Personal Story: Jenneh Bockari
T H E - B A C K G R O U N D
In May of 2014, I was diagnosed with a disease called Endometriosis. By definition, it is when tissue similar to the lining of the uterus is found outside of the uterus on other body parts. It plagues nearly 176 million women worldwide. One out of every 10 women you pass walking down the street has it. Though it’s a disease that effects so many women, I would not be surprised if most people you spoke to have never heard of it.
P A I N F U L - S Y M P T O M S
The signs began in February of 2013. I will never forget this day. I was halfway through my commute to work when I suddenly became struck by the most intense pain I have ever felt. It was a sharp ache on the right upper side of my stomach, and it literally took my breath away. Luckily, I work at a hospital and was sent right to the ER upon arriving. In the ER they did a complete medical examination, but everything came back normal. I was given pain medication to treat the pain, and told to follow up with my primary doctor. Little did I know, this was going to be the beginning of the longest three years of my life.
I followed up with my primary care physician, and we agreed to keep an eye on things. The discomfort subsided within a week and I began to forget all about it. To my surprise, it returned the following month, and again for the next few months straight. Before long I realized that the pain correlated with my menstrual cycle. Like clockwork, it would start three days before my period, and continue four days after. I mentioned this to my gynecologist at the time, who said it couldn’t possibly be related. I continued on with life as such, and my symptoms continued. It turned into constant, debilitating pain. At my worst, simply taking a breath felt like I was enough to bring me to my knees.
Over the course of the next year and a half, I will have seen multiple specialists before I finally got an answer: the pain, along with my symptom of painful intercourse, were caused by Endometriosis. During that year and a half, I will have: had one surgery where all endometriosis was “burned off,” tried multiple hormonal treatments (including a drug named Lupron that put me into medically induced menopause with terrifying, permanent side effects), been told me that it’s impossible that the disease is still causing my pain after failing every treatment, begun to feel like it’s all in my head, tried every pain medication on the market with no relief, spent many nights awake in agonizing pain, lost my appetite, have constant nausea and constipation, have crippling fatigue, have constant brain fog, begun to have shortness of breath so bad I felt suffocated, dropped out of Graduate school, gone on disability from work, lived behind a mask of makeup and fake smiles, lost every sense of my identity, and pleaded to God to end the pain even if it meant ending my life.
E D U C A T I O N + T R I U M P H
Thank God, my story doesn’t end there. With the support of my boyfriend and family, I refused to accept that this was going to be my life forever. I began to tirelessly educate myself on this disease and it was then that I learned just how misunderstood I really was. Overall, I have learned that:
1. the years of delay in diagnosis is common
2. there are many myths in the medical community surrounding what the best treatments are
3. there is evidence that shows the only way to completely get rid of the disease is to surgically cut out (not burn) every single abnormal cell
4. despite the evidence most doctors choose to still use hormones as band aids
5. of the 40,000 OBGYNs in the U.S., only close to 100 of them are true experts in effectively treating the disease.
I am fortunate enough that last week I traveled to Atlanta to see one of the leading Endometriosis experts in the nation to have surgery at the Center for Endometriosis Care by Dr. Ken Sinervo. This man saved my life. He surgically removed all areas of Endometriosis in my body including my bowels, bladder, appendix, stomach cavity, hip ligaments, vagina, and diaphragm. I am on the road of a long recovery, but my future remains bright.
The advice I would give to another women suffering with this disease, is that it is not just a disease of “painful periods.” You HAVE to educate yourself. This is not a disease where you can take a back seat and allow your doctor to make the best decisions for you. You have to be your own advocate, and you have to continue to fight even when you’re not taken seriously.
For More Information About Endomitriosis visit: www.endofound.org/endometriosis