Endospot: Empowering People with Endometriosis and Advocating for Proper Diagnosis and Treatment

Endospot is a platform for and by people with endometriosis. Text continues below the post.

“I had a very bad experience with one of the gastroenterologists. She did not do a physical examination and concluded purely on my description of my complaints that it must be Irritable Bowel Syndrome (IBS).” Niki is sent home with the message to drink Yakult, do yoga and take a remedy for the constipation. “When I indicated that the painkillers I had tried didn’t help and I didn’t feel comfortable with them, she said bluntly: ‘You don’t think I’m going to prescribe you stronger painkillers, do you?’”

“I’ve been to so many doctors who couldn’t help me, but this really hurt me.” Niki doesn’t know what she’s hearing and is still sad when she thinks back to this doctor’s visit. “She didn’t understand that I didn’t want any symptom control at all and she didn’t even listen to my request for help. I was not seen as a patient, but actually not as a person either.”

“I started avoiding doctors because of that,” Niki says honestly. “Until I could no longer function in my work as an ecologist.” She loves her job, but the fieldwork she regularly has to do is hard for her. “My pain and fatigue got so bad that I couldn’t keep it up physically and mentally.” Not long before she drops out, Niki changes jobs, giving her a one-year contract. That will not be extended. “I cried a lot from the pain, the sadness and the frustration. I still didn’t know what was wrong with me.”

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endometriosis

After her umpteenth visit to the GP, she is forwarded to the practice nurse to have conversations. “She was the first to say, ‘I’m not a medical doctor, but it sounds like you have endometriosis’.” Niki is confused, because at first glance her complaints do not fit with the most well-known symptoms of endometriosis, such as heavy blood loss. But when she searches further she finds an episode of the BNNVARA– podcast Jurre’s Date in which presenter Jurre Geluk talks to Devney, who has endometriosis. “Something clicked when I heard her story and I recognized myself in a lot of what she said.”

Text continues below the podcast.

Niki goes to the doctor with lead in her shoes to ask for a referral to the largest endometriosis center in the Netherlands. There, her suspicion is confirmed and she is told that it is quite serious. “They had seen invasive endometriosis with intestinal involvement during an MRI, and I had to go under the knife.”

After being on the waiting list for months, corona then postponed for another three months. “The doctors thought it would be a simple procedure, but once in my stomach they were shocked by the havoc. I was in much worse shape than they had thought beforehand.” The deeply invasive endometriosis that has grown in her gut cannot be removed, the doctors just remove a few deeply ingrown spots elsewhere in her abdomen. “I had hopes that it would provide some relief in terms of pain relief, but it didn’t really help.”

Children’s wish

Niki and her partner Edwin have had a child’s wish for years. The doctor at the endometriosis center tells them that they can get pregnant naturally after the operation, but when after the operation it turns out that Niki needs another operation to prevent an intestinal blockage, they see their chances of having a child getting smaller and smaller.

Through a peer support group, Niki finds a doctor in England who specializes in endometriosis. “By now I had lost all my confidence in the doctors in the Netherlands. Here they lack the expertise to safely remove my intestinal endometriosis and I am at greater risk of a stoma or LAR syndrome. My wish to have children has also not been taken seriously.”

In July 2022, Niki will travel to London for a consultation. “The conversation with this doctor was really a relief,” she says enthusiastically. He advises her to go through the first phase of IVF, before surgery, so that embryos are ready to be transferred after surgery. It’s a difficult process. “The endometriosis has seriously affected my egg cell reserve, but after seven rounds there are now two embryos ready in the freezer. I am concerned that there are so few of them. But unfortunately I cannot postpone the operation any further, my body is exhausted.”

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Operation

The operation and everything that comes with it costs 35,000 euros. Niki is still hopeful that she will be reimbursed for a substantial part of this, but unfortunately the talks with the health insurance have been difficult for months. That’s why Edwin started a crowdfunding to raise the amount. “He is my support and strength, without him I wouldn’t be anywhere,” says Niki lovingly. She finds it very difficult to accept the help, but at the moment she has no other choice. “It’s a shitty disease. Two or three days a month I feel fine. The rest of the time lying on the couch or in bed.”

The operation is scheduled for September 25, time cannot go fast enough for Niki. “Physically, things are going bad. I’m having a good day now, but for someone with a healthy body it’s still a very bad day.” She hides a lot and regularly wears a mask to protect herself. “I think the worst mental blow is yet to come.” She is currently going to a psychologist to process everything that happened. “I have heard for years that my pain was between my ears, I can no longer do my passion, my work and I still fervently hope that we can have a child.”

Niki wants to emphasize by telling her story that endometriosis is not only in the uterus. “It is a disease in the whole body and you can also have complaints outside of your period.” She hopes that women will not doubt themselves and that doctors will take the disease seriously. “Even if only one person is immediately helped by my story, then my mission has been successful.”

Edwin raises money for Niki’s surgery.

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2023-08-13 10:06:37
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