Based on a call on our socials, Tamara and Suhainy were interviewed by us. They each shared their own experiences with us about the lengthy process of pain and diagnosis. Their experiences offer us a glimpse into the bizarre reality of living with this complex condition, the struggle for diagnosis and treatment, and the importance of support, awareness and education.
Endometriosis is a battle that often takes place in silence, hidden from view, but with profound consequences on the lives of those who suffer from it.
The story about Tamara's endometriosis ordeal (50)
Tamara's battle with endometriosis started at age 12, 2 years after her first period, but it took years before she received a diagnosis. Her story is one of perseverance through unimaginable pain, endless hospital visits, and multiple surgeries.
After 9 years of excruciating pain, she was told in 1995 that she had a mild form of endometriosis. It was said that this was nothing special. She had to take the pill for 6 weeks, followed by a week off, because menstruating less often would ensure that the endometriosis could not continue to grow and might even decrease to the point of disappearing. But despite this advice, the severe pain and bleeding continued unabated.
The desire to start a family caused her to stop taking the contraceptive pill, which miraculously led to a successful IVF treatment with a 5% chance. After stopping the pill, she ended up in an emergency operating room after 10 months due to a ruptured endometriosis focus. During pregnancy, Tamara experiences internal bleeding due to a burst cyst. It goes on and on.
After the birth of her daughter, more operations followed to tackle, among other things, the spread of endometriosis to her intestines and rectum. Tamara's story is one of physical and emotional struggle, but also of unprecedented resilience. Despite everything, she continues to fight and adapt to the constant changes in her health and well-being. We are deeply impressed.
Tamara's message
“In July 2023, my 8th abdominal operation was necessary due to an abdominal wall hernia, this time on the left side. Part of my colon had gotten stuck in my oblique muscle (which was torn in three layers), and the scar from the kidney surgery was also damaged. During the operation, the layers of my oblique abdominal muscle were sutured and the scar was neatly repaired, from the navel to the back.
My mental resilience is my strength. The process of accepting myself as I am really began in 2006. Every new condition, worsening of symptoms or surgery challenged me to start over. I had to keep lowering the expectations I had of my body, whether I wanted to or not.
I will never accept myself 100% and that's okay. I know myself too well for that. That would distract me too far from who I really am. It's not like I voluntarily stood in line for a ticket called "Endometriosis & Co", I'm sure!
Accepting that I am ill, that I will not get better and that I have to adjust my life, is something I do with a certain reluctance, pain and sadness. And that's okay. It is what it is, and even though I don't necessarily like it, I try to make the best of every situation. If I can do something fun, I really enjoy it, maybe even more than before.
Endometriosis affects my life in different ways, and the price I pay for it changes daily , while my energy budget stays the same or even decreases every day. On good days my energy budget doesn't run out until late afternoon, but on bad days it's gone by mid-morning, or even earlier. Borrowing from "tomorrow" is not an option; it's gone!
This is how I try to deal with my endometriosis and the other conditions that come with it, in my own way.
The resilience I need every day is not sitting in a drawer ready for use. I have to find, create and adapt that resilience every day, depending on what is needed.
I graduated with honors from the master's program "Learn to understand and feel the language of your body". But apparently I missed the further training "Learn to make the language of your body understandable in the medical world", because until now I have had enormous difficulty with that, both literally and figuratively.
The department that brushes off the problems with the comment "it's all in your head" seems to have a pill for everything, without conducting serious research or providing care. As long as I can and don't need them, I will bypass that department.
It is disheartening to see how the arrogant insular culture and the sheer system are perpetuated in hospitals and the healthcare system. The lack of involvement is downright distressing. This must change quickly.
As a result of severe endometriosis, which is deep-rooted and extensive, and the use of various medications, I have developed various conditions and complaints over the years that will not disappear. I have been treated on all fronts and can only find partial relief through pain management. My quality of life has decreased significantly. The fact that I cannot fully participate in society is unbearably hard, lonely and heartbreaking, as if I am 'not good enough' and I could go on and on.
The long-term use of Lucrin Depot for more than 20 years, which has caused a chemical transition, has caused a lot of suffering. Menopause is often neglected in women's care and deserves more attention.
My message to all girls and women is: if you experience unexplained abdominal pain that persists even after taking strong painkillers, go to your doctor and have it thoroughly examined. Don't be fooled with standard answers, such as that it's just part of life, that it's 'in your head', or that you simply have to take a pill. You're not crazy. As long as no ultrasound, MRI scan or keyhole surgery has been performed, endometriosis, for example, can NEVER be ruled out.
But don't give up. Seek support from fellow sufferers, organizations or authorities. Let's work together to give endometriosis a face and raise awareness about it. Whether you are looking for recognition or you want to share your own experiences, on www.diagnoseendometriose.nl I tell sincere, honest stories about my struggle with endometriosis, with a touch of humor.
Together we are strong!"
The story about Shuhainy's (28) frustrating search for the diagnosis of endometriosis
Shuhainy's diagnosis came after a long and frustrating search for answers to her severe menstrual pain, which started when she was just nine years old. Constant pain, irregular and extremely long cycles, and the feeling of not being taken seriously by medical professionals characterize her journey with endometriosis.
It wasn't until 2022, 17 years after her first symptoms, that Shuhainy finally received a diagnosis.
For the first 10 years after her first period, Shuhainy was sent home by her GP approximately every 2 years. She then went to different doctors. Radiating pains and cramps in her back and legs meant that in addition to the gynecologist, she was also sent to an orthopedist and physiotherapist with diagnoses that were far from the truth. Ultimately due to continuous severe abdominal pain,
she ended up at a gynecologist who concluded that she had infections, for which she was given antibiotics. This only worsened her complaints because she also suffered from intestinal problems.
After she eventually visited several GPs again, it was Shuhainy's mother who saw something on television about endometriosis. Even after that, it took a long time before she got the right referral. The diagnosis made her cry with relief. She now knows what is going on, has had surgery and can handle the situation better.
Her story highlights the challenges young women face in seeking recognition and treatment for their symptoms. Despite the pain and discomfort, Shuhainy had to fight to be heard and receive proper care. Her experiences with misdiagnoses, the misunderstanding and the loneliness she felt as a result, are painfully recognizable for many women with endometriosis. Nevertheless, like Tamara, she remains a source of inspiration and hope for others living with this condition.
Conclusion: more attention is seriously needed for endometriosis and faster diagnosis
Tamara and Shuhainy's stories are just two examples of the many women who experience the consequences of endometriosis every day.
Their experiences highlight the need for greater awareness, better diagnostic processes, and more effective treatment options for endometriosis.
By sharing these stories, we hope to break the silence and shed light on the reality of living with endometriosis. It's time to listen, learn, and take action. It is important that the diagnosis of the disease endometriosis is made much earlier and that research is carried out. Where does endometriosis come from and how can it be prevented and how can it be tackled.
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