Endometriosis UK
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Hello, I've just joined

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

9 Replies

Hi, sorry to hear of your problems, this is a brilliant site as it is the only place where people actually understand the symptoms and problems. It must be so difficult to have endo from a young age, my problems started when I was 27 after a difficult birth, and I had to have a total hysterectomy at 40 even though it would not necessarily improve problems as I had cysts on both ovaries and a prolapse as well. I wish you the best of luck with your scan. I have constant generalised discomfort which leaves me with fatigue and bloating, and so far I have just been advised to eat smaller meals because of my digestion, i am now trying healthy soups to see if they help instead of a meal. I agree with you, it affects your social life, because I suffer from tiredness people think you can't be bothered with them, anyway all the best to you xx


Thanks Spice for replying, hope your soup helps, and congrats on having a baby, I'm also tired constantly, good luck. Linda xx


awww sorry to hear that you have been through the mill and the Gynae should have not said that to you as i agree with your nurse and GP and at least you got the better one... i am 39 and no kids and not yet having the hysterectomy yet so i am tempting to have it done as this Endo is making feeling down and fed up... i have it on my pouch of douglas and i have been on the pill for nearly 2 years now and still not making me feel good at all as i am constantly tired too... i have been tested for iron level and they are fine... but i just keep going... i dont get a lot of pain but if i eat the wrong thing i do... when i get my period and it left me so weak and tired and pain... so i am going back to the GP to say that i am not having period as it driving me nuts as i seem to have this every 2 weeks at the moment... Endo always make us so tired... so i hope you are pain free today x


hi Spice, hope you are feeling a bit better today, does drive you nuts doesnt it. im not having regular periods, the last one was last month and before that about 3 months ago. but i always have the symptoms for it. feeling not to bad just now, just the normal niggling, but very tired, do you get on well with your gp, they will prob hit you with more pills lol, sorry for the lol but if you dont you just cry, hope you have a good day . love Linda xxxx


Hi linda

I can relate to your whole story except i didn't go down the ivf route. Believe me i desperately wanted children but i didn't have the strength to do it.

I asked my gp the other day where exactly my endo was and he said it is safe to say absolutely everywhere. The pain pattern you described was the same and i can remember many a night/early morning rocking on the stairs waiting for the painkillers to kick in.

However my periods got heavier and heavier until i was flooding and could have 3 or 4 outfits in half an hour i couldn't cope any more.

I had a total hysterectomy nearly 2 years ago at the age of 44 and i have had another excision of endo in December which seems to have done the trick for now and any pain i have i can control so after 20 years whilst this terrible disease took away my chance of children it is no longer in control of my life because i can have a life now.

I wish you all the best in the next stage of your journey whichever way you decide to go. Xx


Thanks figgy, mine is all over the place aswell, the gyno doc always says it's an awful mess in there. It's good that the hysterectomy. Has worked for you. Hope very much that you can keep controlling the pain, a good few years ago we decided to go down the fostering and adoption route. But because of the way I am with endo the social work didn't think that I would be allowed to. So we stopped right there rather than go on and face more disappointment. Hope you have a pain free day. Love Linda x


Hi Linda, yes a mess is one way i have heard it described the latest was it is really sticky, i see the consultant in august to find out what that is all about. I am not sure i have heard about being stopped from fostering i would do a bit of research on that before you give up it could be the social worker doesn't fully understand. Take care love Sara x


Hi Sara, well from what I remember one of the steps you go through entails a medical assessment or something like that ( was about 14yrs ago ). Before my last surgery I was put on zoladex injections was getting them for 18 months and was given hrt for the last 6 months or something, to stop my period before surgery to see what it was like inside without periods. After the surgery 4 1/2 yrs ago I just take periods 3 / 4 times a year. But before that when I did have them every month I was completely bed ridden I could hardly move. And truthfully. I couldn't have looked after kids. Now even though I don't bleed every month I still have all the symptoms. So we will see what happens down the road concerning fostering. Good luck for august. Hope you have a pain free day. Love Linda xx


Hi Sara. Was just checking my calendar there had a period last month and got another one this month. Think I've went back to before I had the injections. Love Linda xx


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