Share your story


An article helped me discover my endometriosis

I had been suffering for years with very painful periods and had seen a couple of different doctors for this. One Doctor actually tried to tell me it was my imagination !! (this was in the early 80s. Then I read an article about endometriosis in a magazine describing endometriosis and I thought to myself that sounds exactly how I am. I took the article to the GP I was registered with. He told me he was 90 % sure I didn't have it but would send me to a gynaecologist. They arranged for me to have a laparoscopy. Well needless to say after this they discovered I did have endometriosis and an ovarian cyst. the endometriosis left me infertile. I was just told that fact after having a laparotomy to remove the cyst. I was in my 20s. I am hoping things have improved with regards to Drs. I strongly advise people to keep on at their GP if they believe they have something wrong with them. unfortunately the help I needed came to late.


Heather's endometriosis story

I’ve got 35 years of history with endometriosis, 23 and counting of which have been spent immersed in research, clinical education, advocacy and fighting for better policies surrounding the disease. I’m honored to serve as the Surgical Program Director of the Center for Endometriosis Care, where I’ve been for a decade. I’ve sat on the Board of the Endometriosis Research Center since 1997 and have consulted to some of the leading organizations in women’s health. I routinely teach clinicians, nurses, healthcare workers, students, legislators, media and society about endometriosis to increase awareness and expand fundamental pathways towards better diagnosis and management. 

None of this matters, however, more than the fact that I too am a woman who has experienced Stage IV endometriosis, 'frozen pelvis,' adenomyosis, leiomyoma and primary infertility.

My experiences with the disease began early on, even before my first period. At a time that was supposed to be the most socially and academically engaging, I missed so much. In the late 80s, the 10th doctor on the diagnosis train finally told me my symptoms were real and ‘it might be endometriosis.’ A 9-hour, hip-to-hip laparotomy later, I was validated: stage 4 disease. The devastating news that I would never have children and needed a hysterectomy dealt a blow, but life went on...

Continue reading Heather's story here


Heather, UK

Living with endometriosis

I’m a 19 year old girl from the North West of England. I have been suffering from abdominal pain for the last three years. I tried everything that the gynaecologists told me to try. I went on several different contraceptive pills as well as the contraceptive implant and the contraceptive coil. But nothing worked for me. I was on my period for 2 years straight and was lucky if I had 3 hours off every 6 or more weeks. I also ended up getting Pelvic Inflammatory Disease from the coil including having it embedded in my womb. After 2 and a half years of being tried on everything they could think of they decided to send me for a diagnostic laparoscopy which showed that I had endometriosis on my right ovary. It was a relief to find out the cause of all my pain. However, due to the nature of it endometriosis can only be fully removed by having a hysterectomy so after a while the abdominal pain, fatigue, back pain, fever, pain during intercourse, heavy painful periods and bleeding after intercourse comes back. It is a long weary process as no matter what the doctors do to try and help me unfortunately nothing seems to work. So until I eventually decide to settle down and start a family with my partner of four and a half years I have to deal with the painful side effects of endometriosis.

Tiffany, UK