More Than Period Pain: Six Women On Being Diagnosed With Endometriosis

This article originally appeared on VICE Italy.

I found out I had endometriosis in 2015. Like many others in my situation, I had long underestimated my symptoms, and turned to doctors only after reaching a breaking point. Endometriosis is a chronic disease often caused by genetics, with very few treatment options. The condition affects one in ten women of childbearing age, but the road to diagnosis can be bumpy, especially if you’re trans or non-binary.

If you have endometriosis, the lining of your uterus grows in other parts of your body. Most commonly, this happens in the ovaries, fallopian tubes or the abdomen, but it can also affect the lungs, the diaphragm, the appendix, the sciatic nerve or the nose – and in very rare cases, even the eyes and the brain. This tissue follows the menstrual cycle wherever it grows, thickening with blood and then breaking apart. But the blood has no way to leave the body, creating painful lesions, cysts and chronic inflammation. Endometriosis can also make sex painful, cause fainting, vomiting, acne, mood swings, fatigue and even infertility.

“Nowadays, people are diagnosed more quickly,” said Milan-based gynaecologist, Letizia Parolari. “But it depends a lot on the doctors and the clinic.” Ultrasounds can help, but the only way to actually see the extent of the problem is with a laparoscopy, a minor surgical operation where a thin tube is placed into the belly through a small incision. Even after being diagnosed, there’s not much you can do – you can either manage the pain with painkillers, take the pill non-stop and skip your periods, do surgery to cut away patches of the tissue or remove the womb.

Each case is different, but many people who have endometriosis put up with the pain for years before seeking help – or being believed by doctors. I asked five women to share their experiences with the condition both before and after they received some answers.

I’ve never let my period stop me from doing anything. But in 2015, I had to take a bunch of painkillers just to be on my feet. After my diagnosis, I was immediately put on the progestogen pill [with a low hormonal dosage] to keep the situation at bay. At first, I felt quite helpless – I couldn’t make any plans. Every time my period came around, I didn’t know if I’d be able to put up with the combination of the hormonal side effects of the pill combined with the condition itself, since the pain never really left. 

People are talking more about endometriosis today. But there’s still this persistent idea that periods are supposed to make you suffer, that we are predestined to do so. As a result, society tells us that all menstrual discomfort is normal, even when it can be a symptom that something is wrong.

I started having periods very early, when I was ten. They always led to severe pain, nausea, diarrhoea, and I would often faint. At 28, while I was in France, a friend of my mum’s who’s a gynaecologist told me I could have endometriosis. I got back to Italy and did some tests, but I struggled to find a doctor who would listen to me.

Luckily, I only have a very mild case. My (female) gynaecologist told me to “either go on the pill or have a child”, neither of which was an option. She was very tough. “I don't understand why girls nowadays want to suffer,” she said. “I'm giving you the solution, so take it.” For a few years, I compromised – I took the pill and stopped menstruating, but I also felt the hormonal changes. Two years ago, I decided to stop. The pain has decreased a bit, which is good news, although I don’t know why it got better.

We should tell young girls in school that period pain is normal, but only up to a certain point. The same thing goes for pain during sex. I think the condition is often underestimated, though it’s debilitating even in its lightest forms. If you ask me, if it was a “male disease” we would have found a cure for it 20 years ago.

After finding out I had endometriosis in the midst of the pandemic, I immediately became a spokesperson for the Italian Endometriosis Foundation (FIE). In the previous year-and-a-half, I experienced incredible pain. I put off dealing with it for a while because of the pandemic, but luckily I got it checked out in the end – I had a benign mass in an ovary that was haemorrhaging, and lesions on both ovaries. 

I immediately started taking Visanne [a progestin-based drug used to treat endometriosis] and following the FIE’s dietary guidelines. I also take the pill and six supplements a day. The costs are quite high and they aren’t covered by public healthcare, unless you have a severe case. 

My biggest fear is not being able to have a fulfilling life. Sometimes my brain wants to do things my body won’t allow. Endometriosis also affects your mental health, not only because of the mood swings, but because of its impact on daily life. It’s normal to develop depression, anxiety or – in my case – panic attacks. So don’t be afraid (or ashamed) to go to therapy.

I found out I had endometriosis under pretty absurd circumstances. While my cousin was giving birth at the hospital, I asked the gynaecologist if I could have a quick checkup, since I hadn’t had a period for a couple of months.

During the exam, the doctor’s face suddenly darkened. They said I had to do more tests. To sum it up, I had a very large ovarian cyst at risk of bursting, which could make me lose my ovary and suffer internal bleeding. I was just about to turn 25 and I’d never even heard of endometriosis before.

I've always had very painful periods. As a teenager, my doctor told me to take painkillers before the pain started, and I went on like that for years, ignoring the problem. If I’d looked into it earlier, perhaps now I wouldn’t have a giant cyst that won’t go away.

When the gynaecologist asked me if my periods were painful, I said yes, with the impassive pride of a woman who faces pain with courage. I thought it was normal, that it would prepare me for childbirth. I didn't even take painkillers.

One evening in December of last year, after having sex with my boyfriend, I felt excruciating pain. The next day I went to the emergency room but the doctors couldn’t see anything from the ultrasounds, even though a blood test showed my white blood cells had gone haywire. They recommended intestinal X-rays, and the radiologist told me there was a 9cm cyst in my left ovary.

How the hell had the emergency doctors not seen it? I later realised it was so big they might have mistaken it for the uterus. I booked an appointment with a private clinic. Meanwhile, the pain came in waves – I felt a weight in my womb and struggled to empty my bladder and bowels. 

The private gynaecologist said I had to be operated on as soon as possible. They advised me to go back to the emergency room and exaggerate my pain, otherwise I’d have to wait too long. I was ashamed, but I did it. I was operated on under general anaesthesia and I’ve been taking the pill ever since, even though missing my periods makes me feel weird.

During my periods, I’d have intense abdominal pain even after the bleeding stopped. I would also feel pain in my right shoulder, especially when I took a deep breath. My gynaecologist told me not to worry, that it would go away once I got pregnant. 

Eventually, I went to a private clinic with a specialised team, and the diagnosis was immediate – diaphragmatic endometriosis. I joined the FIE, where I met people with similar or even worse problems, like a woman with pulmonary endometriosis. Many said that they were not believed by their doctors, who reduced their symptoms to “women’s complaints”.

I was 35 and I wanted a child. They attempted an operation [to remove the tissue], but it was too complicated. I was told very coldly that even assisted fertilisation wouldn’t help. I tried anyway, but after two attempts I gave up and started taking the pill non-stop.

I went through menopause very early, at 42. I felt liberated – finally, I could live without pain. My daughter is adopted, but in a way, I did go through the pains of childbirth. Over and over again.

*Names changed.