I didn’t have any real problems with my period until I turned 21. I was in NYC at the time, volunteering for a non-profit, when I got the period I will never forget. I woke up with some cramps and discomfort that got increasingly worse as the day went on. I ended up vomiting and having what felt like constipation and diarrhea at the same time, in the back washroom of an IHOP diner in Harlem. It was the worst pain I had ever felt. I ended up taking an ambulance to the Harlem Hospital, where I was diagnosed with unidentified gastritis. I refused to believe this could be a long-term problem, but like clockwork every month, the extreme cramps, pain and vomiting would return, and I would be back in the ER. I had 4 ER visits before I was finally able to see an OBGYN who diagnosed me with Endometriosis.
I tried herbal supplements, essential oils and stopped eating gluten and sugar, but nothing made even the slightest difference. Then I was put on birth control, which also did nothing for my pain, even when I used it to skip my period. In fact, one brand of birth control made me nauseous 24/7 for 2 months. Literally every minute of every day, all I could think about was throwing up.
I went back to the doctor, by this time my second OBGYN referral, who told me I had only one other option: to try Visanne (Dienogest). If that didn’t work, there was nothing more they could do for me. I am currently taking Visanne, despite its high price tag and side effects, which have demolished my sex drive and still leave me nauseous some of the time. It has stopped my period completely, which has helped with the worst pain, but I still have lesser pain most days and occasionally still have vomiting and bowel problems.
Because of this disease, I had to give up all of my hobbies and career ambitions. I used to be a singer, dancer, actor, photographer, musician and active volunteer in the community for charitable and animal rights causes. Now, I can barely make it to my part-time job, and it is rare that I can even make plans to see a friend or to go to a restaurant because of the near-constant pain and symptoms. I had to expedite my graduation from university and was not able to complete my planned honours thesis, second major or minor because the pain and complications from endo made it too difficult for me to attend school. It is like I am a different person now. It feels like I went off to New York for my internship and never came back.
In the early days, before I gave up on even going to the ER, the hardest parts were the attitudes and lack of compassion I received from other people. My employers, friends and even family members didn’t get it. I was told to just “suck it up” and to accept that “everyone has pain,” to “get over it” and realize it was “normal.” My family even refused to pick me up from the ER (a 5 minute drive away) after I had been on morphine, telling me I should walk the hour-long trek home.
Luckily, I do have some allies out there. First off, my sister happens to live right near Dr. Andrew Cook of the Vital Health Institute in California, one of the top endometriosis surgeons in the world. As a Canadian, I will have to pay completely out of pocket for this surgery, which has been estimated to cost $22,610. I have started an online fundraiser and endo awareness campaign at www.jennissurgery.com to help me raise funds for my treatment and awareness about chronic illness.
Secondly I am so grateful for the “sisters” and supporters I have met through endo Facebook groups online. Knowing I am not alone is such a comfort, and my heart aches for all of the other people who have suffered so long and so much because of this horrible disease and other chronic illnesses.
So where does that leave me now? I hope I can withstand the pain of tomorrow. I hope I can raise the money for my surgery. I hope effective endometriosis treatment will be available to all women. And I hope one day it won’t be considered “normal” to be in pain. This is a fight I am determined to win.
Thank you for reading my story and for your support.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.