Endometriosis is often discovered by chance after years of illness with a wide range of symptoms. Some of the symptoms are difficult to diagnose because they are non-specific, such as migraines, fatigue, abdominal pain, or back pain, which usually occur during menstruation but can also cause discomfort throughout the cycle.
It is not uncommon for those affected to come across the condition themselves on the internet without it having been detected during a gynecological examination. Sometimes the most obvious symptom is an unmet desire to have children. In this case, it can be helpful to talk to other people affected by the condition to help make sense of your own symptoms.
Sharing experiences is important!
We want to support you here—by highlighting similarities and differences and illustrating the diversity of the condition—and we are therefore introducing you to six people from our community who are affected by endometriosis. Of course, there are also first-hand tips on how to make living with endometriosis more manageable.
You are welcome to share your own story in the comments below and help potentially affected people get an idea of their symptoms and understand them sooner.
When and how did you realize that your cycle was different from other people's?
“To be honest, I didn't really notice that my cycle was different from other people's, as I had been taking the pill since I was 16 and, apart from stronger migraines, I always had relatively harmless lower abdominal pain (not to mention that it wasn't my own cycle, but the pill-controlled one). I stopped taking the pill at 28 because I simply was no longer convinced by it and had been researching the topic and reading a lot about it in the years leading up to that. Furthermore, my desire to have children was a priority, and I really wanted to “cleanse” my body of all hormones beforehand.”
What symptoms do you experience/did you experience?
“When my husband and I really got down to planning for children in early 2020, I noticed month after month that it wasn't that easy, even though I had stopped taking the pill early enough, in my opinion. My cycles were very long and irregular, and I continued to have—fortunately, always “only” severe migraines—and often felt weak and listless.”
How long did it take for endometriosis to be diagnosed as the cause?
“It took almost two years [after stopping the pill] before I finally became “pregnant” and ended up in the hospital with an ectopic pregnancy. I can still remember the day exactly, because I was sitting on the floor in the office and was still trying to quickly do my tax return when I suddenly had the worst pain of my life. On top of that, I had heavy bleeding, even though I should have been in my fertile window. Fortunately, my husband drove me to the hospital, and there they told me with a test that I was probably pregnant. Later, I had emergency surgery at night because my fallopian tube was about to burst and the diagnosis could only be made by laparoscopy. During that procedure, the shocking diagnosis of “endometriosis” was also made. All the endometriomas were removed during the operation.”
So it took years before someone could finally tell me why I was always so weak and tired and had such severe migraines. And that was it. Because after my diagnosis in the hospital, endometriosis was never mentioned again, neither by my gynecologist nor anywhere else. I once again read up on the topic myself and tackled my own “healing” without the help of doctors or conventional medicine.
If I [...] hadn't had an ectopic pregnancy, endometriosis probably would never have been diagnosed, or not until much, much later! My migraines, which I have had since my youth and teenage years, were always dismissed. I was told to keep a migraine diary, exercise, reduce stress... But there are women who probably don't have severe lower abdominal pain and still receive an endometriosis diagnosis, and that apparently doesn't exist in many conventional medical minds.”
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
“Since I am currently pregnant again (23 weeks), I currently have no symptoms or, more accurately, I attribute the symptoms I do have to the pregnancy: back pain, migraines—fortunately much less often—fatigue, and exhaustion. But who knows that 100%[ly]? Before that (during my long, irregular cycles), I suffered from symptoms for 2-3 days, especially migraines often kept me bedridden and I couldn't go to work. “
What helps you with acute endometriosis symptoms?
Rest, darkness, tea, green tea capsules, and plenty of sleep have helped me well with (endo) symptoms so far.
When and how did you realize that your cycle was different from other people's?
“I would say since I was 16. I always had particularly severe pain compared to my friends and then, primarily for contraceptive purposes at the time, I took the pill for 4 years. The absence of menstruation and the disappearance of the pain that came with it were then a nice side effect.”
What symptoms do you experience/did you experience?
“I have [..] very severe pain during menstruation, but it is also particularly bad around ovulation. My bowel movements also seem to be affected, at least I often have severe, stabbing pain there too. Back pain is unfortunately part of everyday life, sometimes more, sometimes less, depending on the cycle phase. The lower part of my left lung also hurts very severely at the same time, even though the other symptoms are stronger (menstruation and ovulation).”
How long did it take for endometriosis to be diagnosed as the cause?
“Last month, around my ovulation, I had such severe pain that I woke up from it in the morning and could no longer move properly. I called my gynecologist directly, I was allowed to stop by before the practice opened, and she detected an approximately 3 cm endometrioma on my left ovary with an ultrasound. So I am still very much at the beginning of the diagnosis. But my gynecologist gives me the feeling that she takes endometriosis seriously and knows a lot about it. A laparoscopy will probably be done in May to confirm the (according to my gynecologist, very clear suspicion of endometriosis).”
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
“I am really rarely symptom-free; there are always stabbing pains in different places now and then. Around my ovulation and menstruation, I always have to take painkillers, and then it is manageable (menstruation about 2 days very bad, ovulation 4-5 days).”
What helps you with acute endometriosis symptoms?
I have had severe pain with fainting, vomiting, and sweating at the worst in my period since my earliest memory of menstruation. I always have cramps on the first day of my period, sometimes more, sometimes less severe, and back pain sometimes daily, as well as PMS every month. This week I had the worst pain ever outside of my period for the first time. I was prescribed the pill at 14, but I wasn't properly examined for endometriosis. At 26, I stopped taking the pill due to severe side effects such as migraines, and then the symptoms came back all at once. I lived vegan for 3 years, incorporated osteopathy, acupuncture, and yoga, but I still can't really get it under control. That is also why I have given up certain things again. Emotional stress is the biggest trigger for severe cramps.
I only got the diagnosis this year. But based on my own research, I have known since I was 26 that I have endometriosis—I diagnosed myself. Fortunately, I am only unable to work for 1-2 days when it is really bad.
When and how did you realize that your cycle was different from other people's?
“I would say since I was 16. I always had particularly severe pain compared to my friends and then, primarily for contraceptive purposes at the time, I took the pill for 4 years. The absence of menstruation and the disappearance of the pain that came with it were then a nice side effect.”
What symptoms do you experience/did you experience?
“Very severe pain, accompanied by diarrhea and vomiting. A very pronounced feeling of illness, I am weak, often have circulatory problems, and sleep a lot to escape the pain.”
How long did it take for endometriosis to be diagnosed as the cause?
I stopped taking the pill in 2016 because I felt uncomfortable with the hormones, and from then on the pain got worse and worse. I went to my gynecologist frequently and talked to her about it. The diagnosis was made in 2019.”
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
On average, I suffer from endometriosis symptoms for 10 days a month. I am not unable to work because of taking painkillers.
What helps you with acute endometriosis symptoms?
Extreme warmth from a hot water bottle and a lot of Ibuprofen 600.
When and how did you realize that your cycle was different from other people's?
I noticed it after stopping the pill after 15 years. Every cycle got worse.
What symptoms do you experience/did you experience?
I have cramp-like symptoms, it is worst at night. I can only urinate in pain, so that my legs turn blue from the pinching. In addition, nausea, dizziness, and bowel complaints are added. The pain lasted 2-3 weeks. So actually I was pain-free for a week in the cycle before it started again.
How long did it take for endometriosis to be diagnosed as the cause?
Actually, it was diagnosed relatively quickly. But also only because I started researching and subsequently requested a laparoscopy. A year passed from stopping the pill to the first laparoscopy.
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
About three weeks of pain and one week symptom-free.
What helps you with acute endometriosis symptoms?
For acute symptoms, I took up to 4 pain tablets so that I could work. I walked around permanently with a hot water bottle. Currently, I am taking the pill after my pregnancy to avoid getting new endometriosis foci and to have some quality of life again. But actually I don't want to take the hormones. I chose against the pain.
When and how did you realize that your cycle was different from other people's?
In school (Abi), I often had to stay home because I had unbearable pain.
What symptoms do you experience/did you experience?
Severe cramps (pulling in legs and back), nausea, vomiting, dizziness, acne, hair loss.
How long did it take for endometriosis to be diagnosed as the cause?
> 10 years
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
2-3 days
What helps you with acute endometriosis symptoms?
Generally, a vegan diet and a double daily dose of magnesium one week before my period (agreed upon with my doctor), avoiding sugar & gluten, pain relief drops, a hot water bottle, and rest.
When and how did you notice that something was different about your cycle compared to others?
As early as the end of puberty, I noticed that this pain was not normal.
What symptoms do you experience/did you experience?
Lower abdominal pain + cramps, diarrhea, exhaustion
How long did it take for endometriosis to be diagnosed as the cause?
I had my first laparoscopy in 2020—so almost 12 years later.
How many days a month do you suffer from symptoms, and on how many days are you unable to work?
I have symptoms almost every day. If I go to work or do other things and have severe symptoms, it is only with pain medication. I often go to work anyway.
What helps you with acute endometriosis symptoms?
Unfortunately, often only pain medication. Otherwise, warmth and rest.
Did you like the honest personal stories from women in our community? Whether you simply found them interesting or were able to take away useful information for yourself, we are happy if you tell other affected people about them. In our magazine, we also have an exchange between women* who suffer from PMDS and a very personal account from a woman with breast cancer.
