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An Endometriosis Patient Shares Her Story

My name is Arolyn and I was lucky to intern with Worldwide EndoMarch for the past six months. I met so many endometriosis patients and impacted individuals during this experience. It has really inspired me to continue advocating for patients all around the world for women’s health, most specifically, patients with endometriosis. 

I was lucky to meet a woman prior to this recent pandemic who has been battling Endometriosis for a few years now. She shared a strikingly relatable story to me. She would like to for her name to remain anonymous but wants her journey shared:

“I have had endometriosis the day I started my menstrual cycle. I am now twenty-eight years old and was first diagnosed with Endometriosis back in when I was 20 years old. It was not only until then that my grandmother shared with me she was diagnosed with Endometriosis after her second child. She said after her hysterectomy she saw a complete improvement in the quality of her life. She suffered silently for decades with the immense amount of pain it caused her. 

I want a hysterectomy to be my last resort, as most patients do. I want to be able to live comfortably and confidently with control of endometriosis and prepare my body for a flare-up if ever necessary. When seeking treatment, I am lucky to admit that I have never had any surgeries to treat it, yet. I have been so honest and blunt about the symptoms that I have experienced with all OBGYNs I have seen.

I have been hospitalized for the pain I have been in, I have lost an immense amount of blood during each cycle. I bloat so much so that it looks like I’m several months pregnant. I have sweat uncontrollably. I have had intense nausea and vomiting with migraines that have caused me to lose days of sleep too. I have sciatica flare up with every period, so much that hurts to walk, let alone move. My vision was often impacted as it felt ‘spotty.’ 

Endometriosis took me out for days. Earlier when I was unaware of my diagnosis, I would miss school and social events because I was typically bedridden. My first OBGYN said it is normal to have those symptoms. One year later I went to another OBGYN and she said the severity and intensity were not normal. She ran quite a few tests including an ultrasound and clinically diagnosed me based on family history would most likely mean I have it as well. She also believes that this was not just hormonal imbalance and it might take a few trials to help relieve symptoms but believed that my endometriosis symptoms could be controllable through birth control. I started on the pill which did help with some symptoms for a year, still not completely liveable. At the following annual OBGYN appointment, my doctor offered another option. An IUD. It startled me at first, but after researching it on my own I decided to give it a try to localize where the majority of my pain was coming from with a medicated (hormonal)  IUD. This was the best decision I have ever made for myself and tremendously aided in the quality of my life. With an IUD, my doctor suggested taking vitamin supplements that include Vitamin B-12 and Vitamin D.

With all these techniques to treat endometriosis, I am consistently warned by my doctor that because I may not get the flare-ups now nearly as severe, it doesn’t mean they won’t come back. I still have those risks of infertility, pregnancy risks, and childbirth issues. My honesty got me with where I am today. I continue to take one day at a time. With my pain reduced to a level that is manageable, I am just more than just thankful. ”

She concluded that just because this works for her, doesn’t mean this can work for other patients.  She feels blessed to have found a doctor she has trusted throughout this entire diagnosis and by providing healthy treatments and supplements that work for her. She feels lucky that her body has been responsive to the treatment and therapies in a healthy way because she knows that for many endometriosis patients, this may not be so easy. She stresses that remaining truthful with doctors and other medical professionals will get any patient the help that is needed. 

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