1 on 10 women suffer of endometriosis. It could be you, your sister, your daughter, your niece, a neighbor, a colleague, a friend... There are lot of chance/risk that a lady you know has it. This is why I decided to post this article here.
What is Endometriosis? It is not easy to simply answer this question because the causes are still uncertain and scientific keep discovering new element about it. What we know is that, some cells identic to the endometrium (lining of the uterus) end up outside the womb. Those cell respond to the same cycle as period and will bleed when the the endometrial mucosa breaks down. However, the blood as nowhere to go and it creates inflammations. The blood can go anywhere in the body and new cells attach to any organ. Some endometriosis lesions can be find on the diaphragm, heart... but more commonly on the intestines, the bladder, the ovaries, on the outside of the uterus...
Two symptoms that should never be ignored are Heavy* and painful period and pain during or after sex. But the list of the symptoms is long, really long, too long! (*An heavy flow is if you need to change your protection after less than 2 hours). There are as many symptoms than there are ladies suffering of it. Endometriosis and Adenomyosis (Endometriosis inside the uterus) are chronicle pain disease. You can have back pain, extreme fatigue, pain in the shoulder, bladder. Terrible back pain and belly cramps during the period. Vaginal pain during and/or after sex. Digestive and intestinal issues.
Video from Endometriosis Association of Ireland
Unfortunately, at the moment there is no cure for Endometriosis. There are treatment that can help slowing down the cell to spread and help to manage the pain. However, it is an hormonal treatment and it can sometime not help to manage the disease. Surgery can be needed. Endometriosis and Adenomyosis are also cause of infertility, this is why a diagnosis is so important.
- 1993: I was 11 years old and I had my first period. It was on the way back from holidays, in the car. First period, first stain.
- Since then, I always had terribly heavy and long period. They would last 7 to 10 days and I sometime would have to change pad every 30 minutes on the worse days. As a teenager, it made my life so complicated. At school, I had to skip sport once a month and the teacher would never loose an occasion to remind me in front of every one that my period should not be an excuse for laziness... I was afraid of having stain on my pants all the time and was always carrying a jumper that I could attach around my waist just in case. During exam or important stage of my life, I could not focused if I had my period and had to deal with the pain. I had so many sleepless nights crying and trying to find a position that would relieve the pain... And everybody, my mum, my granny, doctors were telling me that pain during the period is classic, normal. Every women have pain during their period. So I did let go, took a lot of anti-inflammatory drugs and keep living with this terrible pain once a month.
- Around my twenties, my period started to change (Sorry for the graphic details). It became more and more brownish, less bloody and with clots. Once again, we did some xray of my uterus, nothing and the doctor was still telling me that everything was fine. Nothing to worry about... Ok...
- 2010, I was 28 years old when I started to have a very bad gastritis and intestinal inflammation. More exam, same results... Nothing. The lining tissues of the stomach were damaged but no sign of inflammation in the intestines. My GP gave me a 3 months treatment that I took for 2 years but the symptoms were still here. For him, I was too anxious and should have take anti-depress drugs. It was in my head. Which is quite possible. When you have been suffering most of your life and no drugs give you any relieve, yes, after a while you become anxious and the conflict with your body can activate more pain
- 2012, my libido went really down and I started to feel pain during intercourse. This is when I realised that it had to be Endometriosis, all the symptoms were here. But I was just back to Ireland and did not know whom to turn to. I focused on get better with my stomach issue, started to look out my diet and do some meditation.
- 2014, I tried it again to my GP (in France) and asked what exam should we do to get a diagnosis. He answered me that Endometriosis was just a myth, did not exist. Women had to create a disease to cover their lack of productivity during their period... I never saw this doctor again.
- 2015, back in France for pill renewal, I met another doctor. A young lady. I tried again to talk to her about Endometriosis. She checked my lower belly and straight away told me I should get a good gynecologist back in Ireland, because yes, it was definitely something to be check. And that's what I did!
- Finally, July 2017. Because it takes a while between appointments, X-Ray, meeting with the surgeon... I had my diagnosis after a laparoscopy. Light Endometriosis, a cysts removed from the left ovaries and severe Adenomyosis.
- I tried the hormonal pill to see if it would help to manage the symptoms. Unfortunately, I am one of those for whom it make it worse. So I decided to stop and we wanted a child with my partner. So I started an anti-inflammatory diet and really helped to have less daily pain.
- In May 2018, I became really sick again. Terrible stomach pain, I could barely eat for about 3 weeks. I soon realised that I was not sick but pregnant. But we lost the fetus around 10 weeks and needed a curettage. October 2018, once again, another miscarriage. So I went back to the surgeon because I know that Endometriosis can be source of infertility.
- February 2019, I had another surgery. This time it was an hysteroscopy to clean the endometrium. The Adenomyosis was making the nidation impossible. I was lucky enough to get pregnant but every time the egg will fall.
- And finally, despite all those year of suffering and doubt and after some very dark time, our little rainbow baby; Rose was born in December 2019.
It took me 7 years between the time I first though of Endometriosis and the time I received a real diagnosis to explain my pain. 7 YEARS, is the average time needed to get a diagnosis. 7 years of doubt and pain. 7 years, is a really long time!
MARCH is the awareness month of Endometriosis, share my story, share your story. Listen to any girl or women who would talk to you about similar symptoms. Because the sooner we have the diagnosis and easier it is to get back on your feet. 1 on 10! So, we have no excuse today to ignore those symptoms and keep telling it's normal. No it's not. HEAVY PAIN during period IS NOT NORMAL.
If you need help, information or to talk with someone, you can contact Endometriosis Association of Ireland: https://www.endometriosis.ie/