Hello everyone, I've just joined your brilliant site. My name is Linda, and have been diagnosed with endo for just over 20 years.
Right from the first I had terrible periods, very sore and heavy. I went on the pill when I was 16 so I wouldn't fall pregnant ( not that I slept around or any thing like that ) lol. I met my hubby when I was 19 and have been together for 24 years.
I came of the pill a few months before we got married, as we wanted babies. Nothing happened after a year so we went to see the doctor, after numerous tests then a lap we found out I had endo. I'd never heard of it, all I knew was that it was a disease, that was all I picked up from the surgeon after I came round, he wasn't very helpful information wise. Anyway I was put on pain killers and that went on for a few years while we were referred for ivf. We had 3 attempts at it with no luck. Then after the 3 one we had to go and see the head doc of the ivf unit, and he told us that we should never have gotten ivf in the first place as I wasn't producing eggs. It seams that the gyno that I was seeing had not done all the tests properly in the right order. After that he said to me that there was nothing more he could do for me and to get a hysterectomy, the nurse that was taken aback by his abruptness and I was in shock the way he spoke to me. I left there and went straight to my gp and told him what had happened, and told him I refused to see him again. The gp said I don't blame you and that he should have never spoken to me that way. Any way I saw another gyno after that and he has been brilliant. So 20years down the line I have had all the medication and injections that they use for endo, have had loads of ops. The last one was 4and a half years ago. Everything was all conjealed together along with the bowel and bladder, he tried to separate them as best he could.
I have been in pain constantly for years. The best way that I can describe it is that when I am feeling good it is like a normal period pain all the time ( from what I remember right at the start). I am like that a few days then in agony a few days when I can hardly walk and can't do anything. I can't make plans to do anything I have to wait and see what I an like that day. I live in my pjs most of the time. I don't take proper periods now maby one every 3_4months. But have all the symptoms for them constantly. It's a good job that my hubby drives or I wouldn't. Be out the house very often lol. I have been on depression pills for yrs. My gyno said that it is in a awfully state in side between endo and adhesions. He also agrees with me that I shouldn't get a hysterectomy that I would be still the same because of the way I am and that I still all the symptoms eventhought I don't have periods very often.
Plus about 10yrs ito it my gp said that there is a wee slim chance that I could get pregnant after that first gyno said that I couldn't. He just didn't know what to do about it thats why he said about getting a hysterectomy.
So as of now I saw my gyno last week and have to go for a scan to see what's happening now and maby get my right fallopian tube out, so wee will see what happens with that lol.
Sorry for going on. Love Linda xx