“When I discuss it, I’m raising awareness.”

Interview with Endometriosis Patient Lisa

During her school days, Lisa was often wrongly accused of truancy. In reality, she was dealing with such intense pain and bleeding that attending classes was nearly impossible. Nowadays, Lisa openly discusses her endometriosis with the people in her life, including her music professor. She no longer tolerates unfounded accusations. In our interview, she shares her journey to diagnosis and her ongoing experience with the condition.

Lisa: Of course, I’m Lisa, 31 years old, and I hail from the beautiful Schlossholte. I’ve been living with endometriosis since 2008.

What does endometriosis mean to you?

Lisa: Endometriosis, to me, means pain and restrictions. Lately, I’ve noticed how much I have to schedule my life around my menstrual cycle. Everything, from events and family gatherings to appointments, needs to revolve around my period because, during that time, I’m completely incapacitated and unable to participate in regular daily life.

Lisa: I consider myself lucky that it didn’t take too long to get diagnosed. My first period came at 14. The initial months were uneventful, but soon, I began experiencing excruciating abdominal cramps so severe that I couldn’t even stand up. For over four years, every month, I was bedridden in the fetal position, crying and unable to attend school. My mother was at a loss, not knowing how to help me. My gynecologist at the time didn’t take my condition seriously, advising me to take ibuprofen and that everything would be fine. However, my situation deteriorated progressively. Luckily, my mother’s best friend also had endometriosis and suspected it in my case. She recommended that I consult her gynecologist. There, I was advised to undergo a laparoscopy, which led to the diagnosis of endometriosis.

You are one of the few who received an early diagnosis. How did those around you react when you were diagnosed?

Lisa: Thankfully, my parents always took my condition seriously. They extensively researched endometriosis and had a friend of my mother’s who also had the condition, providing invaluable support. Following my surgery, I was prescribed birth control pills, and for almost eleven years, I didn’t think much about endometriosis. I stopped taking the pills a year ago, and that’s when my endometriosis symptoms intensified once more, making me confront the condition again. At work, it’s challenging because the majority of my colleagues are male. While I attempt to explain my condition, I’m met with typical, unhelpful remarks like “You should just have a child” or “You should get a hysterectomy.” However, if you desire children, that’s not a viable solution. Fortunately, my boss at work is aware of my endometriosis and is supportive, emphasizing that my health is the top priority. Among my coworkers, I’ve observed a general lack of awareness about the condition, and the typical sayings are pretty prevalent.

There are now a few women at my workplace who claim to have endometriosis. According to my boss, two of them even provided medical certificates asserting their endometriosis diagnosis as a reason for not getting vaccinated. I happened to run into one of them in the hallway and asked her about it, only to learn that she hadn’t received an official diagnosis yet. Her gynecologist had just certified it for now. It seemed she was using it as an excuse to avoid vaccination, even without genuinely experiencing the condition. It was impertinent for her doctor to issue such a note without a confirmed diagnosis. Fortunately, my experiences with people outside work have been positive, and I’ve become adept at brushing off the typical remarks.

What, in your opinion, contributes to the continued underestimation of this condition?

Lisa: One of the challenges with endometriosis is its varying impact on individuals. Some, like myself, experience severe problems due to the condition, while others may have relatively mild symptoms. It can be challenging for those who don’t have endometriosis to comprehend that the condition manifests differently in each person. Just because someone doesn’t suffer as intensely as others doesn’t diminish the pain experienced by those who do. I’ve encountered instances where women were diagnosed with endometriosis primarily because of their infertility concerns rather than severe physical symptoms. This variance in symptom severity has led to a lack of credibility for many who struggle with the condition.

Lisa: I’m still in the early stages of recovery from my recent operation. Currently, things get tough during my menstrual cycle. For the first two days, I am incapacitated. I still have an endometriosis lesion on my intestine that hasn’t been removed yet, and it causes extreme pain. This pain occurs during my period and includes severe perineal pain, discomfort when using the toilet, and even while sitting. I experience heavy menstrual bleeding; it’s astonishing. Tampons and pads only last about an hour, and then I must change them. Dealing with this at work is incredibly challenging. I have to schedule off-site appointments accordingly. Moreover, I suffer from severe circulation problems, back pain, and intense abdominal cramps that radiate to my legs. In my daily life, my tailbone pain is particularly bothersome. I have coccyx pain that varies in intensity from day to day, but it’s a constant presence. Some days, sitting and walking are excruciating. The medical response to my tailbone pain has been unhelpful. Doctors conduct MRI scans and conclude that there’s nothing wrong. When I mention my endometriosis and its connection to the pain, they often ignore it. I was also frustrated when I had surgery; the endometriosis lesions were removed, but the one on my bowel was left untouched. I initially sought treatment at a regular hospital, but I now have an upcoming appointment at an endometriosis center.

Lisa: Nein, noch nicht. Ich habe nach der OP nochmal mit meiner Frauenärztin gesprochen, die aber immer wieder sagt, ich solle nochmal die Pille nehmen, obwohl sie von den gravierenden Nebenwirkungen, die ich hatte, weiß. Ich habe mich dann von ihr abgewandt, bin zu einem Spezialisten gegangen, der aber genau das Gleiche gesagt hat. Er wollte mir das Gelbkörperhormon aufschreiben, aber ich habe ihm gesagt, dass ich eigentlich gar keine Hormone mehr nehmen möchte, weil es mir damit wirklich schlecht geht. Ich bin in der tollen Selbsthilfegruppe und habe ganz lange mit einer Bekannten telefoniert, die schon lange Endometriose hat und sie hat mir den Tipp gegeben, nach Münster zu gehen. Ich habe auch das Glück gehabt, dort einen Termin zu bekommen, gehe dort zur Untersuchung und dann schauen wir weiter. 

What methods or strategies manage your endometriosis symptoms throughout the day?

Lisa: Heat! My hot water bottle is my constant companion. I typically apply it to my lower back or stomach. Unfortunately, I haven’t found a solution that effectively relieves my gut pain. For that, I endure it during those one, two, three, four, or five difficult days. I’ve also been struggling to find a remedy for my tailbone pain. Physical therapy didn’t provide much relief, and while I engaged in sports targeting my coccyx, it offered only minimal help. Given that I have a desk job and spend my days sitting, I rely on a heating pad and pain relievers. However, that approach can lose effectiveness over time. So, I’m actively exploring alternative methods. I’m not a fan of pain medication and am currently experimenting with acupuncture.

The possibilities seem endless, and I keep discovering new options when I talk to fellow patients. For instance, I’ve heard about acupressure mats that you lie on to relax. I believe it’s crucial to find what works for you individually.

Lisa: I’ve owned an acupressure mat, and I love it. It can be a bit uncomfortable when you first lie on it, but the initial discomfort subsides after a minute, and you experience a soothing warmth. I find it to be very relaxing and helpful. However, it doesn’t do much for my tailbone pain. Still, when I use the mat, it distracts me from it, even if it doesn’t provide a long-term solution. I’ve been using the mat daily for about a year.

Lisa: I’ve been sugar-free for a few months now. It’s challenging but doable. I’ve also eliminated red meat from my diet and reduced my overall meat consumption, mainly opting for poultry when I do eat meat. I believe these changes have had a positive impact. Additionally, I’ve incorporated lady’s mantle tea and green tea extract into my routine. During my last period, I noticed that my perineal pain was less severe. Whether this improvement is linked to the tea and extract or if it was just a good month, I can’t say for sure. Nutrition can be a bit perplexing for me. While there are studies on lady’s mantle tea and green tea extract, I find information about dairy products confusing. I primarily consume plant-based yogurt and have cut out milk. The only dairy product I still enjoy is cheese. I often find myself wondering what’s allowed and what’s not.

That is also highly individual. I have significantly reduced my carbohydrate intake because I have noticed that I feel worse whenever I consume foods like rice, for example. Sometimes, I crave rice but then regret it shortly after. Breakfast options like porridge or muesli, which are healthy for some, do not work for me. It is a matter of personal trial and error. I have not given up dairy products. I have eliminated industrial sugar, though. If you visit and want sugar for your coffee, you will not find it in my house. Whether cutting out sugar makes you feel better, there is nothing wrong with reducing sugar overall.

Do you want to have children, and if so, does endometriosis play a role in your plans?

Lisa: I do desire to have children. I also wanted to have children with my last partner, so I stopped taking the pill. We were already in the process when he suddenly changed his mind. I was understandably upset because he knew about my endometriosis, and I had made it clear that I was coming off the pill to try to get pregnant. Then he changed his mind, leaving me in a difficult situation. The desire to have children is still there, but it isn’t easy without a partner.

In some hospitals, patients are told to try to get pregnant after endometriosis surgery. But if you don’t have a partner, it’s not that simple.

Lisa: That’s precisely what I was told during my pre-op consultation at the hospital. The doctor suggested I should try to get pregnant, and in my surgery report, it states under therapy recommendation, “Aim for pregnancy.”

Pregnancy isn’t a therapy for endometriosis. No one guarantees that you will feel better afterward.

Lisa: What surprised me when I spoke to someone in the support group was that I’d never had a rectal exam, even though I have endometriosis in my bowel. She mentioned that I should have had a rectal exam in conjunction with the laparoscopy and also by the gynecologist before. I found it shocking that I went to a supposed specialist who had read the surgery report stating I had endometriosis on my bowel, yet he only performed a vaginal examination.

During the eleven years I was on the pill, I did not address my endometriosis because I had no issues during that time. I had recurring yeast infections, but I did not attribute them to endometriosis. It was only recently that I realized this and sought out conversations with other patients, which helped me resist immediately resorting to pill therapy. I experienced extreme side effects during those eleven years, which changed me as a person, and I don’t want to go through that again.

Is there anything specific you have learned throughout this journey that you want to share with other women? What advice would you offer to those facing similar challenges?

Lisa: Find doctors who take you seriously and are genuinely concerned about your well-being. Engage in open conversation about it so more people are aware of the condition. I never used to talk about it, but now I’ve started to believe it’s essential to raise awareness. We’ve also discussed dating, which can be extremely challenging when explaining the condition to a man. Some men might look it up, read about the pain during sex, and then decide it’s too much to handle. My advice is not to let it discourage you. Many women tend to hold back a bit. My message is, don’t do that! Embrace the fact that you have this condition, learn from it, and explore various approaches beyond what doctors recommend.

Thank you very much, Lisa. Our conversation was very insightful, and I hope you will receive the help and support you need in your future medical examinations so you do not have to endure pain on your own.