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.
So, today I had an appointment with my gynecologist and surgeon, Dr. Mel Kurtulus. It was to discuss my Endometriosis symptoms, which I felt have been worsening. My (two) July periods, and my August period were horrendous. Going through my 2017 Pain Diary, March and April were also up there on the pain scale. I was all prepared to go on in and ask for another surgery…and possibly a hysterectomy just to rid my life of periods (since that’s when most of my pain is present). I know it’s not a cure, but it would most certainly help some…
Then, last Thursday evening I started my period: the night before I was to leave for a family camping trip…I was devastated. I expected to be fully-medicated the entire weekend. I packed my Naproxen Sodium, my Tylenol 3 with Codeine, my Tramadol, and my Zofran. BUT…surprise surprise…my period cramps NEVER rose above a 1 (on a scale of 1-10) for pain levels! I didn’t even have to take an Ibuprofen…the ENTIRE weekend! (Insert elated exclamation here)
Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade. Now she’s 30, living in San Diego, and she’s found our little support group. I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend. Her story follows…
Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…
I was contacted by one of our readers who shall remain anonymous. She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder. Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery. In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms. Her symptoms are worsening…
She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.
So, like a lot of other people with Endometriosis I’ve done a few things : 1) Lupron Depot injections, 2) NSAIDs, and 3) birth control pills. Each of these medications, and any type of hormone treatments, can make a person susceptible to sunburns or sun sensitivity. This past weekend I was out and burnt the tops of my hands, and man did it happen quick and did it itch!! Ugh. Which got me curious: why does it make me more sensitive? I remember reading in my Lupron and birth control packets about the sun sensitivity warning. But what’s going on with my body? Time for research!
There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis. And it’s estimated that 5 million in the United States have Endometriosis. 1 in 10 supposedly have, or will have, this disease. One. In. Ten.
An incurable, recurring disease which causes pain and infertility, among many other symptoms. A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both. And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before. And the only tried and true way to diagnosis the disease with with surgery!
So one thing hit me today. This disease is a driving economic force! What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices. If you live elsewhere and are curious, I encourage you to figure this out. For all of you living in the States, let’s find out together!
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.
I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!). I was diagnosed when I was 35 years old in 2014.
My Journey: I started my period when I was 12 or 13 years old. I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal. I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow. I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this. Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…
Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old. Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.
Courtney’s Journey: I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!