Recurrent Genital HSV-1 & Female to Female Transmission

[pdxbabe]

Hi Terri! Thanks so much for your informative work, your research has given me a great measure of calm.

I’m a female in my 20s. I had a very severe first outbreak on my genitals last May, which I confirmed with an IgG HSV-1 diagnosis. I know the infection was new — I was assaulted, and prior to that I had included HSV 1 & 2 tests in my routine checkups since I have multiple partners. I had raging headaches, swollen glands and severe sneezing and flu-like fits for over ten days. I also developed 10+ painful butterfly lesions on my labia, perineum, anus, and inside my vaginal opening. I treated my symptoms with clobetasol, lidocaine and topical acyclovir. It took about three weeks for the lesions to go away and I was left with some scarring. Before they had even healed I was already starting a second outbreak. I couldn’t afford antivirals so I opted to let it run its course and use topicals. My PCP said that would build my immune system up better in the long haul anyway.

A year later, severity and duration is still pretty bad, and frequency is every 2-8 weeks. I’d say average once a month now.

I almost always get small red spots on my thighs and buttocks, which are confusing because they closely resemble pimples or ingrown hairs and I’m never sure which is which (I very rarely had those before). About half the time I get “allergy” symptoms, prodrome tingling, fissures or a recurring painful lesion on my anus. Every three months or so I have a severe outbreak — not as bad as the first one, but enough to keep me miserable for a week and at home for a few days. Headache, sneezing, chills, phlegm, dry eyes, big weepy lesions, discharge, the whole works.

QUESTIONS:

1) I finally have insurance. Should I try suppressive therapy? If so, what’s most effective for genital HSV-1 as opposed to genital HSV-2? Are there any home remedies or lifestyle changes that would help my immune system? How long do I stay on antivirals?

2) Since I’m nearly always coming off or into an outbreak, I’m never sure when I’m least contagious. I’m really afraid of infecting someone else *or* getting HSV-2 and making my symptoms worse. However, I have multiple female partners and also really enjoy casual sex. Since there doesn’t seem to be much research on female to female transmission, I’ve mitigated risks by keeping strict sexual protocols. It seems to be working! All partners since my diagnosis have been aware of my status, and to my knowledge no one has been infected. To be honest though, between the stigma, my anxiety, and the precautions I’m taking, I’ve lost a couple relationships, had some bad reactions from new partners, and the quality of my erotic life is way down.

— I avoid being touched genitally when I have lesions or within a couple days of prodrome (which is often)
— I never rub genitals or receive oral unless my partner has HSV-1 (hypothetical, no one has tested positive yet)
— I only give oral to one regular partner… they are HSV-2 free and we are fluid-bonded only with each other
— I do mutual masturbation but only if I touch my partner first. I wash my hands after touching myself, and don’t touch their mucous membranes afterward
— I’ve tried using gloves on me during outbreaks… and dental dams anytime… but it’s unpleasant and I can’t really feel anything, so I just avoid those activities. Man I miss oral sex.
— I never share toys unless they have condoms or are washed between use

Am I being too strict? If I follow these practices completely do I even need to disclose? Would I be able to relax some of these rules with a regular partner if suppressive therapy worked? All my partners are poly too. The thought of sending this awful virus out into the community makes me shudder.

I miss spontaneous sex — not risk-free or careless, I just mean now I’m always calculating what parts of my skin can touch where, or if I brought my full safe sex kit, it all requires so much preparation — snapping on gloves, did I remember the condoms for the toy, nope? well I guess that’s off the table — or only one of us can use it now — worrying about dental dams slipping off, where has this hand been, is there a sink with soap nearby — it’s exhausting. And barriers deaden my sensitivity so much it’s just not even worth it. I find myself topping all the time now because receiving pleasure is so… artificial.

3) Any info on these:

— I’m still unclear what risk vaginal secretions pose to a partner. And what about squirting and menstrual blood? Does it matter if it’s directly to the mouth or genitals, or indirectly (licking a wet hand, rubbing fluid off your thigh, etc)
— To avoid herpetic whitlow, does a partner really need to use gloves if they don’t have cuts on their hands? What about if they were stimulating me manually *during* a mild outbreak?
— For frottage, how close to my genitals can I rub or be rubbed? Inner thigh, buttocks? What about nearby skin being kissed?
— Rough sex, i.e. rubbing my genitals or getting fluids on skin with abrasions, bites, cuts

Sorry this is long. Thank you so much!

[Terri Warren]

1) I finally have insurance. Should I try suppressive therapy? If so, what’s most effective for genital HSV-1 as opposed to genital HSV-2? Are there any home remedies or lifestyle changes that would help my immune system? How long do I stay on antivirals?

You certainly can try suppression though most people with genital herpes do not require it. I’m curious – are you still using clobetasol? It is a steroid, you know, and by applying it you can a herpes outbreak going for a very long time. It is not to used to treat herpes, so your provider and I are on very different pages about this, for sure. I’ve seen someone keep an outbreak going for six weeks using steroid creams before coming to see us. When she stopped, the outbreak resolved. You need your local immune response to keep the herpes under control and by using steroid creams, you are taking that away.

2) Since I’m nearly always coming off or into an outbreak, I’m never sure when I’m least contagious. I’m really afraid of infecting someone else *or* getting HSV-2 and making my symptoms worse. However, I have multiple female partners and also really enjoy casual sex. Since there doesn’t seem to be much research on female to female transmission, I’ve mitigated risks by keeping strict sexual protocols. It seems to be working! All partners since my diagnosis have been aware of my status, and to my knowledge no one has been infected. To be honest though, between the stigma, my anxiety, and the precautions I’m taking, I’ve lost a couple relationships, had some bad reactions from new partners, and the quality of my erotic life is way down.

Do you know that 56% of the US population already has HSV 1 and most don’t know it? I would recommend that you ask the simple question “have you ever had a cold sore in your lifetime?” if the answer is yes, then also have HSV 1 and they will not acquire your HSV 1 genital infection. Also, most people with HSV 1 don’t have cold sores or genital herpes symptoms; they are asymptomatic but will not contract your HSV 1 if they are already infected

— I avoid being touched genitally when I have lesions or within a couple days of prodrome (which is often)
— I never rub genitals or receive oral unless my partner has HSV-1 (hypothetical, no one has tested positive yet)
— I only give oral to one regular partner… they are HSV-2 free and we are fluid-bonded only with each other
— I do mutual masturbation but only if I touch my partner first. I wash my hands after touching myself, and don’t touch their mucous membranes afterward
— I’ve tried using gloves on me during outbreaks… and dental dams anytime… but it’s unpleasant and I can’t really feel anything, so I just avoid those activities. Man I miss oral sex.
— I never share toys unless they have condoms or are washed between use

That extremely cautious for sure! Wow. I really think mutual masturbation is such low risk if any risk.
Also, someone with HSV 1 could certainly give you oral sex!

Am I being too strict? If I follow these practices completely do I even need to disclose? Would I be able to relax some of these rules with a regular partner if suppressive therapy worked? All my partners are poly too. The thought of sending this awful virus out into the community makes me shudder.

If you do all of this, you don’t need to disclose, no. Suppressive therapy would certainly help to reduce transmission. I also wonder about all your symptoms If you are using steroids, I would certainly consider stopping.
Gloves? I really don’t think you need gloves!

Have you considered asking people to get tested for HSV 1, antibody?

I miss spontaneous sex — not risk-free or careless, I just mean now I’m always calculating what parts of my skin can touch where, or if I brought my full safe sex kit, it all requires so much preparation — snapping on gloves, did I remember the condoms for the toy, nope? well I guess that’s off the table — or only one of us can use it now — worrying about dental dams slipping off, where has this hand been, is there a sink with soap nearby — it’s exhausting. And barriers deaden my sensitivity so much it’s just not even worth it. I find myself topping all the time now because receiving pleasure is so… artificial.

3) Any info on these:

— I’m still unclear what risk vaginal secretions pose to a partner. And what about squirting and menstrual blood? Does it matter if it’s directly to the mouth or genitals, or indirectly (licking a wet hand, rubbing fluid off your thigh, etc)
— To avoid herpetic whitlow, does a partner really need to use gloves if they don’t have cuts on their hands? What about if they were stimulating me manually *during* a mild outbreak?
— For frottage, how close to my genitals can I rub or be rubbed? Inner thigh, buttocks? What about nearby skin being kissed?
— Rough sex, i.e. rubbing my genitals or getting fluids on skin with abrasions, bites, cuts

Unfortunately, we don’t have data on HSV 1 transmission because for most people, shedding and outbreaks are rare.

Let’s not deal with all this detail until you tell me – are you still using steroid cream?

Terri

Sorry this is long. Thank you so much!

[pdxbabe]

I use it occasionally for spot treatment. My doc recommended it for the first and second outbreaks because they were so deep. Anecdotally, I don’t notice a big difference between using acyclovir cream and going without, but a dab of clobetasol on a deep lesion seems to kickstart the healing process. Should I stop using it?

Re: HSV-1, I do ask partners if they’ve ever had cold sores, and encourage them to get a blood draw. No one has tested positive though.

[Terri Warren]

Your call – if it helps, I’m surprised. I’m wondering if you might be treating something else, actually. HSV 1 genitally almost never recurs once a month. We never use acyclovir cream, only oral meds for herpes as the acyclovir cream is pretty useless, in my opinion.

Terri

[pdxbabe]

Interesting. My doc must be on a whole different page — she said acyclovir cream was useful for HSV-1 but not 2! Hmm.

Well, it’s possible? I did have a convoluted diagnosis:

Prior to 2013: negative IgG for HSV-1 & 2, no history of cold sores. My long term partner’s status is unknown but we always use protection, although there’s skin contact. No risky behavior with other partners.
Feb. 2013: 2 butterfly genital lesions with flu-like symptoms. Negative swab culture, negative IgGs for self, equivocal HSV-1 for partner.
July 2013: No recurrence of lesions. Followup IgGs — negative for self, low positive HSV-1 for partner. PCP suggests aphthous ulcers as a cause? Partner and I break up shortly after this.
March 26 2014: Assaulted by ex-partner with no protection.
May 8 2014: First spot develops on left buttocks. Flu-like symptoms. Within one week I have 10+ ulcers.
May 19 2014: PCR and blood test confirms HSV-1, with possible aphthous ulcers (due to severity).
June 2014 – present: Frequent but milder monthly recurrences.

Is it worth investigating more? The PCR swab seems pretty clear. I do have a history of autoimmune disorders and gastro / stress problems, which are common on my mum’s side. Thanks!

[Terri Warren]

Topical acyclovir cream is just limited in it’s benefits, period. It may shorten the duration of an outbreak by 18 hours, which, in my opinion, is not worth the money.

So if the PCR was positive for HSV 1 from a lesion, that is really diagnostic. However, this does not mean that everything that happens in that area IS herpes. My recommendation would be to get a PCR from any lesion that shows up with what you are feeling is a recurrence, and this should be done while off any daily antiviral medicine. If these swabs turn up positive for HSV 1, then suppression would seem appropriate for you.

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Terri

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