Endometriosis story

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

Symptoms of Endometriosis for years and undiagnosed

by Sam
(Hampshire, England)

I am 43 and have suffered I believe with the symptoms of Endometriosis for years. I fell pregnant and miscarried at the age of 17, I was in agony I didn't know I was pregnant and I was very scared.

I had a D&C and put it behind me. I later tried desperately to get pregnant, eventually after four years I did. My daughter is now nearly 19 and since that day to this I have never conceived again despite no contraception and a regular healthy sex life.

My periods which had always been painful got markedly worse after I had my daughter, every month I would get pains in my legs as well as the pelvic pain and back ache.

When I was in my 20's I started to have reoccurring pain symptoms in my right side, sometimes with my period,sometimes not. As I was young and it wasn't constant I just carried on without getting it checked out.

Fast forward to the recent, periods have got steadily worse as time has gone on, very heavy and losing blood clots and also the right side pain symptoms. For the last two years or so, right side hip pain especially. I have also had quite a few UTI's in this time.

I have seen every Doctor in my surgery over the years for this period pain, and in my side and hip. Apart from having my stomach felt and internals I have just been told it's just heavy periods and have been given occasionally strong pain killers.

I have just carried on accepting that in the middle of the month I am going to get cramping and pains in my legs for a few days during the ovulation time and then get ready for the pre agony then menstruation agony.

However the day after lasts months period had finished my partner and I made love, the following day. After this, I have been the most worried and poorly that I have ever been.

The day after we made love I started feeling what felt like period pains in my legs, which then went to sharp pelvic pains as well as in my side and hip. My legs felt like they were throbbing and on fire.

It happened two weeks ago Friday and I couldn't get to the doctors until the Monday after. The doctor just said we will send you for a scan, check for uterine fibroids or anything going on there. The doctor said he did not know why I am in pain now and maybe hormones, and advised to dose myself up until the scan - see you later.

Without any assurance and scared I go away still in agony and buy more painkillers. The pain did not ease with painkillers and my partner and daughter took me to hospital where the doctor feels my abdomen. All feels ok there but she has found blood in urine and other things that could indicate infection.

I leave relieved that at least this may be a reason for the agony I was in. However after taking the antibiotics things were no better. I go back to docs expecting infection still there, but there is no sign.

All the doctor could do was shrug his shoulders when I tearfully said I was thinking the worst, did not offer any words of comfort or reassurance, just said he would chase the scan up and prescribed stronger pain killers.

I have been distraught and paranoid ever since, my emotions are all over the place. I am exhausted from not being able to sleep from pain and worry, the painkillers give me palpitations so have switched them.

I have also noticed that I have the shivers and a very hot face on and off. My scan is on the 23rd Aug, I am trying to stay positive and not think about the big C word. :'(

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