To Tell or Not to Tell,...

[m_strings]

The thread posted by Scared125 spurred another question.  It seems the CDC as well as my general practitioner consider Hep C to be an STD, even though it's rare to catch it this way.  Therefore, if I had Hep C for 23 years, my thoughts are that I should tell anyone I was sexually intimate with prior to my marriage and within that 23-year period.  My doctor also thought it was a good idea.  This could be prove to be a humbling and embarrassing experience.  I'm not thrilled about telling other people, esp. the ex's, that I have this diagnosis.  On the other hand, don't the people we have been with deserve to know if they might have been exposed?  I'm curious as to your thoughts and how others have chosen to deal with this.  There are no right or wrong answers.  

[jmjm530]

I think you have to use a little common sense here. Sure, if upon hearing your diagnosis, you are living/dating someone and may have shared personal items, or recently had unprotected sex with someone -- then the right thing would be to let them know. On the other hand, to make herculean efforts to contact every sexual partner going back perhaps 10,20,30 or 40 years is unrealistic and could be construed as somewhat intrusive re the privacy of others. Hopefully people will take it upon themselves to take whatever tests they feel are necessary given their sexual and other behavior, including testing for HIV, HCV, etc, etc. They really shouldn't need a call from someone they had a one-night stand with ten years ago! YMMV.

-- Jim

[nygirl7]

Would you want someone to tell you the truth or would you prefer they just hide the fact that could potentially affect you?

That is why I told, right away. I don't feel you have to tell the entire world but that you should be honest with your partner. It could affect them via their health or should you decide to choose.

But that's just me.

[nygirl7]

PS I wouldn't track down everyone you ever had sex with though at this late date but if they came to YOU and asked I'd admit it...but believe me in New York they DO notify the CDC and your name goes on a list.  Not sure what state you are in but I know that they were notified when I was diagnosed.

Hard question but up to each individual to decide.

Good luck.

[jdwithhcv]

I wondered about this when I first got the news.  After much thought I realized there was one person I really felt conscience-bound to tell.  

Its a tough decision to make.  Best of luck to you.

jd

[can-do-man]

After close to 30 years of being married, whats sex??? Heck i can't remember things 30 minutes ago, so no way i could go back to 30 years ago. Besides i could only imagine the talk around those dinner tables.... YIKES

Serious though after 30 years my wife does not have HCV, sometimes it just best to let sleeping dogs lay....... But one must do what they feel best.

Best to you m_strings

[m_strings]

Ha Ha!  Too funny Can-Do Man!  

Okay, I just have a second to respond and will post more later.  The STD question now has me perplexed.  I have emailed the CDC to find out what their actual take is on this.  It's not really crystal clear, is it?  Hmm.  

Thank you all for the input!  Interesting discussion.  Lots to think about.  

[jmjm530]

They are clear. It's not on their list of STDs.
The list is on their site here  : http://www.cdc.gov/STD/

[nygirl7]

Bwah I haven't had a date since a month after I was diagnosed........you wanna tell ME some things I don't know?  ;)

[jankar]

If you got Hep C through IV drug use and you still know some of the people you were with at the time, you need to tell them if they do not already know.  Morally, I think that is the best thing.  You need to tell potential sexual partners and family but other than that, no.  It may be considered an STD but unless you think someone was at risk, I don't think it is necessary as transmission is rare.

[portann]

HCV is NOT on the current 2009 STD list. (The link M-strings provided above is from 2002.)

I went to Jim's link http://www.cdc.gov/STD/ , where there's a direct HCV link on his cited page:

http://digestive.niddk.nih.gov/ddiseases/pubs/hepc_ez/index.htm

It says:

"You could get hepatitis C by sharing drug needles
getting pricked with a needle that has infected blood on it (hospital workers can get hepatitis C this way)
having sex with an infected person, especially if you or your partner has other sexually transmitted diseases
being born to a mother with hepatitis C"

It's from the National Digestive Diseases Disorders Clearinghouse. I want to bring this to your attention because although I consider it misinformation or at least mentioned out of context, it's there, in black and white. (I didn't check the date it was last reviewed.)

Like many here, I consider the possibility of sexual transmission almost nil and that only traumatic sex is risky. If I had to contact someone from my past, it would be my  college roomies from forty years ago because we shared toothbrushes and razors as an economy measure. They haven't contacted me.

My hepatologist thinks the possibility of sexual transmission is a non-issue, except in the case of traumatic sex. Has anyone here under the care of an up-to-date specialist heard different?

[portann]

Sorry, the outdated 2002 STD link I mentioned in my post above was cited in Scared's link, not in this one:

http://www.cdc.gov/STD/treatment/SumCont.htm

It's quite interesting to see HCV listed as an STD in 2002 because my hepatologist never considered it an STD. I agree with the shift in thinking but wonder how it got on the list to begin with.

[can-do-man]

My hepo thinks its a non-issue, he doesn't even recommend those things we used to fill with water and toss over balconies.

can

[Rockerforlife]

Answer this question honestly.....

Would you sleep with someone, who you know had hep C, without no protection?

i think not

[portann]

Rocker, Rocker, Rocker,

Many of your closest pals here on the forum have unprotected sex ALL the time, which is not to say we have sex all the time but that whenever we have sex, it's unprotected.

Right, Can-do?

[CoWriter]

If it's a long term, serious relationship (in other words if he's not sleeping around) and that's all he has, then yes.

Co

[Rockerforlife]

Im not talkn bout your current lover of lovers...i meant someone new...i know the odds are low...but for my peace of mind...i would have have protection...i just dont want to go tru all this again

[CMcH]

I have been married for 13 years and my husband & kids do not have it. I also know other couples where one has it and the other does not. I would not consider it an STD nor have I ever heard of that before.
If someone has shared needles then I think it would be a good idea.

[Rockerforlife]

Maybe im being overly cautious...isnt it ironic tho that you can have sex and pound away at each others bodies for hours with someone and not contract Hepc BUT...go to the wshroom and use the persons toothbrush or razor and boom...your have it...seems odd...

[copyman]

why put yourself through more agony by trying to seek out ex-sex partners to tell them.  With the chances so small that you gave them HCV why invade someones life and ruin it for them. keep it to yourself except for your current partner/roomate. good luck

[joannatsf]

The CDC does consider HCV an STD.  Most other countries, Australia and the UK for example, do not.  I had HCV for 20 years before I was diagnosed in 1993.  Of the partners I'm still incontact with none has contracted it.

The virus is bloodborne which means the infected persons blood needs to come in contact with the recipient's.  Sex doesn't usually result in wounds to the participents.  Bareback anal intercourse could be a problem but in straight PIV sex transmission is highly unlikely.

[m_strings]

Yeah, that is ironic.  I wonder if there is anyone on these boards who has a partner who they think DID get it from sexual contact.  I haven't heard of any personal stories to date.  Interesting.

[fretboard]

An honorable thought, for sure.  Although nobody wants to infect anyone else, to go and do a complete sexual inventory sounds very 12 step to me.lol  Besides, I truly believe anyone I slept with or shared implements of destruction with already knows I'm infected as I live in a fairly small town.  I personally use the 9th step as my guide or spiritual compass so to speak and I trust that if I brought back memories, it would do more harm than good.  

9. Made direct amends to such persons whenever possible, except when to do so would injure them or others.

[m_strings]

I'm curious as to where you found your info re: CDC?  Was it the same links I was using or something else?  It's interesting that other countries do not consider it an STD.  And if the CDC does consider it an STD, as I suspect, I wonder what their research supports.  Are they assuming that those who are positive who don't recall getting by any other means must have gotten it through sexual contact, or is it better documented than that?  I would think it would be rather difficult to research.  

[m_strings]

Good points.  The dilemma is certainly to figure out what is the greater good (or lesser harm) in this matter: Stir up bad memories or possibly not tell someone who could be infected and could have a better chance at a positive outcome if diagnosed early.  So far, however, the evidence on this board of sexual transmission seems very sparse.  

[Bill1954]

We’ve had a couple of gals here that have reported contracting HCV in the context of rape; one being ALAGirl. She had documented a negative antibody test result just prior to the incident. I don’t recall all the details, but this case seemed very conclusive.

On the other end of the spectrum, I was married for nearly 20 years while presumable infected the entire time; no precautions were ever taken, and my ex tests negative. I’m very much convinced that HCV is not easily transmitted via PV intercourse.

Bill

[Bill1954]

More thoughts on sexual transmission:


http://tinyurl.com/258a2l

"Dipartimento di Medicina Interna, Universita di Modena e Reggio Emilia, Modena, Italy.
The risk of sexual transmission of hepatitis C virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years. Seven hundred and seventy-six (86.7%) spouses were followed for 10 yr, corresponding to 7,760 person-years of observation. One hundred and nineteen (13.3%) spouses (69 whose infected partners cleared the virus following treatment and 50 who ended their relationship or were lost at follow-up) contributed an additional 300 person-years. All couples denied practicing anal intercourse or sex during menstruation, as well as condom use. The average weekly rate of sexual intercourse was 1.8. Three HCV infections were observed during follow-up corresponding to an incidence rate of 0.37 per 1,000 person-years. However, the infecting HCV genotype in one spouse (2a) was different from that of the partner (1b), clearly excluding sexual transmission. The remaining two couples had concordant genotypes, but sequence analysis of the NS5b region of the HCV genome, coupled with phylogenetic analysis showed that the corresponding partners carried different viral isolates, again excluding the possibility of intraspousal transmission of HCV."

[m_strings]

So if I understand this correctly, there was not one single case of HCV transmission within this decent size sample that could be correlated to the partner's HCV?  This was a 2004 article, so not too terribly long ago.  VERY interesting research!  

[m_strings]

How terrible to hear what happened to ALAGirl.  I hope she doesn't mind us talking about it here.  I'm so very sorry that she had to go through such an ordeal.  And then to have to deal with an aftermath like Hep C.  It's simply awful.  It's also a godsend, if there can be such a thing, that she happened to have an antibody test prior.  That does sound pretty conclusive.  It certainly makes a case for traumatic sexual contact as being more of a real risk factor.    

[irieone]

Question: If you are thinking of dating/seeing someone, do you tell them you have Hep C? How long do you wait before you tell them if you do?
  This is my first post and I wanted to say that I was tested in 2000 for all strains of hep because of symptoms after a sewage spill in my office. Negative. I was raped and sodomized last year and left bleeding. A few months later I started having symptoms of an std which a doctor confirmed I had "trich". 43 yrs and the first std ever. My doc ran all the tests after hearing it was a rape and I hadn't heard anything from her so I made an appt. a few months later to make sure all the blood work was good. They stamped over the note from the doctor to pull my file and call me letting me know I had Hep B! Doc said it was a good thing it was only B and not C, but I was most likely chronic due to the time frame. Ha! Seeing a specialist now and turns out it was a false positive on the B and is chronic C. I have never used IV drugs, and have tattoos but was always careful about watching them open the needles and use individual ink pods. My X did do prison time and had tattoos from the inside. He was never anything but gentle and we did not have anal sex. I cannot locate him to talk to him about being tested. I can only think that the Hep came from the violent sexual experience. Either way it was sexual!  I did tell my most recent partner as I felt so guilty to expose anyone else. He tested and was fine. I have remained abstinent since I found out--I can't see having casual relationships and doubt someone would want to get involved with someone with Hep C. I guess it is just a matter of what you can live with. The likely hood of passing it is minimal, but not unheard of.

[m_strings]

Your story is incredible.  It is also sad.  I'm sorry to hear you have gone through so much.  It's just not fair.  You sound like a very strong individual.  I don't know about the answer to your question.  I have thought about this as well.  I would imagine you would first want a chance to get to know someone.  If you think things are heading in a sexual direction, it would probably be time to tell.  That is my take.  Certainly there are educated people out there who understand the risks of sexual transmission are so very low.  And isn't that the kind of person you'd wish to attract anyhow?  

Keep us posted on how you are doing.  

[epiphiny]

First of all, welcome to the forum, you're in a good place to find support on your journey.  I just wanted to respond to a couple of points in your post:

1. I have remained abstinent since I found out--I can't see having casual relationships

I felt exactly the same way you do when I first found out about it and I stopped having casual sexual relationships.  It took a long time for me to come to terms with having the virus (I was originally told there was no treatment for me EVER) and I eventually realised I couldn't let the virus define and control my life in such a way.

Eventually I started seeing guys and if we decided to move to a sexual level I always insisted on condoms for my own peace of mind that I was doing what I could to protect the other person, as well as myself against whatever lurkers they may be unknowingly carrying.  

2. "doubt someone would want to get involved with someone with Hep C."

When I met my husband I knew he was going to be a significant person in my life and I decided to disclose my 'condition' to him early on in our relationship.

We are now married and have been together for 4 years.  He had and has no problem being with me, despite me having the virus so I don't believe that last statement is true.

The important thing is protection and information.  I made sure he knew all about transmission methods and percentages and we made a decision together to no longer use condoms.  He has been tested and is negative.  We will continue to have regular tests for him.  If I attain SVR I am not sure what we will do, but we'll figure that out when we get there.

Also, there are only two incidents of 'risky' behaviour in my past that had the potential for me to become infected.  One was a one off drug experience, and the other was the same situation you describe.  The medical profession have preferred to attribute my infection to the drug incident but in my heart I know it was the second incident as the timing of the acute phase and it's symptoms map perfectly with that event.

My heart goes out to as I know how hard it is to come to terms with this.  I wish you only well on your journey and I hope we can support you when the time comes for you to treat.

All the best,

Epi.

[joannatsf]

Smetime ago I was reentering the world of dating and wanted to determine just what my responsibilities were,  I probably did a broad google search like "hepatitis c std" and came up with a lot of hits.  I finally decided that condem use, which I insist upon anyway, was sufficient precaution.

[annieCinMD]

I told the ones I still had sexual contact with, I think a grand total of 2 people.  One of them told me he got tested and it came back negative. He is someone I consider a friend to this day, and the other is my daughter's father, someone else I'll have lifelong contact with. I'm pretty sure he's negative as well.  I had my kid tested, also negative. Since I had it for nearly 20 years or over 20 years (I can't nail down the exact incident that caused me to be infected), there was no way I was going to try to track down every junkie I ever used with.  I have one friend from "back in the day" (he is also now clean and sober), who I used with, and he tested negative. Go figure, but I'm happy for him. I think if they are lucky enough to have straightened up, they would probably want to seek out testing as I did. That lifestyle is way in my past, and I don't wish to dig it up.  However, if I did run into someone from the past in a random encounter, I might consider mentioning it. I think I'd feel out the situation and the tone of the conversation, though. It's not like it was something we even knew about in the 1980s.  I did cross paths with an old boyfriend from the 1990s and it turns out he had the virus and achieved SVR several years ago. We had a good long conversation on the topic.  Neither of us knew we had the disease when we were in the relationship. I am not afraid to tell people I have it. I figure it might help someone else, and since I am on treatment, it might explain my bad attitude, tiredness, etc.

[m_strings]

Thanks for sharing your personal research.  That is helpful!  Using a condom is wise.

[m_strings]

Thanks for your comments and your story.  Just hearing how you handled yours gives me some good ideas/options.  I feel more confident telling the people I need to know and telling others if our paths cross.  I think it's wise, as you mention, to feel out the situation first.  There's no way to dig up everyone whom I think should be told.  

It's interesting that your BF from the 1990's had it and achieved SVR.  That's great!  I hope things are going well for you too!  Best to you!