The chronic condition estimated to affect 2 million women in the UK
Last month Lena Dunham announced that due to an endometriosis flare-up she won’t be doing the usual round of press commitments ahead of the new season of Girls.
In a statement posted to her Facebook and Instagram accounts she told her followers:
‘As many of you know I have endometriosis, a chronic condition that affects approximately 1 in 10 women’s reproductive health. I am currently going through a rough patch with the illness and my body (along with my amazing doctors) let me know, in no uncertain terms, that it’s time to rest. That’s a hard thing to do, but I’m trying, because all I want is to make season 6 of Girls the best one yet. I’m lucky enough to have support and backup from Jenni, Judd and the whole Girls gang. So many women with this disease literally don’t have the option of time off and I won’t take it for granted.’
So, what is endometriosis? Despite the fact that an estimated 2 million women in the UK are currently living with the disease it’s not a well understood condition.
In brief: endometriosis is a disease in which tissue that normally grows inside the womb grows outside it – most commonly on the ovaries and fallopian tubes, inside the abdomen and on the bowl and bladder. This tissue responds to the menstrual cycle each month and also bleeds. This can cause pain, inflammation and the formation of scar tissue because there is no way for this blood to leave the body.
Back in November Dunham wrote a frank essay, The Sickest Girl, detailing her struggles with the disease – she explains the ways in which endometriosis has affected her relationships, emotional wellbeing and work life and recounts the years she spent enduring pain and being misdiagnosed.
Dunham’s experience resonates with many endometriosis sufferers. The disease is far from straightforward to diagnose – women report waiting 8.5 years (on average) from first experiencing symptoms to having the chroic condition correctly identified.
Why is this the case? Partly because endometriosis can manifest itself in lots of different ways and partly because we all still tend to dismiss ‘menstrual issues’ as the sort of pain women should put up with. We normalise ‘women’s pain’ to the extent that women often dismiss their own symptoms and delay seeking help. Then, once they do consult someone their symptoms aren’t necessarily regarded with the seriousness they should be.
Here’s 10 things you should know about endometriosis
(see Endometriosis UK for more information)
1. Endometriosis can affect any woman of child-bearing age (it is rare in women who have been through the menopause)
2. Symptoms include: pelvic pain, heavy periods, bladder and bowel problems, fatigue, depression, pain during or after sexual intercouse, problems conceiving and difficulty fulfilling professional and social commitments. (NB: some women don’t experience any symptoms at all).
3. Any pain experienced often correlates to your menstrual cycle, but not always. Equally, the severity of pain experienced does not always correlate to the amount of scar tissue present, the pain is more dependent on where the abnormal tissue is located.
4. There is currently no cure, no proven cause or known way of preventing endometriosis.
5. There are some ways to manage symptoms. These include: pain relief, complementary therapies, hormone treatment and surgery. The best course of action will be recommended depending on the patient’s age, severity of the disease and desire to have children.
6. The only definitive way to diagnose endometriosis is by a laparoscopy – a small operation that involves inserting a camera into the pelvis via the belly button.
7. The disease can cause infertility. But 50% of women suffering from endometriosis will not experience any problems conceiving.
8. Endometriosis is not an infection and it is not contagious.
9. Some women experience relief from their symptoms during pregnancy but in many cases symptoms return along with a woman’s period. Pregnancy is not a cure for the disease.
10. Having a hysterectomy does not always cure endometriosis. It only treats the disease on the organs that were removed.