1. It’s more than just a bad period
Endometriosis occurs when cells similar to those that line the uterus are found elsewhere in the body.
Each month the cells react to the same hormonal changes that regulate periods. That means they build up and break down but, unlike a period, the blood has nowhere to go so it remains in the body causing pain, inflammation and scar tissue.
2. There are lots of symptoms
Endometriosis has many symptoms, and every woman experiences them differently.
The NHS identifies the main symptoms as:
- Pain in your lower tummy or back that is usually worse during your period
- Period pain that stops you doing your normal activities
- Pain during or after sex
- Pain when peeing or pooing during your period
- Feeling sick or constipated or having diarrhoea or blood in your pee during your period
- Difficulty getting pregnant
Heavy and painful periods can be a sign that you have endometriosis.
Blood-filled cysts – known as endometriomas – can also form on the ovaries and may need to be surgically removed.
3. It can have a huge impact on your life
The impact of endometriosis is not just felt during a period. The build-up of inflammation and scar tissue can lead to long-term issues such as:
- Chronic pain
- Fatigue and lack of energy
- Depression and isolation
- Problems with sex and relationships
- Fertility struggles
- Difficulty fulfilling work and social commitments
4. It’s pretty common
1 in 10 women in the UK – around 1.5 million people – suffer from endometriosis. And that’s just the ones that have a diagnosis.
5. It takes a long time to get diagnosed
It takes an average of 7.5 years from a woman first seeing her GP about symptoms to getting an endometriosis diagnosis. That’s dropped from 11 years but is still way too long.
6. It’s diagnosed through surgery
It’s very difficult to diagnose endometriosis. Many of the symptoms are similar to other health issues and not all signs, such as inflammation and scar tissue, can be identified through medical examination or scans.
That’s why surgery is the only way to confirm a diagnosis. During the procedure – known as a laparoscopy – a surgeon passes thin tubes through cuts in the tummy to find any patches of endometriosis and remove them, along with any cysts or scar tissue that might have developed in the pelvis.
7. There are several treatments
Endometriosis can be regulated through hormonal medicines and contraceptives such as the pill or the coil, while painkillers like ibuprofen can tackle pain.
Surgery can be required to remove large patches of endometriosis or cysts – with some women having many surgeries during their lives as the patches grow back.
In extreme cases, a hysterectomy may be recommended.
8. The cause is unknown
There’s no consensus on the exact cause of endometriosis. There are several theories on why it might occur but much more research is needed to understand it fully.
9. There’s no cure
As doctors don’t know what causes endometriosis, there’s no cure for it. Women use a combination of the treatments above to manage it throughout their lives.
10. Help is on the way
Endometriosis is finally getting more attention.
A Government report in October 2020 called for more research into endometriosis, better care for sufferers, increased awareness and, vitally, a commitment to reduce diagnosis times.