Half Dutch and half Norwegian, Cathelijne Schuitemaker-Wichstrøm relocated to Barcelona in 2018. She lives with her partner and puppy, close enough to the beach for morning walks, but endometriosis affected her new life.
It’s Friday 1 pm. The sun is shining, and my puppy looks at me expectantly. She’s excited to go out for her lunch walk. Unfortunately, I cannot take her.
I’ve returned to my bed, trying to keep my tears from streaming down my cheeks.
After some morning meetings – where I could conveniently hide behind a ‘no camera day’ excuse – I need to rest. I can barely walk as the pain from deep inside shoots through my stomach, lower back, and left leg.
I’m trying to stay calm and tell my boyfriend: I just need ‘a little time’. To myself, I say: Don’t worry, it’s almost the weekend. It’s not going to be a fun one, but at least I won’t have to bother anyone or cancel anything too important. To my puppy, I apologise 10 times.
That Friday, it had been seven months. Seven months of continuous pain with no explanation why. Not life-threatening, but truly debilitating pain. Often, I wasn’t able to walk further than a few steps without relentless pain. Seven months of nonstop agony.
And I am not counting all the years before that when I would not have pain every day, but still too frequently. It would come and go just like waves; hitting hard and leaving again without much of a trace. I noticed clear patterns with my cycle, but gynaecologists kept telling me ‘all looked good’. I had visited different gynaecologists over the years, questioning why my period seemed so much more intense and exhausting than those of the girlfriends around me.
I got told I was ‘oversensitive’. In other words, modern-day hysteria. My symptoms included nerve pains down my leg, continuously contracted muscles in my pelvis and lower back pain that prevented me from being able to sleep restfully or sit and walk normally. Years went by, seeing a huge variety of specialists, spending a ridiculous amount of money and time trying to figure out what was happening to me.
My mood changed. My energy levels dropped to new lows. My relationships suffered. And I felt more and more like a burden. A crazy one at that.
Doctors kept telling me there was ‘nothing’ wrong. And slowly but surely, I started losing confidence in my own body and mind. I asked myself: “Is this pain even real? Am I crazy or perhaps just dramatic? What if I’m doing this to myself?“
Slowly, but yet surely, I truly started to think I was insane. I was not.
Endo recap: after years of uncertainty and looking for answers, I spent the last seven months intensively looking for a diagnosis. Mind you, fuelled by a very privileged position! I have a job that allows for flexibility and working from home. I had the financial freedom to not stop the search beyond what my health insurance would cover. I have and was able to further build the support system that took me seriously. I’m well aware that many women don’t have that fuel.
Finally, I was diagnosed. And it so angers and saddens me knowing I’m only one of few.
Endometriosis is a disease of the female reproductive system.
Did you know that an estimated 1 in 10 women have endometriosis? It remains a complete estimation, as many women’s symptoms never get diagnosed. Many women suffering from endometriosis believe that those painful periods and sometimes painful ovulation days (yes, that means it can be a total of 2 weeks a month) are part of the burden of being a woman.
“Endometriosis is a disease characterised by the presence of endometrial tissue outside the uterine cavity.
It is a benign disease and has a chronic evolution. It usually affects the abdominal cavity
and occasionally can affect extra-abdominal organs such as the lungs.
Endometriosis can present different symptoms, as well as the presence of lesions in different degrees
such as pain and infertility. The most common symptoms include painful periods and intercourse,
fertility problems, heavier periods and/or fatigue.”
I don’t work in medicine and I can only speak from my own experience. Yet I’ve been shocked and appalled by the lack of information and routine questioning regarding this very common disease amongst women.
Of course, it makes me wonder. Would this be any different if it would affect men?
I’ve not written this for pity. Trust me, I had enough of that for myself.
And now I’m diagnosed! I’m not crazy! Do I still have pain? Yes, but I feel hopeful on my road to recovery. Due to an IUD, I do not get my periods anymore. I underwent a botox injection procedure in the main four muscles of my pelvis, to ‘re-educate’ the muscles from pain to release. I attend weekly physiotherapy and private Pilates classes, in addition to pelvic therapy and osteopathy. None of which has been covered by my health insurance, but all of which makes it possible for me to continue my life as a healthy, working and loving 28-year old. How lucky I am to be able to do this.
I want the word out. To any woman out there suffering. You are not alone. This kind of pain isn’t normal. And no, you’re not crazy.
Ask your doctor about endometriosis symptoms, do your own research where necessary, and reach out to women like myself who have had similar health journeys. Take your pains seriously and know that it doesn’t have to remain that way. There are ways to treat this disease and to further research these treatments! Your health, your sex, your sanity: it matters!
I will be forever grateful for the fantastic work, dedication and care I’ve received from my specialists: Laia Blanco and Xavi Bardina from RAP Barcelona (a physiotherapy centre specialised in abdominal and pelvic reeducation), and Dr Francisco Carmona and Lara Quintas at Women’s Clinic (a team of specialists in women’s health).
And a final, very important, thank you to my partner, Sam Mortimer. Who stood by me, supported and cared for me, never doubted or belittled my pains, and made sure that our puppy never lacked the daily exercise she needs.
Below the Belt: A film for change in Endometriosis
Endometriosis: How advocacy, awareness and algorithms could shorten the long wait for diagnosis and treatment
Slideshow: A visual Guide to Endometriosis
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