Linda (48) has endometriosis: ‘I lost so much blood that they thought I was having a miscarriage’
Linda (48) is mother of two children and has endometriosis. ‘It completely changed my world when my osteopath told me that it is unusual to experience pain during your period. That is just a myth. Every form of pain you experience during your period has a different cause. Upon hearing this I immediately thought: there are a lot of women who suffer unnecessary pain.’
During a cruise nine years ago, Linda suffered such severe abdominal pain that she could no longer walk. ‘Ever since my period started (when I was fourteen), I can’t recall ever having stomach pains while I was on my period, but the pain during my vacation was indescribable. Back home in the Netherlands, I was told that I had had two kidney failures, which were the cause of the extreme abdominal pain. I was glad that I had received a diagnosis for the pain, but it wasn’t until shortly after that the misery started. I experienced heavy vaginal bleeding. Using a tampon or a pad was no use, the blood literally flowed out of me. For nearly five months, I was hospitalized three to four days a month, because of this blood loss. In fear of congestion, I was catheterized to remove the mucus from my uterus. It was a tough period, because I couldn’t count on the support of my partner either. Thankfully, a very sweet colleague, who lived near the hospital, came to visit me daily with lunch. He was truly there for me, so the spark lit in no time.’
‘They thought I was having a miscarriage, because I was bleeding so much’
Month after month, Linda went back to the hospital until she could no longer stand on her feet. In order to go to the hospital, Linda called her mother, who helped her get in the car using a desk chair. ‘I lost so much blood, I had two blood transfusions. The blood transfusions made me feel better, but even then, the doctors were still at a loss as to what could be the cause, let alone which department I belonged in. Because of the amount of blood loss, they suspected a miscarriage, but it quickly became clear that this wasn’t the case. They told me it was very unlikely that I would ever be able to have children. After going back and forth for over a year, I was referred to the university hospital in Nijmegen where I was diagnosed with endometriosis. My endometriosis is located everywhere but my uterus. Meaning that, all my cavities are filled up, but the blood has nowhere to go to. It's for this reason that the doctors have decided to not remove my uterus. Removing my uterus could cause other complications and issues and it was also no guarantee that it would make the current symptoms disappear.
I was prescribed a special nose spray that would shut down the cell division in my body, which prevented the endometriosis from developing further. I was only allowed to take this form of medication for a few months, because it can cause osteoporosis otherwise. My health insurance company referred me to Leuven where they could treat the endometriosis using laser treatment. Four specialists treated the endometriosis around my bladder, intestines and the cavities in between during a six-hour surgery. During that same surgery a part of my intestines were also removed. The recovery from this procedure took at least nine months. Because of this recovery period I was on sick leave frequently, so in the end I had to make the decision to quit my job.’
Desire for Children
Linda was barely waking up from the anesthesia when she was asked the question: “Do you want to have children?”. ‘I was overwhelmed by that question. In the Netherlands, I was told I would never be able to have children, but through IVF, I was given the chance to start a family. I was only together with my current partner for around two years at the time and I told him from the start that having children wasn't a possibility. After some deliberation, we started a successful IVF procedure in Belgium and had two eggs transferred. Unfortunately, it was unsuccessful. However, ten weeks later I appeared to be naturally pregnant with our son. A second IVF procedure followed and after a terrible pregnancy, we had a beautiful daughter.’
‘Because of the endometriosis, all my intestines are sticking together’
Despite the six-hour procedure Linda had to undergo, she noticed that the endometriosis returned, as is usual with the condition. Because of the endometriosis, she suffers back pains and abdominal pains more often. ‘My osteopath taught me a trick so that I can bend forward - something you can’t avoid as a mother of a two-year old daughter. Because of my endometriosis, all my intestines are sticking together. Everything just hurts, no matter what I do.’ Linda finds the pain annoying. ‘Although pain is something you can learn to live with, what I find most annoying is how I was treated as a patient. I find it inconceivable that this is still not corrected. Medical files are shared, but there hasn’t been a single doctor who said: “Oh, you have endometriosis, that must be rough.” or anything, really. This damaged my faith in doctors and specifically gynecologists. My children were born in a hospital 40 km away, that is ridiculous if you think about it.’
‘The pain is unbearable’
The reason for participating in this interview was obvious to Linda. ‘It's important to me that women know that pain is not normal and I hope that endometriosis gets more recognition, especially amongst other women. Before I was diagnosed, I had never heard of this condition. One in ten women has endometriosis. And even if you can’t treat it, it’s comforting to know what is “wrong” with you.’
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Want to read more about the various degrees of endometriosis? Read this article, which explains everything.
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