Tessa (35) has deep infiltrating endometriosis (DIE): thankfully, I didn’t need to get a stoma when they had to remove part of my intestine.
Tessa de Jong (35) has deep infiltrating endometriosis (DIE). She posted her story on LinkedIn, and to her surprise the response was overwhelming. Through her openness about this subject, she hopes to garner more awareness. Hopefully, this will lead to more women receiving the help that they require. Did you know that it takes eight years on average for women with endometriosis to get the correct diagnosis?
One in every ten people to whom Tessa tells her story knows exactly what she means. Often because they have it themselves, know someone who has it, or because they’ve already been confronted with the terrible consequences of it before. Once you know what this affliction does, you won’t easily forget it. Tessa: “For the other nine people, I explain what it is, even though it is a taboo subject that we don’t usually discuss. Male conversation partners especially become uncomfortable when I use technical terms about menstruation out loud in a conversation. By now, I’ve abandoned all embarrassment about this subject, and am happy to tell you all about what this horrible disease is doing to my body.”
[What is endometriosis, and what degrees does it occur in? Read here]
For the visually inclined people among us, Tessa describes it in great detail: “There is blood (a lot of blood), adhesions, deformities and other nasty things involved. And not just that, but also blaring sirens, screeching tires, screaming, yelling and writhing on the ground in brutal and unbearable pain.” Sixteen years ago this nightmare started for her, and it wasn’t until six years ago that she received the correct diagnosis for the first time, after meeting tens of doctors, specialists, and therapists. In the meantime, Tessa has lost her rectum and part of her large intestine, because the endometriosis severely damaged this organ. At the time of writing, the procedure was eight weeks ago and has changed Tessa's life forever.
How are you doing now?
It’s going well by all means, though I underestimated the operation. All the endometriosis was removed, I was radically cleaned out on the inside. It was a six-hour-long surgery, during which my rectum was removed, including the s-bend that lay behind it. They also treated a hole in my vaginal wall, and removed an adhesion the size of my fist. I’ve read the report and seen the photos. That was very intense, but it was also good to see what it was that was causing all of that pain there. I now have to live on without a rectum, which takes some adjusting. I feel full more quickly when I eat, and have to use the bathroom more often. Thankfully, I have a medical bathroom pass, so I can use the bathroom anywhere.
How is your disease progressing now? For as long as you have a hormonal cycle, your endometriosis could return.
That’s correct, but I won’t live with this fear. We’ll see what happens. What I do know is that I won’t live in silent pain anymore, since that prevents people from knowing what’s going on with me. I feel that I have to make people aware of what endometriosis can do to you. That’s partially so that I can live with it myself, since I only now realize how tough the last few years have been for me. I was doing particularly well, the surgeons later told me. Many women can barely even function with this type of endometriosis”.
Let’s start at the beginning. When did you find out that something was wrong?
I was 13 years old when I first got my period. My mom, who also has endometriosis, immediately noticed that the hormones took a toll on me, my emotions were all over the place. That’s why she quickly got me to start taking the pill. I had breakthrough bleedings with a lot of pain and discomfort, so I quickly began swallowing the pill without a pill-free week. I didn't really pay attention to what the cause of them was, I just thought it was part of life. On my nineteenth, it really became an issue. Constant breakthrough bleedings, heavy periods that lasted 21 days. I’d change my tampon, sit down for five minutes, and stand up to find that the couch had been drenched in blood. I stopped taking the pill and subsequently had a lot of trouble with my bowel movements, including severe pain in my anus, pelvis, hips and thighs. At one point, I couldn't walk for more than fifteen minutes. I also got a lot of unexplainable shoulder complaints.
Was endometriosis your first guess?
Certainly not. I went to an orthopedist who diagnosed me with chronically inflamed bursae. They had no idea what had caused that. An operation to remove the bursae followed. After the fact, it turns out that I started to move differently because of the pain of endometriosis, which made the bursae become overburdened. If I had received the correct diagnosis at the start, I probably wouldn’t have needed the surgery. In the meantime, I continued to have a lot of pain, and would feel like I was dying around the time of my menstruation. I had blood in my stool, visited GP after GP, was undergoing treatment at a pelvic floor physio, still had pains in my shoulders, but nothing seemed to help. Eventually I ended up at a gynecologist, who diagnosed me with endometriosis after an internal anal examination and an MRI scan. I was referred to an intestinal surgeon, who had an endoscopy done. I was told that that looked good, and that was that.
And in the meantime you were still suffering from the pain?
“It was even getting worse! I would sit on the toilet screaming in pain, and would frequently be knocked out cold. I asked for a second opinion and was given several different hormonal treatments to relieve the pain: contraceptives, Lucrin (a medication that slows down the production of sex hormones - Editor’s Note), combination pills, estrogen preparations. Nothing helped, and the hormones turned me into a shadow of who I used to be. Downcast, depressed, even aggressive. It felt like I had to pick between two evils: either I’d constantly feel out of sorts, or I’d be disabled with pain once every three weeks. I decided to go for the pain, since I felt like I could handle that better than being mentally checked out all of the time.”
You still ended up getting a surgery
I was now focusing a lot on nutrition and didn't want any more medication. I actually didn't want surgery either, but my doctor told me there was no other option. The endometriosis was everywhere, it had even grown through my vaginal wall. The first operation had been four years ago at that point. All the endometriosis that was outside the intestine and had grown through the vaginal wall had been removed then.
Did that help?
It was also in places that they couldn’t reach well, so it wasn’t cleaned thoroughly enough. Within half a year I was having complaints again, and after a year the endometriosis had even doubled when compared to before the surgery. My shoulder pains had also returned. I frequently ended up in urgent care after having sex. In the meantime, I had ended up in a destructive relationship with someone who had no sympathy for my endometriosis. That caused me to completely disassociate from my body, to the point where I couldn’t keep going any longer. A cry for help arose in my head. I felt it in my core: I have to start working together with my body, I need to be kind and good for it, and do things that fit with that.”
What kinds of things were that for you?
That mainly had to do with my diet. I applied a sort of dietary reset to myself by eating gluten-, sugar- and lactose free. That’s how I discovered which foods had an influence on my pain. Legumes increased my pain, just like spicy food - even though that’s a favorite of mine. I was also prescribed Orgametril, which was the first hormone preparation that completely stopped my pain. But the side effects were immense: it made me sweat like a pig, and I had to get out of bed 5x every night to put dry sheets on my bed. So, I was given sleep medication and then also antidepressants. I gained ten kilos, and ended up in yet another deep depression. That’s why I stopped taking this medication. An MRI scan showed that the endometriosis had regrown through my vaginal wall, and that it had even afflicted my intestine.
[A dietician explains the endometriosis diet. Read here]
Is that how you ended up with the surgery that is described at the beginning of this article?
That’s right. I was operated on by an oncological surgeon who specializes in rectal cancer. He is the first person who calmed my nerves. Because of him, I knew what to expect, plus he’s prevented me from having to have a stoma.”
How do you look back on the past few years?
Only now do I realize how intense the whole process has been and how much of an impact it has had on me. For example, the hormone treatments, which have affected me a lot. For a while now, I have been working on really being who I am. I don't want to hide things away anymore, including my endometriosis. Partly because of my toxic relationship, I had lost faith in humanity. After my post on LinkedIn, I received many kind responses, from both women and men. As a result, I have been able to see the goodness in people as a whole, but also in men in particular, again. It has done me a lot of good.
Do you wish to read more experience stories about women with endometriosis? Read the story of Linda (47) here, or read that of Charlie (27) here.
