Endo warriors – how the endometriosis community is coming together
Endometriosis is a hugely debilitating condition and one that most women wait between 3-15 years to have officially diagnosed! For an endometriosis sufferer, inflammation may occur not just in the womb but also in all other organs where this tissue may have spread to, thus multiplying the level of pain. But the pain is often not limited to just their periods and endometriosis sufferers often suffer consistent pain outside their normal period cycle.
We want to raise awareness of the condition Endometriosis and bring together a community of ENDO warriors. Join us and share the awareness with #EndEndoSecrets
- 1 in 10 women of reproductive age in the UK suffer from endometriosis. .
- 10% of women world-wide have endometriosis - that's 176 million worldwide.
- The prevalence of endometriosis in women with infertility.
- Endometriosis is the second most common gynaecological condition in the UK.
Tell your ENDO battle and help others to understand.
We caught up with some of Lux Organic Customers to understand the condition even more. We hope that this helps you if you are a sufferer and please do head over to Instagram and tell us your endometriosis journey.
OUR ENDO WARRIORS ��⠀
Meet Erika @swiftrebeline⠀
Erika suffers with Endometriosis and has battled getting diagnosed since age 17.
I got my period for the first time in the last month of 2005. I do not remember it as being painful back then, but I do remember spending hours on my bed napping the pain away no later than a year and a half later. I had always had pains, which in hindsight may have been endometriosis more than actual colic. By the time I was 17 in 2009 I was having regular days off school, but my doctor said that the pain was associated with being a woman and prescribed Ibuprofen.
In 2014 I started the mini pill due to another medical issue, and my period disappeared for up towards 10 months initially, which was a relief, but it wasn't enough. In the fall of 2015, I was diagnosed with idiopathic neuropathy and was subsequently on futile pain relief treatments until
I was still taking the mini pills. I got married in the spring of 2017 (in fact, our anniversary is March 4th), and I had a feeling I may have endometriosis, and having known my husband for 10 years already, he had an odd feeling Something was wrong, so I started pushing for a diagnosis. I was seen by a private gynaecologist, who on the ultrasound did not find anything. She diagnosed me with
multiplex endometriosis and suggested an IUD or going home and starting to try.
That was June 2017. I refused and IUD. I was 24 and a year into my master’s degree, and I was newlywed. I pushed for a second opinion which turned into a third at a private hospital. They both found the same as the initial scan, but the private hospital offered an explorative surgery, which I accepted. In January 2018 I was finally diagnosed with rather widespread endometriosis, which was unfortunately removed by ablation. I was pain free for 3 weeks, and we had been told my tubes were completely blocked.
I stopped birth control in June 2018 - what was the point? It does not control disease progression, I could not conceive and as it turns out, it only made my pain 150% worse. I was able to stop most of my pain meds after this, and I would Consider myself well-managed on OTC meds and a muscle relaxant.
In May 2019 I tested positive having fallen pregnant spontaneously. My treatment up till May 2019 happened in Denmark, a country severely lacking in medical skills and competence when it comes to endometriosis. Their gold standard is ablation.
I am no longer living in Denmark, and I can count myself among the lucky few Danish patients who seek treatment abroad and get the help they rightfully deserve and need.
My diagnosis came 11 years late, and the surgery caused me so much pain I had to stop doing ballet and being too physically active. We are 1 in 10. This is why we share.
Meet Ella @Endoandella
My name is Ella and I’ve only recently been diagnosed with endometriosis and interstitial cystitis. I started having acute severe pelvic, lower back and hip pain, nausea, vomiting, bloating, bowel and bladder issues and pelvic floor dysfunction 3 months ago. Before that symptoms of endometriosis and interstitial cystitis had started appearing but it took a while to piece together what was going on. I Spent Christmas Day in emergency where I was told it was possibly pelvic inflammatory disease and was sent home with antibiotics and no pain relief after telling them I know it’s not PID because I have had it before, and this pain is different. Returned to hospital less than a week later with the same symptoms but worse.
Spent one week in hospital trying to figure out the cause, yet no doctor could give me any answers. The mention of possible endometriosis only occurred when being discharged and to get a follow up ultrasound. Returned again to hospital where I was adamant that it was end of after doing extensive research. The doctor didn’t listen or believe me but agreed to do a diagnostic laparoscopy. Long story short she went in only my uterus and didn’t find anything. This caused a lot of confusion and frustration, yet I was still sure something wasn’t right, and it was endometriosis. I was refused pain relief by doctors and made to feel the pain was all in my head. I finally got discharged and I decided to seek more help by going to an experienced gynaecologist. The second I saw her she was adamant I had endometriosis and knew the surgery was done by a doctor with little experience and education on endometriosis. I was booked into surgery and finally feeling hopeful something would change. 4 weeks past and I was so nervous and anxious nothing would be found. How wrong I was, everything that I thought was happening was, but far worse than I had ever thought.
My doctor found endometriosis on my uterus, back of my uterus, bladder, and my bowel, Fallopian tube and ovary were stuck together with endo. I had a large cyst on my Fallopian tube and interstitial cystitis was discovered.
The relief of finding something was both a relief and heart-breaking. I knew I would have to learn to live with this chronic illness forever. Not all endo was taken out because it was too risky, but I am learning and trying my best to manage the pain and get back to my old self best I can.
Meet Hannah @endodiaries
My name is Hannah and I have been diagnosed with Endometriosis since February 2019 however silently suffering for almost 12 years. I am 1 in 10.
When being diagnosed with Endometriosis, no medical professional told me the struggles I may have with fertility, this is something I have had to learn for myself with doing endless research and talking to others online who also have Endometriosis and others who are also struggling to conceive. I was told after my diagnostic laparoscopy that my fallopian tubes were blocked. In the past month, I have had a procedure which has successfully unblocked my tubes, most possibly the best news I have had all year!
The information I have learnt since my diagnosis has and still does worry me. The thought and feeling of failure torment me every single day and I didn’t realise how hard it would be and how much it would impact each day of my life. My lifelong goal is to have a baby and to be able to one day make my husband a father. I have had many blood tests to get me ready in preparation to be referred to a fertility clinic if I do not conceive by December 2019.
Please, if you know someone who suffers with endometriosis and needs support tag them in. Let’s support each other and bring this community closer together.