Aa
Aa
A
A
A
Close
768754 tn?1373918737

To Tell or Not to Tell,...

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.  
37 Responses
Sort by: Helpful Oldest Newest
768754 tn?1373918737
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!
Helpful - 0
768754 tn?1373918737
Thanks for sharing your personal research.  That is helpful!  Using a condom is wise.
Helpful - 0
751342 tn?1534360021
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.
Helpful - 0
774868 tn?1238899352
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.
Helpful - 0
577132 tn?1314266526
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.
Helpful - 0
768754 tn?1373918737
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.  
Helpful - 0
Avatar universal
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.
Helpful - 0
768754 tn?1373918737
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.    
Helpful - 0
768754 tn?1373918737
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!  
Helpful - 0
87972 tn?1322661239
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."
Helpful - 0
87972 tn?1322661239
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
Helpful - 0
768754 tn?1373918737
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.  
Helpful - 0
768754 tn?1373918737
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.  
Helpful - 0
408795 tn?1324935675
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.
Helpful - 0
768754 tn?1373918737
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.
Helpful - 0
774868 tn?1238899352
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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...
Helpful - 0
288609 tn?1240096756
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.
Helpful - 0
Avatar universal
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
Helpful - 0
568322 tn?1370165440
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
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
Answer this question honestly.....

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

i think not
Helpful - 0
Avatar universal
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
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.