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After giving birth, Chantal continues to have complaints and she takes an IUD as soon as possible. But this also doesn’t work well. She continues to bleed and is in constant pain. After nine months, she has it removed and switches back to the pill. “I kept changing pills, because nothing worked,” explains Chantal. If she also gets rheumatism, the pain is really unbearable. “An anti-inflammatories were added to my medication, but the pain persisted all the while.”
endometriosis
Finally, about four years ago, the cake is really over for Chantal. After an online search for what could be causing her complaints, she ends up with endometriosis. She can tick off almost all the symptoms. “My GP sent me to the regional hospital to have it checked out, but they couldn’t really find anything there, so I was referred to a specialist.” Once there, Chantal, at the age of 37, gets an explanation for all those years of pain for the first time: she has endometriosis.
“It was really a warm bath, so much recognition and acknowledgment,” Chantal looks back. She is having surgery, as she has already exhausted all other options to treat her pain. “The adhesions turned out to be in several places.”
After the recovery period, Chantal notices that she has a little less pain, but it is not really over, so she soon goes back to the doctor. “They supposedly removed everything, but within six months I had very violent attacks again and I even urinated blood.”
A urologist comes in, but he can’t find anything. The specialist thinks it cannot be endometriosis, because after all the adhesions were removed during the operation. Chantal again undergoes all kinds of examinations and then endometriosis is also found on her diaphragm.
Operation
Through a peer group, she hears about a doctor in London who specializes in endometriosis. Last February she went for a consultation at the English clinic, and there it turned out that her entire uterine wall was full of mini-cysts. “They get an inflammatory response due to hormones and that explains a large part of the pain.”
The doctor also finds spots on her ovary, diaphragm and left chest cavity and she is diagnosed with adenomyosis: a disease caused by ingrowth of endometrium into the wall of the uterus. “Oddly enough, that was a kind of relief. It had bothered me for so long, but because nothing was ever found, I slowly started to think it was all in my head.”
With the new findings, Chantal returns to the specialist in the Netherlands. But then she gets a big blow. “They literally said: we cannot perform the operation you need. That was very hard to hear.”
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To improve Chantal’s situation, she has to undergo a complicated operation in which different specialties come together. That is possible in London, for a lot of money. “The health insurance does not reimburse the operation – not even partially – because it is not done in the Netherlands.”
Taking hormones
She is again advised to take hormones, but Chantal is completely done with that. “I feel so much better mentally without it. I’ve been depressed for years because of the medication, it’s finally lightheaded again. I don’t want to give that up.”
Medications are also mainly a short-term solution and only treat the symptoms. “The English doctor does not guarantee that I will be 100 percent pain free, but that the chance is there at all makes undergoing major surgery worth it for me.”
“I don’t have a life this way,” says Chantal. “It puts a heavy burden on our family.” She would rather have surgery today than tomorrow, because her pain is getting worse. “We are busy saving, but in the meantime my shortness of breath, for example, is getting worse. I’m afraid of what the endometriosis has done to my body. I won’t know until after the operation.”
Crowdfunding
Because 35,000 euros is a huge amount, Chantal’s friends decide to set up a crowdfunding campaign. “I think it’s very twofold. It is so very sweet and I am grateful for every euro, but on the other hand it feels like a failure of my body and therefore crazy to accept money for that.”
The donations are slowly pouring in and so the (bright) dot on the horizon is getting closer for Chantal. “I am flabbergasted that there are so many lovely people who want to donate something and give me a heart under the belt.” She still finds it difficult to accept help and asking for it is a learning process. “I hid my pain for a long time, because I was ashamed. I find it very confrontational that everyone now knows about it, but on the other hand I received so much love. And that does me good.”
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Although it is a very serious operation, Chantal can’t wait to go under the knife. “I really don’t go to London for fun.” The mother thinks it is a terrible prospect to have to miss her son for two weeks. The recovery period will also be tough, the doctors told her. “Still, I cling to the idea that it will get a little better every day after the operation.”
To the beach
That she can then just live her life, without taking into account the pain and fatigue, is a dream. “I would so much like to spontaneously decide on a Saturday morning to go to the beach or the zoo without thinking about the price I will have to pay later or the pain it will cause me.”
Chantal tries to hold on until she has the money together for the operation, but it doesn’t really go well. She hopes that by telling her story she can motivate other women to sound the alarm in time. “Even if there is only one girl who reads this and therefore goes to the doctor with her complaints. And if all kinds of misery are prevented, then I am a happy person.”
Watch Chantal’s story below. You can find the crowdfunding via doneeractie.nl/wanneer-je-pijn-niet-meer-onzichtbaar-kan-zijn/-75461.
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2023-07-06 10:10:03
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