Let’s talk about sex and Hepatitis C. I live in Tulsa, Oklahoma which some consider to be the buckle on the Bible Belt. Sex is a delicate topic anyway, but we have got to talk about everything that has an effect on our life with Hepatitis C and Cirrhosis. I think we are all a bit shy about discussing sexual matters with anyone, especially a perfect stranger. I am not a stranger. We are best friends in this battle and we need to be absolutely honest about everything that we encounter. For most of us, whether we talk about it or not, sex is a natural part of our daily lives. So BFF, this is just between us. We have got to get rid of the fear of having sex with Hepatitis C. Let’s dispel some of the myths surrounding the risk of sexual transmission with HCV. You know me. We are going to cover it all. You are probably wondering if the virus can be passed through sexual contact. I was. After my diagnosis, I did NOT want to talk to my doctor, or anyone else for that matter, about such a private subject.
One day I summoned up the bravery to call the Oklahoma State Health Department. My hands were shaking, and I was blushing down to my toes. I asked to talk to someone in charge. Wouldn’t you know it? I had to ask the next 3 people who transferred my call. It was painfully embarrassing. Then they said that someone would call me back. Geez. Might as well call the governor! I sat by the phone, half hoping that it would ring, half hoping that it would not. I had visions of the call being traced. Within the hour, the phone rang. I jumped out of my skin and shakily answered.
By now I was wearing a disguise and talking with a fake cockney British accent. Think Liza Dolittle in My Fair Lady. I’m a good girl, I am! After a lengthy conversation with the leading epidemiologist about transmission of Hepatitis C from sex, I felt much more relaxed and informed. Less salty. I am not trying to be cheeky, but maybe you can read this in your British accent. It’s more fun that way too.
Hepatitis C is NOT a sexually transmitted Disease – You cannot get it easily from bonking or from oral sex. You read my blog on transmission that Elizabeth wrote: Hepatitis C is a blood born virus. What I learned from my conversation is that the numbers are a little blurry about transmitting HCV through sex. The NIH states that the risk of sexual transmission is extremely low or null. Unless you are having rough sex, it is not a huge threat. I blushed while having this conversation, but I had to know. What the heck is rough sex anyway? Plainly spoken, it is any sexual act that would produce blood. There. I said it.
I asked a slew of other questions. Can you get Hepatitis C from kissing? What about oral sex? During a woman’s menstrual cycle there is blood present. Does that count in transmitting the virus? I learned that unless there is an open sore or wound on you AND your sex partner, it cannot be transmitted. Make sure that you and your partner do not have blood from a mouth sore. That was a relief. At that time in my life, I was a single woman with a death sentence from a decompensated liver. I still had to formulate a mental plan for dealing with sex if I outlived my expiration date!
Former sex partners – The first thing that came to mind is former sex partners. Did my ex-husband get Hepatitis C from me? I had been married and monogamous for over 30 years. Just before my liver failure led to my hospitalization, we went through a divorce. I had to inform him. He was tested and came back negative! That says a lot about transmission being low. He tested again 6 months later just to be sure. Negative again.
Future sex partners - What about my sexual future? My mental state was a mess with brain fog. Yet, I still had hopes of building a future with someone. Being diagnosed with Hepatitis C would not keep me from having sex forever, right? My sex drive went to zero just thinking about it. Besides, my whole world consisted of blood tests, biopsies, and nutritionists. Yeah. I felt sexy. NOT. I was reading about treatment and Meld scores. Not the kind of stuff that a romantic dream is built on. You know me – Ever optimistic, I came up with a plan. After all, I had a plan to use my faith for diet, nutrition, medication, and exercise to get better. Why not come up with a plan for sex?
There are enough things to worry about with Sexually Transmitted Disease to keep a single girl at home knitting and doing yoga. Knowing that HCV is NOT an STD allowed me the freedom to think of meeting someone. I’m totally laughing out loud. I often go to my old journal notes scrawled in the middle of the night when writing to you. Whattamess! I wrote things like: Will I die from Hepatitis C and Cirrhosis? Is it fair to try and fall in love? What if this is my last year to live? What If my varices bleeds again tonight?
My friends and family kept encouraging me to date. Get out of the house. Meet a nice guy.
Monogamy – There you go. Without being preachy, or making you uncomfortable – just understand that you lower the risk if you are with one partner. If you are married, it is not an issue. Your husband or wife can get tested for Hepatitis C to keep you from being worried. Unless you shared blood some other way, there is no chance. I hear from people who are monogamous, but shared needles during IV drug use. They did not get it from having sex. Keep in mind that with multiple partners, there seemed to be other risk factors such as IV drug use, so the methods for tracing transmission are not reliable.
How to minimize the risk – Use protection. Everyone knows that by now. It is just smart. No rough stuff. Whatever that means… I refuse to talk about that. You can think about it as it relates to you. Just keep it clean. Play nice. Be normal, if there is such a thing.
Inform your partner – This may be tricky for some of you depending on your dating habits. For me, it was easy. The only way that I was ever going to have sex again anyway was if the guy could produce a clean bill of health. I was more afraid of what I could catch from him! So I stayed home with my roomie. I had decided to talk in depth, should the occasion ever arise, about Hepatitis C as it relates to sex. I had already told everyone I knew about my diagnosis, and it was easy for me. If you have made the decision not to talk to anyone about it, this is something to consider. My best advice is to be as honest as possible. I mean, if you are willing to share physical intimacy with someone, you should be able to be honest about HCV. Yes, I know it will be hard work both mentally and emotionally. Only you can decide how to approach this. I do not judge you. Ever.
Enjoy Yourself – We are created in love. We are created to love and be loved. Sex gets in the way of love if pursued too quickly in a relationship. There is no denying that it is a physical need. If you are in a loving relationship, it is natural to want to share intimacy. Be careful with your heart. Be careful with your body. When you think you are dying and are single, it can lead to poor choices. Listen to your friends and loved ones. Listen to your instincts. Listen for spiritual guidance.
A sexual relationship that is born of neediness or desperation can end up in heartbreak. That is the last thing you need when you are battling Hepatitis C and Cirrhosis. I have no problem spouting out encouragement and support about diet, exercise, and medication. My desire is that we all fulfill our destiny on the planet as individuals and in our relationships, including our sexuality.
Please do not get cheesed off at me. I am not being cheeky about the subject. Many of you have asked the same questions. I have chosen my words carefully. I do not intend this to be preachy. But a Best Friend always tells you what they think. I hope this will help you to understand sex and Hepatitis C. Now you can focus on treatment and getting on with your sex life. I mean life. Blushing profusely, Your Bestie, Karen:)
P.S. The hcvadvocate website and Lucina Porter R.N. have written about sex and Hepatitis C. She’s a dear friend and I trust her information completely, although I would never talk to her about my sex life. haha. Check out these links:
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