Endometriosis story

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

Pain is so bad it effects every aspect of my life

by Louise
(Aberdeen, Scotland)

Now 42, I have been suffering with heavy periods since I was a teenager. I was diagnosed with endometriosis about 15 years ago ... although my symptoms (in my late 20's early 30's) were manageable by tri-cycling the contraceptive pill but the last 4 years have been hell ....

Unfortunately my career took over my life in my 20's and I have followed my dreams and goals which has not left me much time to think about family. Reaching a new decade of your life does makes you think about your life plan, but I believe I was destined to be without children, although I adore them.

About 4 years ago the pain became so acute my gynaecologist removed my right ovary and said that my endometriosis was very advanced. Although he removed the scar tissue he told me it would still keep growing back and he would try and keep it under control with medication and continuing the pill. Although still in pain it worked in the main for a couple of years.

Early last year I underwent a further laparoscopy to investigate the pain. I had further treatment to remove the scar tissue, which by this time had attached itself to my bowel and bladder.

My gynaecologist had to remove a small piece of my bladder to get as much tissue as possible, leaving me with a catheter for 3 weeks ... At this point he made the decision to fit me with a Mirena Coil which would help with the estrogen and progesterone levels. Short lived it helped for about a year .... with the normal 3 monthly pain flooring me...

This year has probably got to be the worst year of my time in terms of pain, with severe bowel issues coming when my period starts. I am always bloated, can’t sit up for about 4-5 days during my cycle and now having to take time from work every 3 months.

Luckily I am a Director of my company, and my co-directors have been very understanding. However If I wasn’t I would be pulled up for my sickness record....

The week before my period the anticipation of the pain starts and I feel myself becoming more depressed. My period can last from anything from 7-12 days and by day 6 I am doubled up in pain, trying anything to alleviate it.

I have read this site and many other published articles about having a hysterectomy, but again there is no guarantee the symptoms will not remain/come back.

The doctor is not too keen for me at 42 to go through this procedure as they would likely leave my remaining ovary, as if removed it would bring on an early menopause....

I have recently split from my partner of 23 years, and I am trying to look forward and looking for a new lasting relationship. My previous partner was very understanding to my condition and really did look after me during the bad spells ... How can I think about starting a new relationship when every 3 months I am in acute pain.

My doctor has moved me onto another contraceptive pill with the aim of controlling my progesterone levels, and I have recently cut out bread and wheat, hoping this will help.

I would really welcome any thoughts and ideas to help me from any other suffers. My family and friends just don’t understand how debilitating this disease can be....

Thank you for reading my storey.

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