Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Finally been taken seriously

by Louise Crofts

My endometriosis symptoms were dismissed.

Since I started my periods at 14 I had very painful periods. Not every time but maybe every 3 months or so they would be painful with a dragging feeling and bad back ache and a 'draining' feeling in my thighs.

At other times when my period started the pain would be so awful I would sweat, rock, couldn't move, faint or throw up.

Our local doctor wouldn't attend, went to A and E but not taken seriously as the pain lasts 15 to 20 minutes and I can't move till its gone, even to get help. Went to local doctors several times, just told 'it's normal as a woman', or it's 'muscle spasm'.

Now I'm 34, been TTC 1 year but now periods very painful again and lasting 2 weeks plus. Went to doctor again, he would not even listen, face fell when I mentioned periods! Dis rubbish exam and announced I had a sexually transmitted infection!! (I get thrush a lot because of long periods).

He refused to act on anything, said if I came back to see him he would just tell me to take a pain killer. I know how to take a pain killer and I am a nurse. I was so hurt and embarrassed. I got a full check up almost to spite him and it was all clear except for thrush which I could have told him!

I went to see another doctor who was lovely,again didn't seem to be too interested, but did refer me for a scan.

The lady that scanned me said she found a 6cm cyst on one ovary. It has blood in it. She couldn't see the outline of the other ovary. She said it looks like endometriosis. I need another scan to see if anything changes and if not I will need to see the gynaecologist.

She said all my symptoms sound like endometriosis. She was so nice and she really seemed to listen and to care. Lately the symptoms seem to have taken over my life. It is impacting on my work.

I work in the community and sometimes I struggle to manage travelling around because I am so far from any toilets. It is getting me down so much. I don't like to say anything to people because it is so personal.

My mum and auntie both had it badly but none of us really talked about it and we didn't know it runs in families. I thought a lot of my symptoms were normal because my mum had them.

Now I am really scared I can't have children. I know I am looking too far ahead and I don't know yet. It just feels like everything has dropped in to place. I just feel so let down by the doctors.

I wish I had pushed harder before to get an answer for everything. I feel angry and hurt that as a woman in pain sometimes you don't get taken seriously. Thank you for listening.


Name:Aylin, Beijing China

Title Your post

I read your story and saw myself in your situation... My story started exactly the same as yours, with a cyst, but mine was broken ...... You can image what happened then... infection in all the abdomen from contained blood.. pains like Hell... And the dr. gave to me antibiotics only...

Since then till now, I had done a laparoscopy surgery, they clear the endometriosis and cysts, now I am on Endovan from US , can google it to read about this medicine. And I take some Chinese medicines also. Is hard, I am 33, one year younger than you, but I lived pains as in the Hell maybe can meet... almost every month a cyst is broken at ovulation time and I must take antibiotics ...

I took out my gallbladder because of endometriosis, it was not working because of endometriosis tissue there.. Sometimes feel like all is bloated in me and something will broken then, then start horrible pains that it make me feel I have few mins and I will die... I lose my minds, I am nervous and wish I die in that moments, I feel horrible....

No any kill pain medication help. I am speaking with many women who have endometriosis, stories are almost the same, I don't know how I will live like this.. I can't work, I can't live alone, I can't marry because I can't have a relationship...

I am in a relationship with a married man who take care of me how he can, but I can't have a boyfriend for marry him ... I prefer a man to not tell him about this problems, I try to keep hidden the days when I am feel like in Hell....

But if I have to marry someone, he will see I am ill and he will run away after this.... It was happen this to me and I was very hurt... So, only God know if I will can have someone mine ever...
Wish you be strong.. If you want contact me to aylin.zhan@yahoo.com and we can talk more.

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