Connection Between Lupus and Low Sex Drive?
At age 49, I started feeling really bad. I gained over 30 pounds in 3 months with no changes in my eating habits. I usually only eat a small breakfast or lunch and dinner and maybe a late night snack. I went from 126# to 155 seemingly overnight- very unusual for me. AI hasn't been to the doctor in years and ended up in the ER one night where I was diagnosed with multiple cysts on my ovaries and uterine fibroids. My period also abruptly stopped and never returned. They told me to follow up with a doctor, so I did and over the next year, I discovered through a review of my medical records that I had dangerously high cholesterol Anda blood pressure, that had gone untreated because my doctors never noticed. Around this same time, I completely lost my sex drive, to the point of even feeling a little nauseous just thinking about it. It was like someone had flipped a switch inside of me. That was not like me at all. I've always had a good sex life And I have been with my boyfriend for nearly 11 years.
I had a positive ANA and some other abnormal immune system blood tests. I developed fatty liver disease, a weak bladder, arthritis, intermitent chest pain, migraines, and breathing problems. My primary care doctor thinks I have lupus and referred me to a rheumatologist. But I was unable to see one because I couldn't find any that were taking new patients in my network that I was able to get to because I don't drive. So whatever is wrong with my immune system has been ongoing and unchecked, and I have felt progressively worse and worse every day, along with depression and anxiety. I had to stop the antidepressants because they were making me throw up. I was finally able to get an appointment with a rheumatologist for next month so I hope he can help me feel better.
But the problem now is that my boyfriend doesn't wake to be in a sexless relationship Anda I don't blame him for that, - I don't either, but it's grown increasingly difficult for me to have sex and pretend that I am enjoying it, so we are down to like once a month now and only because he gets an attitude or else won't stop groping me until I finally just do it so he will leave me alone for a while. It's more like a chore that I do to make him happy. But I almost fell like I am being molested or taped or something because I am having sex I don't want to have and I'm sure that's no picnic for my bf either. I still love him and he is my best friend, and I still find him sexy as hell, but for whatever reason, I have no interest in sex. I recognize that sex is an essential part of relationships, especially for a man, and this isn't fair to him either. He's not the one that's broken. This is where it gets complicated.
I last worked in 2018. I started a new job supposedly paying $35,000 a year, but after working 3 full time weeks, they only paid me $200 and fired me for telling my supervisor there was a problem with my check (I have since learned that wage theft is commonplace for this company). I couldn't pay my rent and was evicted from my house 3 weeks later. I lost everything I owned but my dog and the clothes on my back. My boyfriend was staying with his parents at the time so when I was evicted he brought me home to his parents house because I had no money, no car, and no place else to go. But his parents hate me, they have hated me for the whole ten years I have been with their son. They think I am a closer and refer to me as a stray that he took in. They make sure I know I am not welcome here everyday in every possible way. It was so bad that we moved into my boyfriend's utility trailer that's parked in the back yard behind the fence. We run an extension cord to the house for power. It's one of those black windowless 17 foot trailers people use to tow race cars or recreational toys like 4 wheelers. Anyway, the closest bus stop is almost a mile away and I used to walk or ride my bike there to go look for work, but I just can't do it anymore because I can't even make it to the end of my block without feeling dizzy (I'm in Florida so it's very hot here), having to stop to use my inhaler, and because the pain of arthritis in my foot hurts too bad. Then I miss the bus by the time I can get there. So I haven't been able to get a job or work because I feel like crap everyday Anda am so exhausted it's hard to even get up and I often fall asleep even in the middle of my dinner and wake up with my food on the floor. My bf has always worked (he does construction) and he pays our living expenses. I get food stamps and pay for the groceries. I tried to get disability but was denied. Another application is pending. I don't see how I can work when I can't even climb a flight of stairs without losing my breath or having chest pains. Some days, my foot is so swollen from the arthritis that it's hard to put my shoe on.
So, basically, I feel like crap every day from untreated lupus, I live in what is essentially a giant box in a place where they make sure that I know I am not welcome. I have no money, no other place to go, and no way of getting there even if I did. I have to shower in the middle of the night in the back yard with the garden hose like a farm animal. It's hard to feel sexy like that. My dog that I've had for 12 years is dying of heart failure so that just adds to my misery. It's depressing and lupus I think makes it worse. I also have panic attacks that just started a couple years ago.
This brings me to today and the reason for my post. My bf left and I didn't even know he had left the property until I went out front and saw his van was gone. I text to ask where he went and did he left without saying goodbye. It's the sex issue again. He says I've changed, that I don't like gin anymore. He says he's not gonna be my sugar daddy anymore. I had no idea that's how he thinks of it but he is right. I know Ive changed, but not because I wanted to I can't help it. I'm not the sexy vixen I used to be lol! My sex drive just went out the window and I want it back. Idk what's wrong with me. I thought of this as a temporary problem that would improve once I got treatment for lupus and when we are finally able to get the hell out of this miserable box and yard move somewhere else and can live a normal life. I never thought of him as a "sugar daddy" but now that I know how he feels and that no sex or minimal sex is a relationship- ender, I guess it's over for us.
So I was wondering if anyone else with autoimmune disorders have ever had any problems with their sex drive and how they handled it if they were in a relationship. Is it better for people with lupus related libido problems (I'm guessing that has to be the cause of my problem) to just be single so they don't end up losing relationships because of it? How do you deal with this? Are they any medications to treat lupus that can help with loss of libido? I will ask the rheumatologist when I go, but it's embarrassing and I hate even asking about this here, but I don't know what to do about it. Any input or suggestions would be very much appreciated. Thanks for reading.
whew First I just want to send you a gentle hug. You have dealt with and are dealing with so much not only physically but I am sure mentally. Stress, lupus and life being life can all really take a toll on every part of our being even our libido.
There is so much to unpack when it comes to chronic illness, pain, stress, possible menopause when it comes to libido. I’m sorry that you feel like it’s a chore but it could be so many things that makes you not get in the mood. When I was first being diagnosed the sex was minimal. I was in too much pain and stressed out from not knowing what was going on. Fortunately my husband understood and it was not a deal breaker. The only thing that changed my situation was getting in the right treatment and feeling better. As I felt better that urge came back.
Also it could be your hormones out of wack because of everything you are going through and possible menopause. I would check with your gynecologist as well.
Once again I’m sorry you are going through all of this. I am holding space for you to find sufficient work, housing and a firm diagnosis with treatment that works. I know it is all so difficult and I am happy you are here. Just getting it all out g an help to release and help you to create a plan.
~Racquel~ Team MemberThank you for your thoughtful reply. I hope it gets better with treatment, as well. Unfortunately, I will probably be single by then so it won't matter as much. I am so hurt to learn that my boyfriend would rather not be with me after 10 years if he doesn't get sex like he used to before all this happened that even if it were cured tomorrow it wouldn't matter because I don't think I can be with him anymore anyway, now that I know how he feels about me. You are lucky that your husband is supportive. I guess I am just too broken to be with anyone.
maybe he did you a favor. 🙂↕️The stress of trying to please someone all the time can make you even sicker. Sometimes when people show you who they are you have to listen and believe them. It’s unfortunate that some people cannot look past their own wants. This is such a powerful statement of strength that you said, “ I don't think I can be with him anymore anyway, now that I know how he feels about me.” I agree and I hope that you are never put in a position to choose between yourself and living to please someone else. You got this.
It’s okay to feel a little broken you’ve been through so much and that will take time to heal from. Even in brokenness we can piece ourselves back together and work towards getting better. Even broken crayons can still color. ❤️❤️
Keep us updated as to how everything works out. I know it won’t be easy so lean on us to release and vent if you have to. This a great supportive safe space. ~Racquel ~ Team Member
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I just wanted to jump in and add my support.
I'm sorry you are going through all of this right now.
As Racquel mentioned, maybe he did you a favor.
The most important thing right now is to focus on you and your health and well being.
There are resources out there that can help. Including housing (or shelters), food and other assistance. Although I am not familiar the specifics in Florida it may be helpful to reach out to local agencies or your healthcare provider for help.
In addition, I hope your upcoming rheumatologist appointment will provide some answers and relief.
Always know this community is here to lend an ear and provide support. Reach out anytime.
My best, Doreen (Team Member)
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I also wanted to add a few articles that may provide some helpful insight: https://lupus.net/living/sex-talk-with-doctor and https://lupus.net/living/domestic-abuse
Kindly, Doreen (Team Member)
This is a bit of a long read so I apologise.
You are not alone. I am 37 years old and was diagnosed in 2022 after 7 years of not knowing what the hell was happening to my body. It started with my face swelling up, then my abdomen then my legs. My period stopped then was irregular, I couldn't move in the morning without crying out from pain as the oedema fluid in my legs was hard and I needed to crawl to the tub to pour hot water on them and massage them to make the fluid soft again so I could move my joints that were also hurting. I was in pain, felt sorry for myself, stressed out and afraid. Who thinks about sex when they feel like that? The sex drive will come back when you start feeling a little bit like yourself again. You will not need medication for libido. It is absolutely normal and expected that when your body is going through what yours did, along with stress from your living situation, jobs, your dog's health, financial issues etc that your sex drive would disappear for a while!
I had a stabbing pain in one knee almost constantly unless I was laying down, I couldn't eat because the fluid was pressing on my stomach, but appeared to have doubled in size, even though I later found out it was just the oedema, Lupus was actually eating me up. I couldn't sleep unless I was propped up with 3 pillows because I had fluid around my lungs and I would cough like crazy if I attempted to get more horizontal. When the oedema got worse than that, my genitals were swollen and at some point the fluid even started leaking out of my torn ankles because gravity would make sure they would get the worst of it. I couldn't wear shoes and had to get a version of adjustable Uggs. I remember cutting socks to fit my foot it. Looking in the mirror was depressing and shocking. Everyone was shocked to look at me and I couldn't recognise myself anymore and felt like a burden. Also having people see you as a sick person when you can't even tell them what you have is devastating because they don't know that the worst of it is not knowing when it will go away, what is happening and why and how much damage it actual does. I couldn't keep my job as a teacher because I couldn't stand for long hours or was in too much pain and the last thing I thought about was sex!!! I didn't care about it. I have been to the emergency room and kept in hospitals for weeks while they were trying to figure out what was happening. Probed and poked and scared and told I'm healthy but have a mystery illness.
I was 3 years into my relationship when the symptoms started and when he saw how much pain and discomfort I was in, he wasn't thinking about sex either. We broke up a bit before I was properly diagnosed with Lupus Nefritis for other reasons. The flare ups were a constant in our lives with them lasting anywhere from 2 to 6 months at a time. I am on 3 immunosuppressants, and a couple of other ones that seem to have done the trick as a medication cocktail. I had to accept that I will not birth children because of my meds and the complications to a future baby and the fear of another horrible flare up and need for a kidney transplant if I switch my medication or from the pregnancy hormones. That is a hard pill to swallow (and I do swallow handfuls each day) for both me and any future partner.
Your doctor will find the right medication for you. It takes patience and hard work to keep up with everything. Educating yourself about your condition and accepting it. Having Lupus means your life will never be the same again. It means sacrificing people, jobs and things you once enjoyed doing but it doesn't mean you don't find beauty and balance in life again. You just do it in your own terms with people who actually care about you.
Stress is my flare up trigger so I had to learn to eliminate it as much as I can and accept the things I can't control. You find a job you can do from home, or that is low stress. You educate people close to you about what you need and you reach out to family because a support system that understands what you are going through is important. You find what gives you peace, whether it's listening to music, or forest bathing, or yoga, or people watching from your window and you focus on understanding what is happening to your body with your doctors. Sadly America's health system isn't great and you will require check ups and tests. You just need a doctor that will figure it out and help you and you will slowly start to feel like there is light at the end of the tunnel. Flare ups might happen but you will be able to cope better and bounce back quicker. You have to feel safe again for the sex drive to return and please do not be afraid. The light at the end of the tunnel is there, you're just not that the end yet. We might be spread around the world but we understand what you are going through, you are not alone, and you will get through this.
, I love that you took the time to share your story and words of encouragement and support for ! You have definitely been through fire when it comes to your health and your Lupus journey. I am glad you are doing much better and feel more like yourself! Your story really can offer some hope for other members that are still in the thick of things, trying to find a medication that works.
Thanks so much for joining this conversation!
Best, Erin, Team Member.
