I feel humiliated. I have had turns and bouts of feeling very unwell over the past year, am two years past my last op which included a hysterectomy. I was never fully positive and excited after my last op because I knew I'd never be fixed and would probably be ill again, but my boyfriend thought I was being horribly negative. Sure enough, a year post opthings startedto go tits up again and I have long spells of pain and bowel problems, all due to this godforsaken illness. And then I occasionally come out of it and I feel almost completely well (aside from the mechanical problems with my colon due to adhesions, but I'm coping and I don't talk much about that because I'm not currently in pain so it hardly matters). For the past week or two I have had more energy and feel stronger than I have in a long time, and I'm grabbing it with both hands and getting exercise, feeling like my old self, even trying to have "normal" sexual contact with my partner. He seems disinterested though. Turns out he is too worried now about if my health goes south again, he doesn't think he can cope with it. He hasn't said as much that he'll leave but he "doesn't know what he'll do" but he can't ride this positive wave right now while we have it. I don't know if he's met someone or if there's any point in begging him to stay, as I can't promise him that I'll stay well. I hate that I might lose him because of this f*cking disease. I am laying awake here unable to sleep because in sleep I forgot that my worst nightmare was nowmy waking nightmare. I woke up to realise that this time him laying beside me wasn't the reassurance I have always had. And we've been working on buying a house together and I've been blindly taking that as a positive sign that despite all the sh*t I have to go through, he and I are ok.
I don't know what to do. He has every right to feel betrayed by my lack of ability to be the fun, outdoorsy girl I was before we got together. I'm 42, I'm not dying but occasionally not living because of this stupid disease, and I'm sitting here while he sleeps in our bed thinking I may have to just make the decision for him and move myself out so I'm not left high and dry when I'm not feeling ok.
I'm sorry but I'd rather be dying than slowly deteriorating. I don't know what to do.
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moxyfilms
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I really feel for you. I have just had both ovaries removed after years of illness, treatment, and symptoms. My husband gets so fed up and frustrated with life and it's hard to keep his hope that I could be better at some point up, but not as hard as keeping positive yourself.
I think you need to sit him down and tell him how you feel. If he isn't going to be willing to fight through the good and bad times with you.... do you really want him there?
This disease is horrible and it takes control of your life, and if he is planning on being there for the long haul perhaps some counselling will help you both.
I am sure he is just scared and frustrated, just be open and this condition can be up and down. Sometimes you have to make the most of the good times and then the harder times can be a little easier to cope with. I find that my attitude towards how I am feeling has a lot of effect on my husbands and vice Versa.
I'm so sorry that you're going through this. Have you considered relationship counselling? It would help the two of you focus on the positives and develop coping strategies together. Also, if the worst happens you'll be supported to work through the emotional turmoil. *big hugs*
Your message breaks my heart. I'm so sorry you're struggling so much, but your partner doesn't have any right to "feel betrayed" - you didn't intentionally do this. It's a disease with no cure. You have enough to battle without taking on guilt for something that isn't your fault.
Long term love should be there "for better or worse". If he's stressed watching you with it, then he can only imagine how bad it is to actually live with it. Talk to him. Voice your fear. This may just be one of those nasty voices in our own heads that makes us doubt the support around us. If there is any truth to it, then you deserve to know that too so you can plan to take care of yourself emotionally.
Most of all, know that there are loads of women who understand your struggle. You aren't alone. ❤️
I am so sorry you are going through this and are feeling like this. I know exactly how you feel and am in a similar situation (an outdoorsy girl, plan on buying house with partner, disease taking everything away, difficult sustaining relationship with this), though i'm 22, the way you described your feelings is so similar to how i describe mine and it bloody sucks. I've written such messages before on here with my boyfriend asleep next to me. Endo is a sucker for stealing your sex life and draining your relationship as much as possible. But it is important to remember that there is more to a relationship than just sex, if you can spend time together doing non-sexually related things and just having a good time that might help improve you relationship and positivity toward each other. How long have you and your partner been together may i ask?
I wish i could help you more but to be honest i have no idea how my relationship of 3.5 years will fair over the course of this disease. My sex life is already poor, me and my partner talk about how we feel in regards to the disease a lot which is really useful, for example i didn't realise he was scared to initiate things with me when i was feeling up for it as he "didn't want to hurt me/was scared he was hurting me". Maybe it'd be worth having a proper chat. Before my lap me and my partner had a rough time and he mimicked the "i don't know what i'll do if you're always ill" thing and i took that as a 'he can't deal with the lack of sex, can't deal with my negativity and everything being about the endo, he just wants someone whos not so messed up and difficult', however when we talked this all through (after months of stress, few arguments and a lot of sadness from me) he just felt worried, powerless and exhausted as he felt he couldn't share these feelings with me when i was so sad anyway. Its important to make sure ,despite the disease, your relationship remains equally about both your feelings, regardless of whether you're the one who feels shi***er more frequently. But getting that balance is a 2 person job, often your partner will retain his feelings and "close up" as hes worried about you and doesn't want to add anything onto your plate. You need to let him know its okay and you need to have the normality of an as normal as possible relationship as other aspects of your life are involuntarily not normal due to this b**** of a disease.
We'll never know what its like to be on their side of things but i can't imagine its easy. Its very hard for endo sufferers to know theres no cure, and i imagine thats not easy for the ones we love either. I have family with debilitating health issues and its very very difficult watching them suffer and being unable to reassure them or help them in any other way than emotional support; its mentally draining. Communication is key though, find out what he really thinks and feels about all this rather than doing what we all do, assuming. As my partner would say, "when you assume you make and ass out of u and me" Don't take matters into your own hands by taking the decision away from him, you're probably feeling quite negative about everything at the moment as endo does that to you (believe me i know) as well as throws your hormones around like a ball in a kids park.
I'm just going to say these things as you might need to hear them: You have had no choice in your situation, you don't want to have endo and its not your fault you have it, you're not a burden and deserve to be happy. You're not betraying your partner because its not your choice, its not in your head and is a very real disease. Don't let endo take more of your life than it has already taken, i know its hard but you have got to keep on trying and fighting for the things you want.
Finally (i know this is a long reply i'm sorry!), I recently brought this book, its just been published and is full of useful information and i would highly recommend it. Theres a lot of information on "wide excision" of endo and its high success rate. This may be something you know about already but thought i would mention just in case, its worth a read!
I know how you feel but turn to God and pray - I've suffered long time and people without it don't understand but if he is still there and supportive don't rush to move on it's ok you tell him your feelings to perhaps be prepared or get feedback but be sure to not rush on it. Although there are days I can honestly say I feel exactly as you but I use my faith to overcome the negative feelings. I hope you improve as all of us relate.
Yeah you are so lycky to have someone byvyour side.. he is still there, make him realise what you are going through yourself, how bad your suffering and how it is killing your energy, social/active life and affecting you mentally. Basically that you are duffering 10 times more than he might think he does.. I so wish I had a partner to support me, this is such dreadful disease that left me jobless and friendless.. Im always exhausted beyond belief( no one believes me anyway, family/ friends mock me and gave up on me), dizzy, fainty and short of breath.. my life is bed, shower, breakfast, bed.. terrible..I cant even do the only thing I really enjoy and brightens my life dancing.. Good luck to me to ever find a partner!
Maybe you should show that to your husband? Best of luck! Xxx
Agreed with Jackie by the way, he doesnt know what he will do? Dump you because you’re ill? How charming of him. What if he was ill himself, would you leave him as you’re unsure if you can handle another badcpatch? Certainly not. So maybe explain thst to him too.. Were with you!!! 💪👍👊👊👊😘😘😘
Oh, honey, I am so sorry that this is your update. If there is a bright side, I suppose it's that you will have less stress in your life now that you don't have to worry about trying to please someone who is so completely unreasonable that he couldn't put your health before his own wants.
What. A. Jerk.
If you ever need to vent or anything, please feel free to message me. I hope your days are a bit easier now that you don't have that added stress, but I feel so much for your poor heart. That is the absolute last thing it needed right now. ❤️
I’m so sorry to hear your going through this. I know how you feel as my ex wasn’t very supportive or understand. He forced sex onto me a lot of the times even when I begged him to stop as it hurts so bad.
I’m scared to tell my new bf that it hurts but he is a lot more understanding.
Maybe try talking through things with him and see how he is feeling with the relationship and go from there. You need someone who will be supportive and caring for you during the bad times
Please, please, please know that you never have to let anyone force sex onto you. They have a word for that and it begins with an "r". Even in a consensual relationship, a woman still has a right to say no!
I'm really glad to hear you are no longer with that other guy and glad that your new partner is more supportive, but it is so important that you be honest with him! Your body and your comfort come first before anyone else's feelings or hormones.
It may be useful to talk to someone about what happened in your last relationship because sh*t like that can leave an emotional scar, memories like that can cause us to retreat and be afraid of trusting others and it's perfectly normal. As with Endo, you are far from alone when it comes to women who have dealt with sexual abuse. If you ever need to talk, please don't hesitate to message me or seek out a trusted female friend or family member. A woman should NEVER have to go through what you have just described. That guy is awful and you are so much better without him anywhere near you!
Be honest with your new bf. You should never have to be forced into something that hurts you! Ever. Never ever ever.
Hugs. I know how you feel and stay strong. I think that in every relationship , communication is vey important. Maybe you both could sit down and talk how each other feels, he might not realized how things more been difficult for you and not just for him, talk about how both can cope , make decisions not just for him but both of you should do it and support is very important. If he's not positive about things, be strong and show him that you yourself not giving up on this and the relationship. If one is weak , the other should stand strong. Don't let endo take over your life dear . It's never your fault to have this disease , and don't blame yourself with anything.
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Don't take matters into your own hands by taking the decision away from him, you're probably feeling quite negative about everything at the moment as endo does that to you (believe me i know) as well as throws your hormones around like a ball in a kids park. 
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