My Endo Story

I think I must have had Endometriosis for a very long time because I always have had unexplained pains in my legs and ankles and abdomen which have been passed off as sciatica or normal "womens" pains or period pain or whatever else. I just had no idea what Endometriosis was and didn't find out about it till I became really REALLY ill.

It started in September 2010 when I felt like someone had kicked me in the shins, my left leg really hurt for no good reason, but I passed it off as me not realising I'd hurt myself somewhere. Anyway as the months wore on, each month my period pain got worse and worse and my back was killing me, it would be there for a couple of weeks then it would disappear again and I could cope with that. However in January 2012 I had the worst pain of my entire life and it would not go away and no pills could shift it. Once again I thought it would clear up but it didn't, and day after day I was going to my job as a cleaner in the early mornings and a school cleaner in the evenings, and I was doing the jobs with excruciating pain and nobody understood how bad it was. I got rap for not doing my job right. I soldiered on hoping it would go and it didn't it only got worse. I went to my doctor and he sent me for X rays and blood tests, despite the fact I was telling him it is all connected to my periods, he simply laughed at me, and couldn't understand that I was in sheer agony, it was ten times worse than being in labour. I had a smear test done and everything and she couldn't find anything wrong. I was tired of the doctor dismissing me every time I went there, laughing at my problem and not doing anything even I collapsed in his office he did absolutely nothing. I was put on Tramadol and it didn't work and only me very very sick. I stopped taking it because it was doing nothing. Eventually after four months of this and we are talking mid April 2011 I went to the hospital and asked them to check if I had a DVT or blood clot. They also laughed and sent me home after tests but later on, I was called back up to the hospital for an injection as they had found evidence of clotting. This time I was taken seriously and given an injection into my stomach area.

That night I had the worst night of my life I couldn't walk or move and my whole body ached like you wouldn't believe, my legs, both of them, it was as if my entire body was curled up in a huge cramp. I also lost a lot of blood via my vagina, it was so much blood and it was black and horrible, yet as it released the pressure in my abdomen also released.

I went back up to the hospital the next day and they didnt' find a clot in my legs, but no one really listened to me when I told them about the night before. Dismissed yet again. At least now there was no pressure. I still was in terrible pain though.

I stopped going to the doctor because I didn't want to be laughed at anymore and dismissed but I couldn't continue as I was, all the pain and walking with a stick and not being able to do anything, it was terrible. Still they were talking about losing weight and physiotherapy and sciatica and I'd heard it all before - no one was listening to me.

Eventually I managed to change my doctor and he got me in touch with a good gynaecologist who has now put me on Zoladex, which I have been on for four months now. It will stop after the next two injections and I am not looking forward to that. I have only just started to get my life back.. if I am crippled with that pain again I don't know what I'll do. I only hope that I can get a hysterectomy.. I feel a damn sight better and wish I could stay on Zoladex forever.

2 Replies

  • Thank you for sharing your story, sorry you had a rubbish time - all too common with endo I'm afraid!

    Have you had a laparoscopy? Discussed the mirena or long term contraception use? There are other options before a hysterectomy.

    Good luck x

  • Believe me I have.. and I WANT a hysterectomy more than anything.

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