Nadia is the team leader for Team Zimbabwe. They’re putting together the first ever EndoMarch in their country and are hoping it will be a great success. They are also hosting a February 27, 2016, awareness campaign with guest speakers to try to not only raise awareness of our illness, but hold in-depth conversations about possible causes and future treatments. Nadia and I have been talking for the past several days and she’s allowing me to share her story with you today.
I was 12 years old when my period started the thing I remember the most about that day was the pain. I remember asking my mom, was it normal to have so much pain and feel sick when periods start? We both assumed as it was my first period maybe that’s why it hurt and maybe it would get better on my next one, unfortunately things only got worse from then. I remember sitting and school and during the lesson I got very light headed, and the pain was so bad and I was so embarrassed to even say where I was hurting, being in a coed school I couldn’t say not only did my tummy hurt but my intimate areas felt as though someone was continuously stabbing me with a knife and I just wanted to throw up! I remember being laughed at in the sick bay at school and being told “you’re just weak and it can’t be that bad, but we’ll call your mom to pick you up for your “period pain!” I had spoken with other girls and none of them seemed to have been experiencing what I was, none of them had to miss school because of their periods so I never really understood why I was having such a horrible experience with mine!
My mom said she would have cramping but nothing like what I was experiencing, it broke her heart when she would see me bedridden for days sometimes, missing school each month, throwing up, having migraines occasionally passing out from the pain and the worst pain was just going to the bathroom to have a bowel movement, that felt like my insides were being pulled out of me along with the stabbing pain! So after many visits to Doctors I was always dismissed saying it was normal to have period pain, and nothing was wrong with me and I was probably just exaggerating symptoms and an attention seeker and it was all in my head, I’d probably grow out of it , and maybe once I was sexually active it would get better. The word “ENDOMETRIOSIS” never ever came up as it wasn’t really heard of those days. So I went through my teens thinking it probably was all just in my head, and I was just unlucky and have bad periods. I’d miss out on a lot of things like sports or just normal things teens did because of my period!
I got married at the age of 21 and a lot of my symptoms had lessened when I was on the pill. Intimacy with my husband was not a problem but got painful and I always bled after intercourse after I got off the pill, and that’s when I knew that what I was experiencing was not normal! It was only then at age 22, I was diagnosed with stage 4 severe “ENDOMETRIOSIS” and told that I would never be able to conceive! I was relieved to finally be diagnosed and that I wasn’t crazy, but infertility shattered me and is something that really was so difficult for me to process! Then came the surgeries, and many unpleasant tests, and Invitrofertilization cycles, medications which have horrible side effects and literally made me feel crazy!
Thankfully I have a very caring, loving supportive husband and my family who have always been by my side. I would get the “when are the babies coming?” People really couldn’t understand why I “always” sick for a “young” lady but looked fine on the outside, I was constantly being judged for missing functions and I’ve heard some pretty crazy things over the years like it’s a curse, or you’re not strong enough in your faith etc, but seriously how can 176 million women be cursed with such a disease? I eventually ended up staying home and started staying away from functions a lot as I really couldn’t hide behind a fake smile, or depression, answering the same questions or would just feel uncomfortable with the bloating that can look like a women who is 6 months pregnant! Its ok I guess if I never really understood what was happening to me all these years,how could anyone possibly understand, when there is not much awareness about it, I still find myself having to explain to people what Endometriosis is and what it means. In Indian culture it’s really difficult as you cannot speak about periods, I couldn’t even say the word period in front of my father and brothers as it was such a taboo subject and still is today. So how do I tell outsiders and extended family I had to cancel plans as I was bedridden because of my periods, my periods make me really sick, not just when it’s that time of the month, I’m in pain a lot of time and over the counter pain killers don’t help me in anyway. This is why I want to share my story as this is a disease that no women regardless of race, age or religion should ever feel ashamed to speak about. This disease does not discriminate it can affect any women at any age. It is a physically and mentally draining disease to live with, as it can cause many other problems with your internal organs, along with depression and infertility and affects relationships.
Now at age 34 I have reached a point in my life where I am tired of constantly being judged or labeled “always sick” or “lazy” “anti-social” I feel that by sharing my story I can reach out to many women and let them know they are not alone! I felt alone for so many years, and maybe people will have a better understanding of the disease if women speak out. I could never keep a job as I would always miss work a lot of days, by profession I’m a Montessori teacher and loved my job but had to give that up too. My journey with endometriosis and infertility has no doubt been a tough one! Each day is a battle and I can be fine but never really know when the pain or other symptoms will start. When you hear the word cancer everyone understands what it is because it’s terminal. When the word ENDOMETRIOSIS is mentioned, most people haven’t even heard the word or don’t understand it. It is not cancer, but it metastasis like cancer, you can experience a lot of cancer symptoms and fatigue only difference is that it won’t kill you. It is an extremely painful and horrible auto immune disease. From a financial aspect it is also very taxing and many women cannot afford to get treatments or medication as it is so expensive. I have been fortunate enough to have treatments and hormone therapy but my heart goes out to the many women who cannot afford any of that. I’ve had 4 laparoscopies one laparotomy as well as 2 failed ivf cycles. I can say I’ve had to educate myself a lot about the disease so as to find the right doctor and treatment for me. I finally did a few years ago and he listened to me and believed me and advised me to see an endometriosis specialist here in Zimbabwe as he knew that hysterectomy was not the solution or cure, and maybe excision surgery by a specialist is what I probably needed to enjoy a better quality of life. I did have excision done a few months ago, I am so grateful for the doctor who did my surgery and have seen an improvement after surgery as well as being on my progestin therapy Vissane I do have a better quality of life now. I do have still have Adenomyosis in the uterus and still infertile, but I think having my endometriosis excised as well as having a frozen pelvis fixed(my organs had fused together including the walls my intimate areas) as a result from previous surgeries, really has had a positive result!
Ladies please do not suffer in silence March is awareness month so please help get awareness out. There are many support groups online now days for endometriosis it really helps to have that support and know that there are many women fighting this disease, WE NEED A CURE! Endometriosis is one of the leading causes of hysterectomies and infertility, 1 in 10 women/girls are diagnosed. It can take up to 10 years to get a diagnosis, so getting early diagnosis & appropriate treatment is so important! It’staken me a little over 20 years to share my story, I am so glad that I have finally broken my silence and hope this will help girls/women who are in the same situation to recognize that killer cramps and other debilitating symptoms that come with periods are NOT normal!
If you would like to follow Nadia’s Team Zimbabwe EndoMarch progress, please reach out to their Facebook group
I want to send a special Thank You out to Nadia for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. And we want to wish you all the luck and success for your upcoming 2016 events. Thank you, and your entire team, for coordinating those and helping raise awareness in your community! We look forward to hearing all about it!
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.
(Updated March 27, 2019)