Newly diagnosed... My (long) experience and still have few questions

[Prettyinpinkrn]

I want to start off by saying that reading through these discussions have really helped me stay relatively calm since I found out 3 days ago. I think sharing my story will help me feel even better as I am still scared to tell my friends/family.. .So here it goes!

 

For the past 2 years I have been dealing with on and off, recurrent bleeding during sex. It began happening shortly after my current boyfriend and I started having unprotected sex in summer 2012 (we used condoms for about 2 months before this). The bleeding didn't happen every time we had sex, but did at least 50% of the time. Went to my doctor and was told I had chlamydia. Found this out the first day my boyfriend went to work out of town for a month. I told him about it and he said he'd get treated when he came back. I took the antibiotic by by the time my bf came back in town we had forgetting about it and had sex a few times before I got reinfected and bled again. This time my boyfriend took it as well and no bleeding for about a month or 2 but then it came back. Doctor says I'm bleeding bc I have cervicitis (inflammation of the cervix) but std tests were negative this time and my pap was normal. He never explained why I had cervicitis. So this is almost a year and half later and the bleeding is still occurring about 75% of the time we have sex . I see another doctor in late November early Dec 2013 who takes a vaginal swab culture and get an ultrasound to rule any problems with my uterus and ovaries. I also get my annual pap. Pap smear comes back abnormal so I get biopsied and told I have precancer cells. She tells me that the precancer cells in my cervix can be irritated during sex causing to be inflamed and bleed. She gives me nothing just to come back in 6 months for another pap. After that I no longer bled during sex at all... No spotting, not even some of the time. Completely stopped!

 

So the last week of May 2014, it's time for another pap. Just so happens 2 days before that appointment I have what I think might be a cold sore on my lip (never had one before). It started as a little ulcer that felt like a bump inside my lip and I kept biting and sucking on it (bad habit) then looked like a blister the next day so I wasn't sure if it did that from me fooling with it. I get my pap and ask my doctor if she thinks what's on my lip is a cold sore as I never had one and didn't know if it was. She said she didn't know unless she got a culture but she didn't think it was after I told her it was a spot I kept biting on. Now remember, up to this point I had no bleeding since the beginning of Dec. This time my pap comes back normal. Well a few days later I notice slight spotting after wiping myself after sex. It's so light my boyfriend doesn't even notice it and I wouldn't have either if it weren't for using the bathroom after sex because of my fear of a UTI. This happens a few times and I just figured it was rough sex. It starts getting heavier and we begin noticing it during sex near the end and after certain positions. We try different things but the bleeding is happening sooner and is getting heavier. It was also happening EVERY time we had sex. This took place during the month of June. Go to the doctor July 9th and she takes another vaginal swab for cultures. I ask her if my cervix is inflamed to which she says no and schedules another ultrasound which didn't take place until this past Monday (July 28) due to scheduling conflicts. Ultrasound shows polycystic ovaries but she tells me that's not causing me to bleed during sex. She tells me my cultures came back positive for HSV 2. Needless to say, I was in complete shock. I tell her I've never had any symptoms or outbreaks and she explained to me that it can occur inside the vagina and that's where the cultures that came back positive were taken from. My cultures from November were negative so I automatically assumed my bf had been unfaithful but she explained to me it could have been there just not active so it wasn't picked up.

 

I pretty much cried all day Monday after I found out. I see my boyfriend not even 2 hours later and tell him everything. He was in shock and immediately asked me if I had been unfaithful (of course not!). He asks what are the chances I have it and he doesn't. I ask him why he believes he's not the one who gave it to me bc I know he hasn't had a blood test done. I never had any types of problems down there until I started sleeping with him so of course I think he's the one who gave it to me. We sat in silence for about an hour not looking at eachother while I sobbed. I finally ask if he has anything to say to which he responds no so I leave. He texts me a few hours later apologizing for how he acted he was just in shock and asking what we do next as far as getting him tested. Idk if after his research he still thinks I'm the one who gave it to me but we're not playing the blame game as it is too late now and he said nothing will him stop loving me. Honestly it could have been either one of us, it doesn't matter at this point. I am very glad though that (so far) he's sticking with me through it.

 

So I thought I never had any symptoms but after researching I think I may have had my first outbreak last month in June. I had an area of bumps on one side near my perineum. I had been wearing thongs everyday bc my work uniform shows panty lines bad and I kept getting wedgies and pulling it out. The area started to itch and I'd scratch it with toilet paper when I used the bathroom. Next day it was about 3 or 4 bumps that I thought were just bc of the friction rub of the thong and me itching it. I even looked up GH bc the bumps did resemble a lesion but alot smaller. It hurt the first 2 days mainly when pee would touch the bumps but it wasn't unbearable and was completely gone in less than 5 days so I really thought it was just the irritation from the thong going up my butt and then me itching it caused to get bumps and hurt a little. I can't remember exactly the date but it was sometime in June after I had already started bleeding again and we did not have sex during those 4 days.

 

So my questions are-

 

Is it possible this is a recent infection? I really don't think my bf has been unfaithful but because the bleeding didn't start happening again until after I had that possible cold sore on my lip ... it makes me wonder if that had anything to do with it. I remember giving him oral when I first felt it as like a canker sore inside my lip. Then sometime in the next month I get what I think may have been my first OB.

I know it's very rare but what if I got hsv2 on my lip and then gave it to him orally? I share drinks and lipstick with a lot of girls I work with so it worries me. Also I am feeling that same feeling in my lip in the same spot today (and I have obviously been very stressed out!) I am trying not to mess with it to see if it turns into the same thing as last time. I'm also worried if it is a recent infection and my boyfriend goes to get tested and comes back negative bc his antibodies haven't built up yet he's going to think I was unfaithful.

 

Should I take a blood test? I am not in denial but everything I've read says a culture must be taken from a lesion during an outbreak. I understand I can get lesions inside my vagina but when she took the culture she said there was no inflammation. I know about asymptomatic shedding but idk I'm still curious why it didn't show up in November when I was stressed to the max with finals and my abnormal pap.

 

Has anyone had any experience with herpes causing bleeding during sex? What's been different this time with the bleeding is that it's happened every single time we had sex, as opposed to before when it was just most of the time. If at the time she took the cultures I wasn't inflamed down there, why did I still keep bleeding? I'm still worried the bleeding is caused by something else...

 

Thank you so much in advance for reading!

[WCSDancer2010]

@Prettyinpinkrn

 

Hello and Welcome!

 

You certainly have a lot on your plate and I am sure you are very frustrated with all the conflicting information. I think we have 2 things here to discuss separately ... but my first thought is to make sure you are seeing an OBGYN for this and not a GP. OBGYN is a separate specialty for a reason .... a GP just plain can't keep up with the latest info on everything, whereas the OB will hopefully be more up to date... either way you may need to go to a specialty clinic (like the Mayo clinic ... you should have something similar somewhere near you) to get to the bottom of all of this.

 

So your diagnosis came from a swab test? It's entirely possible it could be negative one day and positive another because you were not shedding, but generally the one they use for general screening is not sensitive enough to detect simple viral shedding. I would certainly go for the blood test to see which one(s) you have anyway.... it helps to know so that if you and your partner are discordant (one H+ one H-) or you have different types, you then know that you need to use protection and be more careful than if you both have the same type. Also, if an IGG comes back positive (value is over 3.5) then you have had H for awhile (at least 4-6 months)

 

It does seem odd that this all started once you went without a condom with him. Odds are the pre-cancer was from HPV (which according to the CDC everyone who is sexually active will get at least once in their life). Thankfully that is very treatable when caught early as yours was.

 

Have you been checked for Trichomoniasis? Uterine Polyps? You don't mention them so figured I'd ask. Are you using plenty of lube?

 

For now I would go back to using a condom with your BF until you get to the bottom of this ... if he has been fortunate enough to not get it from you and you are having OB's internally, (and that is determined to be the cause of the bleeding) then you can go on antivirals to protect him.... but I'm not sure that is the problem here. I'd see if you can find some kind of OBGYN specialist who is in a hospital/group that deals with hard-to-diagnose cases.

 

(((HUGS)))

[Prettyinpinkrn]

Thank you so much for your response!

 

I have been to 2 different obgyns through all this. I have an appointment to see another one as I feel the one who gave me the diagnosis was not very supportive or informative. I pretty much found out all the information about H on my own. Do you know how I can find a hospital or group who deals with hard to deal ob/gyn cases? I've never heard of any around where I live but I've never looked and live in a pretty big city so I'm sure there's one.

 

I've been tested for trich and I think the 2 ultrasounds where to look for uterine polyps bc she told me my uterus looked fine and ignored my polycystic cervix until I had asked bc I saw the paper the ultrasound lady gave her.

 

She did say it was type 2 in the vagina but I'm going to planned parenthood tom to take a blood test so I can see if I have both.

 

I really think I am accepting of the diagnosis but of course I just want to know how and when I get this (which I know is impossible to know). I'm just really worried that this is recent so if my boyfriend gets a negative (bc it's too soon or I had it before and managed not to give it to him) that he will think I cheated or not be as supportive anymore since he's (potentially) clear.

 

I just want to stop bleeding it's already put a damper on our sex life and now I know this will to until he gets tested.

 

This forum is great though I am so glad I found it so soon!

[WCSDancer2010]

 

Given that everything started when you got together, it *seems* like at least part of the issue may have come from him... and with H, you could have had it a long time (especially when its in the vagina where you don't feel it as much) and not known it. Hopefully your Dr will tell him that. I had a client who carried it 30+ years without an OB ...then had an OB, and the Dr is the one who saved the marriage by explaining that it was likely dormant in her till a stressful holiday allowed it to break through. So if it comes down to it, get the Dr to help you explain how H can be dormant/undetected for a long time.

 

Not sure how to find the best place in your area but most of the large hospitals have specialists or Universities may have a teaching hospital ... if they specialize in OBGYN you may get lucky there.

 

(((HUGS)))