Pain during sex

Help! I'm constantly scared to kiss or be near my partner incase it leads to sex which is painful! It never used to be like this our sex life was great now it's non existant I'm only 23 been with my partner 3 years and live together got diagnosed 6 months ago endo is covering my bowel, uterus is attached to my bowel and my left overy attached to my uterus. I'm on the pill constantly no break my other only option is major surgery to detach my bowel from my uterus but I will end up with a stoma bag. I also suffer with water infections. I feel awful on my boyfriend I can't give him what he wants were only young and I feel like it's pushing us away I'm scared to be affectionate incase it leads to sex and hurts or I just point blank refuse and we end up rowing over it. He knows what's going on he knows when I'm having a bad day and I'm in pain and exhausted from either the endo or my pain killers making me tired etc but it's ruining our relationship I'm either grumpy, tired or in pain and take it out on him and he's frustrated and fed up help!!

31 Replies

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  • Am so sorry your going though this at such a young age....I also feel a lot of pain after sex from adhesions..now I have no relationship because of it.. I know it's very frustrating...try to see a herbalist to see if there are herbs that can help...actually that's what I did and it alleviate some of mybpains.

  • where do you find a hebalist? x

  • Hi I'm sorry to hear your story and how tough it is for you.

    My first symptom was painful sex which lead to a diagnosis last year. Mine isn't as severe in terms of area affected but my pain is severe and I have tried different medications to help.

    I got to the point where it was so painful to have sex I lost interest completely and we didn't have any for well over a year, my libido just vanished! The treatment I found that helped was seeing a hypnotherapist. Its not about hypnotizing necessarily, it was just relaxation techniques and changing my thought process to sex. I really didn't think it would help at all but after 3 sessions she gave me a recording of our last session, which I listened to every other day. I was able to have sex again with my partner and I couldn't believe it! The pain is still there to some extent during sex but not as bad as I thought or remembered it being especially after treatment to help relieve pain.

    Its not for everyone and you may not like it but it worked for me! Most therapist give a free consultation as well.

    Good luck and hope you can be sorted soon

  • vix04, where did you find your therapist? Which part of the country is the therapist?

    I might try this!

    x

  • I'm in Kent but I'm sure they're all over the country. I just looked for sex therapists and hypnotherapists on the internet hun. As people have said below this disease can affect you mentally as well as physically. The therapy helped me get back into wanting sex so now we can work through the pain whilst doing it! Hope you find help soon. P.s I saw your comment about your talk with your partner and that he said he just felt unwanted, my partner said the same to me! Its good you've talked about it, that will really help things

  • I know what ur feeling as in same ive been reduced to tears but I try prepare myself for it all and try to grin and bear it it's hard so does not happen much in our household at the min, sending big hugs your way xx

  • Have you seen a endo specialist to see if excision is an option ? xx

  • i haven't seen a specialist just my gynae who did my lap x

  • Hey Hun, so sorry to hear you're having a crap time! I am going thru the same right now I am waiting for major surgery right now and been told the amount of pain killers I'm on can make stop breathing at any time... I'm only 24 and I'm married having the same problems in my relationship as u. Hope you get some relief soon xxx

  • hey babe, i hope your surgery goes okay... what are you having done if you don't mind me asking? i try not to take my pain killers because they make me so drousy and i can't afford to have anymore time off work. i hope your relationship works out! it so stressful and upsetting xx

  • Hey lovely, thank you. I am having my endo removed and my bowel and everything else that is stuck together separated, I had this done in 2010 but back then they told me I didn't have endo only recently been diagnosed in June. I am the same I don't like taking my pain killers but If I don't I can barely walk! And I agree it is so stressful and upsetting I am now under a psychiatrist as it has had such an impact on my life xxx

  • Oh good luck!! I hope it goes okay! I was diagnosed in September constantly got fobbed off saying it's my age that's why I'm in pain. Ye same I just become this zombie and litterly cannot function but sometime I have no choice. I feel like because no one really understands when u tell them your having a bad day from pain or exhaustion they think your being over the top and then part of me feels like I'm going mad and really isolated I hope you feel better Hun xxx

  • Yes I got told it was just IBS for so many years! And I agree because most people are unaware it exists and there's no awareness about it no one understand at all! I feel the same like I am just over exaggerating things and it just doesn't help it's hard enough! Hope you get some help soon lovely xxx

  • You poor thing, I do understand what a nightmare it is. I haven't had penetrative sex for over a year. I too am worried about the effect that no sex would have on my partner. I want you to know all is not lost! There are many different ways of having sex that do not involve penetration. It can be really fun exploring each other's bodies as long as you both agree to no penetration. It can be hard to keep the intimacy but do try to kiss and hug your man but tell him in no uncertain terms you will not be penetrated. Also you could ask for a referral to a sexual councellor. I thought it would be awful but they are amazing. They don't just talk to you they can give you help like dialators and stretchers because your tensing up whenever he comes near you. I want you to know you can have a healthy relationship with evil endo. You just need to communicate with each other. My boyfriend married me on February last year even though we can't have penetrative sex and I've suffered with endo and adhesions for 5 years. Keep your chin up, see a councellor and play around with different types of sex that don't involve penetration. Good luck lovely xxx

  • hey, your comment really touched me, i got myself all upset last night and i we chatted about it all and he was really supported and said i need to calm down and relax not every time we kiss doesn't means he wants more, he just sometimes gets frustrated and unwanted when i don't go near him like i used to. congratulation on your wedding :) thank you xx

  • You poor thing, I do understand what a nightmare it is. I haven't had penetrative sex for over a year. I too am worried about the effect that no sex would have on my partner. I want you to know all is not lost! There are many different ways of having sex that do not involve penetration. It can be really fun exploring each other's bodies as long as you both agree to no penetration. It can be hard to keep the intimacy but do try to kiss and hug your man but tell him in no uncertain terms you will not be penetrated. Also you could ask for a referral to a sexual councellor. I thought it would be awful but they are amazing. They don't just talk to you they can give you help like dialators and stretchers because your tensing up whenever he comes near you. I want you to know you can have a healthy relationship with evil endo. You just need to communicate with each other. My boyfriend married me on February last year even though we can't have penetrative sex and I've suffered with endo and adhesions for 5 years. Keep your chin up, see a councellor and play around with different types of sex that don't involve penetration. Good luck lovely xxx

  • Sorry to hear your in so much pain. Perhaps sit down and talk properly about it and come to a compromise? There's lots of things u can both do to each other without penetration. He needs to meet u half way. Thoughts with u xx hateful disease!

  • Sorry to hear your in so much pain. Perhaps sit down and talk properly about it and come to a compromise? There's lots of things u can both do to each other without penetration. He needs to meet u half way. Thoughts with u xx hateful disease!

  • Hi there, that all sounds very distressing. I too have my uterus stuck to my bowel and have not long had a second lap to remove my left ovary and have a Mirena fitted, but have been told that I may need a bigger op further down the line as you describe.

    Can I ask what kind of pain you have during sex? I have suffered with painful sex. I had real issues relaxing with my last partner so he had to do things to almost distract me while he penetrated me, on my request that is because I didn't understand what was wrong with me at the time as this was before I was diagnosed with endo. However, the issue was more of an emotional one in the end and about my feelings for him. Anyway, I am now happily married to someone else but occasionally suffer with severe cramping deep inside straight after sex like the worst period pain ever that thankfully passes eventually, sometimes with the need for painkillers.

    I would definitely seek advice from some sort of counsellor as the others have suggested, as although pain is often a physical symptom it can also be an emotional one, i.e. more to it than you think, so it's worth looking into x

  • hey, i was really shocked and scared when i was told what was stuck to what, and i will have to have a major operation at somepoint but my gynae wanted me to use the pill to not have a period to put the endo in remission thats what he said and then he said the next step would be other medication but he didn't mention anything more then said after that it would be at op to try to detatch everything and remove as much endo as possible but he said the way everything is stuck together theres a high risk my bowel could be damaged that i will need stoma bag which has filled me with fear. ultimately im so worried i can't have children the thought of not being able to get pregnant makes me feel sick but im currently training to be a midwife so can't start my family yet. the pain i get is constant throbbing in what feels like inside my bottom and only strong painkillers subside that i don't have the pain all the time like i used to now its more around my period or the odd couple days in the month or my left side of my lower tummy hurts bit like period pain. sex hurts because i tense up then it's fine apart from a odd twinge but afterwards the pain inside my bottom is horrendous and painkillers hardly touch it. x

  • The mini pill will help to keep the endo quiet so it's worth taking. And it sounds like there's 2 issues going on - the tensing before penetration and then the back passage pain after. Reading the other replies too, relaxation and plenty of foreplay is definitely the way to go to help with the penetration issue. As regards the pain after, where the uterus is stuck to the bowel means there is no space in the Pouch of Douglas, which essentially and normally keeps the two apart so it's not surprising that you have that kind of pain after sex.

    My PoD is completely obliterated with endo and scar tissue thus causing the sticking together, but like the others have said get yourself a proper specialist who can do this kind of surgery and who will do it as part of a surgical team, which will include a bowel specialist. I have been told there is a slight risk of having a bag but that this would only be temporary until they could fix things, and as the others have said there are risks with every op, just one of those things unfortunately. Your doctor should be able to get your referred to a specialist or contact Endometriosis UK to see if they can help. Before I moved to Adelaide from London I actually just googled endo in Adelaide and really landed on my feet finding out that Susan Evans, one of the world's leading experts in endo, works here although it took some getting referred to her due to her popularity.

    Hope you find someone soon that can help you x

  • Hi I am so sorry to hear what you are going through. It is awful physically and mentally! Not sure where you are or who is taking care of you endometriosis but would you feel able to reconsider surgery? With the right surgeon your risk of a bag is very very low. I had exactly the same as you bowel attached to the uterus and all sorts. Saw a wonderful surgical team and had it sorted. Now can have sex again, no bag! Each place should be able to tell you what the rate is for women having surgery on their bowels having a bag is (hope that makes sense). Not sure if you know that some hospitals are very used to dealing with people who have severe endo so pick one of those. The waiting lists can be long but if you can get some relief at the end of it the it might be worth it in the end.

  • I agree with that about depending on the surgeon as I was told by a doctor I had to have a bag fitted but now the consultant I am seeing is the top surgeon at the hospital that I am under and has said that the chance of it happening are slim as he is also an expert in key hole surgery and it has never resulted in a bag being fitted in any of his patients however bad their endo has been! Xx

  • i have no idea all i was told was that and that if they tried to detatch my bowel or try to get rid of some of the endo then my bowel could get damaged and ill have to have a bag. how do you find out which hospitals and surgeons are the best for this? x

  • That's what I got told at first hun... That's a slight risk but there's always risks with any operation! Ask you're GP if there is an endometriosis specialist near you, my consultant is obvs a gynecologist but he is an endometriosis expert too and he is amazing! Xx

  • I am in the same position as you! I have been with my boyfriend for 2 1/2 years and for the first 4 months of our relationship we had a great sex life! Then one day it all changed! The reasons for me are still unclear and my gyne is still trying to find out what is wrong!

    It is so hard for both of us but I find that honesty is the best thing! I tell him how I'm feeling and I always ask him about how it makes him feel! Communication is the answer! Don't bottle things up! If your scared tell him! Otherwise the tension and nervousness with overtake and you'll be jumpy and in a bad mental place which I have dealt with! Not nice being on anti depressants when your 22!

    People who aren't in situations like this don't understand how much it effects everything! Both of our confidence in the bedroom and normal life has gone, the constant guilt of not being able to please and make love to each other is awful! But if he is supportive he will stand by you!

    I am constantly worried about him walking away from it all but 2 years is a long time for a young man to go without sex! Just proves that sex isn't the thing holding us together! I am proud of both of us and we have been through things that would have split people up! Shows who's got the better relationships!

    It's so hard but I keep thinking about the time when sex will be good again and how special it will be!

    Have you tried sex councilling? Me and my boyfriend went together and I was so surprised by how much he opened up! We had a better understanding on how else to full fill each others sexual needs without having sex! There are ways to still show love!

    I still get nervous and grumpy about the whole situation but remember who is still at your side! They have needs! Not saying all the time but try and make effort as they will appreciate it! It's so hard when you constantly feel like crap!

    Hope this helps! Good luck! Xxx

  • Hi I totally sympathize,

    I experience pain and it can put you off and when you do get down to it you cant relax because you fear it will hurt.

    Also my libido is none existent and its hard to explain that to a randy male lol

    My new husband has become alot more understanding since i showed him posts like this of women explaining how having endo makes them feel.

    I understand about the worrying, and it makes me feel less of a woman sometimes.

    Try and talk it through and show him that its nothing to do with not fancying him, purely down to this condition and raging hormones.

    Good luck! xxx

  • I know exactly what you're going through Hun I've just turned 21 and have been suffering with these symptoms since I was 16 with the partner I'm still with now, luckily he is very understanding and we have both had to find ways to make me more comfortable. It's so undignifying going to the doctors and explaining it all they even gave me a medical diagnosis name for 'painful sex'. The only thing I have found to help me is relaxing and not rushing anything, sorry if I am telling you TMI but plenty of foreplay relaxes me even if it's just a body massage! I've understood that my pain is worse when i tense up (understandably) but I can't help it when I know sex is coming because I'm trying to prepare myself for the pain, I've managed to re work my thoughts. Most of all we both now have to just agree that for us getting intimate can not always be penetrative sex. I always suffered with pain on my right side where my ovaries are and last month I actually ruptured a cyst on my ovary during sex (worst pain ever) I'd been going to the doctors so many times with this pain in my ovary and they said it was just period pains :-( so if the pain is somewhere specific push the doctors to investigate more as there could be more to the problem :-( I'm now paying for private healthcare just so I can be seen as soon as I have a bad episode of pain! X

  • I am so sorry to read your distressing story. It reminded me of me when my journey started with endo 21 years ago!!

    Sex is still painful and for the last 3 years a no go area ( and too have got married during this time). It's so painful but now it's definately a mental and emotional blink which I will tackle after my next major surgery in 3 weeks.

    Like you I had bits all stuck years ago, stage 4, after 4 laps to remove, had bowel surgery with a risk of stoma (always a risk) but was fine. Few laps since and more meds and 'frozen pelvis' is back so all organs stuck together including bowel. Now need full hysterectomy and bowel surgery. Gyni said 95% chance of temp. Stoma. Tbh, I didn't care as suffered so long, I just needed it sorted. Went to see biwel surgeon (diff one from before) and he said 5% but they never know until they are inside. Of course I would rTher not havd one but having suffered for so long I gave become 'hardened' to the reAlity of it and try to stay positive and havd faith in what the experts do!!! I needed IVF due to endo and now blessed with 2 yr old twin girls. I have felt my whole life is a planning of meeting the right nan to have children to get this disease out. Took me 21 years and a faked married but now it's happening. I may still get done discomfort after hysterectomy from extensive scaring on bowel and bladder, but surely can't be any worse. Once recovered, I shall seek advise from a sex therapist to start my life back and truly cannot wait. My story is long but I hope you take from it hope. Hope stoma bags are always a risk but very small, and only thd bowel surgeon knows not gyni so please do let that put you off. Also many many ladies go on to have healthy children naturally or assisted. Best time to try is straight after an op before it's built up again. I do wish you much luck with this xxxxx

  • Ops, failed marriage not faked!!!

  • I used to feel that way but i tried endovan for 2 months and sex is more pleasurable. You can review the website and read on about success stories on endometriosis.

    endovan.com/?gclid=CLTCh8m9...

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