Raising awareness of endometriosis

It is estimated that endometriosis affects 1.5 million women in the UK - a similar number of women affected by diabetes*.

It is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. Statistically, 1 in 10 women in the UK suffer from it.

It’s a long-term condition that can be very painful and have a significant impact on a person’s life.

NHS 111 Health Advisor Alison Greenwood was diagnosed with the condition at the age of 21. She said: “I was experiencing excruciating period pains and abdominal pains during different times of the month, so I did some research myself and decided to ask my GP if it was endometriosis.”

On average it takes eight years from the onset of symptoms to get a diagnosis and although it wasn’t that long for Alison, it was still a battle to get a confirmed diagnosis. She told us:

“My symptoms were disregarded numerous times. I even attended the emergency department once as my pain was so bad but eventually, I was referred to gynaecology. They arranged for me to have tests to find out what was going on. Following this, it was found that I did have endometriosis and I was offered diathermy - a therapeutic procedure which uses electric currents to generate heat

in layers of your skin - to remove the endometriosis from various internal organs.”

Alison thought the procedure would help end her suffering, but she wasn’t expecting the blow that came when she saw her gynaecologist again. She explained:

“I remember distinctly in this appointment that I was told that I would find it difficult to have a family due to the extensiveness of the damage caused by the endometriosis. I was devastated. To stop any more endometriosis from forming, I was put on a treatment plan of controlled drugs, some of which I had to inject into my stomach and caused menopausal symptoms which were then counteracted with hormone replacement therapy.

“My husband and I did manage to start a family, but it has been a very bumpy ride. We had our first child in 2004 and have since had three more children. However, during that time we have had miscarriages and also an ectopic pregnancy. The ectopic pregnancy was a direct result of the endometriosis as there was a large mass that needed to be removed.”

To keep her symptoms at bay, Alison has had further treatment including more diathermy treatments and is now able to manage her pain. She explained: “After more than 20 years of having endometriosis, I have learned to cope with my symptoms, and I just manage them with pain relief.”

From personal experience, Alison now advocates for more to be done for endometriosis sufferers. She added:

“I feel it is so important to raise awareness of this condition. Many women are still misdiagnosed and not listened to regarding their symptoms. I know people who have had this condition and have faced difficulties in getting the correct support. If I could give one piece of advice to anyone with endometriosis, it’d be to push for the treatment you need - it is a condition that is very much overlooked.”