Jolien has a severe form of endometriosis. You can’t see it on the outside, but it does have a huge influence on her life.
Jolien: “Until recently, few people knew that I have endometriosis. Or at least hardly anyone knew how much this disease limited me in my daily life. You could say I led a sort of secret double life for a while. On the one hand, I was the cheerful Jolien who just kept going. And, as best I could, I tried to be a nice mother to Jeppe (6) and Pippa (4), a sweet husband, a good employee and a nice friend. But what most didn’t see was that as soon as the front door closed on us, I collapsed. Then I really had to recover from the day and recharge for the next. Every night, like the children, I was in bed at half past seven. Exhausted.
In addition, I had been living on liquid nutrition for a year because my intestines could no longer tolerate normal food because of endometriosis in my rectum. I did not talk about this for many still unknown condition. A conscious choice because endometriosis causes quite a few uncomfortable and embarrassing complaints. By telling my story now, I hope for more openness.
Not taken seriously
I’ve actually had complaints since I was thirteen, so since my first menstrual period. Initially only severe abdominal cramps and problems with my stools. I did not dare to go to the doctor with my complaints. I also didn’t know if what I had was exceptional, what I had. I carefully polled my friends and then decided: this is part of it. One simply has worse menstrual complaints than the other.
When I was 21, I tried to talk to a gynecologist about it. I was with him because my Pap smear was abnormal. Cautiously I mentioned that during my period I had night sweats, felt feverish, had to urinate every hour and sometimes cried in pain when I had to empty my stool. He didn’t laugh at me just yet, but he didn’t take me seriously at all. I decided never to go to him again. Then I muddled on for six years. I graduated as a pediatric physiotherapist, found a nice job, played sports and went out with my husband in our camper van.
What initially started as one week a month of suffering ended in increasingly bad days in between. At one point I had pain from ovulation until after menstruation. With all the consequences that entails in everyday life. For example, during holidays, my friend always had to get off the bus when I had to go to the toilet and I no longer dared to go to the toilet at the campsite itself. It was often accompanied by such pain that it resembled childbirth.
That could no longer be the case. I was looking for another gynaecologist. Based on my complaints, he immediately thought of endometriosis (see box for an explanation of this condition, ed.) and suggested I go to an endometriosis specialist and a fertility clinic. Because if I wanted children, which was the case, it was important to start any fertility treatment as soon as possible.
Spontaneously pregnant
Endometriosis, I actually didn’t know it well, but was happy with the diagnosis. Relieved too. I didn’t pretend, I really had something. And I thought, it turned out to be naive afterwards, now that we know what it is, we’re going to solve it. It’s not that simple with endometriosis. Several spots were found on the MRI. The biggest problem was in the large intestine, where the endometriosis had grown in. We decided first to fulfill the wish to have children and then to tackle the endometriosis.
Fortunately, I became pregnant with my son Jeppe quite quickly spontaneously. The pregnancy went quite smoothly because the endometriosis foci remained calm. That was different when we went for a second child. Spontaneous pregnancy was not possible this time. I received hormone treatment, which significantly increased my complaints. I also suffered from stomach cramps and constipation during pregnancy. The midwife was willing to prescribe me a laxative. She thought of ligament pain. But I didn’t believe in that. The endometriosis specialist determined after examination that my intestines and uterus were attached to each other because of adhesions. As my uterus grew, my intestines started to stretch more and more, with all the dangers that entailed. At thirty weeks I was rushed to the hospital. A piece of intestine appeared to be torn. Fortunately, it cleared up on its own and I didn’t need surgery. But I was very weakened by this complication. In the end, I held out on my last reserves for another six weeks. Then my daughter Pippa was born.
Old lady
A few months later I had my first surgery for endometriosis. They removed hearths from my intestines and diaphragm. That was a major operation. In total it took me a year and a half to fix it up. Just when I thought I was back, I got complaints again. Eating became more difficult and I started having a stomach ache again. I used to be constipated, but sometimes after eating a slice of pizza it was also running to the bathroom and hoping I could make it. In addition, I now also suffered from shortness of breath, pain in my shoulder, ribs, nerve pain in my hip and leg and I had a constant rushed feeling.
During ovulation I became so short of breath that it became difficult to do two things at the same time. Climbing stairs and talking was impossible. I really felt like an old lady. Difficult with two small children who are largely dependent on you. On the weekends I had to refuel. Every time my husband thought of something fun to do with the kids, like going to the pool, petting zoo, park, or playground, they’d ask, “Mommy, are you coming too?” Nine times out of ten I had to say no. For a while, I let all the fun things pass me by so that I could continue to do the most necessary—taking care of the kids when my husband wasn’t around.
Risky surgery
I had to think about when I ate something. To avoid unpleasant situations on the road or at work. For the past year I was on the drinking diet. A bottle that contains your entire meal. It was a blessing for me because at least I got enough energy and could better regulate my toilet visits. It was re-examined whether doctors could operate on me. That turned out to be quite risky. For example, they had to cut my rectum, which increased the chance of a permanent stoma. And to get good access to the diaphragm, my liver had to be pushed aside. The nerves in the pelvis also turned out to be attached to an endometriosis focus and that overstimulated my nervous system. The combination of all these things made the doctors in the Netherlands prefer not to have surgery.
I started looking for alternatives myself and read about an endometriosis specialist in London. I realized he could help me. In fact, he was my best chance at a better life. At the same time, I knew it was going to be a tough road. Emotionally but also financially it would be a lot of stress. Because in order to be reimbursed for an operation abroad, you have to arrange a lot with your health insurer and in most cases only part of the costs are paid. Nevertheless, I took the step. Especially since it couldn’t go on like this. I was a shadow of myself, could no longer work and hardly take care of my children.
Support from the environment
I was examined in London. Based on this, the doctor made an operation plan that consisted of an intestinal section, abdominal cavity and diaphragm surgery all in one. Of course I consulted with my own specialists in the Netherlands. They fully supported the operation in England. I had the best chances there, they said. Despite this, the health insurer did not cooperate well. We had to pay most of the costs – and we’re talking thousands of euros – ourselves. Two friends then decided to set up a crowdfunding campaign. They didn’t want me to worry about the financial side as well.
I didn’t see that at first. Also because then I had to expose my butt and people would hear my story. Fortunately, I took the plunge. I realized that I shouldn’t start saying no to any help right now. In the end, that attitude has brought me a lot. There are many people in my area who knew nothing before and now support me and fully sympathize. Those sweet messages, comments and help are forever in my heart. And of course I am very grateful for the money people gave. In the end, enough was collected, so that I no longer have to worry about the financial side.
I have now had successful surgery in England. The next six months are all about recovery, but it already feels calmer in my stomach. I dare to look ahead again and see the future positively. I don’t know how far I’ll get, but when I can enjoy everyday life again, get back to work and be the mother I want to be, I’m happy.”
What is endometriosis?
Endometriosis is a chronic inflammatory disease in which tissue that responds to hormone fluctuations can be found in many places in the body. Mainly in the abdominal cavity, but certainly also outside it. It is therefore not a uterine lining, unfortunately a common misconception. It is somewhat similar, but the weave contains more differences than similarities. This endometriosis tissue responds to hormone changes and contains certain glands that secrete substances that irritate surrounding tissues. Sometimes this causes the surrounding tissue to bleed, but endometriosis itself does not bleed. The immune system responds to this by releasing inflammatory proteins that rush to the site of the disease, causing swelling and inflammation. Due to this process (which has often been going on for years), the tissue can cause serious adhesions of the organs, severe (nerve) pain, inflammation, damage/deterioration or complete failure of organs and sometimes also infertility.
Text: Jolanda Hofland
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