Endometriosis UK
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Feeling down / endo causing issues in the bedroom

I don’t know where to start with writing this. I just feel really down and snappy all of the time.

I’ve been with my partner 8 years and we have a beautiful little boy. I just can’t have sex with him! We haven’t had sex since December. I can’t go through the pain and I bleed during/after sex and end up in pain for days after. My partner was understanding but now he’s starting to make me feel guilty a little. He thinks I don’t love him anymore and feels I don’t find him attractive. Obviously I reassure him but sometimes I wonder if that’s enough.

I refuse to put myself in a situation where I feel uncomfortable and having sex is one of them. I was really embarrassed to tell him that sex really hurt so I used to make excuses or avoid him when it came to bed time. Then I started to feel guilty and so I would have sex and if the pain was so bad then I’d stop but it’s not really not fun. It’s actually my idea of hell. I went to my GP and explained everything to him and he referred me for scans and to see gynae and it was discovered I have endometriosis. I have been referred to a specialist now and not seeing her until June. I’ve been told to prepare myself for a laparoscopy so maybe after then, I can have sex.

I just feel that right now, not having sex with my partner is causing issues. We’re both snappy at each other and it’s become the norm. I don’t even want kisses and cuddles because I don’t want him to think I’m ‘up for it’. I’m a paranoid mess 🙈 no wonder he thinks I don’t love him. I’ve tried explaining everything to him and he says he understands but then he constantly brings it up so clearly he doesn’t understand 🙄

Please tell me I’m not alone 😩

I feel really down constantly and it’s a horrible feeling. Not sure what it is that’s making me feel down. I just assume it’s a bit of everything.

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Hey, I struggle to have sex and haven’t had it since last March when I was with my ex. He didn’t understand my situation and forced me to do things a lot. Sex is so painful and I get cramps for a few days after.

I have a new bf but I’m scared to tell him sex hurts but he is a bit more understanding. It’s long distance and he tells me he can’t wait till we can do stuff haha. So frustrating!

Your partner shouldn’t be making you feel bad as we can’t control endo and the pain. Show him articles and information about endo and how can affect sex etc. That might get him to understand a bit better.

Try and show affection in different ways and try and cuddle before going go sleep and tell him you love him etc, if he gets the wrong message, just say you’re tired.

Have you tried pelvic exercises or seen a psychosexual therapist? They help you to find causes of the pain or could suggest a useful way to make it stop.

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Thank you for messaging back. It’s painful isn’t it. I always feel emotional after and end up regretting it and it makes me feel really down. I don’t even have a sex drive anymore.

It’s weird because my partner is so caring. He worries about me constantly and checks that I am ok all the time. I was initially embarrassed to tell him it hurt because I didn’t want him to think it was him hurting me if that makes sense. When I started bleeding, he was concerned and understood, took a step back and didn’t mention sex or anything for a good few weeks. I think it’s worn off now and he’s getting sexually frustrates so is just trying his luck I guess. I was up for trying to have sex again last month but when I was my gynaecologist, she examined me and the pain was so bad, I cried for hours and I am usually really good with pain. I’d much rather give birth every day for 5 years than go through that pain again!

I don’t think he makes me feel bad intentionally and he says it’s fine when I say I don’t want to have sex but then we are always snappy at each other and I just feel at times we are losing each other a little bit.

I just don’t like being touched or cuddled at the moment. It’s strange because my son is very cuddly and I don’t mind cuddling him but if my partner cuddles me, it irritates me. I just feel like saying “give me some space” but I don’t know if maybe that’s because I’m a little paranoid he’s going to try it on with me. We often go to bed at different times now but if/when we do go to bed at the same time, we do cuddle or something.

I haven’t seen a psychosexual therapist. I don’t even want sex.

Sometimes it feels like someone has a pair of tweezers and are plucking away in my vagina and cervix 😩 it feels horrible.

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Hi Flossy13,

I am sorry to hear you are suffering.

You might find our endometriosis and couples video helpful to watch: endometriosis-uk.org/endome...

To prepare for your upcoming appointment you might find our getting diagnosed information pack useful as well as our treatment pack so you know what options there are when you discuss with your consultant.

endometriosis-uk.org/gettin...

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

You are not alone in this and if you ever need to talk in addition to the forum we also have support groups and a helpline: endometriosis-uk.org/get-su...

Best Wishes,

M Mary

Volunteer Moderator

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Thank you!

I have filled in that form previously and took it along with me with I saw GP and Gynae.

I will give the video a go, thank you very much. You have been very helpful. I really appreciate it.

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Hi Flossy13, You are not alone. I have also been with my partner 8 years, however we have not had sex for 7 of those – How he is still with me, I’ll never know?!

I had a deep internal pain when it first started, and would be cramping for days after – I later found out that I have endo on my bladder, behind my ovaries, and on my pouch of Douglas – Because that wasn’t enough, I’ve also got vaginismus and nerve pain.

Not surprising I lost my sex drive completely and would avoid it at all costs. Like you, I didn’t even want to kiss and cuddle in case I lead him on. My partner can be understanding, but it has taken a long time for him to accept our situation, and he still has bad days where he feels incredibly rejected.

My advice is to deal with it as soon as you can – The longer you leave it, the greater the toll on your mental health and relationship.

Don’t shut your boyfriend out, educate him, and understand that some days he will find it harder than others. Be intimate in other ways, make time for each other, but make sure he understands that sex is off the table for now, and don’t let him guilt you into it sooner than you are ready. It will only set you back.

Like others have said, talk to your GP about seeing a sex therapist – I found it very helpful to have somewhere I could go to talk and have a cry, and be told I’m not alone or broken. It’s mentally draining being in this situation, and you have to look after yourself too.

It’s frustrating that you have to wait until June to see a specialist for your endo, but it’s definitely a step in the right direction!

Try to keep positive in the meantime.

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Hello 🙂 wow, what is a long time! I’m pleased you have found someone who is understanding and loves you for who you are.

It’s difficult isn’t it. The guilt you feel and you don’t want to hurt them mentally or anything. We didn’t rush into a sexual relationship when we first got together. We waited nearly a year and have never really been sex mad to be honest. When we were trying to conceive, we were sex mad but other than that, it’s been sort of as and when (hardly ever). We spend a lot of time together as a family and then when our son goes to bed, we always make sure we spend a good couple of hours together.

He made comments like “I understand you don’t want to have sex, which is fine, but there is other stuff we can do... well, you can do” which I actually found a little hurtful. I know he is frustrated but it isn’t the fact I don’t want to have sex, I can’t. My body will not allow me to. 1) because it hurts and is the worst pain I’ve ever experienced 2) my body/mind isn’t up to do anything. Which is why I think he feels I’m not attracted to him. It sounds like I’m making excuses, but I’m not. I really want another baby so badly but I know right now I can’t. We’ve had unprotected sex for 4 years and have not been successful in conceiving and now I’m not even sexually active so there is zero chance of getting pregnant now. It’s just mentally draining and getting me down.

I don’t want to blame it all on endometriosis, I admit there are other issues, present and past so it’s probably a whole mixture of everything. I just feel really lonely at times and want to put the blame on one thing and tackle it but it’s not that easy.

I’ve tried counselling before and hated it. I assume the sex therapist would be similar. I really struggle speaking out loud to someone about myself. I find it easy typing it. But when it comes to actually talking about my issues and my life face to face, I crumble. It’s the worst feeling and I don’t want to walk away feeling worse than I did when I walked in, if that makes sense. I am not intending to have any sexual intercourse until after I’ve seen the specialist anyway. The letter my gynae consultant wrote to the specialist states about discussing a laparoscopy but I think I’ll be having LLETZ to. I’m not sure I ever want to have sex again after that! 😳

I’ll try and keep positive. I am quite new to all of this (this forum included) and it’s so lovely that strangers can be so supportive. Just a shame some of us have to go to strangers for support and advice.

I appreciate you taking the time to respond and I honestly wish you all the very best. Sounds like you’re having a tough time of it all too. I hope you’re getting the help and support needed. Thank you again!

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You are definitely not alone! I feel I could of written this myself. I am too waiting on my laparoscopy which looks like it will be may/June time. Unfortunately my husband thinks my pain is only related to my period and doesn’t realise how much it’s Mentally affecting me 🙄

I have no advice because I don’t know what to do myself but wanted to let you know I understand x

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I think it’s really difficult for men to understand. It makes your whole body just feel ‘ugh’ 😩

Wishing you all the best. Feel free to message me if you fancy a rant or want to unload some emotion etc... or fancy a chit chat.

Thank you for messaging 🙂

So good to know I’m not alone.

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Yeah I know. Mine just doesn’t get it and doesn’t understand the fear of ‘what if I end up in pain again when I am having a good day’!

Yeah that would be good. I don’t know anyone else that has Endo so no one actually understands me I feel 🤷🏼‍♀️

Can you message on here? This is the first time I have replied to someone because it was just too alike my situation not too lol x

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I totally get you. It’s not worth the risk. I won’t put myself through that much pain for someone else’s pleasure/satisfaction.

I’ve sent you a message. I didn’t realise it was there until yesterday.

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