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  • #19816
    mugsie23
    Participant

    Hi,

    So I was diagnosed with genital HSV type 1 in 2011 by my doctor, i went in just because i felt uncomfortable, but she told me she saw sores and did a swab test. The tests came back that it was type 1 and i was told by her on numerous occasions that type 1 genitally is just a fluke that happens sometimes.. she said it probably wont ever come back and to not even waste time worrying or thinking about it. So thats what i did. I’ve dated since then and been in monogamous relationships where we did not use protection. There was never an issue, and to my knowledge, it was never transmitted to them.

    I’ve probably had 3 outbreaks since diagnosed in 2011.. never severe and they went right away. I began taking suppressive therapy when i was dating because i am a worry wart and knew that the chances of transmission are greatly reduced.

    So basically, its never been much of an issue for me. up until this point, the infection hardly showed its face, and when it did, it disappeared quickly. Starting in March 2015 i started to feel that something wasn’t right down there.. it felt like razor burn or just irritated skin where my underwear was hitting.. always on the left side, i didn’t put it together that it might be HSV, this was never how the outbreaks had gone before. This continued then i noticed 3 little red spots while i was on vacation in april and i thought “dang, i guess this is another outbreak” i took my 500mg a day and within 2 days felt fine. But then 2 days after that I had this very annoying almost tickle feeling down there that i couldn’t shake. Then it changed to a pinching feeling that would come and go and come and go in waves. always in the same spots. after this stopped, i had pretty severe tingling. I was, and unfortunately still am, constantly aware of the infection because it just isn’t shaking this time. since then i’ve never fully gotten better and i dont know why. My doctor told me to start taking two pills a day and go back to my normal self, so i am now taking 1000mg of valcyclovir a day. I will have 24 to 48 hours where i feel 95% better and start thinking “finally this is ending!” only to wake up the next day and be irritated and starting the process all over again. Right now i’m just itching like crazy. The itching seems to come in waves.. I really am at a loss here. I am 23, athletic, healthy, nonsmoker, I drink, but with this going on i’ve been taking it easy, Ive gotten tested for HIV and all other STDs because me being a worry wart i convinced myself i contracted other diseases which is making it so my immune system can’t do its job. all of which isn’t the case. I’m getting accupuncture once a week and taking herbal supplements from my accupuncturist for the HSV, i don’t know what herbs they are, the whole box is in chinese. I’m healthy!!! I just don’t get it! I just graduated college, i’m moving to a new state in 2 months, i’m ready for my next adventure.. but this is really taking so much out of me. It’s depressing, i can’t talk to anyone about it.

    I think i could go back to my normal self if i could get the symptoms to go away, but it is impossible to forget about it when i am constantly feeling an itch or a pinch and it just keeps reminding me what i have going on. I want to be free and happy again. I am such a happy cheery person, and still am, but lately it feels like an act. Like i am tricking myself into staying happy to avoid thinking about whatever the heck is going on. I will mention that i switched to an IUD in December, which maybe is playing a part in all of this? But i am getting it removed in 2 weeks, i’m not happy with the way it makes my body feel.

    Well now you’ve read my miniature novel. I think i’ve given all information that is imperative. What should i do? I can’t keep living like this. It makes going to work harder, going to see a movie uncomfortable.. so on and so fourth..

    ~

    #19391
    Stephanie
    Participant

    From everything I have read and learned from Dr. Kelly, the virus is a skin to skin transmission, meaning it is extremely difficult if not impossible to transmit the virus unless there is skin to skin contact in the affected area. During an outbreak is the most obvious time that you will pass the virus on if someone touches the area, but there are also times called asymptomatic shedding that happen 4-13% in an given year. This means your skin in the area could be shedding the virus without symptoms occurring. I don’t want to tell you this to scare you, because like I said first there is a small, if even no, chance that you will pass it on to your daughter unless her skin and your skin are in contact with a fair amount of friction during an outbreak. I hope this helps to ease your mind!

    #19635

    In reply to: Nerves

    Stephanie
    Participant

    I know where you are coming from. After dating a guy and having the talk with him he seemed very uneasy to do certain things sexually even though he said he did not care. Have you and your boyfriend talked about transmission and options for protection and what not? I think that would be a good place to start. He might be afraid to bring it up in fear of hurting your feelings, but maybe he just needs some reassurance that you can have safe sex regardless of the virus. Hope that helps!

    #19843
    katy
    Participant

    I am having a hard time dealing with the anxiety i have about passing it to my boyfriend. He’s well aware I have HSV-2 and we’ve talked a lot about it, how to be safe, etc. but the problem is i don’t understand my symptoms. I’ve gone to dr’s repeatedly when I am suspicious of things (some burning, redness, etc). and their feedback is that it’s either not it or probably not (couldn’t rule it out, but leaving the possibility open). I’ve gone to multiple dr’s, done swabs etc. but nothing conclusive has resulted.The symptoms happen fairly often, i’ve tried drugs and they don’t seem to help. I’ve had sexual relations with them before and to my knowledge, knock on wood, have not passed it. I allude to the fact sometimes things don’t feel 100% to my boyfriend but i still don’t get too detailed or stop him from being intimate with me. Afterwards, I panic that i have given him something. I know i’ve informed him but I still feel responsible for doing my best not to give it to him and worry that I haven’t gone into enough detail about my symptom confusion, etc. I’ve told him I don’t know if i’ve had symptoms and feel badly I can’t tell as well as i want to but again, at the end of the day, I don’t stop him.

    I want to free myself of this paranoia and guilt, it’s starting to really wreak havoc with my psyche. We’ve only been dating 6 months too so I don’t know yet if he’s the one, etc. and I feel badly that I am putting him at risk without knowing if this will last or not. How do people deal with this issue?

    #19436
    Kelsey
    Participant

    Hi everyone. I was recently diagnosed a month or two ago. First, I’ll tell you a little about myself because I refuse to be defined by this diagnosis. I am a female in my early 20s. I love the outdoors, being with family and friends, and I love…to love. I always try to see the best in people, to a fault at times. So… I was single and made a mistake that changed the rest of my life. I had had a few too many drinks and was ready to just go to bed, but one kiss led to another and before anything more happened I said it needed to stop. It took a few times before he backed off, but by this time we had already had contact. We did not actually have sex, but we touched and apparently that was enough for me to get it. I didn’t know at first obviously. Soon after, I reconnected with an old friend whom I had always had feelings for. We had never been on the same page until now. We decided to give things a try. A week later….I found out I had genital herpes. I was devastated. I thought no one would ever love me now. I immediately told him along with my parents They were so understanding. My now almost boyfriend.. had so many questions and so many different emotions about it. But he stood by me through it all…he came to appointments with me and even asked his own questions. Things are going well for us now, but he still gets nervous to touch me in that area I think. I can tell and he has said it before. I understand where he is coming from, but it’s so hard…I just want to feel normal 🙁 does anyone have any advice? Do you think he will eventually come around and be more okay with the risk? I am on a daily medication to reduce the risk of transmission too.

    #19148
    Dr. Kelly
    Keymaster

    Great site and forum!

    4 years ago, I had a genital lump that was visually diagnosed as Herpes. I had gotten sick beforehand with what I presumed was tonsillitis.fever and sore throat etc…

    Around a week after the infection, the lump appeared. I was given anti virals, but did not get swabbed. It was one large slightly ulcerated red lump

    After this primary outbreak it never came back and I became more and more frustrated that it hadn’t been ‘confirmed’ by testing.I managed to find a place that tested for HSV2 only. That blood test came back negative – I was told it could have been HSV1 or herpes Zoster (??) or absolutely nothing at all. There seems to be no one that will give me a HSV1 test to check.

    In term of recurrences. I once got a tiny red dot that was confirmed as nothing by doctors. Another time, I got a pang on a patch of skin when I was in shower. It vanished by the next day so I couldn’t even get any sort of confirmation as to what it was. I sometimes get sharp pains and zingy/pins and needles feelings on my lower back, legs, groin area, feet and even hands. I am not sure if that could be anything related to it. ( but I have been told by a doctor that it wasn’t).

    I am now in a sort of limbo where I do not know what measures to take in the future. Should I disclose this information to future partners? what ‘risks’ do I pose in terms of transmission? Internet research is a minefield! I read articles and journals telling me I don;t need to do a thing ( 90 percent of people have it etc..), then other forums that say disclosure is fundamental and ‘I got hsv1 from genital transmission’ stories that make me anxious all over again.

    any thoughts?

    #19728
    ccc
    Participant

    Great site and forum!

    4 years ago, I had a genital lump that was visually diagnosed as Herpes. I had gotten sick beforehand with what I presumed was tonsillitis.fever and sore throat etc…

    Around a week after the infection, the lump appeared. I was given anti virals, but did not get swabbed. It was one large slightly ulcerated red lump

    After this primary outbreak it never came back and I became more and more frustrated that it hadn’t been ‘confirmed’ by testing.I managed to find a place that tested for HSV2 only. That blood test came back negative – I was told it could have been HSV1 or herpes Zoster (??) or absolutely nothing at all. There seems to be no one that will give me a HSV1 test to check.

    In term of recurrences. I once got a tiny red dot that was confirmed as nothing by doctors. Another time, I got a pang on a patch of skin when I was in shower. It vanished by the next day so I couldn’t even get any sort of confirmation as to what it was. I sometimes get sharp pains and zingy/pins and needles feelings on my lower back, legs, groin area, feet and even hands. I am not sure if that could be anything related to it. ( but I have been told by a doctor that it wasn’t).

    I am now in a sort of limbo where I do not know what measures to take in the future. Should I disclose this information to future partners? what ‘risks’ do I pose in terms of transmission? Internet research is a minefield! I read articles and journals telling me I don;t need to do a thing ( 90 percent of people have it etc..), then other forums that say disclosure is fundamental and ‘I got hsv1 from genital transmission’ stories that make me anxious all over again.

    any thoughts?

    #19442
    Glo
    Participant

    Hello all you beautiful women,
    Well, I don’t know how to put in all in words, but here’s my story….I am a 53 year old gal who has always prided herself on being healthy and active. I run trails, hike, work out , teach yoga (15 years now), cycle , and eat organic ,healthy foods. My commitment to staying healthy was undeniably influenced by witnessing my mother suffer and battle breast cancer. Now…..this is truly a relentless, unforgiving disease. I was 10 years old and watched my mother lie in her bed crying, knowing the disease had progressed to terminal. Soon thereafter, she entered the hospital and I never saw her again. She was 47 years old.
    To say that my new diagnosis of herpes is nothing compared to what my mother endured would be accurate, however,I cannot minimize the emotional pain and physical discomfort that I have been experiencing.
    I was married for 22 years and have 2 young adult kids. I was faithful throughout. I have been divorced now for 5 years. Over the course of 27 years, I have had 4 sexual partners. No one night stands..not that any of this matters.
    Last week, I started feeling tired, achy, chilled. I felt pressure and horrific itching around my rectum which I though was an inflamed hemorrhoid. I went to my GYN the next day because I knew something had to be wrong. She took one look at me and ordered separate blood tests for both HSV 1 and 2. She obtained a culture as well. First blood test came back seropositive for HSV 2. Lovely. I had never had any symptoms in my entire life that I was aware of. Not even a yeast infection. In addition, I have never had a call from any past sexual partner regarding transmission of herpes. If anyone had it, they must have been asymptomatic as well. 2nd blood test came back negative for HSV 1 (phew! )…then, dum dum dum…the culture came back positive for HSV 1! Fantastic! The double whammy!!! In the words of Dolly Parton, I don’t know whether to scratch my watch or wind my ass! Has anyone else been diagnosed with both??? I almost wish my GYN had just dealt with the current OB. I find myself feeling envious of other women my age who are possibly asymptomatic but don’t have to wear the scarlet H letter. Apparently, according to newer research, 50-75% of women aged 45-50 something are positive for HSV2. Most have no clue. They are blissfully unaware like I was,,,but I know that would be so selfish of me. I would never knowingly give anyone anything they didn’t want, especially herpes! This body that I have always honored and cared for has been attacked with a virus that wants to settle in for life. ugh. In addition to dealing with the perceived loss of my sexual health, I am also pending the possible loss of the man who(according to my GYN) most likely gave me HSV1 and whom I had fallen in love with. He has been somewhat supportive, however I am bracing myself for the “fade out”.
    I know in time I will turn this thing around as everything in the universe co-arises with its opposite. I’ll eventually wear the H as a sign of internal courage and strength. I will learn to “lean in” and I will not be defined by this thing. There is a benevolence here somewhere and in release, we begin.
    ” I will always have fears , but I need not be my fears, for I have other places within myself from which to speak and act” – Parker j. Palmer.

    #19851

    In reply to: Pantyliners

    Dr. Kelly
    Keymaster

    Aly,

    I agree with your GP that ideally, women with herpes should wear cotton panties. We are also advised to not wear thongs. However, I do NOT believe that panty liners will increase the transmission of the virus.

    Keep in mind though that some women develop an irritation to daily use of panty liners. Similar to herpes, this would also create itching in the genital area. This would be something for you to rule out if you are experiencing any itching in the absence of other herpes related symptoms. If you remove the panty liners and the irritation resolves, then it might be an allergy to the panty liner.

    Hope this helps.

    Dr. Kelly

    #19748
    Eli
    Participant

    I am so glad I found your book and this site. My outbreaks have always been on my buttocks (I assume this is the s1 nerve?). My doctor thought I might have contracted it in other way than through sexual transmission (the sore is in the “toilet seat area”). I’ve been with my husband for 19 years and have always been faithful. My outbreaks started long after I’ve been married. I’ve barely had outbreaks and it always healed quickly with no pain. I’ve always has skin issues (excema, etc.) and never did it occur in my mind that this could be Herpes. Since last fall I’ve been going through stressful times and have been dealing with lots of anxiety and worries. I had a more severe outbreak end of November and since then keeps returning every other week in a milder form. It seems as if I can’t get rid of it even though I do my best to improve my immune system but still have a hard time coping with stress. I am now terribly afraid that the sores could appear in my genital area as well. Is this possible? Thank you for all you do, Dr. Kelly. You are an inspiration.

    #19529

    In reply to: undiagnosed

    Dr. Kelly
    Keymaster

    Klynn,

    Take one day at a time. I would definitely have your healthcare professional do a blood test and culture to confirm your diagnosis.

    My guess is that your if this person is your soul mate, then they will be compassionate about this too. Fortunately, genital herpes is something that you can learn to manage and greatly reduce the risk of transmission to your partner.

    Keep us posted,
    Dr. Kelly

    #19856
    Dr. Kelly
    Keymaster

    Shasta,

    Thank you for sharing! Your question is excellent!

    The herpes virus can present itself (i.e.) show symptoms anywhere along the nerve branch where transmission occurred. While the virus lives within your spinal chord, when it is active, it travels along the nerve at the level of your spinal chord and it then becomes active at the surface of your skin. An “anal outbreak” is one of several branches from the same root. Think of a tree and all of it’s branches. If your symptoms are directly around the anus, then we know S5 nerve root was infected. If; however, the symptoms are further away from the anus, then it would indicate another sacral nerve (S2, S3 or S4) was infected(see image from lucy.stanford.edu)
    Pelvic Dermatomes

    As you can see, the S3 branch extends up and around the vagina and it also affects the skin more distantly around the anus. It really depends on how close your symptoms are to the anus. If your symptoms are directly next to the anus, then the S5 nerve root was affected, which means that transmission did occur from friction around the anus. If the symptoms are in the general area, then it could indicate that transmission occurred from contact anywhere within the patch of skin associated with the nerve root, aka the dermatome.

    Check out the image and reference where your symptoms are. This will be the telltale sign of whether or not you contracted herpes from anal sex or not.

    I hope this helps.

    Live. Love. Thrive.
    Dr. Kelly

    #19855
    Shasta
    Participant

    Question!

    I didn’t get a whole lot of time to discuss this all with my doctor when I was diagnosed as it was a bit of a shock and of course I wasn’t thinking particularly straight. So I have a question about transmission routes:

    My genital herpes outbreak is in the anal region. My doctor asked me if my husband and I have ever had anal sex and I automatically answered ‘no’ because we don’t. BUT, when we were first together we DID experiment. That was about nine years ago so it didn’t immediately occur to me because hey, it was nine years ago.

    The doctor mentioned something about the route of least resistance to the effect of anal sex being the most likely culprit due to my outbreak presenting in that area. Is this true? Is it likely that I got the infection this way when we were experimenting? My husband is the only one I have ever experimented with.

    Thanks!

    #19552
    Dr. Kelly
    Keymaster

    Paige,

    My heart breaks open for you. I can remember what it was like when I was first diagnosed. I cried myself to sleep for a long time.

    I promise you that it does get better and that you are supported here in this forum. I am thrilled that you found this forum so early in your journey. Use this sisterhood of Women Supporting Women with Herpes to ask questions and get support.

    Please know that herpes does not need to define you. If it works out with your boyfriend that’s great, but be sure that he is the right man for you. There are so many women who stay in relationships that are not healthy simply because of their partner accepting their herpes.

    There are several things you can do to decrease symptoms and transmission. Focus on decreasing the stress in your life and removing any known triggers from your diet (i.e. foods high arginine like coffee, nuts and alcohol). You can also use condoms and antivirals (natural or prescription) to decrease transmission.

    Take care of yourself and take time to nurture yourself each and every day. You are loved beyond measure and you can overcome this.

    Live. Love. Thrive.
    Dr. Kelly

    #19662

    In reply to: Oral sex

    Dr. Kelly
    Keymaster

    Do you know whether you have HSV1 or HSV2? Also, you would need to know the status of your partner for a more precise answer. If you only have HSV2 genitally, then you will not pass that on orally to a partner by kissing them. In this scenario, you can also give and receive oral sex without the fear of transmission. HSV2 is rarely found in the mouth (less than 1% of the time)

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