My story and main concern (sex pain) - Endometriosis UK

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My story and main concern (sex pain)


I was diagnosed in 2011 with endo and had a lap to burn it off, after a year of barely being able to walk with chronic pain. After the lap I felt good again for a little while but after a couple of months I was back to feeling pain again. I then went back for my follow up and they started me on Amitriptyline that I take daily. I felt this was ok for a while as well but I also started the endo diet so I think that was helping. But again after a while the pain was getting bad again so they offered me the injections or a higher dose of Amitiptyline. I have been trying the higher dose since.

During this time I have been in and out of being with guys but I never carry it on as I have the same results every time... excruciating pain during intercourse which has now made me feel very put off sex. I would really like to be able to meet someone and be happy but its impossible and I personally wouldn't want to put a guy through what I have to deal with daily as I think its unfair! I don't want to have to deal with it, why should they! As I say I am very put off sex now and don't feel sexy at all! I have reached a stage where I am very unhappy with my life with my mood swings and not being able to be close to someone. I have people to talk to but they don't understand so can't help me. It doesn't help that the hospital keeps moving my appointment forward a month (3 times!)

If anyone has any advise for me that would be much appreciated as I don't know if I can carry on like this for much longer its making me very depressed and fed up with life completely! sorry to sound so droning and thanks for taking time to read my story

15 Replies

Please stay strong and fight for your health back...

I know it is rich coming from me as I have a boyfriend, however, what I will say is this; I have only just being diagnosed and met my boyfriend 18 months ago who I now live with. Ive been sick since before I met him and we don't have sex much at all. We make it work as we work. I met a few guys before him but no one I could really talk to or explain how I felt, especially without a reason for why I was the way I was. My boyfriend has been so supportive. Dont get me wrong, we have a lot of challenges but nothing would challenge us. If he is right, it will work and if they don't understand, bin them.

You have to kiss a lot of frogs to find you're prince.

There is hope and I totally understand that no one who truly knows how you are feeling or coping but the right guy just will when it's the right time.

Good luck and please don't give up on your health or you're happiness.


have a read of this website page

as it could be that adhesions are what is causing your vaginal and cervical pain, and while there is no cure for adhesions as such, they can be cut and lasered back but they will in due course grow again. Surgery can make a big difference to the pain level for a while.

Or taking the right relaxant pain killers before the event, so they have had time to get to work before you engage in intimacy. And keep taking them afterwards too till the pain is bareable again or gone. Then there is always the no-sex sex, where you don't engage in the penetrative act but find other imaginative ways to entertain each other as a couple.

As far as having smear tests and so on, when you get an appointment through, ask your GP to refer you to your local hospital gynae department where you can have entonox (gas and air) to get you through the pain of such procedures (along with having pain killers too.)

Depression is understandable and getting that under control really will help you be better able to come to terms with it. Your GP should be able to prescribe a few weeks of anti-depressants to calm you down and help you to chill out and be in a better place to cope in a few weeks time.

It's amazing how much better you can feel in yourself after a course of anti-depressants.

And it is something you can be doing now while you wait for the hosp appointment, which hopefully will lead to surgery and by the time you have recoevered from that you should be feeling so much better.

There are several discussions on painful sex issues on this forum. Just use the search box at the top of the page and type in 'painful sex'.

Most of us on this forum have some discomfort through to raging agony where vagina and cervix are concerned.

Hi, so sorry you are feeling so low. xx

I won't bore you with all my meds, but I did try Amitriptyline for a while but it didn't suit me, or help, so moved onto Tramadol. Did you find it took a while for the dizzy/dozy effect to wear off? Are you ok with it now?

As for being single, but considering a relationship, I know where you are coming from. I have had a few relationships over the years, (I got divorced 17 years ago), and had a satisfactory sex life, just never found "the one". Now I feel like it is even less likely to happen. Apart from the fact that I am almost bed ridden at the moment and heavily medicated, I know that when I am at least a little better, I no longer feel the same about myself and my body. I used to have a very high libido, now it's non existent, and I haven't had sexual relations for over 18 months. The timing is ridiculous, I was diagnosed only recently, but am now feeling a yearning for someone to be beside me, love me, and make me feel special and cared for and to be close to me like only a partner could.

However, like you, I don't even feel good about myself (I haven't had my hair cut since December! ) or attractive and confident enough to meet anyone, let alone fall for them and then have to tell them all about this enigmatic disease that would, with no doubt, affect what should be a happy and healthy sexual relationship. Sex isn't everything, but both men and women have their needs, and for me it is a small part of the recipe for a great relationship.

Who knows what lies ahead for either of us, and we definitely shouldn't write ourselves off yet, but, it is something that's always there at the back of my mind.

Hope you are doing okay and have a pain free weekend as possible (I am curled up, a film, hot water bottle and chocolate) and sending you the strength to get through this xxx

thanks so much a for all your messages! I really do appreciate all your help!

Marblesgone - thanks for your kind words!

Impatient - thank you for your advise and the website, i didnt know about this and will take it to my next hospital appointment! i feel worried about starting anti depressants as i dont want to have to rely on them but i will speak to my doctor this week anyway and will be phoning the hospital about them changing my appointment. i think they have been moving me as i havent been keeping at them to help me, but i will be now i want to lead a healthy happy lifestyle again!

Amb43 - Im sorry to hear that you are bed ridden at the moment and hope you get better very soon! i am fine with the drowsiness now and i found if i take tramidol i cant be driving and i need to drive quite often. I do feel the relationship part is the main thing that i am down about but as its caused by endo i have just had enough. i will try and stay strong

Anti-depressants get a bad rap, for the few cases where peopel react badly to one particular kind, but so many people really do benefit from them, but they don't brag about being on them like they would anti-biotics. Its the stigma of not coping mentally, but it's a very real condition, it is not just in the mind. If you had an infection you'd get help with it, so I now consider deprssion just the same way. An ill head.

there are so many different kinds of them and if one doesn't work try another. The first I tried gave me the runs and chronic wind, but when i switched the next ones did the trick. Made me sleep well (a lot of sleep) which I needed and within a couple of months I suddenly realised how much better I was feeling and realised how ill I had actually become before starting the meds.

Bonus was it was a good diet pill too. I lost 3 stone gently over 6 months and felt flipping marvellous afterwards. I didn't diet at all just slept much more and wasn't snacking.

I haven't needed them since, and that was 13 years ago. I am much more careful about my mental wellbeing since then and avoid stressful situations and stressful people as much as possible.

avmy in reply to Impatient

I didnt think of it like that... makes sense! I will give it a try thank you very much! x

Sorry to hear ur feeling so low and have a tough time. I know exactly how u feel as i cant have sex at all and its bn a long time. I can use tampons but were painful to insert sometimes and examinations where painful so it was easier not to bother with sex. But im now 31 depressed also and struggling with endo and the thot of never having children just because i can have se. I am no in a relationship and scared to get in one because of those issues. Sorry doubt i was much help to u there :( but i hope u know ur not alone and there is lots of us in the same boat. hope u get things sorted tho. xxx

avmy in reply to Sunflower846

Im sorry to hear that. have you tried anything to help you? I understand your pain about getting with some one i honestly wanted to give it all up last night wen i tried with a guy, he was understanding which helped but i want to go back to being happy and being able to like and enjoy sex again! I hope u also get things sorted soon! xx

Sunflower846 in reply to avmy

I went to a sex therapist once but she was an old lady and old fashioned but said to me that my issue was i didnt trust men, i felt such a idiot i left and didnt go back. i was given dilators to help and used them for a while but the endo was on my cervix which didnt help. Im in counselling for lots of issues and hoping i can over come this also. Enjoying sex seems like a long time ago lol. Its a horrid condition that people dont know enough about. xx

avmy in reply to Sunflower846

sure is!! changed my life from being a happy easy going confident person to a depressed anxiety a low confidence person! i really want counselling just to see if it can help me. i hate that doctors just fob u off i respect their job but they have no idea what it does to our lifes!! thanks for sharing with me and i hope that you get everything sorted as i do remember life is worth living just we can easily forget with all this distress! take care xx

Sunflower846 in reply to avmy

Go for counselling if u think it would help but i am hoping it helps me. I am going to get an app with a sex clinic to and see what they say. I want to have sex again but how can i try wthout a man, haha. You take care too and keep me posted of how things are. nice chatting to u xxx

I have been given anti depressants and believe if we need them then we should. It takes alot of guts to admit ur finding things tough and i knew i needed them when i was breaking down at work 3times a day. So avmy speak with ur doctor xx

Hi. There isn't much more I can add that the others have not already said.

I agree with impatient re the depression tablets. I have suffered from depression for many years on and off and for a long time fought off taking anything..but when I finally did it took some time for the effects to kick in as I had left it so long and reached such a low point! I have tried a couple and found Fluoxetine was the best for me. It shouldn't be something to be ashamed of (which having depression makes you feel: ashamed of self, that you are weak, useless etc) and it will help give you some strength in dealing with everything. I am not saying it will make everything seem wonderful and bright but it makes it a lot easier to cope mentally. Sorry I am ranting on now!

I am sorry to hear you suffer with painful intercourse. I too suffer from this. I can understand how it will put you off even looking for a boyfriend let alone making love to a man. Can I say, please do not let it stop you and hide away! If a man cannot be supportive and understanding and accept you for who you are then they are not worth it. I know people say it, but there is some genuine guys out there. When you find the one it is worth it. They will make you feel sexy and wanted. They wont push you for sex and when you do have it they will be gentle and understanding as long as we tell them exactly how it hurts and effects us.Yet again I ramble on sorry! It wont make our worries of how it effecting them disappear, but makes it a little easier. When you do find someone understanding and you manage to start having sex, even if u only feel for it once a month, I would def say try different positions and find the one that causes the least pain for you. I have found this to help a little.

You are being very strong and brave and never forget that, although hard to feel like it when in so much pain and feeling so low. I hope your appointment comes very soon for you. x

Impatient in reply to squidgy

it was fluoxetine that worked for me too.

citalopram was the one that didn't suit me due to really upset bowel and chronic wind, that was my 1st one, but as I said lots to try if one doesn't suit, then speak to your GP about trying a different one.

My mum has used citalopram, and no problems with it.

We both got better.

ky gell

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