Sex and Intimacy with Hepatitis C

Many with hepatitis C experience rough relationships after diagnosis. For myself, I went through a horrible divorce that really left me feeling alone, afraid, unattractive, and frankly sick. (All while in the middle of fighting for my life.) It was not that I blame hep C for this relationship ending but it contributed greatly to the dismay. I have never spoken of this aspect of my hep C because it was very personal and as an advocate, there were just somethings I refused to discuss. But, after getting back on my feet health-wise and gaining that courage and confidence back, I am now ready to open up and share. The frustrations of living with an invisible disease Hepatitis C is a silent disease. It wreaks havoc on your body, destroying everything in its path. Because it is on the inside, it is extremely difficult for those around us to fully understand what we are going through. Myself, being a very stubborn person, I would push beyond exhaustion and then have no more to give my then-husband. In return, it was very hard on me that no compassion was given to me when I really was fighting a hard day. Stressing the point that I "looked fine". This vicious cycle went on and on. My growing frustration at the pure lack of empathy or willingness to learn about what I was struggling with was damaging to our marriage. As was the confusion on his end that I was still working, raising kids, cooking, cleaning, and maintaining the household. How in his mind could I be that sick? I don’t blame either of us for this. I know what it is like having someone with hep C to care for. It is grueling, demanding, and frustrating at times (taking care of my mom in later stages). Sharing my lessons learned If I could offer any advice without giving martial counseling here, it would be that both partners try to be in the others shoes. Both sides have fear, uncertainty, stress, and emotions tied to you being diagnosed. So, to say this is only happening to yourself is wrong because this diagnosis affects every aspect of both your lives. If you are not getting the support from your spouse, reach out to a support group. Also, do not expect or put expectations on your partner to fully understand what is happening with your health. It is very complicated and hard for even ourselves to grasp the full impact this disease is doing to us. No one wishes to be sick, as does no one wish to not be that understanding compassionate partner. Learn to communicate, seek help, seek support groups. My foundation has a support group for just caregivers. Because the emotional demand on caring for one with hep C is great, I felt the need to offer support and a place to vent with other caregivers. Why? Because sometimes learning about a condition comes better from someone in the same shoes who has already gone through it. Talking with another caregiver getting advice can help. Finding support from the community You too as a patient are NOT alone. There are people who understand and can offer support, guidance and, instruction. Seeking outside support will then allow you both to come together with a better understanding for one another. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Seriously, how is your sex life living with chronic hep C? This is a subject that can raise a few giggles I know, but It can be a serious issue for people living with a chronic illness, and hepatitis c is no exception. Sex is a part of life. I am not fixated on this being the most important issue facing people living with hep c, and there are many, but it is something I often hear questions about in my work with community. Is it risky to have sex with hep c? The most common things I hear on the subject are about getting or giving hep c to a partner through sex. This can drive a wedge in personal relationships if there is an unwillingness to learn about any risks, talk about it or seek help from a good therapist or counsellor. Just to be clear I am not a sex therapist or a qualified counsellor on the subject. Most of the questions and inquiries about transmission are coming from younger people, but not exclusively, with libido concerns being more common in the older adult group. Questions about libido One could suggest that libido is commonly diminished with age, even in the general population living free of hep c. This is accurate to some extent, but does not explain or diminish the very real concerns that people express. As I am aware, many people maintain a healthy appetite for intimacy throughout their life. This is not to say that desire for intimacy will not ebb and flow as a part of a healthy life free of disease or illness. The question is whether your own hep c journey has caused your libido or that of your partner to be diminished. A few years ago I conducted an informal survey with a group of people with lived experience. The group was made up of people who had never treated, and those who had treated previously, and people with cirrhosis. Some were SVR, and generally speaking it was a cross-section of the population affected. The majority of people responded with a yes in respect to my asking if they felt their libido had been impacted by living with hep c and from, or during treatment. Some were candid about how they were affected, and the dialogue was healthy in my view. Possibilities for improvement The comments were from the full range as one might suspect. In general people experienced a decrease in interest in the time before treatment, as their symptoms worsened-if they did-during and after treatment. In most people who had treated in their past and were cured, they saw an improvement in their drive over time. New therapies promise greater cure rates and shorter duration of treatment. Newer drugs may see fewer post treatment issues like we saw with peg-interferon, but there have been anecdotal reports of some post-treatment concerns. To my knowledge at this time, there is no good data to support any long-term adverse health conditions. I am not suggesting for a New York second that one should ever avoid a cure! As someone who treated some year’s back - 5 years ago, I understand the desire and need for being hep c free. I am myself cured and regret nothing about my own choices around treatment. Thinking about the whole person We all share a common goal. To be well and to have the best possible quality of life. This includes our sexual health, as much as it includes our other measures of good health. No one piece is more important, except to the individual, and we are all individuals. Dialogue is key to understanding, just as much as science is important to learning and knowledge. Keeping the lines of communication open between affected persons is one way that can help, and I am of the opinion that there is no absolute answer or piece of the puzzle that unlocks the door to a perfect outcome, regardless of the topic. Reading, sharing, and if it works in your world, engaging a qualified therapist, but there is no one truth that fits us all. Don’t give up, there is always hope. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Hepatitis C (HCV) is passed through contact with contaminated blood. We've noticed that many people new to the hepatitis C community want to know if HCV be transmitted through sex. So, we asked our experts and here's what Corinne and Sue had to say: Ask the Expert: From Corinne Hepatitis C is spread from blood to blood contact; generally this happens when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected. Today, the most common route of HCV transmission is through intravenous or sharing injection drug equipment. Prior to 1992, many people contracted HCV through blood product transfusions. HCV can be transmitted through sexual contact, however, the risk is considered to be low. According to the National Institutes of Health, for heterosexual discordant couples in monogamous relationships, the risk of HCV transmission is estimated only to be 0 to 0.6 percent. Based on the low risk of transmission, couples in a monogamous relationship do not need to use condoms, although it is important to know that condoms reduce the risk of transmission even more so. However, there is increased risk for sexual transmission among individuals who have multiple sex partners and when sexual practices result in blood to blood exposure. The risk of sexual transmission is also more common among HIV-infected individuals, and men who have sex with men, especially if those partners are co-infected with HIV. If an individual has a sexually transmitted disease, engages in rough sex, or is co-infected with HIV it is recommended to use condoms to prevent the transmission of HCV as well as other sexually transmitted diseases. As always, it is important to discuss any risk factors with your doctor for appropriate education and counseling as each person’s situation is unique. It is important to know that there is no evidence that kissing, hugging, or casual contact without exposure to blood is associated with HCV transmission. Ask the Expert: From Sue Hepatitis C virus is not considered a sexually transmitted disease. In order for hepatitis C to be contracted, blood from an infected partner must enter the bloodstream of a non-infected person. Unlike hepatitis B or HIV, the virus is not found in infective amounts in sexual body fluids. On the rare occasion that someone is infected through sex, it is usually due to the person having a sexually transmitted infection that causes lesions or cuts in the genital tract or the female partner is menstruating. It is also transmitted more frequently between men who have sex with men, and in people who have sex with prostitutes, and in sex between couples who have more than 5 sexual partners. Anal sex puts a person at higher risk than the people who engage in vaginal sex. Rough sex increases risk of transmission, as well. In long term monogamous couples the rate of transmission is less than 2%. In fact, the Centers for Disease Control and Prevention (CDC) does not recommend the use of barrier protection in long term monogamous couples. Some of that 2% statistic may actually be because married couples take care of each when there is illness or an accident and blood may be exchanged during those times. The important thing to remember is that if you have more than one sexual partner, or are not in a long term monogamous relationship, barrier protection should be used. In fact, safer sex should always be practiced between unmarried couples as there is a much higher likelihood of hepatitis B or HIV being transmitted. The Mayo Clinic also cautions that if a person is infected with HIV, they are at higher risk of contracting HCV. Condoms are approximately 99% protective. Get vaccinated for hepatitis A and hepatitis B. It’s the best protection for those two viruses. Ultimately, it's always beneficial to talk with your doctor or counselor about any concerns or ways to stay safe. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] There’s something so vulnerable about being sick. Hepatitis invades our liver and can leave us with some symptoms, side effects, and other awkward problems. Oh my gosh, and when sex is involved, we can become super embarrassed. I was single after my diagnosis, but surely didn’t want to spend my life celibate. Thankfully, the right guy came along and we dated during my 43-week treatment. After my sustained virologic response (SVR) showed a cure, we got married. Even then, there have been some very awkward sexual moments with hep C related problems. We get through those times and enjoy life to the fullest with hep C. I got through it all and am moving into my radiant future. You know I’ve got your back, especially if you need any tips about handling those weirdly embarrassing times. Telling your partner about hep C This one was hard for me. We had dated quite a while, and then one night I cooked soup at his place. Well, I make really good soup, and before you know it, we were very relaxed and feeling at home with one another. Things were going well, until I panicked about hep C. Pulling the sheet up around my shoulders, I blurted out, “I’ve got something to tell you!”. I was so afraid of what he would say that I asked him not to look at me while I talked about the virus. Luckily, he had a holistic health background and knew more about hep C than I did. He knew that it was not a sexually transmitted disease. He reassured me... and I may have fallen in love that very night. I’m sick to my stomach Seriously, I kept ginger chews in the night stand, and I always had an antacid nearby too. I didn’t have food allergies, or sensitivities. No, I had a stomach full of varices that could not be banded. Sometimes, I was just too sick to have any fun. There are works arounds, I assure you. Relaxing together while sitting up helped. So did listening to calm music. On some occasions, cuddling just had to be enough. Vaginal dryness After a certain age or with hep C, you may have hormonal imbalances. Things can get a little out of whack. Ask your doctor about a hormone cream. You can also try a water soluble type jelly or an oil. Find one that won’t upset your PH balance. Impotence Sometimes with hep C, our whole body is tired. Whether it’s fatigue, brain fog, hepatitis C, or just aging, your body may not always cooperate. Again, a doctor can help prescribe something, or you may have to get inventive to coax things along. If it’s fatigue, you may want to enjoy a long, lingering experience. Another option is to invite your partner to lead with their own energy. Building trust Having a relaxing and rewarding sexual experience is really about trust. Build a strong friendship that will last after the initial attraction wears off. Partner with each other in a variety of ways outside of the bedroom. Then you can have goals that go beyond a climatic release. Let strong communication drive your desire, and that kind of fire will burn long after the awkward sexual moments with hep C are over. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] For many people, dating is a daunting process. There are websites and apps, friends of friends, blind dates, and lots of trying not to get your hopes up. Perhaps the one nice part about it is that you typically know that everyone who is dating is generally in the same boat of anxiety, worry, and wondering what to wear. For those with hepatitis C, though, this experience can feel both additionally scary and isolating. When to talk about hepatitis C Often, people do not know what hepatitis C is or what it means when someone says they have it. Some people choose to post this information in their online dating profile, as they believe it is better to make others aware upfront than to risk becoming interested in someone who leaves when they are told about the hepatitis C. Others feel that this is providing far too much information in advance and, like telling someone about your crazy relative or secret love of silly putty, it is better to share information with someone as the relationship evolves and the situations arise. At some point, however, the connection between two people can reach a point where both know that they are interested in pursuing something more serious than simple drinks or meals together. Hepatitis C is not considered to be a sexually transmitted disease, so many of the viruses with pamphlets about how to tell your partner do not apply here. Since hepatitis C is transmitted primarily through shared needles or through blood exposure, it is certainly possible for a person to have a relationship without telling the other person or exposing them to the virus, simply by not engaging in sharing needles or in allowing the person to become exposed to your blood. However, sharing a toothbrush or razor can put the person at risk, as can any accidental injuries such as a bloody nose, cut from shaving, or other unexpected incidences. Some people believe that their hepatitis C diagnosis is no one’s business. Certainly, your medical information is yours alone to share. However, new partners may not always agree with this and some may feel betrayed or lied to if the relationship grows and the person does not share this information. It is important to share only when you feel comfortable and to do so with all of the information ready to discuss. What to say For those with hepatitis C for a period of time, the medical information may sound like common knowledge. It is important to remember that you may be telling someone about your diagnosis who has never heard of hepatitis C or who may think it is something very different than it actually is. When you decide to share your diagnosis, be prepared for reactions and questions that may seem offensive or ignorant. Try to remember that you have begun to get to know this person because you found them to be a wonderful person and try to keep in mind that their reaction may come from a place of confusion, lack of knowledge, and worry about you, someone they have begun to care about too. It can be helpful to share your story with them, rather than just your diagnosis. It may help if they hear how you became infected, if you know this, or what caused you to get tested. They may want to hear about whether they are at risk or whether they have already been exposed to the virus. They may want to know about what is happening in your treatment process, from your medical appointments to whether you are experiencing side effects from your medication. Although they may ask these questions, you can always tell them that you prefer not to answer, however doing so may make it difficult for them to truly understand your experience and what you want them to know. Rather than refusing to answer a question, you may find it better to ask why they are asking, so you can understand what their thoughts are and address them, even if you choose to do so without sharing information you may prefer to keep to yourself. Final thoughts on relationships with hep C Overall, choosing to share any medical information can be a scary thought and it should happen when you feel ready to disclose. Nobody wants to alarm someone or scare them away. However, building toward a long-lasting relationship takes risk and trust and working together to share information can be a bonding experience for two people who choose to be open with each other. Working toward a shared goal of understanding and respect can be a great way to continue the newly formed bond between you.1-4 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

Sex and Intimacy with Hepatitis C

Going Through Rough Relationships After Diagnosis

How is Your Libido?

Ask the Experts: Can HCV Be Transmitted Through Sex?

Awkward Sexual Moments with Hep C

Getting Dumped with Hepatitis C

Relationships & Dating with Hepatitis C

Sex and Hep C

Finding True Love After Hepatitis C

Explaining HCV Treatment to Romantic Partners