn't look like herpes
the bumps on my thighs and tailbone, neck have never been biopsied...the derm said eczema...but I am not so sure although I do suffer from it but why would it be randomly scattered on my thighs?
I don't have to pay for doctors as we have national health care in Canada but it just takes so long to get an appointment with them. I am going to infectious disease specialist in 2 weeks and will ask for a referral to vulvodynia specialist.
I need to swab inside but with constant symptoms...right now back of upper right thigh is totally numb....day to day it changes or either burning, itching (although not much anymore), numbness, pins and needles....same with my face, neck, scalp....
I don't want to scare anyone...not at all....i am not fear mongering....so please forgive me, I am just trying to be honest with my symptoms.
I think I have post viral syndrome after hsv1...I think my body is hyper reacting.....I have been working on me for 9 months, therapy, antidepressants, trying to push my life in apositive direction....seen many drs, and I just can't get a diagnosis.
My infectious disease specialist says he is determined to figure out what it is. He seems lovely so I believe him. I just need someone who is as committed to find out what's happening to me as I am....as I am an intelligent woman, I can wrap my head around medical jargon and supposing.....I need a professional to order the tests, provide the drugs and prognosis.....I hope this dr is it...
Much love to you Grace for your dedication to helping people.
I fear it will be ghsv1 with constant prodomes and symptoms....then how do I have sex if antivirals don't help? I am scared for anyone to touch me? How can I live like that?
ANyway, SIGH....lots of issues besides medical....little bit of hopelessness.
Yes at 8 months post exposure positive hsv1...i have no score....i am in canada....they don't report it like that just positive or negative
No biopsy has been done...just swabs of any white fluid filled pimples they look like near perineum...swabbed these for hsv a few times all times negative and there was definitely enuff stuff in them to get a positive or negative.....all dr said didn't look like herpes
the bumps on my thighs and tailbone, neck have never been biopsied...the derm said eczema...but I am not so sure although I do suffer from it but why would it be randomly scattered on my thighs?
I don't have to pay for doctors as we have national health care in Canada but it just takes so long to get an appointment with them. I am going to infectious disease specialist in 2 weeks and will ask for a referral to vulvodynia specialist.
I need to swab inside but with constant symptoms...right now back of upper right thigh is totally numb....day to day it changes or either burning, itching (although not much anymore), numbness, pins and needles....same with my face, neck, scalp....
I don't want to scare anyone...not at all....i am not fear mongering....so please forgive me, I am just trying to be honest with my symptoms.
I think I have post viral syndrome after hsv1...I think my body is hyper reacting.....I have been working on me for 9 months, therapy, antidepressants, trying to push my life in apositive direction....seen many drs, and I just can't get a diagnosis.
My infectious disease specialist says he is determined to figure out what it is. He seems lovely so I believe him. I just need someone who is as committed to find out what's happening to me as I am....as I am an intelligent woman, I can wrap my head around medical jargon and supposing.....I need a professional to order the tests, provide the drugs and prognosis.....I hope this dr is it...
Much love to you Grace for your dedication to helping people.
I fear it will be ghsv1 with constant prodomes and symptoms....then how do I have sex if antivirals don't help? I am scared for anyone to touch me? How can I live like that?
ANyway, SIGH....lots of issues besides medical....little bit of hopelessness.
you had a blood test come back as + for hsv1?
really no reason to think that your symptoms are due to herpes. they don't sound herpes related at all. Have you sought out a vulvodynia specialist in your area to follow up with? You might have to pay out of pocket for the specialist but it would be worth it.
have they done a biopsy of any of the genital areas that you have symptoms in?
really no reason to think that your symptoms are due to herpes. they don't sound herpes related at all. Have you sought out a vulvodynia specialist in your area to follow up with? You might have to pay out of pocket for the specialist but it would be worth it.
have they done a biopsy of any of the genital areas that you have symptoms in?
Sophie
Your post made me cry. Thank you for takin the time to respond to me
It's bad enough I have ghsv1 (I think) but to have constant prodome and vulvodynia on top of that....knowing that I am a freak within my own herpes community is just soooo hard to swollow.
I could live with ghsv1 if it actually went dormant!!!
Please explain your symptoms and post for results and your doctors advise. Many thanks to you!!!!
Ann
Your post made me cry. Thank you for takin the time to respond to me
It's bad enough I have ghsv1 (I think) but to have constant prodome and vulvodynia on top of that....knowing that I am a freak within my own herpes community is just soooo hard to swollow.
I could live with ghsv1 if it actually went dormant!!!
Please explain your symptoms and post for results and your doctors advise. Many thanks to you!!!!
Ann
hello, don't feel bad, you're not alone. I am experiencing the same exact symptoms. I had a bunch of tests done on friday so I haven't gotten the results back yet. Don't give up hope i'm sure they will find out whats going on with you. If this is a cause of HSV 1 then it will eventually die down and someone out there will accept you just the way you are.
sophie
sophie
And if it I not vulvodynia I am having repetitive prodome.
I fear I am one of the rare ones that don't deal well with hsv1.
How can I live like that? I just feel hopeless.
I fear I am one of the rare ones that don't deal well with hsv1.
How can I live like that? I just feel hopeless.
Grace....so lovely to hear from you.
I don't have a definitive diagnosis yet
I had 2 negative Hsv tests 6 months and before then had a positive one at 8 months for hsv1. I was celibate for all those 8 months and it was tough!!!! Still am btw
Drs hbe been saying the negatives could be false negative and the positive could be false positive (negative tests done with one lab, positive at another).
I would rather not go into exposure etc
I have been swabbing orally and genitally but hae yet to receive a positive swab. I am going during the required period so I don't know hats going on. The only place I haven't swabbed is cervix but everyone's looked inside and can't see anything. I have had a pap done and came back normal.
It's hard toget drs to want to swab where I am we have a national health care system and unnecessary expenditures and tests are frowned upon.
I hae been tested for all other stds multiple times and are negative. Tested for bv and yeast negative. I am at a loss.
Am now at an infectious disease specialist at a reputable hospital.
I think I am one of the freaky few that get ridiculous symptoms from hsv1 and valtrex doesn't help. I think the virus may have damaged my nerves as anytime I have sexual activity my vagina is sore for about a week after and it is definitely not rough sex bc I am not getting any.
I have numbness, pain, burning, pins and needles, no typical lesions. I have bumps that appear now w no fluid on tailbone and thighs which never appear in clusters and look like minuscule tiny pimples. All drs said not herpetic. Can't swab bc no fluid and can't get to a derm to do a biopsy within 48 hours.
I am at a loss and I feel I will never know what I have. I go to the infectious disease doc in 2 weeks and am struggling to make it as this has been a 9 month horrific journey.
I am not dead set about herpes, the symptoms are not psychological. I am an intelligent woman. Something's going on w my body and it all started happening post my exposure.
Please grace, kindly give me your advice. I can't be celibate forever but I know this is ghsv1
I don't have a definitive diagnosis yet
I had 2 negative Hsv tests 6 months and before then had a positive one at 8 months for hsv1. I was celibate for all those 8 months and it was tough!!!! Still am btw
Drs hbe been saying the negatives could be false negative and the positive could be false positive (negative tests done with one lab, positive at another).
I would rather not go into exposure etc
I have been swabbing orally and genitally but hae yet to receive a positive swab. I am going during the required period so I don't know hats going on. The only place I haven't swabbed is cervix but everyone's looked inside and can't see anything. I have had a pap done and came back normal.
It's hard toget drs to want to swab where I am we have a national health care system and unnecessary expenditures and tests are frowned upon.
I hae been tested for all other stds multiple times and are negative. Tested for bv and yeast negative. I am at a loss.
Am now at an infectious disease specialist at a reputable hospital.
I think I am one of the freaky few that get ridiculous symptoms from hsv1 and valtrex doesn't help. I think the virus may have damaged my nerves as anytime I have sexual activity my vagina is sore for about a week after and it is definitely not rough sex bc I am not getting any.
I have numbness, pain, burning, pins and needles, no typical lesions. I have bumps that appear now w no fluid on tailbone and thighs which never appear in clusters and look like minuscule tiny pimples. All drs said not herpetic. Can't swab bc no fluid and can't get to a derm to do a biopsy within 48 hours.
I am at a loss and I feel I will never know what I have. I go to the infectious disease doc in 2 weeks and am struggling to make it as this has been a 9 month horrific journey.
I am not dead set about herpes, the symptoms are not psychological. I am an intelligent woman. Something's going on w my body and it all started happening post my exposure.
Please grace, kindly give me your advice. I can't be celibate forever but I know this is ghsv1
vulvodynia is just a fancy name for pain in the genital area. many things can cause it.
at this point, make sure you are following up regularly with a gyn as needed for your symptoms. Make sure you are getting properly tested for yeast and bacterial infections vaginally too when you are seen. they don't always present with discharge or odor so testing for them is a good idea.
how were you diagnosed as having genital herpes? do you have hsv1 or hsv2? are you on suppressive therapy?
grace
at this point, make sure you are following up regularly with a gyn as needed for your symptoms. Make sure you are getting properly tested for yeast and bacterial infections vaginally too when you are seen. they don't always present with discharge or odor so testing for them is a good idea.
how were you diagnosed as having genital herpes? do you have hsv1 or hsv2? are you on suppressive therapy?
grace
In order to help... U need to provide more details....
When u say outbreak... Are u having sores or lesions and where?
How long have u had the pain or symptoms ?
Why do u think u have hsv? Did u recently have risky exposure?
God bless, S
When u say outbreak... Are u having sores or lesions and where?
How long have u had the pain or symptoms ?
Why do u think u have hsv? Did u recently have risky exposure?
God bless, S
I have not been diagnosed yet. I have an appt in a few weeks and wanted to propose this to dr as possible cause
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
