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HIV and Marriage (long)
Good afternoon, everyone. I'm new to this board, and I was hoping that there may be posters here that could offer some insight into my situation - or just some support.
My marriage is a serodiscordant marriage, meaning I am HIV negative and my husband is HIV positive. He and I were friends for a long time before we started dating, and so I've known about his status all along. I understand that for many people, his health status would be a deal breaker, but I love him just as he is. His strength and diginity in dealing with HIV has always been something I loved in him, and he's generous, kind and my best friend. We have great communication, we share complimentary philospohies, and we approach life as a team. We have a very mature relationship not just because we've both been through alot (his struggles with HIV and coping with his bisexuality, my struggles through a nasty divorce a few years back), but because being in a "magnetic relationship" requires a very high level of maturity.
And yes, he is bisexual. I love this about him, and it is something I've known all along and never had a problem with. Other people have a problem with it, but we figure that makes it their problem, not ours. Just so you understand the background, he sort of had a reverse coming out experience - meaning his only significant relationships and experiences until he was 25 were with men. He'd always had an interest in both men and women, but he'd never met women he really clicked with romatically until around that time (or he was in a committed relationship with a man that lasted for a significant time). Even so, his prior relationships and sexual experiences with women prior to our relationship were rather limited (2 women before me).
In any case, we're having some difficulties related to sex that are very frustrating, and it's difficult to find people who are willing to offer support or guidance without encountering criticism for marrying a bisexual man with HIV. Mostly, the reaction I get is tantamount to: "What did you expect? He's HIV positive? You should have never married him when there are so many other men out there." Or I get, "Honey, he's really gay. There's no such thing as bisexual men." It's both rather surprising and disappointing to realize how much ignorance abounds regarding HIV (and bisexuality for that matter).
I'm currently very, very frustrated with our sex life. We were abstinent prior to marriage because at the time we began dating, he began experiencing viral mutations that forced him to change medicine regimens and his viral load was quite high. In order to avoid high risk behavior, we stuck to manual stimulation and mutual masturbation. Thankfully, his new meds work well, and his viral load is undetectable again and his CD4 counts are high. He's very healthy, and the only problems he's really had related to HIV have been problems with stomach pain and diarrhea which have dissipated now that his body acclimated to the new meds. So, long story short, we got married and started having protected intercourse and oral sex. The sex is good when we have it, but it doesn't happen as frequently as I'd hoped. Also, he's been having issues losing erections, and he's had problems with low sensitivity in his penis. To top things off, his relative inexperience with women means I'm having to help him to learn alot of things, and not to sound pathetic, but I'm honestly getting tired of "teaching." We're communicating about sex all the time, and really, I understand that it's my resposibility to educate him about my body and my needs, but sometimes I'd really like it to be less complicated.
I have a feeling that a good part of the problem is medical as we never had issues with sex drive or erectile dysfucntion until a few months ago. Part of his regimen is Ritonavir which can cause low libido and diminished genital sensation. And it looks like this may be happening. He's got a doctor's appointment in a couple of months (earliest available) to get checked out for med-related side effects and low testosterone, but in the meantime, I am finding myself becoming increasing frustrated.
And so here we are. I am becoming bitter, and I'm starting to take out my frustration on him. Personally, I want sex every day, at least once a day. I was very clear about this before we got married, and even though I know he's trying, and find myself getting increasingly impatient and frustrated. Right now, it's happening about once or twice a week - and when it does happen, we have intercourse (not including all the foreplay) for a loooong time. The past few times we've had sex, it's been an hour or an hour and a half of intercourse alone. We end up exhausted and sore because he can't orgasm. I orgasm just fine during foreplay, but he just can't get there through intercourse or oral sex, and it's taking longer and longer (possibly because of anxiety on his part) for manual stimulation to work. We think the condoms probably play a large role in problem. We have tried tons of types and brands, and he still can't really feel much while he's inside of me or while I'm giving him oral sex. I'm ashamed to admit that we had unprotected intercourse (for a couple minutes only, but still) a couple of times (at my urging), and every time he's been inside of me without a condom, the issues go away - he feels like he could easily reach orgasm, and the sensations are improved. Still, we don't want to do anything risky or stupid again, so unprotected sex is a definite "no".
As if knowing you have to have sex with a condom with your husband for the rest of your life isn't hard enough, now the condoms are literally killing our sex life.
I'm so frustrated, I literally find myself being a total b*tch over every little thing, and I constantly have to pull back and "check myself" for lashing out instead of trying to be more patient and understanding. I feel unattractive and less and less turned on by him even though I know cerebrally that these issues are not related to his feelings for me. But the less sex we have, the sh*ttier I feel. The more often he loses his erection, the sh*ttier I feel. The harder it becomes to bring him to orgasm, the sh*ttier I feel. I know my attitude isn't helping matters, but I can't help feeling this way. I've been to several counselors in the past, and none of them really know how to deal with a serodicordant relationship, and oftentimes, I've hit walls of prejudice and misinformation with the counselors.
I just want to have good sex with my husband like "normal" newlyweds. We talk about these issues alot, but I find myself less and less inclined to be understanding - and sometimes I feel like the more I try to talk with him, the more pressure it ends up putting on him even though the conversations are very calm and open and loving. I'm not even sure as to what my goal is in posting this except that it makes me feel better to be able to write it all out here. I knew that working through issues like this was a possibility for us, and I knew that in marrying him, I was accepting all of this struggle. It just doesn't make it any easier.
In any case, I've rambled a bit, but I appreciate your attention. 
Thanks for listening.
Re: HIV and Marriage (long)
I honestly don't have much other than please don't risk your health over this. Truly it will not be worth it in the end.
Do you have to get tested regularly?
Don't worry, I'm working on it.
Get it on!
It's good that he's got an appointment (though it's crazy to me that he has to wait months to talk about his drug regimen and the side effects!).
In the meantime you have to decide what you're going to do. With an undetectable viral load it is extremely unlikely that he would transmit the virus to you if you did choose to have unprotected sex. But that is a very difficult decision to make--and not just for you, I'm sure he has complicated feelings on the matter as well.
Do you guys talk to a counselor of any kind? I'm not sure what kind of services are available where you live, but talking to someone who does relationship counseling and also has a strong understanding of the science of HIV infection might help until he can determine if the Retonavir is the root cause of the issue. Or maybe you can find a support group for sero-discordant partners?
I have never had a partner with HIV, but my MS thesis research was on sexual health and family planning for sero-discordant couples. I interviewed dozens of couples who are in a very similar situation--you're not alone.
Good luck to you guys, I know it's rough!
First and foremost STOP IT with the risky behavior.
Secondly, you knew all of these issues before you were married and willingly married into them. Even if you were abstaining prior to marriage you still new the medication he was taking and should have been well aware of the side effects.
This is one of those for worse situations. You need to stop taking your frustrations out on him, becuase they are out of his control. You don't have to continue in a marriage you are not happy in for whatever reason, but treating him the way you've described is just wrong.
I'm very sorry about your situation but I have to say I'm happy to see that there haven't been any rude responses. My only suggestion may seem odd but I was thinking if anal is what he is used to... have you tried that? Is that something you are into?
I have to agree with the other comments that it seems like you are doing everything you can and don't compromise your own health. It really sounds like you are out of options which sucks but you are expecting a lot of sex. My FI and I only have sex once a week on average. I would say once a week quality sex is better than forcing it to happen every day and getting over frustrated and putting a strain on your relationship. Good luck!
I'm glad to hear his CD4's are up and his viral load is down, but please continue to be safe and use condoms! Are you sure the ritonavir is the cause of his issue? Is there any way you can get in to see another doctor who specializes in HIV/AIDS care to talk about this?
Don't compare yourself and your husband to "normal newlyweds." There is no such thing. "Normal" is defined within your relationship, and your relationship alone.
Good Luck and I'm sorry you're going through this.
I'm sorry you are dealing with this. Some thoughts, in random order:
1) Continue looking for another counselor. Maybe someone would be able to give you a rec for one that fits you better - like a friend from an HIV support group. You might want to consider going to individual counseling, as well.
2) Go back to the manual stimulation/mutual masturbation thing for a while. One of the great benefits to this is that this can work well for a couple whose sex drives are at different levels. It might also take the pressure off of him to perform.
3) Sit him down and talk to him, openly and without criticism. Use the "I statements" in the conversation, not the "you statements". Example - I am experiencing a high sexual drive this month and I want to include you in this, but I can masturbate solo if you are tired and not feeling sexy. Not - you aren't giving me enough sexy time. It sounds like you are overdue for a long talk. While a conversation alone doesn't guarantee fixing anything, it gets you on the same page and may allow a bit of an emotional release for you.
I can't imagine having sex for an hour and a half. I would be completely sore and probably bleeding by the end of that, and I have a pretty high sex drive.
Hopefully some of that is helpful. Best wishes.
This is what I was thinking, I wonder if there'd be more sensation with a female condom?
This sucks though, I'm really sorry that both of you are going through this. It think one thing I would suggest though is to aim for 2-3 times a week instead of once a day. I know once a day is your ideal but sometimes that's hard for ANY couple let alone a couple with a lot of extra stress adding to the burden of everyday life.
All the best to both of you.
I think you're being selfish.
I don't think sex makes a marriage. There are plenty of ways to bring partners close in a relationship which don't include penis/vaginal stimulation.
To put the demand of having sex on someone who is sick on a daily basis is so wrong. You're being abusive to him emotionally and that is wrong.
My husband has diabetes, and I would never, ever think I had the right to tell him that I want to have intercourse on a daily basis. I would never, ever think I had the right to emotionally abuse him, and I would never be resentful of the fact that he just doesn't feel well.
Your issues are so much more complexed than diabetes, but let me assure you that when a person is sick, they are and your husband isn't only battling HIV, he's battling the end result which is AIDS.
A family member recently passed away with AIDS, and was kept on life support for 4 months, so don't come back with :you don't understand: because I do!
Read the post -- this was clear to her husband before they got married. If he didn't want to sign up for that, he didn't have to. If your sex drive is not compatible to your spouse's, it can make you miserable. And life is too short to be miserable all the time.
There's nothing selfish about wanting to be happy.
This sucks though, I'm really sorry that both of you are going through this. It think one thing I would suggest though is to aim for 2-3 times a week instead of once a day. I know once a day is your ideal but sometimes that's hard for ANY couple let alone a couple with a lot of extra stress adding to the burden of everyday life
I agree! I think you really need to slow things down and know that wanting sex every single day is not realistic in your marriage. I remember reading something a sex therapist wrote once about the benefits of slowing the frequency of sex to the partner with the lower labido, (within reason). That way, they don't develope an aversion to it. Sex once or twice of week is very healthy! I think your frustrations are giving your husband a lot of anxiety and the inability to let go and orgasm. I understand that condoms do make it more difficult but what about manually stimulating him with your hands long before the condom needs to go on to bring him close? Maybe that will help, but this does sound like a combination of a lot of things, including the medicine he's on.
Ditto 100%
If your husband is bi, does that mean that he's continuing to have any relationships with men, or does him being married to you mean he's living a straight life now. Yes, I'm clueless on how all of this works.
I guess what I'm getting at is, if he's still having some relationships with men, would he be open to the thought of you having a strictly physical relationship with someone else?
I get the wanting to be connected with your husband thing, but you seem to base that alot on sex. If you looked in other directions for your physical needs, maybe you'd feel more connected by doing something else with your DH.
I'm not ok with cheating, but you're ok with other things that I wouldn't be, so it may be an avenue for you. Though you'd have to make sure all involved know that you're married to a person with HIV.
This. And I am in a serodiscordant relationship with a man that has some of the same performance issues due to the condoms as your husband. But I am patient and understanding about it and fully accepting that this is something we work through together. There are also other things you and he can try (creams, lubes, supplements, toys).
I'm sorry you feel alone and that you can't talk to anyone else about your struggles (I definately can relate on this one). Go find a new therapist, one that isn't prejudiced or uneducated. Treating your husband poorly because HE can't orgasm when having sex with you is pretty crappy on your part and is your issue. Imagine how he feels.
I just want to take a moment to thank everyone from the bottom of my heart for taking the time to read this post and for lending support, advice and perspective. All of your words mean so much to me, and I am grateful for all the perspectives presented. Thank you.
I'm going to do my best to properly respond to everyone, but please accept my apologies if I miss something.
@cheer1uca: So far, missionary position seems to produce the most feeling for him. For me, I enjoy all of them, and we've tried to sort of switch things up to gage if there are better positions - but so far, not much luck.
@ClaireHuxt: I do have to get tested regularly - about every 6 months. I'll be going next week, actually.
@mxolisi: Yes, it is crazy and frustrating that he has to wait so long for an appointment. However, he's former military, and it's his VA benefits that cover his HIV treatment. The good news is that the services are affordable and available, but the bad news is that there tends to be rather long waiting lists for appointments. We'd go with his civilian insurance coverage except that the deductibles and co-pays for HIV when it's pre-existing is through the roof and truly cost-prohibitive at the moment. As far as unprotected sex goes, we made the decision together before we got married that it wasn't an option. It's extremely difficult to not have it, but it's best for both of us. I know that if we were to have unprotected sex, and I did become positive, I would be so worried about him and his reaction ? on top of my own health. He would be devastated, and even beyond taking care of myself, I want to make sure I take care of him. Now, we did slip up and he's been inside of me twice without a condom for about a minute or so. Even those times, he felt very guilty, and so I'm doing everything I can to avoid that behavior in the future not just for myself but also for him and his peace of mind. And how wonderful about doing your MS thesis on serodiscordant couples!
Do you mind if I ask if you could share some of your research resources? It's so difficult to find information on family planning, sperm washing clinics, programs, support groups, etc. We both really want children about 5 years down the road, and we're trying to educate ourselves as much as possible. Also, we're both going back to school for our graduate degrees in Psychology with a focus on serodiscordance, so anything you could point us towards would be such a wonderful help. 
@Violet_Mcp: I appreciate the reality check. J Thank you. I know that I understood these things about him before we married, and I did the best I could to prepare myself to deal with all of the hurdles I knew I?d face. Unfortunately, I've hit a weak moment, and I've had to re-evaluate and work really hard once again to get myself back on track. I've always told both him and myself that I would never, ever trade him for another man with a less complicated past, and that he is worth all the effort and struggle to me. And that remains true. I guess I just got to feeling sorry for myself, and instead of being positive I feel into a pattern of being defensive and snippy. In truth, I've never been mean or degrading about our sexual issues. We always discuss those topics lovingly and logically and calmly because they are so sensitive (but we do discuss them alot, and sometimes I may be "too open? about my concerns - in a way that calls attention to them in a stressful way). What I've been doing is snapping over other things that have nothing to do with sex because the sex is what is frustrating me. So I'm snapping over unwashed dishes or my insecurities about my weight or if he falls asleep while we're watching a movie. I've been unpleasant and childish for several weeks and I need to stop. Sometimes, it's just easier said than done.
@kathylynn1: Thank you very much for the support and the suggestion. We have tried anal - both ways (me with a strap-on, and him penetrating me) - and neither has really produced greatresults. Plus, I'm not huge into anal anyways, and funny enough, neither is he when he's with a woman because it's not a "necessary hole" (lol). As far as the sex goes, I'm trying really hard to modify my expectations. We sat down and had a really good talk the other night, and we came up with a plan that I think may work for us. We've both made a list of touches, activities, sentiments, conversations, etc etc that make us feel loved or have made us feel loved in the past. Since one of my key reasons for wanting sex with him so often is because it's one of the biggest ways in which I feel loved and connected with him, we're going to work on focusing on other positive experiences. I'm really optimistic that it may work - and take pressure off of both of us. I really hope it does help because I?m am SO done with allowing myself to feel bad about this cr*p. I know I need to make the choice to change my perspective, and hopefully I can make that happen by focusing on positives.
@KAnde818: We're not sure that the Ritonavir is the cause of the issues yet, but hopefully once he goes to the doctor he'll get a better gage on what's going on. We also suspect low testosterone (which would explain his tiredness as well), so hopefully we'll have some sort of solution in the near future. And thank you about the reminder that there is no such thing as "normal". We're both really outside of the box people, and I was really allowing myself to be in a negative headspace. Thank you for reminding me that we are all unique.
@EriksPrinc and Lil'BlackD: I think we will try a female condom.
Thank you for the suggestion! I totally forgot about them.
@ZestofLime: Thank you very much for your advice and insights.
We are going to look for another counselor, and hopefully we'll be able to find a good one. We live in the deep south, and it can be tough to find resources here outside of large metropolitan areas which are all pretty far from where we are. I also like your idea of returning to the behavior we engaged in before marriage. And I really appreciate your insights about having a good talk. In truth, we were already having those kinds of talks (we're both working towards Psychology degrees, so we're really big on communication skills), but I was dwelling so much on feeling sorry for myself that I was throwing a mental temper tantrum because I wasn't getting my way. Basically, I was being childish and refusing to try to find solutions because I just felt so bad and hurt so much. So we were talking, but it wasn?t helping because I wasn?t ready to let it help. It was a tough place for him to be in because there really wasn?t anything he could do or say to make me happy. I had to decide to do that first.
@Mrs.Mo2006: Yes, I was being selfish. Generally, I'm pretty good at being judicious and caring (after years and years of work, lol), but sometimes I get into ruts where I feel - sad as this sounds - entitled to being selfish. Temper tantrums, basically. And yes, sex does not make a marriage. I know this very well since my first marriage failed despite a great sex life. Our marriage is about a lot more than sex. If it had been sex that was the most important thing to me, I never would have married him without having had sex with him first. Still, it is important to me, and it was clearly communicated as a need and an expectation before we got married. And he understands this, and he understands that part of the burden that he accepted is the burden of being patient with me and helping me to deal with coping with our sexual struggles. Try as I might, I cannot be selfless and respond with nothing but understanding all the time. That being said, to suggest that I am emotionally abusive because I have moments of b*tchiness and frustration when dealing with difficult, ongoing issues is really a bit harsh. I am human. I make mistakes. Sometimes I get angry. I am sorry if I gave the impression that I was somehow berating him for his erectile dysfunction and his diminished libido. I am not. I was being cranky in general, yes. I was feeling sorry for myself, yes. But emotional abuse? Not at all. I grew up in a household where my father emotionally abused my mother, and if anything, my experiences growing up have taught me how to never treat another human being. And though I do understand your statements about medical conditions, I believe I would be doing my husband a disservice if I treated him differently - with kid gloves - because he's HIV positive. He has never let himself be defined by HIV. He has never believed that he should live a limited life because of the disease; that it should stop him from experiencing even one moment to it's greatest potential. These are the traits I love best about him, and so if I simply said that because he has HIV, I will ignore my needs and desires and "take it easy on him" just because he's sick - well then I would be marginalizing him. I know that I need to be patient with him, to help him find solutions and cope. But he also has to be patient with me. He has to work hard for me - to find solutions and help me cope and not give up on my needs because there are extra hurdles for him. Personally, I have graves disease and diabetes. Because of this, I am presented with challenges in my life - medical, logistical, etc - that require that I shoulder extra responsibility to be more diligent and more responsible and plan better than people that don't have these hurdles. I know what I need to do to work with my illnesses to accomplish what I consider important. He approaches HIV the same way. I accept that I may not get sex every day, but I would not accept that he would use HIV as a crutch to not do the work he has to do to try to meet my needs. He is very healthy and not experiencing debilitating advanced HIV or AIDS-related issues that would significantly impede his daily functioning. In point of fact, he runs marathons and is very fit, and between the two of us, I get sick with colds and flus far more than him. Between the two of us, I have experienced more side effects and challenges because of the way graves disease affects my life than he has with HIV. I understand that graves is not communicable and does not carry a social stigma, but I have a lot of medical issues that I have to overcome as well. But I don't let that stop me. I make myself plan better. I make myself prioritize more. I would never accept less of myself, and I will never accept less of him. I'm very sorry about your family member passing away. I've watched a close friend die of AIDS, and though he was a friend and not family, I loved him very much. So I know at least a fraction of your loss. I can tell that this pain is very raw, and my heart goes out to you and your family. Please just know that if there are others in your life that are living with HIV, it does not always end with AIDS. There is hope. HIV is now considered a chronic illness, not the deaths sentence it once was. Sadly, like my friend and your family member, some people do succumb, but there is a lot of hope out there. We cannot give up on our loved ones, nor can we allow them to give up on themselves. And I?m not suggesting you did that ? I just want you to know that there is a lot to be hopeful for. Please take care of yourself - and know that though I may have disagreed with you in some respects, my heart still goes out to you and your family.
@juhlswen: Thank you very much for your advice. I'm definitely modifying my expectations for sex, and he's working to modify his. Hopefully we can meet in the middle!
@PurpleK26: Thank you very much for asking about how our relationship works. I know it can be confusing, and there is no such thing as a silly question.
No, my husband is not seeing any men. We have discussed open relationships, and it's not something either of us want. That being said, we do switch up roles sometimes just to have fun with it (hello, strap-on! ? lol). Unfortunately, even if we were finding sexual release elsewhere, my desire for sex is deeply intertwined with my desire for him - for expression of love and intimacy that is unique to our relationship. I want my husband. I don?t want other men. And it's funny because we spend a lot of time together and are very intimate in other ways - talking, touching, etc. I just keep really wanting sex with him ? all the time. I'm hoping that by working to focus on other positive activities and trying to masturbate more that maybe I can trick my higher libido into being happy. 
@AnythingBut: It's so comforting to hear from someone else in a serodiscordant relationship and to know that these issues are not unique to us. We live in an area of the deep south where there are no support groups or similar couples to connect with, and despite trying to educate ourselves, sometimes you just need someone to tell you that you're normal and not alone. Do you mind if I ask what some of the things are that you've done that you feel help in the sex department?
Thanks everyone, and have a great day!
In my city, we have a medical and counseling center that caters to HIV patients, and most places have something similar. While they may not be used to dealing with hetero partners, I'm certain they're used to dealing with serodiscordant partners and problems with drugs and condoms in relation to libido and sensitivity.
As it is, I don't entirely grasp why you require penile-vaginal intercourse daily rather than, say, masturbation, mutual or otherwise. Perhaps if you don't put pressure on him to ejaculate, you could have enjoyable intercourse for you until his drug regimen is worked out at least. I have difficulty orgasming during penile-vaginal intercourse, and it was harder for me when my FI used to insist that I had to orgasm or it wasn't good sex. If you get sore and tired, stop. It's not as though he's the one who needs the sex, so if stopping doesn't make him physically uncomfortable, stop after you get off and wait until next time for him. I unfortunately can't give much advice on good condoms as we don't use them, but I'm sure the other suggestions are good. My FI doesn't have any problem with them, but he doesn't have decreased sensitivity from drugs. I guess I would tell him to try a sensitizing cream inside the condom; might as well.