Diagnosed in 2017, Jazz shares her Endometriosis story with us today.
Jazz’s Journey: I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.
EMS lives in New Zealand and was diagnosed with Endometriosis this year – at age 34. This year she exhibited signs of a stroke, dizziness, trouble breathing, all around her period – she fought for a proper diagnosis, and had to fight hard. Stage IV Endometriosis. Not stress. Not anxiety. Not a stroke…Endo.
One of my local EndoWarriors has started a new medication to help with her Endometriosis pain and symptoms, based upon the recommendation of her new physician. It’s Letrozole, which I had never heard of. And she asked me if I had any info on it…so…now I’m inspired to do some research!
What is Letrozole?
Letrozole is the generic name for Femara, a drug classified as an aromatase inhibitor. What is aromatase? It’s an enzyme that is crucial in the creation of estrogen. Aromatase inhibitors have been FDA approved for treating breast cancer in post-menopausal patients. However, it has piqued the interest of the medical community in controlling Endometriosis symptoms. It is not yet FDA approved for this treatment, but is used as an off-label, accepted treatment among the medical community. As of today’s research, there are no indications that drug manufacturers are going to seek FDA approval for aromatase inhibitors to treat Endometriosis.
So today I had my two-year eye exam. You know: you go in ever two years to have your eyes checked and your eyeglass prescription updated.
About 8 years ago I learned that I have a benign cataract in my left eye, located just to the outside of my pupil. My doctor back then told me it’s benign, it doesn’t grow, it just sits there a casts a shadow. However, it’s not visible to me, and it will never affect my eye sight. She surmised I was born with it : it may be due to my premature birth (I was 3 1/2 months early) and have likely had it my entire life. Every two years since, I’d been told by the next doctor that I had a benign cataract on my left eye, and that it was just sitting there, doing nothing.
Angela was 29 when she found out she had Endometriosis. Now 32, she continues to have pain and problems, despite several excision surgeries. She lives in Darwen in the United Kingdom and she and her fiancé are the proud and happy parents of their fur-baby, Alfie. They continue to push on and live, despite these difficulties.
Angela’s Journey: I’ve always struggled with painful and heavy periods since the age of about 14. I was used to going months without one and then the floodgates would open and the Hell would start again. When I was 18 I was diagnosed with Polycystic Ovarian Syndrome. To be fair I was quite lucky with my symptoms. Yes I put on weight but thankfully I didn’t develop excess hair. It was manageable. I was prepared for potential fertility issues but I wasn’t overly concerned. And then it all went wrong. So so wrong.