1 in 10 women have Endometriosis. That’s why this Endometriosis Awareness Month people from all over the world are standing together and sharing their story with #1in10. We spoke to Sally, from Letsovershare, a place for kindness and community.
Here Sally shares her story of getting diagnosed with Endometriosis, living with the chronic condition and how she stays positive being part of the community of Endo Sisters:
It started at an early age
“I was 13/14 when I saw my first G.P about the lower back pain, fatigue, pain in my abdomen, IBS like symptoms and irregular and heavy flow. I explained how it was completely disrupting my life and how concerned I was about what was going on. They told me a few things during this appointment. Firstly, that ‘these sorts of women’s issues tend to sort themselves out as you get older, especially after a pregnancy.’ Secondly, ‘unfortunately periods can just be unpleasant, so I suggest taking some paracetamol and that should help you carry on life as normal’.
Turns out that paracetamol didn’t quite cut it. Nor did the many types of contraceptive pills I tried. My pain was getting worse with each passing month, but I persisted and kept going to my GP. I had missed most of my G.C.S.E years and now I was struggling to hold down a job. On my journey to diagnosis, I have been treated for chlamydia, IBS, Depression, constipation and been given something for my menstrual cramps. At this point, I gave up and started to believe that it was all in my head, just like the various doctors I had seen told me it was.
It was not ‘all in my head’
At 20-years-old I had a terrifying experience. I was home alone, and I was bleeding heavily and in excruciating pain. Every move I made sent an electric shock through my whole body. I had to rush to A&E because it felt like something very serious.
When I got to A&E they did all the normal tests to make sure it wasn’t an ectopic pregnancy or anything like that. All the tests came back fine. The doctor working the A&E department said to me ‘I’m pretty sure that you have something called Endometriosis, I am going to contact your G.P to make a referral to see a gynaecologist.’
Getting a diagnosis felt like a relief
Surgery is the only definitive way to diagnose Endometriosis. After my first operation, it was confirmed that all these years I had been dealing with adhesions and scar tissue caused by the condition.
An odd sense of relief came over me when the surgeon told me it was Endometriosis. I was ready to research everything there was to know about the condition. I learnt that 1 in 10 women have Endometriosis and it takes on average 7.5 years to get a formal diagnosis. That is a shockingly long time considering it is the second most common gynaecological issue. The symptoms are caused by cells just like those shed during a period, which are found outside the womb. So when hormones are released, the cells shed but have nowhere to go. They end up causing scar tissue and adhesions that can be found throughout the body, most commonly on the ovaries, bowel, bladder and in the pelvic cavity.
Living with Endometriosis
So, 16 years on from my first symptoms I am 3 surgeries down. I have tried various hormonal treatments and different combinations of medication for the pain. My mental health has been up and down because of the symptoms and what seemed like a very uncertain future, as well as the isolation that can sometimes accompany having a chronic illness. Despite all of this I am in a good place now. I manage my symptoms with pain relief, mindfulness, CBT and listening to my body, especially when it tells me to slow down and take it easy. I have learnt to be my own advocate in appointments regarding my health and to look at my options with a holistic approach.
Standing together as #EndoSisters
There are plenty of things I wish I had known back then. That is why I started my Instagram account. I searched the hashtag #Endometriosis one day and discovered this incredible community of women who were supportive, kind and understood what I was going through. These women are all standing up this month to say “I am 1 in 10” and show the world how common Endometriosis is.
On my account, these are the main themes that we explore (and its useful advice for anyone with Endometriosis):
Sometimes it can feel like no one understands what it is like to have Endometriosis. So I think it is so important to have a good support system. Within the Instagram community, I have experienced kindness, understanding, support, encouragement and love on a whole different level. It genuinely overwhelms me with the warm and fuzzies daily. So, I encourage people to find their tribe and love them hard. There are incredible support groups that you can go to and Endometriosis U.K has a support line you can call. Don’t ever be afraid to ask for help, you are not a burden and there are people out there who can help.
If you think that you have Endometriosis then educate yourself on the symptoms. Create a diary of what you are dealing with on a day-to-day basis so that when you visit your doctor you are prepared.
Mention Endometriosis to your doctor because it isn’t always the first thing they think of – the symptoms are similar to other conditions. Even after diagnosis, research different treatment methods and surgeons to discuss with your G.P. Investigate different kinds of therapy that have a holistic approach to managing Endometriosis.
My heart breaks when I think of every person who has been on the same or similar Endometriosis journey, so I try to raise as much awareness as possible. I am no longer embarrassed or ashamed to talk openly and honestly about the good, the bad and everything in between when it comes to bodily functions. Future generations need to be taken seriously when experiencing pain. They shouldn’t have to wait 7.5 years +. I encourage people to talk freely about all things related to periods and break the stigma that surrounds it. It isn’t something to be ashamed of and it isn’t something dirty that should be kept a secret.
Positivity isn’t going to cure my Endometriosis, but it has made my quality of life so much better. A diagnosis isn’t a life sentence. Yes, there will bad days. Yes, there will be things that you can’t do or have to adapt your approach for. Despite all that, your life still has a lot of potential to be incredible.
Take the time to find what works best for you. The sanitary products that you love, portable methods of pain relief, foods that don’t irritate your digestive system. Put together a survival kit and take it everywhere.
If you need some inspiration, in mine I keep:
- Stick on heat pads that can be discreetly worn under most outfits
- Spare underwear
- A pair of leggings for when that ‘endo belly’ shows up
- Any medication that I’ve been prescribed
- Bottle of water
- Sanitary products that don’t irritate my skin and make me feel confident that I won’t leak
- A little bar of chocolate
Something that I also found helpful is keeping a gratitude journal and celebrating the small things. On bad days it can feel like everything is going wrong. But when you take a little time to think about all the good parts of the day, you remember that even though your body has tried everything to keep you down, you have been strong and didn’t give up. Instead of writing a ‘to do list’ try writing an ‘I’ve accomplished list’. A little bit of positivity can have a huge impact on your life.
This is my story, but what’s yours?
Does any part of my story ring true for you? It’s time for you to have a conversation with your doctor about Endometriosis if it does. If someone you know is struggling, then get them to research Endometriosis because maybe it is something they haven’t heard of before. If a friend, partner or family member has Endometriosis then be kind and don’t be afraid to ask questions to find out the best way to support them. I am not defined by my condition, but it is a big part of my life. 1 in 10 women have Endometriosis but, everyone’s story is different. Maybe telling your story could help someone out there feel less alone.
Thank you so much to Sally for sharing this very honest, real and inspiring story. To follow Sally and be part of the Letsovershare community, head over to Instagram. For more stories about living with Endometriosis, read Jaimee’s story here.