How talking helped my endometriosis

T he biggest thing that helped my endometriosis is open, loving communication.
I was diagnosed as a teenager, and that’s a difficult enough time of your life without adding a severe health condition to the mix. Some girls are embarrassed by normal periods, some boys make cruel comments about PMS or skiving off PE or other classes at school. I was acutely aware of all this in high school, and I was ashamed of my endometriosis, as well as being in agony with it.
I tried to be brave, not because I wanted to be a hero but because I didn’t want people talking about me. But I cried a lot when I was alone. I couldn’t tell my friends, and I couldn’t even imagine having a boyfriend, because I was bleeding all the time. I felt so left out as my friends got boyfriends, and I spent a lot of time looking at my feet to avoid eye contact with boys. I wanted a boyfriend, but I was also terrified of what might happen if a boy talked to me.
It wasn’t until I was at university that I got together with a guy I really liked. I’d been on drugs that stopped my periods, which was brilliant not just because the bleeding stopped but because it meant I didn’t have to go to hospital for morphine to deal with the pain during periods. It also made me think maybe I could have a relationship, because I wouldn’t have to let on that there was anything wrong.
What I hadn’t realised was the periods stopped because the drugs put me into a temporary menopause. So when I finally reached the stage with this guy that I felt we could have sex, it was disastrous. I didn’t know that menopause causes vaginal dryness. I was very nervous, which didn’t help. We tried a few times and he was quite patient, but puzzled, and I just couldn’t bring myself to explain it all to him, so I ended the relationship instead.
There were two more boyfriends. The first I did the same thing, didn’t tell him, but by then I was off the drugs so I was making all sorts of excuses for not having sex. And it really hurt, too, so I didn’t want to have sex anyway.
With the second, I decided I had to tell him, and he was lovely at first, but it was just too difficult for us. It’s hard to have endometriosis and to be the partner of someone who has it. The pain is unbelievable, the bleeding is awful and I was tired all the time. It was a challenge to get to work every day, and sometimes I didn’t make it, and work was more important to me than sex, so I can understand why he left me.
And then I was lucky enough to meet Steve. He was different because we started as friends, and I told him about my endometriosis while we were friends, and he was super supportive of me. We hung out a lot, so he saw me doubled up in pain, crying, and he listened to me complaining about the bleeding.
At first he was a bit awkward, as most men are when a woman is crying, then his kindness came to the rescue. He began holding my hand, then holding me in an embrace. And I relaxed into him. When I complained, he made me laugh. When I was miserable, he helped me to hold on to hope.
Then one time when he was holding me, he led me to bed and stayed with me. We didn’t make love, but in the morning, he kissed me, and it felt so right. I had never felt so relaxed with a man, there wasn’t a trace of the fears from school that I carried with me all through the years.
We already had good communication, and he already knew that I was worried that I wouldn’t be able to have children, so our relationship developed really fast. There wasn’t much he didn’t know, but as we became a couple we talked about it all. Sometimes I need him to be by my side, sometimes I need space to just go to bed really early and hope that the next day will be better. He never takes offence if I don’t want to make love – if I’m too tired, it’s the kind of tiredness that can’t be ignored. But at the same time we have agreed that he should never feel afraid to approach me if he wants to make love.
His kindness and ability to listen have allowed me to learn to speak about my feelings openly. I’m no longer the schoolgirl looking at my feet. We have had our challenging moments, but we have worked hard to keep the communication open, because we know how important that is.
Steve wants to have children, and we know that it’s better for me to do that early, just in case my fertility is affected. So we are making plans now to get married, and babies will hopefully follow soon after.
Nothing has changed about my endometriosis. It hasn’t gone away. It is unlikely ever to go away. But my response to it has changed. Being open with Steve forced me to look at it directly, admit what it was doing to me and learn to cope with that. I feel stronger for that.