Interview with Endometriosis Fighter Vivian

Period pain severe enough to cause fainting? Vivian’s endometriosis went undiagnosed for years despite significant symptoms. In this interview, the influencer talks about her long journey to diagnosis and offers tips for those affected.

Endometriosis — what is it?

Endometriosis is one of the most common gynecological conditions. It is estimated that one in ten women* suffers from this chronic disease. Yet endometriosis often remains undiagnosed for a long time — in Germany, it takes an average of seven years from the onset of the first symptoms to an endometriosis diagnosis. Those affected develop cysts and inflammations that settle on the ovaries, intestines, or peritoneum. These so-called endometriosis lesions cause severe pain, which usually occurs cyclically with menstruation.

*Endometriosis does not only affect cis women, whose gender identity matches the sex assigned at birth. The disease also occurs in trans* or non-binary people as well as in individuals without a uterus.

Vivian, you share information about endometriosis on your Instagram account and let your community participate in your daily life with the condition. How did you get started?

In February 2020, after my laparoscopy, I received the endometriosis diagnosis. I searched the entire internet for experiences related to the disease. Unfortunately, I found it very tedious to gather information from various sources and websites. I wanted to create a platform where all important informationabout endometriosis is collected and where those affected can exchange experiences. So I decided to start my Instagram account. And it was the best decision I could have made!

How exactly did endometriosis manifest in you, and how long have you been living with the disease?

I got my first period at twelve years old and with it my first symptoms and pain. Even then, I was already struggling with severe period pain. I also had to vomit from the pain or faint because the pain was unbearable. This repeated every month during my period. Later, symptoms like pain during bowel movements and/or urination appeared. These endometriosis symptoms have been with me for about 13 years now and have become cycle-independent — so they occur even outside my period. It’s a big up and down, but through the disease, I have also learned a lot about myself and my body.

Many people associate endometriosis with menstrual discomfort. Is that enough to understand the disease?

No.  Endometriosis is soooo much more than menstrual discomfort. Of course, symptoms vary from person to person. The disease is very individual — just like the people who suffer from it. Some affected individuals have no symptoms at all, but of course, there is also the complete opposite. Endometriosis is therefore called the  chameleon of gynecology. The disease can also lead to infertility and/or organ loss. Additionally, a chronic illness can, over time, affect mental health or lead to job loss due to many sick days.  Endometriosis has many faces.

How does endometriosis affect your daily life?

There are, of course, some limitations that come with endometriosis.  I always carry an emergency bag with medication.  It can happen at any time that I have a pain attack that I can only manage with medication. Also, with a chronic illness, it is very hard for me to be spontaneous. I have had to cancel many meetings with friends or important appointments because I couldn’t get out of bed or was in pain.  That’s why it’s even more important to have an environment that shows understanding.  I often suffer from bladder pain and nerve pain in my legs as well as chronic exhaustion. These are the symptoms that burden me the most. But I still try to make the best of it.

How do you experience understanding for endometriosis in your environment?

I am very lucky to receive great understanding from my closest circle. Especially my partner is a huge support for me. I have openly and honestly informed my family and friends about the disease. Of course, no one can fully understand because they are not affected themselves. But everyone supports me a lot despite that, and I really appreciate it.  Understanding from strangers is often not as great.  There I often hear statements like “You’re still so young” or “You don’t even look sick.” By now, I can brush those off, but at the beginning, such statements were naturally hard for me.

What was your medical history like until the final diagnosis?

It took me over twelve years to get the official diagnosis. Unfortunately, over the years, about 20 gynecologists did not take me seriously. I was always told that period pain was normal. It’s just part of “being a woman.” Or they said I was too sensitive or should seek psychological treatment rather than seeing a gynecologist. The worst part during that time was not being taken seriously. Neither by medical professionals nor by outsiders. During that time, I received many misdiagnoses. For example, they said my appendix was inflamed, I had chronic abdominal pain, or maybe irritable bowel syndrome. Everything possible was diagnosed, but endometriosis was never mentioned. Only when I visited my current gynecologist in 2020 did he immediately suspect endometriosis. I was promptly referred to a certified endometriosis center, and shortly after, my laparoscopy was scheduled. What was planned as a 45-minute procedure turned into an operation lasting over three hours. Many endometriosis lesions were found.

How did you feel when you received the endometriosis diagnosis?

When I got the diagnosis, I cried. Not because I was sad about it, but out of joy. Finally, I knew what was wrong and, most importantly: I wasn’t imagining the pain. The pain was real. Unfortunately, no one wanted to believe me. I am not crazy, as I was told, but chronically ill. I was incredibly grateful to finally have certainty. A huge weight was lifted off my shoulders, and I could look positively to the future. Unfortunately, I was not really informed about the disease in the hospital. So I had to learn everything on my own. But now I am an expert on my own disease — which was very important to me.

Why is endometriosis so often underestimated as a disease?

I suspect it’s because we are taught early on that period pain is normal. Pain just comes with the period — you just have to get through it once a month. No, you don’t! Severe period pain is never normal, and this should finally be communicated that way in today’s society. No one should have to suffer through pain or take painkillers to go to school or work. I can only advise anyone with such symptoms to consult a gynecologist immediately or to visit a certified endometriosis center. No one has to go through this alone!

Is endometriosis curable, or do you take special medication?

Unfortunately, endometriosis is not curable at this time.  Hormone therapy is often used in endometriosis in the hope of reducing pain. Otherwise, the only treatment option is surgery to remove the endometriosis lesions. However, surgery does not automatically mean you are cured or pain-free afterward. But it can provide relief. This is very individual for each person.  Otherwise, I can only recommend finding your own personal path  and trying various things. Many affected people find acupuncture, osteopathy, pain therapy, pain psychology, rehabilitation, a naturopath, yoga, dietary changes, or various relaxation exercises helpful.  There are many alternatives to alleviate the various symptoms of endometriosis.

Why did you decide to have endometriosis surgery, and what has changed since then?

After all these years, my surgery was medically necessary. It was also very important to me personally.  I really wanted to know what was wrong with me and where my symptoms came from.  Since my diagnosis, a lot has changed. I have built a small endometriosis community and am very grateful for the regular exchange.  Also, I have learned to appreciate my body much more and to recognize my limits early. I am now stronger than ever before!  I have already learned so much about the disease and myself since the diagnosis. I have also met wonderful people through it.

Are there everyday habits that help you cope better with the disease?

Having fixed routines and taking regular breaks already helps me a lot. I have changed my career path and can now work completely from home. Working outside greatly limited my health, so I urgently had to change that. It was the best decision for me. Now I can even sit in front of the computer with a hot water bottle and work without having to justify myself. Over the years, I have developed a positive mindset. Of course, there are bad days, which is completely legitimate and part of it. But I always try to let the positive outweigh the negative. This makes me feel much better in the long run. When I see many things negatively and get worked up, I automatically have more pain, and of course, I want to avoid that.

What advice do you have for people who are unsure if they have endometriosis?

Go directly to your gynecologist. Speak openly about your suspicion and have it medically evaluated. If necessary, I also recommend visiting a certified endometriosis center right away. Specialists there will take you and your pain seriously. The suspicion can then be confirmed with a laparoscopy (a surgery under general anesthesia). You know your body and your symptoms best. Trust yourself! Never let anyone convince you otherwise. I believe you, and I see you.

Dealing with endometriosis can be physically and emotionally challenging. Besides support from a doctor, it can be helpful to contact a self-help group like the Endometriosis Association Germany e.V. to get information and advice.

Affected individuals and relatives can call the free phone number 0341 3065304 to arrange a counseling appointment.