I went to my endometriosis support group last night. I love the group, its such a relief to know that other people actually know what I’m going through. As much as my good friends try to understand, they don’t know exactly what its like to struggle with pain on a daily basis. The girls at the group do and there are no boundaries, we can talk about anything even the things you think in your head that you could never say out loud. Nothing is off-limits.
Last night, we all told our stories since a lot of new girls have joined recently. There were about a dozen of us. I was the youngest, as usual. I listened to the new girls, all engaged or newly married, talking about their worries for fertility. I listened to the stories of the girls who struggled for years before going to this one consultant who finally believed them and diagnosed them with endo. This consultant is hero-worshipped by the group because he has a special interest in endo cases. He’s also my consultant.
I first went to him in August. He listened to my history and said it was endo. I had been diagnosed four years ago but repeatedly told since then that they had ‘cured’ it and there was no way it could have come back. He told me it was definitely endo. Because I had never been to this hospital before, he sent off for all my notes and scans, etc, before deciding on treatment. I returned in November, he said he didn’t think that it was endo anymore because nothing in my scans suggested it. I felt like I’d been punched. I knew that this was what was wrong with me and after building up my hopes, he had just destroyed them. It felt like a sentence passed on my life. Condemned to live in excruciating pain with no apparent reason forever.
When I returned in January, with a pain diary and ready for a fight, he gave me the option of an operation. I asked for it, even if, as he thinks, it doesn’t show endo at least I’ll know one way or the other.
Last night, listening to the stories of these other women who have gone to him and been diagnosed and treated so easily, I started crying. It dawned on me that he had never even examined me, felt my tummy or anything. Why was it always so much harder for me?
Is it because I look so young? Even when they know my age, they look at me and think I am still a kid and therefore I’m not in the same league as these married women wanting babies. I know fertility isn’t my primary concern at the minute, I need some relief from this pain which has taken over my life. Still, I would love to have children one day and the thought that I mightn’t be able to scares the living daylights out of me. But I told myself long ago that I would focus on one battle at a time and right now, my battle is with pain. One day, when I start a relationship and it looks like it might get serious, I’ll have to tell my boyfriend what exactly he’s getting into with me. Its an awful lot of baggage when you’re only 23.
My consultant hasn’t done an internal examination because I’m a virgin and it will be painful. It didn’t matter so much when another doctor did one a few years ago. Nor did it matter a few weeks ago when I had a serious abscess in a not-very-nice place and had to be examined by countless doctors. Yet I still get treated differently because I’m not sexually active. Sometimes it feels like I’m being punished for never having sex.
I guess I’m just feeling a bit sorry for myself today. I just feel like I’m banging my head against a brick wall and no one will ever take me seriously or even listen to me until they think I’m a proper ‘grown-up’.