These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
I too have suffered from endometrosis. I first discovered it was endometriosis after seeing several doctors thinking it was appendicitis.
I didn't really understand what the long term effects were, my doctor wasn't great. I was 21 and a virgin, I had just started dating my to -be-husband. I had never even heard of it.
So I had the operation and they removed 4 cysts, told me I was good to go an the op was a success. I thought that was that.
A few months into dating my boyfriend we slept together for the first time, it was so painful. I figured it must just be what loosing you virginity feels like. I didn't know endometriosis could be re-occurring.
The second and third time it was better but still hurt. I didn't know what the big deal about sex was as it hurt. My boyfriend figured I was just feeling guilt about sleeping with him before marriage. I am a christian but I already knew we would end up together, just a matter of time. I loved him so much, and he loved me back.
And so a year later we were married and he was asking for a divorce two weeks in. I really just did not enjoy sex. We were having sex twice a week at most, that was our honey moon phase. I loved him, I loved the intimacy but the pain, gosh the pain .
I went back to the doctor to find out I had more cysts about four weeks into our marriage. This time he was a fertility doctor. He explained to me the ins and outs of endometriosis, and proceeded to operate, he told me to get pregnant as soon as possible as this usually helps with the endometriosis.
We wanted kids - well I wanted them for sure and he wasn't sure. So I got of the pill without telling him and for 8 months tried to fall pregnant. I was 26 at this point. I was told men never want kids till they have them, so I went with it.
Sex after the operation didn't hurt at all and there was a very brief moment I actually enjoyed my husband - maybe 3 months. Then the pain started again, I knew they were more, went back to the doctor, and he operated to remove cysts. This happened twice during the 8 months I tried to fall pregnant. I was 27 now.
My husband was worried but frustrated and I knew I was loosing him. He was a very sexual person, I was not I guess. The pain sometimes didn't seem worth it. I tried to show him my love in other ways, but I could tell how disappointed he was we could not be how he pictured us. Only he thought I was CHOOSING not to be with him, and using the pain as an excuse. It was frustrating. aggravating and depressing.
So 8 months in I went to the doctor. He did that ink test where they pump you with some ink to see if there are any blockages. Both my fallopian tubes were blocked. He told me my only chance to have a baby was to do IVF, I was 28.
I know my husband (31) didn't feel ready, but the thought that I could get relief from my endometriosis prompted him to go along with it. So we did. It was awful, I have never fought so hard with my husband. IVF sucks.
But success, I was pregnant with twins. I found out alone as my husband didn't come with me, only when he had to give his sample, and drive me home after the egg extraction and implantation. My husband hated me, I didn't like him very much, but I still loved him. I would tell myself, if the shoe was on the other foot, I'd be resentful too, he didn't ask for this .
I just hated everything and everyone at that point. The IVF treatment did not play well with my hormones. I was an emotional mess. He was starting to talk about divorce again.
The pregnancy was tough, going from endometriosis to IVF to having twins took its physical and emotional toll on me. I wasn't a fun person to be around. I had no one. My family lives in another country and I had moved cities when we got married to be with him. I resented him, he never came to an appointment with me after IVF. It was hard. He kept on telling me though out the pregnancy he " couldn't do this any more". More divorce threats.
5 years into our marriage. I didn't get it. I was the one being opened up, poked, prodded, tested, stitched up, year in year out. He made it sound like I was doing it on purpose, like I was making bad life choices.
5 months in and I miscarried. I have never been so depressed in my life. I have never been so alone. My parents came and cared for me for as long as they could, but they eventually had to leave.
I was too scared to leave my husband alone and go home with my parents. I figured I'd find divorce papers waiting. I still loved him and blamed myself for our struggles. So I stayed and healed.
When I had some sanity I scheduled therapy. We made some head way. I thought things were getting better. I convinced him to let us try IVF again. The goodwill didn't last long, again I was on my own at every appointment and for every injection. I was so resentful.
Therapy stopped when he started going to sessions and all he would say was " I want a divorce, I want a divorce" like a toddler throwing a tantrum. I was half way through IVF when he started spewing divorce threats.
Needless to say the IVF didn't work. I didn't fall pregnant this time. I think I tried too soon. My heart wasn't ready after I lost my two babies only 6 moths before. I was heart broken, tired, fed up with my husband, with my life. not the right state of mind to try IVF.
A year went by, no cysts, not as many divorce threats. I thought we were healing. Then the pain came back. I'm 31 now and getting ready for surgery. All the divorce threats are starting again. I'm sick of it. I never understood why he never got the papers. I've called his bluff many times and have said " GET THEM!". He never did. I figured he wanted me to hurt, like he was hurt.
I didn't get why he didn't understand, endometriosis is not a choice, mine was not manageable. The pain is incredible. Now the pain doesn't just happen during sex, I feel it all day every day. I'm learning to ignore it and live with it, but there are days I can't get out of bed. He thinks Im lazy.
I'm going to do it, get that divorce, for my sanity, right after this next operation. He will never understand the pain I feel, he thinks I don't want to have sex. I don't have a choice in the matter. This has been hard. It could have been different if he had been more patient and the pressure he put me under - I deserve better.
My life would have been so different if I had never had endo. I cannot have kids and hate when people tell me "keep trying, I fell pregnant out of the blue!", its a real kick in the stomach. I've been trying for 7 years.
I'm getting out. I'm going to choose happiness. Mine - and worry about my relationship with myself. It took 8 years of marriage and putting him first to figure out that he will never get it and its not my fault. I'm going to be OK.
That was a hard thing to learn - acceptance of myself and my situation didn't come easy. But I'm getting there. I'm going to be OK
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