Endometriosis Awareness Month

Artist Credit: MARTA PUCCI @martipucciofficial

Despite being a chronic condition that affects 1 in 10 women in the UK and worldwide, Endometriosis is still largely unheard of. This illness occurs when tissue similar to the lining of the uterus grows in other places. Treatment usually involves medication or surgery, depending on the severity of symptoms, however these measures only help to manage Endometriosis. Currently, there's no cure.

March is Endometriosis Awareness Month in the UK, and SevenSix Agency is excited to announce our collaboration with @veritieswellnessa wellness community that provides the tools to keep all areas of your wellbeing in check. We have brought together six women who suffer from Endometriosis to share their journeys from pre-diagnosis to post-surgery. 

Listen to the audio here!

What symptoms initially started your journey to diagnosis?

Verity, 22, founder of Verities Wellness

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I was 16 when I first went to the doctor with what I now know are symptoms of Endometriosis, as well as bad skin. I came off of the pill when I was 18 and still had the same symptoms, so I knew something wasn’t right. Symptoms included a really heavy flow, iron deficiency at one stage, severe period pains, sharp pain when I go to the toilet on my period, bloating, etc.

 

Venus, 29, illustrator, presenter and sex educator

I've always had awful periods, bloating, painful sex, and severe depression. I was always told I had IBS and that everything else was a normal part of being a woman. One evening I went to the toilet and felt the most horrendous pain after peeing, which lasted 20 minutes and then I’d need to pee again, meaning the pain would start over.

I went to A&E and had several tests and scans done but nothing was found. This happened on three occasions and the same process would happen all over again. I then went to an Eve Appeal event where I heard Endometriosis for the first time and started to connect the dots. The day after I booked to see a gynaecologist who later diagnosed me.

 

 

 

Priya, 31, primary teaching assistant

Before diagnosis, I experienced food intolerances which would cause me to be sick, as well as bowel and pelvic pain. Endo affected me daily with severe flare ups and chronic fatigue which would stop me being able to get out of bed or even turn over.  Sharp pains down my leg would stop me from walking and a weakened immune system prevented me from carrying out daily activities and chores. 

How long did it take for you to have your surgery/diagnosis?

Krystal, 33, creative producer

02-07-2020-20-12-35My diagnosis was a very long and drawn out process, I guess I’ll never fully know how long it took. My periods have always been irregular, and I had years of check ups and ultrasounds where nothing was detected. Then the pain reached a new level of unbearable- I got to a point where I would lay awake debating whether to go to A&E or not. 

In 2018 I had a very traumatic scan with a nurse who told me my womb was ‘very irregular’- I remember leaving the hospital that evening hysterically crying. The NHS scan results wouldn’t be back for two weeks, and I couldn’t afford to wait that long, so I saw a private gynaecologist, who confirmed it was Endometriosis. After my operation, they said I was about stage 4 which is pretty severe. The NHS didn’t even suggest surgery as an option for me, so who knows how long I would have been suffering for.                                                                                                         Krystal post-surgery

Tanya, 29, domestic abuse housing manager

It took me around nine years to be diagnosed. I started experiencing Endometriosis symptoms whilst I was at university. As I got older, it got worse as I started fainting, vomiting, bleeding irregularly, and calling in sick to work. I felt like my body was on fire every time my period came and I couldn’t function without taking medication. I was told that it was ‘normal for someone of my ethnic background’, normal for my age, and was constantly sent away with painkillers which got stronger each time I went to the doctor. 

A community gynaecologist advised me to get pregnant or take the pill continuously to stop my periods. When I was formally diagnosed by a specialist a year and half later, my Endometriosis was so severe, I’d need a minimum of two surgeries.  

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Rianna, 24, fashion stylist and talent manager

I've been back and forth with the doctors since I was around 18 trying to get a diagnosis. They always knew something was wrong but never actually figured out what- I was misdiagnosed with appendicitis at 19, which led to my appendix being removed. After a lot of back and forth with appointments, scans and medication, I was finally put on the emergency list, at 23 years old, for surgery to remove my Endo cells, and finally had surgery in November 2020, at 24.

 

Rianna post-surgery

How did you feel after your diagnosis?

Krystal: I felt relieved. I knew I wanted to do the surgery, and that it was a proactive decision, rather than just going through the monthly pain. 

Venus: I remember feeling scared because I didn't understand what this meant for me and my future but also relieved that they found something and I wasn't just imagining all the pain. The most upsetting news you hear when you're diagnosed, is that there is no cure.

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Verity: I feel like I wasn’t going crazy for all those years that I felt something wasn’t right but was told I was fine, now I am aware and can work on staying well and taking care of my body properly. I feel that there isn’t enough research into Endometriosis, it also affects men and I didn't know this until a few months ago. I also think there is a lack of openness from medical professionals around holistic practices for Endo, which further deters people with Endo from trying them. Certain holistic treatments have had great testimonials, but most GPs would laugh if you suggested that as an option. 

Verity post-surgery

 

Tanya: To have a diagnosis felt like my pain had finally been validated after so many years of fighting for answers. It felt like a weight had been lifted. 

Priya: My pain started to make sense. It was an emotional feeling that only those who go through the fight silently and alone will understand. I actually refused surgery at first when I found out it was most likely Endometriosis, because it had taken over two and a half years for a doctor to listen and help. I had become so weak emotionally, physically and mentally. 

When feeling well photo 2 Priya

How does Endo affect your day to day?

Verity: Luckily for me, Endo doesn’t really affect me on a day-to-day basis. It’s more when I’m on my period/the lead up to my period. Since my surgery, blood loss has somewhat decreased, but I still get bad pains when I’m on. 

Venus: The pain, the bloating, and the fatigue. When the pain is at its worst it affects all my body, not just my lower body. Nothing ever fully removes the stabbing and achy pain you feel. I hate bloating the most because not only is it painful, it makes you feel like absolute rubbish. Your clothes don't fit, you don't eat and your mental state goes downhill from feeling like your body is pulling you in every direction.

Rianna: I suffer with serious bloating and random pains nearly every day. I have also suffered with issues with my bowel for as long as I can remember, due to the Endo being around that area. 

Have your symptoms gotten worse since you first consulted a doctor?

Krystal: My Endo now is fairly under control. I get checked every 6 months, and with the help of the surgery and contraception, I have a manageable level of pain and blood.

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Tanya:  From diagnosis until now, I’ve had a laparoscopy to remove severely deep infiltrating Endometriosis from my bowel, bladder, urethras and pelvic organs. I’ve also had further surgeries on my urethras, and stents fitted temporarily to support my kidneys and bladder, as well as an MRI, endoscopy, colonoscopy, cystoscopy, and numerous blood, stool and urine tests. 

My Endo came back ten months after surgery but my pain has been a lot more manageable than pre-surgery. I wasn’t expecting it to come back so quickly and it scares me to think about the future and what treatment options will look like. Fatigue affects me a lot at the moment- sometimes it feels like my body can’t manage anymore, but I know how important it is to listen to my body and give myself a break. 

Tanya post-surgery

Rianna: Since having my surgery my periods have gone from every 3 weeks and 3 days, for 14 days, to every 15 days for around 9 days (so more frequent but for less days). I am still bed-bound for at least 4 of those days. 

Have you taken any hormonal contraception. If so, how has that affected you?

Verity: In reflection I was very down and depressed during the time that I was on the second pill, I’m unsure if this was solely impacted by the pill but I feel as though it didn’t help. 

Venus: I went on Zoladex for 2 months before my second surgery to help reduce the Endo so it could be more easily removed by the surgeon. I highly recommend doing your research on this drug before accepting it, something I wish I had done because it honestly ruined my life for 2 months. Now I have the Mirena Coil fitted which has stopped my periods but hasn't helped the pain. 

Priya: My symptoms became worse and reversed everything I did in the last 9 months to manage my pain and energy. Instead, I’ve been managing my pain with lifestyle changes and natural remedies. These changes were something that my gynaecologist was against but have been a lifesaver! 

Tanya: While it eased my symptoms along my journey, it has definitely masked a lot of them, which I feel has contributed to a delay in accessing treatment/having the issue investigated earlier. 

Rianna: They have been the worst thing for my body - I literally had every side effect possible. Moodiness, cravings, bad skin, extra hair growth. Hormonal pills didn't help at all.

IMG_3175Artist Credit: HANNAH DAISY @makedaisychains

Resources

The Verities Wellness platform is also home to The Variety Pod, a wellbeing podcast with amazing guest speakers that share their insights and life experiences. Here is a list of charities and online safe spaces that raise awareness and provide support for Endometriosis sufferers. 

If you're experiencing any Endo-related symptoms, please write them down and visit a GP.

 

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