Here endo warrior Suzan Yasemin Selçuk, Founder of Crazy Creative Cool talks us through getting diagnosed with stage 4 endometriosis and the impact this had on her mental well-being.
I was told that my bowel, womb and ovaries were all fused together. I needed to have a radical resectioning.
“I was diagnosed with Endometriosis in 2018 after 16 years of being told my symptoms were in my head and that I had a low pain tolerance! Ever since I started my periods, I struggled with period pain and was always told it was completely normal by doctors. I was encouraged to go on the pill at 18, which slightly masked the symptoms for a year or so. However, after making the personal decision to come off the pill due to being on a natural health journey, the excruciating pain came back immediately and with a vengeance.
My symptoms got worse and worse…
For years after this, my symptoms got worse and worse. It got to the point where I was in pain daily. I had pain around my stomach area, shooting/aching pains down my legs and in my back, digestive discomfort, brain fog, low energy and low mood. After being laughed at and ignored by countless doctors AND gynaecologists, (none of who would investigate further than telling me I had IBS), one finally listened to me and I had a diagnostic laparoscopy in May 2018. I was told at the time that if any Endo was found, they would remove it. However, after coming around from the surgery, a doctor told me that I actually had stage 4 Endo and Adenomyosis, and in his words, that “everything was a mess inside”.
I really believe that if I had been taken seriously years earlier, I would have been able to take steps to manage my health holistically through diet.
Next steps…
Basically, they wouldn’t touch any of it because it was so advanced and required a highly experienced surgeon. I was told that my bowel, womb and ovaries were all fused together. I needed to have a radical resectioning, which meant cutting the endo from all of my organs. This was a complex and high-risk procedure. My second surgery was at the end of August. I was in theatre for almost 6 hours and lost half an ovary in the process. Afterwards, I was advised to take hormone therapy to shut down my ovaries and put me into artificial menopause to stop the disease from progressing further. I really believe that if I had been taken seriously years earlier, I would have been able to take steps to manage my health holistically through diet. This is an inflammatory disease and even small changes like cutting out meat, gluten, soy and dairy can slow the growth.
How has your condition affected other areas of your life?
Dealing with daily chronic pain is difficult and it really impacted my career. At the time of my diagnosis, I was working as the creative director for a small fast fashion label. This was a brand I co-founded (but didn’t own) and had built up over 7 years after graduating at uni. My illness had greatly affected my mental wellbeing, self-esteem and ability to work under pressure. This is something that is definitely needed in a fast fashion environment! I was constantly in pain and feeling fatigued. This, combined with a lack of support and understanding of my condition at work, left me with the difficult decision to walk away from my job. I had a few months being unemployed while I battled with my health and underwent both of my surgeries, before deciding to become self-employed. This was the only option for me, as dealing with chronic illness means I never know how I’m going to feel on a daily basis. Being in control of my own schedule, stress level and workload is so important!
Endo has also impacted my relationships as during flare-ups (which are regular) I just don’t want to leave the house. I struggle to be social, which can be difficult for other people to understand if I cancel plans regularly.
How does this challenge you mentally?
For me, the biggest challenge has been to find ways to push past my diagnosis. When you’ve lived with an undiagnosed illness for so long, as soon as you get a diagnosis, it’s almost like you find a part of yourself that was missing. Everything suddenly makes a bit more sense. You find support groups and other people to relate to, which is amazing. However, for me, I found that I was becoming too absorbed in my illness. I was talking about it constantly, hating my body, feeling angry and let down by health care professionals (all of which is justified). But, I found that I was almost using it as an excuse to think, act and live a certain way.
I personally really believe in the power of our thoughts. For me, being in a negative thought pattern cycle made me feel so much worse physically as well as mentally. Now, I work every single day on retraining my brain and finding good things to focus on.
I was giving Endometriosis way too much power. Yes, it’s impacted my life. Yes, it’s unfair that I wasn’t listened to earlier. But that’s what happened to me – it’s not who I am! I’m not an angry person, but I found myself with a lot of negative emotions. This was because I was dwelling on what had happened to me, instead of accepting it and using it as fuel to heal myself. I personally really believe in the power of our thoughts. For me, being in a negative thought pattern cycle made me feel so much worse physically as well as mentally. Now, I work every single day on retraining my brain and finding good things to focus on, doing small daily things for my mental and physical health that I can control.
How do you overcome these challenges?
Now that I’m self-employed, it’s even more important for me to be able to maintain a strong mindset. One of the hardest thing about living with an invisible illness for me is the ‘brain fog’ that comes with it. I find it really hard to focus sometimes. When you’re self-employed, the only time you’re wasting is your own – and nobody is paying you for it!
To overcome this, I have had to really commit to how I treat my mind and body. I’ve been pretty health conscious for the last 6 years and due to my surgeries, had to stop training and moving my body. This really put me in a negative mindset. I wasn’t moving much, as I was practically stuck on the couch for 4 months recovering! When you’re in that situation and at home / in pain all the time it’s so easy to feel really sorry for yourself (which is, of course, valid). It’s easy to find comforting in unhealthy food and not anyway near enough movement. It can be a really vicious cycle of wanting to get better, feeling like your body is giving up on you, then giving up on your body.
Breaking the cycle…
When we live with a chronic illness, it’s so difficult to break the cycle, because it’s not something a lot of people understand. We feel alone, let down and ignored by medical professionals. We find ourselves constantly dwelling on our situations, instead of thinking of ways we can take back control – even if it’s in the smallest way. Things like moving our bodies with gentle exercise (which believe me, is the last thing we ever want to do when we’re in pain!) is not only amazing for our lymphatic system and immune system (two major parts of our bodies that have a big influence of chronic diseases and inflammation) but incredible for our minds. When we’re static, our minds and body are static. The blood doesn’t move freely throughout the body, so the lymphatic system can’t do its job and clear out toxins. Scheduling in a daily walk, even if it’s just for 10 mins, has completely transformed my mindset towards my illness. It has made me feel so much stronger and healthier!
I’m personally not a fan of the “I hate my uterus” style support groups. I think we need to treat our bodies with compassion so that we can support ourselves on our healing journey.
Have any support groups helped you?
When I was first diagnosed, Nancy Nook’s Facebook group for Endo was a big help. Finding Peace With Endo is also an incredible, uplifting natural health support page. I would strongly advise any Endo sufferers to be mindful of the support spaces they are in. Support groups can be a lifeline when you are struggling to get diagnosed, about to have surgery or recently diagnosed. But, visiting these groups on a daily basis is consistently affirming our chronic health struggles. Some of them can be negative and I’m personally not a fan of the “I hate my uterus” style support groups. I think we need to treat our bodies with compassion so that we can support ourselves on our healing journey. For me, my mind and body are so linked, that if I’m constantly thinking about how much I hate my body and that I have to live in pain like this forever, then my pain just gets heightened and my mood gets lower. This then leaves me with no energy or motivation to help myself. That’s just my personal opinion though. If that kind of group works for you and helps you – that’s amazing!
How do you practise self-care?
Walking, journaling, reading – I love anything that helps me to stop overthinking and being able to process my thoughts and emotions. Eating well is really important to me too. I love eating fresh, organic, alkaline foods that help my body to heal and make me feel so good! Being aware of what I put on my body and trying to use natural products as much as possible – from body oil and shampoo, to nail polish and tampons – it all makes a difference to our toxic load. Knowing I am helping my body as much as possible and supporting my overloaded liver to excrete and neutralise toxins, makes me feel better about my health.
How do other Endo warriors help you overcome these challenges?
Other Endo warriors have helped me to feel less alone in my journey and have been a great source of advice when it came to having surgery. It’s such a scary thing and there are so many horror stories out there online, so to be able to connect with real women who have been through these operations and come out the other side was a big comfort.
And finally, what’s Crazy Creative Cool all about?
Crazy Creative Cool is a platform dedicated to making mental wellness a priority for women suffering with their mental health and/or chronic illnesses. Providing tools and support to build confidence and self-esteem. We create journals, tools and planners to help women to believe in their own creative energy, acknowledge their negative self-talk and replace it with positive action! It’s all about understanding our minds, the way they work and the things that affect them – then looking at the things we can personally control and creating the change we want to see in our lives from there.
A huge thanks to Suzan for sharing her story and writing this inspiring post for us. You can check out CrazyCreativeCool via their Instagram here and find Suz on Instagram via (@sy.selcuk). For more awareness stories about Endometriosis, check out Sinead Smyth’s story here.
