I’ve been coming to grips with this, and as difficult as it is to admit, I don’t think our sex life will ever recover if I’m being honest. Endometriosis is what killed it, and I have a lot of guilt for how I feel about it. I have gone from loving sex to feeling sad when I have sexual thoughts. I feel guilt for having sexual thoughts and urges. I feel guilt for how she feels after we have sex, even when she is the initiator. I feel like sex has become something we did together to something she does for me, and I hate it. I feel guilt when I masturbate on the off-hand chance she will want to have sex that night.
My fiancee and I had a wonderful sex life up until about a year ago. She quit oral contraceptives a couple years ago due to mental side effects and it uncovered her endo symptoms. Despite this, we still had an active sex life and enjoyed experimenting. We weren’t living together at this time and would have sex about 8-10 days a month, often multiple times a day when we were together. For some time, it almost felt like she couldn’t have enough sex. Sex was an escape for us when life was rough.
It has progressed every month from then. When we moved in together we saw a dip to about 1-2 times per week, which is understandable. Life happens and things get in the way. I communicated that I missed our intimacy and we made it a priority again. Queue 2023 – her libido has decreased with every month that passes due to endo. She does not think about sex. There is approximately a 5 day window each month where she feels OK, and we might have sex 1-2 times during that window. Aside from that, there is nothing. We don’t sext, we don’t tease each other, we don’t do anything. She tried a treatment but had side effects from it so stopped it before we could see if it works. I cried last night thinking about the days that she would send me teases throughout the day, or put my hand up her skirt while we’re driving. It feels so unfair that we both finally had a fulfilling sex life only to have it ripped away by this horrible condition.
I don’t know how to manage my feelings about this. To make one thing clear – I harbor zero ill will towards her for how she feels. It’s not in her control and she feels horrible about it too. She wants to get better, but I’m not sure what our options are. I fear we will soon progress to having sex every few months, to eventually not at all. I have zero urge to open our relationship or leave her. Aside from our sex life, she is the perfect partner and I love her more than anything. That being said, I can’t help but feel depressed when I think about all this. It feels like we have become roommates who occasionally see each other naked as opposed to partners. She asks me what she can do to help and I don’t have an answer. I’ve communicated many times that I don’t need penetrative sex to feel satisfied – I really enjoy mutual masturbation and other forms of non-penetrative sex. But that doesn’t happen since she has no sex drive. I don’t know where to go from here. I don’t even know that there is any point of writing this aside from getting it off my chest, but maybe others can empathize at the very least
Fuck endometriosis
24 comments
It sounds like you’re going through an incredibly tough time, what’s happening to her is awful and I can’t imagine how she’s feeling
equally on that it’s okay to have urges and still be horny, and I massively respect you for saying you wouldn’t want to cheat or leave her (big love)
Honestly I think you would be best off with a therapist, to get over your negative emotions due to wanting to fuck or orgasm, then you can discuss with your partner some options for ensuring you’re both satisfied x
Goodluck
That’s gotta be so hard on both of you, I hope things get better but props to you for being understanding to her. You shouldn’t feel guilt for having thoughts though, I recommend getting into therapy to work on your feelings about it. Goodluck🙏
So endometriosis can cause infertility and one of the treatments of Endo is hormonal birth control. She needs to be working closely with a doctor. There are minimally invasive surgeries for endo.
If she was having side effects on hormonal contraception but she has sex drive you might want to try nuva ring because it is fairly low dose hormone or other low hormone forms of contraceptives.
Without treatment such as hormonal contraceptives the Endo gets worse and needs surgery. Even with contraceptives she might need surgery.
this may be an obvious point but what you’re experiencing is grief. At least in the short run, your sex life as you know it is on hold for an indeterminate amount of time and you feel sad about it which is very understandable.
It is totally OK to grieve these things. Chronic illness doesn’t just affect when person but usually takes its toll on people around them. It’s cruel that way.
i’m staying this to try to validate that you’re feelings are completely normal under the circumstances. Obviously, what your partner is experiencing is a lot worse but it doesn’t mean this isn’t impacting you or your relationship as well. It’s important to acknowledge these things.
The difficult decision that both you and the two of you will need to figure out over time is how this will shape both of your sexual futures, and by extension, your relationship. I want to make it clear that this would be the case with practically any chronic illness, it’s not specific to this particular condition. it’s best not to think of this as being about “right or wrong” decisions but rather, what can the two of you live with. That requires a lot of discussion, a shit ton of honesty and a willingness to at least discuss uncomfortable compromises.
I would second the suggestion to consider couples counseling especially since there is a community of therapists who are trained to work with couples dealing with chronic illness and its disruptions. Therapy can’t solve your partner’scondition but it might be able to help the two of you find a way to navigate this to help your relationship stay intact but it may also lead the two of you towards other options or resolutions.
I have a sister and friend who have endometriosis, but never knew how it affects them. Shows, we should be kind to everybody, brave we all have struggle. We wish you get to a happy outcome, soon.
I’m sorry you are going through this. However, are you sure endometris is really the cause? A lot of women lose their sex drive after moving in together. This decline sounds pretty typical. Please go spend some time on r/DeadBedrooms for ideas and support from others going through the same thing. Once the passion is dead in a relationship, it won’t get better after marriage and children. What is she doing to raise her libido to improve your sex life? If she didn’t have these symptoms on birth control, why not go back? You are already depressed over this – why would you want to get married and live like this rest of your life? I’m depressed just thinking about suffering through a spouse who maybe would consider sex 5 days out of the month. In a couple of years that will be zero days.
So sorry you all are struggling. Have you all tried anal? Maybe that could be a solution for the intimacy you crave without irritating her endometriosis too much?
Ive been in your situation, attached all specialist appointments and surgeries. Infertility and major surgeries with potential significant complications are possible if its not managed by a doctor properly. The correct pill and anti depressant can control or slow it with minimal mental health side effects, but there’s a lot of trial and error.
On the sexual front if PIV isn’t available and you both want intimacy, then find other methods to get intimacy and sexual satisfaction eg oral, outercourse, hands etc.
There are also options of the relationship opening or including others.
Are you 100% sure it’s the Endo? My only experience with Endometriosis is my girlfriend. She has stage 4 and needs a surgery on her bowels and stuff. But her sex drive is deviant level. Higher than mine and mines really high. The only problem is penetration hurts her, buts it been getting better with these new meds she’s on so maybe penetration is in the cards for us in the near future.
I agree with you, fuck endometriosis. Watching our loved ones in that amount of pain is hard.
Btw r/Endometriosis is helpful and they accept partners of people who have Endo.
This sounds incredibly difficult for both of you. While sex may be off the table, are you both still engaging in non-sexual intimacy? Long hugs, cuddling, physical closeness/proximity, regular date nights, sharing thoughts and feelings on anything that comes up, etc. it’s important to keep investing in the relationship, especially since sex is often treated as a short cut to connecting with your partner.
Best of luck to both of you!
Fuck endometriosis, indeed.
Honestly this entire post could pretty much have been written by me, a couple of years ago. My partner also has bad endo, made considerably more noticeable after she changed her hormonal contraceptives.
Like your partner, there’s quite a small window (or sometimes multiple even smaller windows) each month where she feels comfortable, physically and mentally, to have sex. Outside out that she’s in pain, or bleeding badly, or just generally feeling undesirable.
I’m sorry to say we haven’t found much of a silver bullet either. But I can offer a few bits of advice that you may find helpful.
First, and most importantly, maintain intimacy and physical touch outside of sex. Cuddling, being playful, holding hands, kissing and all of that good stuff can slip away if you’re not careful. We let it slip away and then, when the opportunity did arise to have sex it could be somewhat awkward and not as natural as it used to be… and it was suddenly so obvious that we hadn’t even touched each other for a week!
This leads me on to our secret weapon: massages! I’m quite good with my hands and my girlfriend adores having her back, shoulders, neck and arms massaged. Plus it can’t help mentally and physically when endo is getting her down. Luckily I also love to please! It took us a while to figure out what a win-win massages are, and they’re a great way to spend some time together. Sometimes she finds a way to repay me for the favour too!
Next, try not to feel shame or guilt for your own sexual thoughts. I used to do this too but it’s so counter productive. It makes things worse in so many ways! Look into new ways to please yourself and remind yourself you are a sexual person.
I’m not going to lie, you are right to be concerned about the future of your sex life. But it’s good to be concerned! It shows that you care and are willing to put the effort in and adapt. We’ve learnt to and ours is still alive!
Good luck to both of you! And fuck endo, again.
It’s fucking pain. No words, just hug you man
Please encourage her to find an endo specialist or a minimally invasive GYN surgeon or both. She deserves treatment for her pain and if she just consults a regular doc she’s unlikely to get it any time soon. Cut out the years of inadequate treatments most women receive by going straight to someone with expertise.
Did you or better she ever tried a small dose of viagra? This is no medical advise. Just a gut feeling. I tried to search for it and there seem to be reports and studies going on but all were locked behind a pay wall.
Maybe try to look into that direction and see if there is something to it.
The reason I bring it up is that it increases the blood flow down there. And increased blood flow is usually connected to increased healing. So there might be something to it.
Read the book “The doctor will see you now.” Alllll about endo and what to do to ACTUALLY fix it. I’ve had a few friends follow the advice and now they are endo-free. It’s not quick or easy but the doctor that wrote the book works with these patients everyday.
I’m sorry for your situation.
I have endometriosis and experience something just like your fiancee, so will share a bit of my perspective on this situation.
Endometriosis doesn’t only take down the libido, but also make sex to be very painful sometimes. Not only sex, but on many other times it hurts a lot, a specially on our period. Beside that our emotional becomes a rollercoaster.
About sex I also have zero libido most of the time. During my ovulation period (what I believe might be also the case of your fiancee for what you shared) get a bit horny, yet not even close enough as my partner and it is very frustrating.
As women I feel very down for it and she might as well. It is horrible to feel we are not able to satisfy those we love, specially cause sex is a kind of conection.
I know you already do it, but keep talking and supporting her, she needs it more than ever and your relationship seems to totally worth it!
My suggestions about the endometriosis itself is: seek for an SPECIALIST! Most of doctors have no clue at all of how to actually deal with it and just pass random BC, so finding an adequate doctor is the most important thing.
Endometriosis doesnt have properly a cure, but you can keep it a bit under control. Depending on the stage a surgery may be reccomended, but yet there are the need to always keep an eye on it and try to control it by itself.
3 things that usually work well for me:
1- having an anti-inflammatory diet
Believe it or not, actually helps! Endometriosis also manifestate as an inflamation so having a balanced diet and eating a lot of natural food makes a huge difference. You can also check online if you want more ideas for it.
2- exercising
It can be hard at first due to the pain and also because endometriosis come along with a terrible feeling of fatique, but after a while the exercises help a lot with both of it plus liberate some hormones that increase the libido
3- taking pueraria mirifica
It is natural and helps with the libido and also gives a bit more energy
Anyway, hope you both be ok and be able to pass over it together 🤍
All,
We went thru this for many years. The endo was so bad my fiancé was in bed with pain for 80% of the time. We saw a specialist in Atlanta and he did endo surgery on her. It was the best decision ever. Her recovery was mostly painless. She is back to a fully functional partner now. Our only regret is we didn’t do it sooner.
As a note we tried all other the other treatments. BC, PT, diet, exercise, you name it. Those are just very bad band-aids. Get the surgery done so you can enjoy life.
Though not nearly as extreme, my wife has issues that she tried to keep from me for some time because in her own words, she didn’t want to ruin sex for me. In turn she gutted through it when she felt up to it for me. For some time I held resentment for making that decision without me because it basically made every orgasm I enjoyed seemike a slap in her face and I had no idea. We’ve worked past that and she is honest when it hurts to the point we need to stop but definitely. Fuck Endo!
If she’s not willing to go down on you… it’s time to move on man.
I feel for you. My wife has endometriosis and it is a horrible condition. An early decision is do you want kids? If so a gyno doctor can help (he cleans up) and in pregnancy your symptoms are lessened. Routinely, accept that there will be less sex, so make the most of what you have (there have been some plays, that would not get on social media).
Your fiancée will be feeling it big time. Women are told from a young age that they have to have kids and EM can stop that. So your fiancée probably needs some hugs and kisses and this will likely see the intimacy return.
If you cannot deal with a reduced sex life you need to ask what is more important, with no judgement. Then apply it to your relationship.
I’m so sorry you’re both going through this. Endo is such a difficult disease to live with. I’d recommend you talk about it together. You’re both dealing with losing sex and likely struggling with similar emotions. I have no doubt she feels really guilty for putting you through all this as well. She’s also dealing with the incredible constant pain. Therapy might help as a safe place for you to express your feelings of anger, disappointment, frustration, and everything else.
I’d also recommend she see a dr that specializes in endo. Not just a regular GYN. See one that specializes in Endo. Do a little research online and find one close to you. Ask about Lupron injections. They shut the ovaries down for several months, and without estrogen a lot of the endo can clear up. It’s not a cure but can help keep the growth down. I took them for about 6 months and had few side effects other than hot flashes. Of course when I stopped, after a few months it came back, but maybe having them every few months could help keep it down. She might also consider having a hysterectomy with both ovaries removed. I had mine removed and it was a game changer and life is so so much better. However, I was 44 and had 2 children so having kids wasn’t a concern. Your GF may not be ready to consider that as an option yet. The surgery was worth it for me though.
I’m sorry to hear that. I had endo for almost 30 years. It is a very painful condition. I finally found a gynecological surgeon who did a laparoscopic hysterectomy, which ended my problem. Is your fiancée young? If this isn’t an option for her yet, anti inflammatories and pain killers can help with the pain. And a diet that is lower in sugar and carbs. I hope the best for both of you
Problems of the uterus and its intermittent lining issues and the pain that goes with it are often dismissed. Your partner needs to go to a doctor. Unfortunately, girls are put on birth control once their periods are heavier than normal or they complain of pain.
Work with her, investigate alternative pain management for the endo. Warmth and pelvic massage can help. Also, forms of nutrition, certain foods etc.
Show her love in ways that help with the endo and maybe the pain will not be so front and present, and you can reconnect sexually.
I had horrible endometriosis from age 12 to 35. I finally found a doctor (endometriosis specialist) that would work closely with me and listen to my symptoms. I had endometriosis surgery three times as well. The Doctor restricted ovulation to 4 times a year and kept all my levels balanced, testosterone, progesterone, estrogen and estradiol. There is hope and a solution!!! Look for a specialist, read reviews, email and ask the office about their treatment protocols. I know from personal experience you can restart her sex drive!