Leidy lives in Germany and was 35 years old when she was told she had Endometriosis. Now 42, she would like to share her story with everyone cares to read it. A battle which literally spans the globe in search of answers, a series of numerous misdiagnoses, and Leidy is one hell of a Warrior.
Leidy’s Journey: I am now 42 years old but since my first period, I have had problems.
My main problem is in my bowels. Which misled my specialists to find the correct diagnosis. The only issue I had, related to my period, was irregular bleeding.
Each month I bled during my ovulation. My period lasts sometimes more than a week. And I bled during sexual intercourse. The pain during the period was not severe and Ibuprofen usually was enough to alleviate the pain.
In my twenties, I began to see several doctors; different specialists: gynecologists, gastroenterologists, urologists, etc. The gynecologists couldn’t see anything abnormal as well as the other specialists. I was admitted to the emergency room several times for possible appendicitis. But always after common blood tests, I was released. I was recovering from the abdominal pain within one or two days. Every month I had three days in which I vomited. I had extreme acidity and tiredness, with pain on the right side of my abdomen. My feeling during these attacks was that I had a strong infection. But blood tests never showed any abnormality.
I am from Colombia but I have lived in three different European countries because of my profession; I’m an engineer.
In Colombia, I was diagnosed with chronic gastritis and IBS.
Between 2005 and 2013 I lived in Spain. There, it was the same pattern with my illness. And I was always referred to the same specialists. As the doctors couldn’t find a solution for my almost every month illness episode, I had to survive with it. I managed it with exercise, diet and rest. I do sports a lot, training every day, which helps a lot.
After 2010, additionally to the symptoms above, I began to have back pain and episodes of sciatic pain. The traumatologist blamed running and a slight scoliosis I have. But in 2014 I began to get worse. I began to have pain in the joints of my whole body. I was in pain 24 hours every day. I stopped working and moved to the UK to pursue a Master’s degree. And I became really sick. I began my Master’s in August 2014. The same year, from June until I started my Master’s, I was almost unable to move. I was told I might have multiple sclerosis or fibromyalgia but all the tests that were done came normal. So, the only medication that I took was amitriptyline for the pain.
After three months of resting, Epsom salts baths, many hours of sleeping, supplements, diet, I managed to recover enough that I was able to walk. During these three months, I couldn’t even
shower without having to rest. And I had serious neurological issues such as pins and needles in my hands and sometimes unable to walk because my legs were too weak.
Somehow I managed to deal with my studies. But I was in pain every day. I also had brain fog and the eternal feeling that I had a strong infection. I didn’t stop going to my university’s general practitioner (GP) who did all the posible blood tests. He tested me for vitamins deficiency, C-reactive protein, HIV, hepatitis, etc.
Only after more than a year in constant pain, in 2015, some tests came with bad levels. I had anemia and low calcium levels and an X-Ray showed bursitis in my hips. One day, in 2015, the GP (who was running out of ideas) due to my irregular bleeding ordered the CA125 test. The result showed alarming levels. Immediately I was referred to an oncologist gynecologist specialist who ruled out that it was not ovarian cancer but endometriosis.
At that point, desperate, I began a gluten free diet which left me without pain in 2 months. I am almost sure I am not celiac because a celiac test was done in Spain and came negative. But somehow a gluten-free diet helps with the endometriosis pain.
Still, I continued with the monthly episodes as before. I felt again as I did before my near collapse.
In January 2016, I began to work in Germany. I went to the gynecologist and gave her all my past medical history. She began to do tests. Everything was OK. But in 2018 I requested to see an endometriosis specialist. Normal ginecologists usually don’t understand about endometriosis.
The specialist in endometriosis immediately suggested a laparoscopy surgery. I had the surgery in 2018. Endometriosis was found in my left ureter, bladder, Douglas pouch, and peritoneum area. My ovaries were free. So my endometriosis was affecting my abdominal organs more.
After the surgery I recovered, but the past year I began to have issues again. I was for several days with migraines, extreme fatigue, brain fog and the sensation of having a strong flu. I had, over the last part of the year, an ablation due to an abnormal thickness of my womb was found during a check with my endometriosis specialist. Polyps were removed and the endometriosis specialist suggested adenomyosis.
Last week (May 2021), I had a hysterectomy. The endometriosis specialist found endometriosis in the sacro uterine ligament and in the rectum. After I recover, I will see a gastroenterologist specialist in endometriosis to rule out if the endometriosis has invaded the walls of my bowels.
If this would be the case, I will need another more complicated surgery to remove parts of my bowels where the endometriosis has penetrated.
And this is the current state. I wish people would understand that it is not only symptoms related to the period. The whole body can collapse with this illness. And when a woman has recurrent
symptoms of appendicitis and bowel problems with abnormal bleeding, and no tests show abnormalities, endometriosis should be ruled out.
Additionally, when this illness is left untreated, the whole body is affected and you will end up being diagnosed with fibromyalgia, sclerosis multiple, rheumatology, lupus, thyroid disease, etc. Meanwhile, the endometriosis continues progressing. Still, keep in mind that sometimes women can have one or more immune system illnesses.
Finally, alert your siblings, in my case my two sisters realized they also have endometriosis. My older sister had the uterus removed due to cancer but endometriosis was found as well. And my youngest sister had a laparoscopy where endometriosis was removed. My mother didn’t have endometriosis. But her sister has a lot of illnesses due to an untreated endometriosis.
If you would like to reach out to Leidy to talk about her Journey, she has given me permission to share her email address. Pleas feel free to send her a note.
I want to send a special Thank You out to Leidy for being brave enough to share her journey with us today! We are wishing you the best with your recovery and ongoing search for answers. Please keep us posted on your bowel journey!! ❤ Yours, Lisa.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.