Ten things you need to know about endometriosis

The average delay in diagnosis in Ireland is nine years.

You’ve probably seen that Alexa Chung has joined the club. “I don’t want to belong to any club that would accept me as a member, but here I am,” she posted on Instagram with the hashtags #endometriosisclub, #sorryifyouhaveittooitsucks and #endometriosisawareness, hashtags that will take you to a host of personal accounts and support pages. Many celebrities including Lena Dunham, Whoopi Goldbery and Halsey have been vocal in the chronic pain endometriosis causes.

 

View this post on Instagram

 

I don’t want to belong to any club that would accept me as a member, but here I am. #endometriosisclub #partytime #woohoo #lifelongmembership #sorryifyouhaveittooitsucks #endometriosisawareness

A post shared by Alexa Chung (@alexachung) on Jul 18, 2019 at 3:57am PDT

We spoke to the  Endometriosis Association of Ireland to find out all we could. There are 1 in 10 women living with endometriosis and the average delay in diagnosis in Ireland is over nine years, so the Endometriosis Association of Ireland have helped us put together this list to try and reach as many women as possible.

1. You are never too young to have endometriosis – 70% of teenagers with pelvic pain go on to be diagnosed with endometriosis.

2. Severe pain with your period or ovulation is not normal! Not all women with endometriosis have pain; some have pain all throughout their cycle. Pain is the most common symptom.

3. Painful sex is a key symptom of endometriosis and should be investigated. Pain with bowel movements, urination and lower back pain are other signs. Do not suffer in silence.

4. Pregnancy, a hysterectomy and menopause cannot cure endometriosis. Medical treatments (the pill) cannot remove endometriosis; they can help manage symptoms.

5. Infertility is not inevitable – it may mean that it is more difficult to become pregnant – up to 70% of women go on to have children.

6. Endometriosis is not just painful periods! It is a debilitating, chronic and painful condition that can go misdiagnosed as IBS, PID, STI, psychosomatic for years. The average delay in diagnosis Ireland is over nine years.

7. Endometriosis can only be diagnosed by a laparoscopy; it is a surgical procedure under general anaesthetic where a gynaecologist looks inside the pelvic for endometriosis deposits.

 

View this post on Instagram

 

sometimes the thing you’re most scared of being called is the best thing you can call yourself. thank you @havenstudiobk for labeling me… and to my sisters in this dizzying but starry slog- i am lasso’d to you!

A post shared by Lena Dunham (@lenadunham) on Apr 2, 2019 at 9:35pm PDT

8. Excision surgery offers the best chance of a pain-free life – other forms of surgery or treatments do not have the same success rate and women often experience the recurrence of their symptoms.

9. Repeated surgeries can damage fertility, cause chronic pain and be a further cause of adhesions. Choose your surgeon wisely, make sure they perform excision surgery and have experience in treating endometriosis.

10. You are not alone! There are 1 in 10 women living with endometriosis, 176 million worldwide. If you know ten women – you know endometriosis. The EAI have a wonderful secret online support group – email info@endo.ie to join.

The Endometriosis Association of Ireland offers support and information to women in Ireland who are affected by endometriosis. Learn more about them on their website here.

Photography by @alexachung.

Read more: ‘The shame and stigma around periods has to end’

Read more: Hidden illness: ‘I had to retire from work at 29 on medical grounds. I was devastated’

Read more: This eco-friendly tampon brand is helping to fight period poverty in Ireland