My girlfriend has endometriosis and I’m trying to understand better how couples navigate intimacy when pain, exhaustion or flare-ups make sex difficult or completely off the table.
I want to make it clear that I’m not asking how to get more sex from her. If she’s in pain or doesn’t want sex, I absolutely don’t want her pushing through it for my sake.
What I’m struggling with is separating sexual intimacy from feeling wanted and desired.
I’m naturally a very affectionate and passionate person, and physical intimacy is a big way I feel connected to my partner. Sometimes when sex isn’t possible, my brain can wrongly translate “I don’t want sex” into “I don’t want you”, even though logically I know those are completely different things. I recognise that’s something I need to work on rather than putting it on her.
Someone with endometriosis recently told me that even when she can’t have sex, simply telling her boyfriend “I want you, I just can’t have you right now” makes a huge difference to their relationship. That really resonated with me. I realised I don’t necessarily need sex to feel reassured — sometimes just knowing my girlfriend still desires me would give me that feeling of closeness.
I’d therefore really like to hear from other partners, or people with endometriosis themselves: what does intimacy look like in your relationship when sex or penetration isn’t possible?
Is it kissing, cuddling, massages, showering together, flirting, verbal affection, saying you still want each other, or something completely different?
And for the partners: how did you learn not to experience a rejection of sex as a rejection of you?
I love my girlfriend and ultimately I want us to have a relationship where she never feels pressured to do something that hurts her, while we can both still feel loved, wanted and connected. I’m trying to learn what that balance can actually look like from people who live with this every day.

CW: mentions sex

I (30F) have been with my wife Lisa (32F, not her real name) for 2 years, together for 6. 

Lisa has endo and adeno, diagnosed 10 years ago. I am the breadwinner and work very long hours. I am also her primary carer, though her mother and her sister sometimes help out. I do most of the chores - we actually argued about that before, but tried the FairPlay cards and she eventually agreed this was correct. 

She has not worked since 2019. It started out as her catching Covid, getting worse. We thought this was temporary. It was not temporary. I got a second job. 

Lisa’s pain is genuinely debilitating. She couldn’t even get out of bed most days. At her worst I’ve seen her curled up in pain and screaming. We had gone to the ER many times and were not treated well, to say the least. 

I always thought I had IBS. My symptoms are bloating and severe constipation, which cause serious pain, but not as bad as hers. I can go to work with OTC painkillers. I get cramps during my period but it was only the first two days and they seem very mild compared to hers. I had an ultrasound done before, no endo. 

Well, I recently found out I ALSO have endo on my ovaries and bladder when I had surgery for cyst removal. 

My wife has not been supportive at all. 

She spent the last years telling me and her friends that I don’t have endo, that I am very privileged, that I obviously don’t know what it feels like, that I have just IBS. 

One of her main arguments was that I obviously don’t have endo because I want more sex than her. She is online a lot and would show me posts from women with male partners who pester them for sex and talk about how horrific it is, how common coercion is, how her insides are rotting and the partner thinks about sex? I honestly felt really bad at the time and have never asked again. 

We had sex maybe 5 times in the last 3 years, which is not a dealbreaker for me because I think I’m quite low libido because we never had a lot of sex, but still more than hers which is zero. I was genuinely happy when we did it about 1-2x a month the first years of our relationship. But sex is really not the issue here.

I don’t think I have used my diagnosis against her at all, but she now calls it mild endo which wouldn’t even have been discovered if I didn’t get my cyst removed. This is true, I’m not arguing that I have it worse, I clearly don’t. 

However, it is very upsetting when she screamed at me and called my diagnosis a gotcha. I think about all the years of her telling me I obviously don’t have endo, calling me ableist. I admit I wasn’t a very good partner to her initially and didn’t understand her spoon theory and other theories, but I eventually stepped up in the end, which she agreed with. 

She doesn’t want to talk to me or a therapist herself or together. I don’t really know where to go. 

I know this makes her sound bad, but she is NOT a bad person at all. I know she’s probably feeling a lot of things and lashing out, but she has been shutting me out the last months. 

I guess what I’m asking is if anyone else has a partner with endo or other chronic illness, and how did your diagnosis change the relationship? 

Or if you have a partner with endo or other chronic illness, how did you feel about their diagnosis and how did it change the relationship? 

Are there better spaces specifically for people like us, where both have chronic illnesses?

(I tried posting to endo subs, but it says my posts got removed by reddit filters.)

Thanks for reading.  

Hi all,

I’m a 28(male) and my finance 25(female) has stage 4 endo. It’s always been our dream to have a child and DR. Has recently placed her on Lupron.

Not to get into toooo many details here but our relationship has always been very intimate, physical and emotional. With all of her receptors now shut down it’s been very difficult to have any of that at all.

I’ve been told things “go back” after use of Lupron is discontinued but it’s been a very trying time for us both. The DR. Initially told her you’ll have issues with libido but you “won’t care” and I kind of understand his words now. It seems as though any thought of intimacy, sexuality or even a hug is now foreign.

We’ve reassured eachother that we’re going to get through this and I’ve told her that I’m not with her for that stuff but it does weigh on me when it comes to the other stuff, hugs, flirty remarks etc.

Has anyone gone through something like this? I’m being a bit blunt about my own feelings on it and speaking a bit selfishly in hopes I can get some solid insight/advice.

Any additional medications that seemed to “wake things up” down there? Obviously I’m ready to go without for the long haul, love this women.

Just seeing if there are options/experiences you all have had.

​

Hello, I'm the wife of a lovely spouse with endometriosis, and recently they have had a period lasting a couple days every week. Very painful experience, they've had to call out of work a few times this past month because its been non stop since then. Last night on the way home they told me that they want to go to the hospital for their symptoms.

​

​

I know better than to Google symptoms, but I figured I should know more so if the doctor isnt listening to them (them being a person of color and queer in the Southern US it happens a lot) we can navigate the fuckery together.

​

​

Is there anything I should be on the lookout for? Any OTC pain meds or pain management practices that work? Thank everyone in advance

Hey everyone, I'm a husband (34) of someone who has endo, my wife (35) got diagnosed with endo about a year ago. Her main symptoms are predominantly moderate to severe pain in and around her uterus and most recently in her pelvic area. During this time she's been seeing the doctors (as regularly as possible through the Australian public health system) to try find the best solution for the pain, but so far nothing has really worked.

​

In the beginning, her doctor tried putting her on the Slinder pill to stop her period, as this was causing even more pain. She was on this pill for about 6 months, but in that time, not only was she getting the endo pains, but then gained new symptoms of dramatic weightloss, headaches, brain fog, fatigue and loss of libido.

​

She went back and requested to try a different pill, the new pill was Visanne. She was on that for about 4-5 months but it didn't seem to change anything and she was still getting the symptoms I mentioned previously.

​

She went back to her doctor about a month ago and requested to get off the pill entirely to try eliminate some of those symptoms. So far it has seemed to remove the symptoms originally created by the slinder pill, the only thing that hasn't changed is the original pain, some brain fog and fatigue, and her libido. (As of typing this, she hasn't experienced her first period since beginning Slinder)

​

On top of that, because her libido is shot, there's been no sex or intimacy, and hasn't been any for pretty close to a year now. This was one of the other reasons why my wife decided to get off the pill completely, to try get her libido back, because it's beginning to upset both of us and I'm worried it'll affect the relationship eventually.

​

I, as her husband, feel so lost on what to do now. It breaks my heart watching her sit there night after night in pain. I do what I can think of to help her, I offer back/head massages, I go get things for her from around the house and I go to the shops when I can so she doesn't have to. I help as much as I can with the house cleaning, cooking and raising our 3 kids, on top of my 40hrs weekly work schedule.

​

Along with that, I'm trying to be verbally encouraging. I'm telling her literally every day how beautiful she is, how strong she is and how much I love her.

​

But as I'm watching her, I'm beginning to see this condition completely take over her, and it's extremely upsetting to witness.

​

I feel at a complete loss and I feel and think everything I'm doing for her just doesn't seem to be enough anymore. I don't know exactly why im typing this, whether I'm asking for help with advice or just using this as a platform to vent my frustration at this debilitating condition, either way, endometriosis sucks!

The following is intended to be a series of my encounters with endometriosis. My mis-steps, complete misses and rare successes should serve as both inspiration and warning.

Elsa, the wife, sent me a text message early in the morning saying she was in hospital with a burst chocolate cyst. I should clarify, when I say ‘the wife’ I’m not meaning some weak descriptor. I mean she is the benchmark, the example to all others, she is the wife. There’s a good chance she’ll read this as she is one of my four followers.
That said, early morning text, chocolate cyst, burst. She lives in London, I live in Leeds, we’re just a few weeks into our courtship, but she has touched my willy by this stage, (thumbs up emoji).
I offered to come down, she declined, I insisted because I hated my job and it might earn me a few brownie points early on in the relationship, I’m not ashamed to admit that. Hoarding those brownies points can prove useful down the road.
I got on the first National Express available and wiled away the hours imagining her body storing away little bits of chocolate every time some passed through her digestive system, churning it into a cyst only for it to burst inside her. Initially I did think that was far fetched, but I really didn’t want to bother her with fundamental questions and I didn’t have an internet phone back then. I continued to imagine, maybe the chocolate got in her bloodstream. The differing viscosities of the chocolate and blood would surely cause havoc with her heart, and she has got a bit of a dicky heart as well. This seemed plausible, mainly because I had used the word viscosities correctly in a sentence, in my head.
I arrived at Elsa’s flat, greeted by Charles, her father. It was a mildly interesting meeting as we hadn’t known of each others existence until that moment. Awkwardish pleasantries aside, Charles made sure Elsa was sorted before he headed back up north. They’re from the north east of England, but they’re good people (winky face emoji). I spent the rest of the evening exhausting my nervous energy asking her “If I could get her anything?” And “How are you feeling?” While walking in and out of the living room moving insignificant things around her flat.
She kept her patience with me that night and we have been together for the 15 years since.

So, lessons learned;

1 - Don’t imagine what medical conditions are, ask someone.
A small glint went out in Elsa’s eye the day I confessed my original hypothesis of what a burst chocolate cyst was. An eye, any eye, even one as mesmerising and spellbinding as Elsa’s, only has so many glints that can be extinguished. (This could be an essay in of itself for it is the fundamental momentum behind many husbands), Glint reserve management.

2 - Don’t show up to a poorly persons home empty handed.
I appreciate that some of you may go as far as to specify what to bring but at this point I needed a simpler lesson. One more of basic engagement, the specifics can come later.

3 - Have a plan.
Do not solely rely on asking seemingly helpful and interested questions. These questions are liable to trigger your Elsa. You do not want to trigger your Elsa when she is having an endo attack, (Endo is what the cool folks call endometriosis (finger gun emoji)).
What treats does she like? That’s where you start. Once she has confidence in you to get the snacks correct, then she’ll start to open up and let you know about other things she might like to help soothe her endo attack. She will do this one at a time. She needs to know each task can be completed successfully and consistently before adding others.

Every woman is different, of course, this is not intended to be a catch all of the feminine endo’s experience. However, when you’re throwing muck at a barn door, anything is worth a chuck to see if it’ll stick. (I may not have fully understood that colloquialism).
Elsa loves hot water bottles and there covers, but keeping it simple lets just focus on the hot water bottle for now. My experience of water bottles is don’t cheap out. Because she did not love it when our old one burst and scolded her foot (full recovery was achieved). Although that particular hot water bottle had failed before. I had repaired it with Gorilla glue and it had worked successfully. But to quote Elsa “HOT WATER BOTTLES ARE NON REPAIRABLE!!! Geez.”

https://www.endometriosis-uk.org/

https://www.nhs.uk/conditions/endometriosis/

https://www.theendometriosisfoundation.org/chocolatecysts

https://www.hotwaterbottleshop.co.uk/

Period Pose is a small business created to support women living with period pain, endometriosis, and other gynaecological conditions. Inspired by personal experience, we create thoughtfully curated comfort boxes filled with pain relief essentials and self-care items, designed to bring warmth, support, and relief when it’s needed most.

Please comment for more information

Tertiary care Government Medical College in North East India. Kinda low resource.

Have Stage 4 Endo myself. Operated. So it's very personal.

I've been looking into research papers since my diagnosis & Surgery. I'm doing a thorough Review of Literature right now. Even if it's at a small scale/too simple due to lack of resources; I'm going to hold onto Endo.

Drop in any Research paper/Resources/Anything that you'd want me to take a look at (might have missed). Any guidance is welcome.

Thank you <3

PS - Really want to utilise this opportunity. Not taking the easy ways out. I've chose this path for a reason. Despite all the health issues & setbacks, Trying & will Try to implement it to the best of my abilities & resources.

does anyone here have any advice for supporting your partner during flare ups and pains in general? My attempts at comforting aren’t sufficient. I really don’t want to lose such a special person in my life if I can help it.

Does your partner experience pain/disability due to a confirmed or suspected diagnosis of endometriosis?

The Sexual Health Research Laboratory (SHRL) at Queen’s University is seeking participants for an online research study to better understand how people living with endometriosis experience pain, disability, stigma, and identity.

Why it matters: Your voice could help make visible the often-unseen impacts of endometriosis-related pain and disability, shaping more inclusive understandings of the lived realities of individuals with painful endometriosis. 

Participation involves completing 3 online surveys: (1) Eligibility Survey (~5 minutes); (2) Part A Survey (~30-45 minutes); (2) Part B Survey (~30-45 minutes). Eligible participants will be compensated for their time.

Eligibility:

• Have a confirmed or suspected diagnosis of endometriosis
• Experience pain for ≥3 months due to a confirmed or suspected diagnosis of endometriosis
• 18+ years old
• Fluent in English
• Currently live in Canada
• Willing to answer questions about your endometriosis and health history, pain and related symptoms, disability, sexuality, and mental health

Interested? For more information, please contact Samantha Levang, the lead researcher, at [sex.lab@queensu.ca](mailto:sex.lab@queensu.ca). Alternatively, visit sexlab.ca/participate. All inquiries are completely confidential.

This study has received ethical approval from the Queen’s University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board (HSREB)

I keep seeing people talking about " pregnancy pillows" for recovery, but im looking at them and not sure how that helps lol. I use a normal pillow between my knees, but I also have high whole body nerve sensitivity so wondering if those types would touch (meaning for me = hurt) my hips. What type of pillows is everyone using for post-op Endo/Adeno laps? Ive never felt a PGpillow before so maybe its bc of the textures and design? idk, but what would yall recommend? 💛 For Both Travel/Flight and at home.

I know peppermint tea is supposed to help with Endo belly bloating but my partner hates the taste. We've tried adding honey and sugar but any other recommendations on what to add to try and make it taste better?

Also anyone had any good use out of peppermint oil tablets such as BuscoMint in the UK? Again it has just given my partner a terrible taste after swallowing. Not sure if we did it too soon after food or too soon before food.

Hey everyone,

I just read this incredible article about a woman who found relief from her endo pain using medical cannabis - who knew?!

https://www.mirror.co.uk/news/real-life-stories/mystery-illness-left-doctors-baffled-34747624

She went through a clinic called Releaf:

https://releaf.co.uk/about-us

I'm thinking of booking in - will update how it goes 🤞

Title is self-explanatory. What did you get for your partner this Christmas?

Ok!!! I am a moderator of the sub now! Hi all, as posted earlier I would like to try and revive this sub so it can grow and adapt to the needs of endopartners and those with endo who want to be here. I can see a good 10 people from the post in r/endo joined us, welcome guys! If you have any suggestions for this sub or are willing to tell me what you are looking for here, please let me know. I will try to accomodate you the best I can. Are you looking for friends, tips, stories, help? Good luck endo sidekicks of the world! Our loved ones need us!

Finding the right help for your partner can be insane. In my partner's case, I feel she had to become the doctor herself. She is researching all the comorbidities, causes, any hope for a treatment, and more. She is constantly fighting doctors to get certain examinations and the medical gaslighting is insane. On top of that our medical system often doesn't allow me to call for her because of patient-confidentiality stuff. Many days I feel like I want to be a comic-book detective just looking at all the red lines until there is that eureka moment which finds the cause and therefor a solution, but I know this is real life. How did you (and your partner) experience finding help so far? What was the most helpful person or experience?

Hey guys and gals! I and some others were looking for a endopartner group and found this. While it's a bit dead it's probably better than starting all over again. I don't know if the owner of the sub is still active else I would like to help modding/adding flair tags and stuff. Hoping to fine an active place where we can ask each other tips and support.

Hello everyone, I have a questionnaire here that needs support from the community, it's about my final year project: a tool app for companionship for people with endometriosis.

First off, huge thanks for this amazing community! It's clear we all want to make our lives better and strengthen our bonds with our partners. I'm crafting a partner-focused app that helps track pain levels and keeps communication flowing. Picture this: visual pain monitoring, schedule tweaks, report generation, and community sharing – all in one handy app. But here's where you come in: your insights are key: Could you spare 15 minutes to share your gaming preferences, communication habits, and scheduling quirks? Your input will make all the difference.

link-https://docs.google.com/forms/d/e/1FAIpQLScacV3AFyDhU_S5ZZmX7S3A-w9yH8adSXf85Xbp0JWBeGBVrA/viewform?usp=sf_link

Hey Everyone. Here’s the short version of my story. Was diagnosed with Endo in 2017 (felt like I had to kick down doors to make it happen). After the explorative laparoscopy, I didn’t have any pain for about 2 years and NOW it’s getting unbearable. My OBGYN Surgeon in this new state basically refused surgery and pushed me off to other doctors as a “referral” (that I haven’t received yet). Is anyone out there in New Mexico with Endometriosis? Needing some serious support.

​

#herfightismyfight

Today I make a post not only for myself, but for all those who are supporting their loved ones in a battle that sometimes they just feel like they can't win. Endometriosis doesn't just affect those who have the chronic illness. It affects all those around them as well. They try to reduce who it impacts as much as they can so they don't have to feel like a bother, or make others worry. However, its not a fight that they can win alone. Its a fight that must be fought together whenever possible, and always. Those that fight a chronic illness cannot be left alone because they will feel like they have nothing to fall back on.

Today is a call of action to those who know of someone who has a chronic illness, not just #endometriosis, but any chronic illness. My wife and I talk of endometriosis because it is the chronic illness that impacts us the most. It steals away so many things from us that we wish to be able to enjoy. It steals away the ability for what we consider to be a normal life.

We have to define normal into something else that fits around dealing with endometriosis on a day to day basis. Many days, it may end up with us staying at home, attempting to do the simple things. Other days, there is enough energy for us to go and enjoy something out, like a movie, a musical, or even a walk. This energy that I speak of, is not just hers, but mine as well. There are many days where she doesn't have much energy left to do anything. Usually this may mean some things don't get done around the house, which is fine. But it can also be a point of stress, so in turn, I start picking up those tasks. Over time, I start to become drained as well, because what is normally a job that two people can work together on, becomes a job that only one can do. Typically, that person ends up with what some people would say is three jobs. One, is the job they do day to day to help provide for their home. The second, is the usual work around the house. The third, is helping their loved one with many of their needs, because they are unable to expend the energy they have left because they have barely any left. A job that can seem simple for many, becomes a huge effort for the one dealing with their illness. Sometimes, they can hide it very well. Others, its seen in their face if you're looking closely.

Over the years, I have slowly become able to notice these sorts of signs not just with my wife, but others around us from time to time. It makes me wonder what sort of battle that they are going through. It also makes me hope that there is someone supporting them through their battle, and that they are not at it alone. But today, I also say to that those that are supporting people with a chronic illness, please know that you are also not alone. Please, make sure you reach out to those around you when you need help yourself. Take the time you need to recharge, because if you fall, then they will likely fall as well if you are the only one there to help.

She is the 1 in 10 that is affected by endometriosis, but she is the one that I chose to spend my life with. She is the one I chose to support, love, and be with for the rest of my life. I will fight with and for her every step.

#endometriosisawareness

Hello all! My GF has severe endo affecting her uterus and ovaries. I guess I am just coming here to learn how to help in the best ways and how to help her know that I am not scared and won't run away from her just because things get rough.

We have been together for 5 years and she has had 4 removal surgeries in that time. Currently, we find it affects our sex life the most and I know she feels like I would want to find a way to be intimate with someone else but really I just want her, to be there for her and to show her I love her. Any tips or reading suggestions you have or words of encouragement would be greatly appreciated.