Why I #walkforendo: Andeep's story
"On average it takes 7.5 years for endometriosis to be diagnosed. From collapsing in a supermarket to being diagnosed, it only took 9 months. This is why I consider myself lucky. I’ve always had painful periods. Always. It started when I was 11. At school you’re told what to expect, that all girls go through it and there will be times of discomfort. Discomfort. What an understatement! I still remember when I was younger, and I passed out in the bathroom at home from the pain. Luckily, I managed to unlock the door and call out to my sister before dropping to the floor.
That feeling of being light-headed, nauseous, actually vomiting, not being able to stand or sit or sleep. That feeling like you’re being stabbed in the stomach or that someone has reached into your guts and is twisting it. That feeling when you need to go for a poo, but the pain is so bad you think you’re going to explode and pass out. Just so you know, it was like this even when I wasn’t on my period. But that’s normal, right?
I consider myself lucky because I have support from my wonderful family and my husband. Oh, my poor husband. We were only married for three months before the supermarket incident. We had to abandon our shopping and he half carried me home. He has put up with so much: from sitting with me, to comfort me, in the middle of night when the painkillers and hot water bottle haven’t worked; to sitting outside the bathroom when I’ve been on the toilet, making sure I haven’t passed out trying to poop! Don’t even get me started on my mood swings.
I consider myself lucky because I work for a company that focuses on its staff health and wellbeing. Sad to say I’ve been so embarrassed in the past to call in sick because of the ‘period pains’. It was important for me to share this with my line manager and some of my colleagues. I didn’t want them to think I was taking the mickey or anything like that. They are very supportive, which I am grateful for.
The pain isn’t just physical. It’s emotionally and mentally draining. You feel exhausted. You feel useless. You feel depressed. You feel alone. You feel like a failure. You feel like a spare part. You feel worthless. You feel sorry for yourself. You beat yourself up about it because ‘it’s just a period pain’. You feel broken. So broken.
You can become consumed by it. Looking to book a holiday? Let me check my period tracker. Looking for a night out? Let me check my period tracker. It’s no joke and it is beyond frustrating. The days where you’re looking forward to a night out, but out pops the endo-belly. Goodbye skinny jeans and fitted top. Hello leggings and oversized t-shirt!
I had my bloods checked, MRI scans, ultra sounds, internal examinations and even a colonoscopy. One thing the doctor confirmed was that I have irritable bowel syndrome (IBS). However, it wasn’t until I had the laparoscopy that they found the endometriosis snuggled up in and around my womb. Surgery was a relief, especially for the first six months or so. However, the pain continues. Not as bad as before the operation, but it’s still there. A couple of months will pass and it’s manageable. Then I’ll have a couple of months where it’s so excruciating, I’m crawling between the sofa and the bathroom. Those days are the worst.
It’s not a subject we can often openly talk about, is it? The Period. The Blob. Mother Nature. Time of the Month. The Painters. The Big P. The answer is no, but it should be. Thankfully the world is changing. A lot of cultures still see ‘the period’ as a taboo subject. However, with today’s education and experience in multicultural societies we are slowly talking about it more openly, which makes it easier to talk and write about it".
A huge thank you to Andeep for sharing. If you would like to get involved in our #walkforendo challenge, which is all about walking 7.5km in solidarity with those on the path to diagnosis, click here to sign up
Why I #walkforendo: Priya's story
Get involved in the challenge to and help us raise awareness and funds for Endometriosis UK.
In today's 'Why I #walkforendo' post, Priya talks openly about what it has been like for her as an Asian woman living with endometriosis, and talking about it amongst her friends and family. A huge thank you to Priya for being so open in talking about the challenges she has faced, and for raising awareness and helping break down the taboo in talking about endometriosis.
By being open, Priya hopes others will feel confident in sharing their experience too:
“Endometriosis. A very taboo topic. Not only do so many women suffer silently due to what is seen as embarrassing from a social standpoint but the more research I do, I have realised that I've not come across many Asian women who talk about it. Asian families tend not to talk to their daughter's about women's health and are usually raised not to talk about their monthly cycles to anyone, even in their own home. This is the same monthly cycle that allows for them to become parents, grandparents, uncles and aunties.. yet it is not considered an appropriate topic of conversation. On my journey of trying to understand this affliction better, I have slowly begun to confide in those closest to me. If you are lucky, like I am, those closest to you will also shower you with unconditional love and support. In my attempt to reach out to others I have been blown away by the number of people so close to me who have silently been going through the same thing. My aim is to try and create enough awareness so that no-one dealing with Endometriosis will ever feel embarrassed to talk openly about what they are going through.
I am here.
We are here.
You are not alone."
Living with endometriosis: Anna's story
Anna was diagnosed with stage 4 endometriosis two weeks before her 18th birthday. She's since had 11 surgeries, and now lives with a permanent ileostomy bag. She dedicates her time to raising awareness, as she wants to make people aware of just how debilitating endometriosis can be, and support other people going through a similar journey. Anna is also supporting our campaign for menstrual wellbeing to be taught in schools in Wales, as she says "it's vital young people learn about menstrual health at school. Without this, young people will suffer in silence, like I did, whilst navigating school and exams". A huge thank you to Anna for sharing her story.
This is Anna's story
For the past 12 years I have suffered with chronic pain which later I found out was due to Stage 4 widespread Endometriosis. From the age of 14-17 I wasn’t being listened to by medical professionals. It took a misdiagnosis and an emergency appendectomy surgery for them to finally take my pain seriously. My general surgeon who took my appendix out could see Endometriosis surrounding the organ, he referred me back to my previous Gynaecologist, but she refused to agree with his findings. I was later seen by one of the top endometriosis surgeons in the UK. The surgeon did a diagnostic laparoscopy where he found I was riddled with Endometriosis. I was officially diagnosed with Stage 4 widespread severe Endometriosis. I had so much disease they couldn’t remove it all in one surgery. That’s when they operated again 2 weeks later to excise the Endometriosis growing into my bowel, bladder, ovaries & tubes. That surgery took them 5.5hrs which included a bowel resection, catheter & a stomach drain. That was when my pain was validated, I felt listened too. But at the same time, I was completely blind sighted. I was 2 weeks away from my 18th birthday and had never even considered that I would be diagnosed with an incurable disease. You never think you are going to wake up one day and never be better.
Fast forward to May 2020 and I have undergone 11 surgeries due to this thankless disease which has left me with a permanent ileostomy, long term catheter, sacral nerve stimulator and a whole load of scars.
What has been your biggest challenge in living with Endometriosis?
My biggest challenge I have had to face whilst living with Endometriosis is accepting that my body has limits. I can’t be superwoman, and that’s okay. For years I would work all hours, try to be super active, say ‘yes’ to everything but I paid the price because I would be bed bound in agony or worse id be admitted into hospital. Accepting my limits has been something that took time. When my health deteriorated further 12 months ago that’s when I decided to step down from my position in work and work 1 day a week, I also started a beauty business from home so I can control the hours I work. This way it gave me time to focus on my family and I wasn’t compromising my health further.
Another big challenge was accepting that it had destroyed one of my major organs, my bowel. Facing a life changing procedure like a permanent ileostomy was a huge fear of mine, one that I didn’t think would ever need to happen. I learnt from that day on never to underestimate how destructive Endometriosis can be.
What advice would you give your younger self knowing what you know now?
It would definitely be to make your voice heard. Do not suffer in silence and don’t let anyone undermine your pain. Suffering in silence is no way to live. If you have a medical professional ignore your symptoms, then seek a second opinion. Do not be afraid to question their knowledge or to seek advice from others.
Finally, thank you so much for all you do to raise awareness of Endometriosis and for fundraising for Endometriosis UK. What is it that inspires you to talk so openly about Endometriosis?
Firstly, thank you for recognising that. I will always dedicate my time and energy into raising awareness surrounding endometriosis and the devastating impact it can have on someone’s life. Anytime I can host an event to raise funds for Endometriosis UK I will. Your charity helped me in so many ways when I was first diagnosed.
I always vowed when I was diagnosed that I would talk openly and honestly about my battle with Endometriosis so I could help someone in a similar position. For young girls to know they are not alone. For people to understand that painful debilitating periods are not normal.
I spent so much time searching for people who I could relate to when I was first diagnosed. I desperately just wanted someone to relate to and for someone to say, ‘I completely understand how you feel’. Suffering with a chronic disease like Endometriosis can be extremely isolating, so connecting to others has saved my sanity. It’s the positive side of social media is connecting with ladies all around the world who can relate to exactly what you are going through.