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National Cervical Cancer Coalition


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PostPosted: Wed Apr 06, 2011 1:12 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
After having full gential itching (akin to a yeast infection) for two weeks, plus excrutiating pain when my clitoris was touched (hands, clothing, walking, whatever), I was visually diagnosed w/ genital HSV2 on 3/15/11 via one tiny lesion, started 10-day/1G Valtrex then. It was confirmed positive for HSV (type unknown) via culture on 3/17/11 and my doc has since confirmed positive for genital HSV2 via blood test, stating it appeared I'd 'had it for a while' rather than being recently exposed. Started daily 1G Valtrex on 3/24 for suppresive therapy.

If my outbreak started on 2/28/11, first sores appeared vaginally ~3/14, how much longer should it last? Could it be that a 2nd ob has started, too or that the 1st had an additional phase of sores that have sprouted up on my buttocks (cannot see any, but having nerve pani)? Believe this is my first genital outbreak (would have remembered THIS) - having lots of nerve pain in upper legs, buttocks; today am having tingling and piercing, shooting pain vaginally that feels the same as when a cold sore is going to break out on my face. After enduring this for five weeks, am not sure how much more I can take....starting to really panic.

Am trying my darnest not to stress - doc gave me anti-depressant - but know am b/c in a long-distance relationship w/ man see ~every 2 wks. Told him of the diagnosis on 3/24 but am worried what this does to us, if he's been tested, etc. b/c have no idea how to broach the topic again after the first time.

Wow, lot of issues in one post...thank you so very much for any insight and for providing this resource.


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PostPosted: Thu Apr 07, 2011 1:33 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Have you been back to the clinic at all since you were diagnosed? I recommend calling for an appointment and going in to be tested for yeast and bacterial infections vaginally, regardless of if they see any symptoms of either. BV especially can cause issues with hsv2 so it's well worth getting proper tested to see if it's going on.

If you can get your blood test results to post here, I can also help you with those. All I need to see are the actual numeric results - e.g. hsv1 igg 6.9 and hsv2 igg 4.09 or whatever they are. That way I can be sure that your blood work you had was the right testing too.

So how do you bring up the topic again with your partner? Well it sounds like you really need a shoulder to lean on right? Why not just say something along the lines of, can we talk about this whole herpes thing again because I'm really stressed out about it and need your support? I think that's a nice opening line - perhaps he wants to talk about it too but is afraid to? Let him know that you aren't ready to be sexually active again yet because of your continued symptoms and ask him if he's had his testing done yet so that when you are ready to be intimate again, you two can make educated decisions about what precautions to take based on both of your statuses. Odds are that neither of you have ever been tested for herpes before this - it's not a part of routine std testing but typically that's not pointed out to you.

So could you have had hsv2 prior to this and never knew and now have a humdinger of an ob? Yes you can. You might've had very vague symptoms prior to this and never thought twice about them and now something else going on triggered a recurrence. I know even in myself, I've had a horrible recurrence that lasted for 2 months 16 years into being infected with hsv2 while on daily suppressive therapy even - it was because I had bv ( bacterial vaginosis ). it's not unusual for something else going on to trigger hsv2 to be more active and reoccur. Odds are this isn't all just hsv2 causing you all this trouble so you and your providers need to get to the bottom of just what all is going on.

keep asking questions and I hope you soon get to the bottom of this all and get some relief!

betsy

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PostPosted: Thu Apr 07, 2011 2:54 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Hi, Betsy:

Echoing what many others have written, thank you very much for providing this discussion outlet, plus taking time to carefully share facts/answer questions with seemingly unending patience and wonderful compassion. You’ve already helped me so much. Thank you.

I’ve not seen my primary care physician (PCP) - scheduling an appt. ASAP w/ him to check what you suggested and possibly get a referral to a gynecologist or other doctor w/ more specialty training w/ STIs. Regarding yeast infection possibility: first sign anything wrong was full genital itching beginning 2/28/11, which I attributed to yeast infection b/c had them on occasion in past, except this one did not have thick, cottage-cheese like discharge; no abnormal discharge to speak re: texture/amt/odor. Since itching/clitoris pain continued, went to convenient care (same hospital as my PCP) on 3/7/11 and diagnosed w/ a yeast infection via a wet culture (?) viewed under microscope. Was asked then if I had any concerns of having an STD and I said no, so no further inquiry ensued. Received two doses of oral treatment for yeast infection, one taken immediately and the other taken after three days b/c symptoms still present, as directed. Three days after 2nd oral treatment, symptoms continued so returned to convenient care 3/14/11 (correction from time in 1st post; PCP on vacation), where yeast infection diagnosis confirmed again, plus I asked nurse practitioner about the -tiniest- little nick near my vagina - she thought it was HSV, cultured results confirmed HSV on 3/17/11, w/ no type discernable. Received 7-day vaginal treatment, which I completed on 3/20/11.

Test results
1) 3/21 PCP visit - blood draw only, no visual exam

HSV-1 IGG AB = 4.42 H index
HSV-2 IGG AB = >5.00 H index


2) 3/23 Test results from 3/23 PCP visit - visual exam at my insistence, swabbed apparent tiny new blisters near/below vaginal area (different location than NP swap site 3/14/11). Internal vaginal/cervix exam revealed no visual sighting/identification of HSV or any other abnormality inside of me.

1) HSV1 and HSV2 by PCR (is that the swab culture? Note on printed results indicates test developed by my hospital for clinical purposes, not approved by FDA b/c FDA deemed such clearance or approval is not necessary)


HSV 1 Negative
HSV 2 Positive A

Specimen Source: Genital
Specimen Site: Perianal

PCP phoned me w/ all results on 3/28/11 and said blood test result shows I’ve had HSV-2 ‘for a very long time’ and that it was not a recent exposure, such as from my partner (w/ him since 9/2010, abstained from sex for one year prior to that). Is that necessarily true or actually indeterminable?

Yesterday, tingling reappeared and continuing nerve pain intensified all over my buttocks area, plus shooting pains outside vagina/on labia. Last night, discovered two new ulcers last night in same exact locations as those swapped on 3/14 and 3/23, respectively. Since this ‘humdinger’ ob has been ongoing since either 2/28/11 or 3/14/11, in your opinion should I do a 2nd round of 1G Valacyclovir/2x day across ten days or is that pointless/too late? PCP’s nurse told me 3/31 2nd round unnecessary and instead continue suppressive therapy of 1G Valacyclovir/1x day; however, ob has continued since and again worsened. Also, safe to believe that Valtrex and its generic Valacyclovir work exactly the same or should I pay for the brand-name version? Is there any possibility my body resists Valacyclovir, thus the continued outbreak? I also have hypothyroidism, for which I take 88mcg/day of levothyroxine (sp?) but none of my ‘research’ has indicated that would cause problems w/ HSV2.

Your suggestions for how to bring up this topic w/ my partner are fantastic! After reading a LOT of info (only from credible sites (CDC, Mayo, womenshealth.gov), plus sites and books as suggested/deemed credible to educate myself and prepare to disclose this to my partner, I noticed a general recurring theme: if the person positive with HSV2 remains calm and optimistic about it accepting it, the partner likely will also. So when I told him on 3/24/11, I did that - got a little emotional but reeled it in; now am worried that I will seem to be freaking out about it and upset him.…believe I just got to the heart of what’s freaking me: not HSV2 diagnosis, rather unknown of is this is a deal breaker to him b/c I cannot have sex - it’s hard enough to be in a long-distance relationship, then to add THIS atop it - yes, I have many other great qualities and we can be sexual w/ out having sex (did the weekend of 3/24), yet I now see myself as damaged goods and wonder if that will ever change. OKAY, TMI - feel better having typed all that out.

Thank you again, Betsy - being able to ask questions is such a HUGE relief as I cannot talk w/ any of my friends about this and am panicking while trying to remain very calm. In fact, such a huge relief that I write way too much in my post, apologies for that.

P.s. You are right: I always thought my annual exam and other blood tests included HSV testing, especially since my PCP always discussed STIs w/ me. What a shock to learn that was not the case! My partner gets blood tests w/ his annual physical, so he assumes it included HSV testing...told him it very well may not.

Also a shock to learn that so many women in the U.S. have this (is it 1 in 5?) -- while things are gloomy now, am ultimately glad that I do know.


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PostPosted: Fri Apr 08, 2011 2:42 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Since your blood test was a month into symptoms, hard to tell if it's a new infection or not for you. 1/2 of all folks tested will test + by that point actually. Once you have your partners test results, you'll have a better idea of if it is new or not. If he's negative, you know you had it prior to meeting him. Otherwise no way to know if you've had it 2 months, 2 years or longer.

Are your valtrex tablets 1gm? If so, you might even want to try cutting them in half and taking 1 in the morning and 1 in the evening. See if you can control your hsv2 a little better that way until you get to the bottom of what is triggering this cycle of back to back outbreaks for you. You can buy a pill cutter in the store to make it easier than trying to cut them with a kitchen knife ( and safer too! ). Some people do better with 2x/day dosing than once daily dosing so it's worth a try.

Meanwhile I'm sure you want to try some things to get rid of the pain in between your legs? try something as simple as soaking in the bathtub with epsom salts thrown in for some comfort. It helps with pain and inflammation. Also dermoplast spray ( the blue can for the genital area, not the red can ) is a topical anesthetic you can try too. You spray it on where it hurts. It'll help you feel a little more comfortable. Don't hesitate to try an ice bag too. The clitoris is filled with hundreds of nerve endings which is terrific for sex but is awful when you have pain there. When at home, if you can go bottomless, that's helpful too. It decreases friction to the area as well as gets cool, drying air to your genital area to help discourage yeast and bacteria overgrowth. You can wear an over sized tee shirt or a bathrobe so you aren't mooning everyone.

Long distance relationships are hard enough as it is. Even though this is still a newish relationship, just keep things out and in the open. good communication is hard and you have to work at it. He needs to know how you feel - both your frustration about the ongoing symptoms and your doubts about the future of your relationship because of your recent diagnosis. Has he been doing reading too? If we assume that you had this prior to meeting him and just never knew it, you can get his risk down to 1%/year of contracting hsv2 from you once you get these current ongoing issues taken care of. It's a very low risk with not a lot of work. certainly easier to deal with herpes in a relationship than it is the difficulties of a long distance relationship , money issues, drinking issues, etc. Not too many things you can take a pill or two a day and keep under control so easily :)

Keep asking questions and venting! It's what the forum is here for :)

betsy

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PostPosted: Fri Apr 08, 2011 3:51 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Once again, thank you for your reply/answers/insight!

My valtrex (generic) are 1gm, so I will try the 1/2 a.m., 1/2 p.m. - was taking it in the evening to offset any side effects. Saw my PCP this afternoon and he saw no inflammation, discharge or anything else amiss sans the 2 recurring lesions. He prescribed a BV medication and a 2nd round of 10-day treatment, this time w/ acyclovir (sp?). He also referred me to an infectious disease specialist to better help me understand all of this.

Thanks much for the pain-relieving suggestions - will try them ASAP! All week have worn very loose pants/skirts and skipped the undies in hopes of lessening friction...seemed to help.

The only time my partner and I have talked about the 'H' was 3/24/11, when I shared w/ him in person that I'd been diagnosed w/ it (diagnosed 3/17, waited 'til 3/24 to tell him in person instead of on the phone). That was the very most difficult conversation I've had in my life. Said then it was very important he get tested (he thought he had been thru annual physicals) but he has not shared if he's done that, nor do I know if he's been reading. If so, hopefully it's from credible sources; however, am fearing he's found info that contradicts what I shared w/ him, thus my view is not trusted.

I realize burden is on me to bring the topic up a second time, just wanted to do so in person instead of on the phone. My gut says although I thought he was enjoying me/this relationship as much as I was, that instead I was on 'probation' and while this is just one issue, perhaps in his mind the negative of it outweighs all the many other positives of us. I will come to understand if he cannot get over the 'H' factor, just wish he'd at least 1) visit w/ me one more time so I could share w/ him more facts I've learned in the last two weeks (including how low the odds are of me giving it to him, if he doesn't already have it); and if not, 2) tell me he cannot handle the 'H' instead of now hiding - it is quite obvious when someone starts behaving differently. I worry that he's been tested, has results and is reacting and/or has read conflicting info.

Whew, -venting- again....sorry.

Thank you.


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PostPosted: Fri Apr 08, 2011 5:07 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
Is he staying in contact with you like he usually does? Is he taking your phone calls?

Did your provider properly test you for bv and find evidence of it?

betsy

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PostPosted: Mon Apr 11, 2011 3:35 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
His contact is waning...could be falling into a routine and that am hyper-sensitive right now due to this recent diagnosis. Realize my primary focus has to be on me getting to where I accepting this diagnosis, w/ the secondary focus on partner and I getting thru this. Ironically feel I'd get to overall acceptance faster if I knew partner was working to accept me w/ it.

PCP only did visual exam - am guessing that's not the proper test. He did refer me to an infectious disease specialist, in hopes that would be a means for me to obtain better info.

Thank you again, am keeping faith there is good that will come from all of this!


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PostPosted: Mon Apr 11, 2011 7:02 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
you can't diagnose bv visually. too bad he didn't bother to properly test you for it instead of guessing. too late now.

Hopefully you get better answers soon!

betsy

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PostPosted: Tue Apr 12, 2011 11:28 am 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Thank you. I pushed for the bv exam and was told b/c there was no visible sign of anything being amiss, an exam/test would not be done; however, was given a prescription for a 7-day vaginal treatment for it if I wanted. Frustrating when do research on own to learn more about managing 'H' and then to be dismissed by the PCP b/c of it. Am getting a new PCP, hopefully it will be someone who truly listens.

Thank you again - your insight has been very enlightening and is most appreciated!


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PostPosted: Wed Apr 20, 2011 11:41 am 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Hi, am back again w/ another question. Outbreak continues w/ one new lesion (though it very well could be an infected hair on my mons area); ongoing tingling and burning in legs. Just completed five days of morning+night dosing of intra-vaginal metronidazole this morning for suspected bacterial vaginosis. Now appears I've got a yeast infection, likely from this round of meds - any suggestions for stopping this vicious cycle of yeast/bv/yeast?

Good news is my mouth lips have been tingling like MAD during all of this but no outbreak there - got to find humor and joy wherever possible! :)

As always, many thanks for info, suggestions and providing a comfortable environment for discussing all of this.


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PostPosted: Wed Apr 20, 2011 12:20 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
the "chunkies" are normal after using flagyl vaginally. It's dead bacteria working its way out of the body as well as the medication coming out ( because what goes up, must come down! ). give it a week before you do anything.

betsy

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PostPosted: Wed Apr 20, 2011 3:25 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Love the word choice - will do, glad to know those 'chunkies' may be a good thing! Now if this ob would just move on along, things would be pretty good.

:)


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PostPosted: Thu Apr 21, 2011 5:14 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
sometimes a brief soak in the bathtub is helpful if you find the post treatment discharge to be irritating too - or just rinse it off as needed during the day with lukewarm water from squeezing a wash cloth over your genital area. The fun just never stops eh?

betsy

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PostPosted: Fri Apr 22, 2011 2:38 pm 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Thanks much for those suggestions - definitely trying ASAP as this lingering outbreak is driving me to madness...Week Eight, will this be the last?! :)


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PostPosted: Mon Apr 25, 2011 8:00 am 

Joined: Tue Apr 05, 2011 8:18 pm
Posts: 9
Location: USA
Back again...still having outbreak, w/ nerve pain continuing since March 19th; and what appears to be new lesions in the same spots again this morning.

Is it possible/worth considering that I may be intolerant to Valtrex/Acyclovir? I took 1g Valtrex 2x/day for 10 days starting 3/15; then 1g generic Valtrex 1x/day thru 4/7. On 4/8, with continuing ob symptoms, started 400 mg acyclovir 3x/day for 10 days (knowing it wasn't started at the first sign of ob, but trying anyway) and then resumed 1g generic Valtrex 1x/day since then - taking 500mg, 2x/day via pill splitting.

Questions that arise:

1) time to try the third suppresive therapy option of famciclovir?

2) am I approaching this the wrong way and instead should start suppresive therapy AFTER ob is done and not take anything in the mean time?

Also, am to see doctor again this week to test of bv (not having common symptoms).

Realize it may appear that I am grasping for straws...just -so- frickin' frustrated w/ the duration of this. Difficult to NOT think/stress about it when having constant nerve pain, burning, then new lesions today, pus now hypersensitive to any pain 'down there'.

Thank you as always, do appreciate the info and help w/ these seemingly endless questions.


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