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01-Mar-2019

 

Endometriosis Awareness Month

Today marks the first day of Endometriosis Awareness Month. Over 95,000 women in Northern Ireland live with this often debilitating condition, yet we know from the work we have done with people living with the condition that many have to wait years before receiving a diagnosis. In our blog for this week, Robyn Atcheson from Newtownards shares her experience of living with the condition…

Hello! I’m Robyn!  For endometriosis awareness month I wanted to share my story of living with the condition and to let other women in Northern Ireland like me know that whatever you’re battling, you’re NOT alone.

Endometriosis (or ‘endo’ for short) is a gynaecological condition where tissue similar to the lining of the uterus is found elsewhere in the body. Endo can cause debilitating symptoms, including (among others) painful, heavy periods, painful sex, bladder and bowel issues, infertility and fatigue.

My symptoms began at the age of 12. My periods were extremely heavy and painful, I knew that what I was experiencing was not “normal”. But every time I went to the doctor, I was told that it was just part of being a woman. I was sent to different specialists, paediatrics, general medicine, everywhere but a gynaecologist. I was misdiagnosed with IBS and ‘growing pains’.

When I turned 18 I was finally referred to a gynaecologist, however I felt that they didn’t believe that my pain was real. I was examined and scanned and told there was no way I could have endometriosis, even though I had a family history of the condition.  At one point, I was put through an artificial menopause. This only made things worse and I ended up in hospital. During a week’s stay, I was told they could find nothing wrong with me and recommended speaking to a psychiatrist as the pain was all in my head.

At this point I demanded to see a specialist in endo.  Even he did not believe I could possibly have the disease. He agreed to do a diagnostic laparoscopy, a surgical procedure using a camera to look for endometriosis, but warned me that he would not find anything. When I awoke in recovery, I found out my pelvis was covered in endometriosis and I needed further surgery to remove it. I finally had a diagnosis at the age of 23, 11 years after my first symptoms.

Sadly, my story is not uncommon. One in ten women have endometriosis. The average time people wait for diagnosis is 7.5 years. There is a misconception that it does not occur in young girls and not all gynaecologists are specially trained in how to treat the disease. The gold standard of treatment is excision surgery, literally cutting out the disease wherever it is in the body, but unfortunately this is not offered everywhere. Laser surgery or ablation is much more common but it only removes the top layer of the disease and so it often comes back, meaning women have to undergo repeated surgeries to manage the condition.

During the years I spent undiagnosed endometriosis ravaged my body, but on the outside I looked perfectly “normal”. The damage it has done to my body has left me disabled and unable to work full-time.  Despite all this, I managed to graduate from Queen’s in 2018 with a PhD in History and won a national award for my research into the history of medicine in Ireland.

Unfortunately there is currently no cure for endometriosis, but for the time being mine is under control thanks to the excision surgery and treatments I use.  I am so grateful for the doctors I have now, the friends I have with endo who I can turn to for support and for my incredible mum who cares for me every day. 

Women need to be their own advocate when it comes to their health, especially for conditions such as endometriosis. I know from speaking with others that live with endo that I am not alone in being constantly told that it is all in our heads, that painful periods are just a part of life, that we don’t understand our own bodies. If I’ve learnt anything from my life with endo, it is that sometimes you need to shout to be heard. You need to do your own research and find a specialist and treatment that works for you. For some women, hormonal treatment can help, for others, dietary changes. For me, pelvic physiotherapy massively helped me to try to re-train the muscles that had been forever damaged by my condition. For me, amazing pain management from the Chronic Pain clinic meant that I could achieve my goals – I even thanked them in the acknowledgements of my thesis!

In Northern Ireland we currently do not have a dedicated service or specialist centre for women living with endometriosis.  I feel that there is a gender bias in medicine that desperately needs to be broken. We live in a conservative society that doesn’t like to discuss things like periods, but we have to. We need to break down the stigma associated with periods and women’s health so that no 12-year-old girl has to go through what I’ve gone through and fight for 11 years for an answer, while her body is being mangled on the inside.

If you have endometriosis and would like advice or support on living with the condition, please visit: https://www.endometriosis-uk.org/ or call their helpline on: 0808 808 2227.

NOTE: We are having problems with our comments system on our blog and would like to extend an apology to people who have previously experienced issues.  The PCC will soon be launching a new revamped website and so we have decided to disable commenting on the blog until our new site launches.  In the meantime, if you are still keen to share your views on what you've read, why not tweet us @PatientClient or email us at: info.pcc@hscni.net

 
 
 

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