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My story: Jordan Lee.

Posted Apr 10 2013 2:00am

I ought to start at the beginning, I suppose, with the information that ever since a child I'd had a "sensitive stomach" but it was not until I began my period at 13 that things slowly became more and more debilitating. The cramping and "heavy flow" that I experienced for years was always brushed off as "just part of being a woman" and one that I ought to get use to. That being said, we can now fast forward 12-13 years to when I really began to get sick.
About the fall of 2007, I began experiencing more and more frequent GI issues - specifically, very heavy bouts of diarrhoea. I attributed it to a fast paced technology retail work environment and a less than ideal diet. Since I could not slow the pace of my job, I began paying more attention to my diet. I turned to healthier foods, whole foods, less prepared foods. I stopped consuming any fast food, any fried food, any spicy food, I cut out dairy and then even soy, but nothing worked and the bouts began to become more intense. Finally, resorting to the tried and true B.R.A.T. diet (bananas, rice, applesauce and toast-with hard boiled eggs and high protein foods) to help ease the dehydrating and extremely uncomfortable symptoms I was experiencing but nothing helped. Twice I landed in the local emergency room for dehydration, and after a few bags of saline, the diarrhoea returned immediately. I was unable to sap any nutrients from what I was eating and this was quickly starting to interfere with my ability to work. I went to three different GI specialists, had two endoscopies, a colonoscopy, a barium test, a CT scan as well as being tested several times for parasites, crohns disease, gluten allergies, IBS, and the whole gamut of possible irritants and causes. Finally, the last GI specialist I saw, after reviewing all of my information, said the magic words: "If it's not endometriosis, I'm sending her (me) to the Mayo Clinic". My family and I looked at each other stunned. If it wasn't what now!? The term was foreign to all of us, especially my step-father who would soon and unknowingly be dragged into a world of understanding a woman's reproductive system that few men dare to. But he is my dad, and he and my mother would be there for the literal fight for my life.
I was constantly on the couch of the apartment my boyfriend and I shared at the time and he was losing patience with a continually ill, continually home, girlfriend. That December I decided to move back in with my parents and whether it was doomed from the beginning or because of the endometriosis, it was the first relationship claimed by the disease. As it progressed, people I had at least been friendly with at work began to dismiss me socially, I was no longer invited to the after work dinners and outings that were regular occurrences and there were whispers that I merely did not feel like working, so I had come up with an impeccable and impossible to prove reason.  Having this new term and possible diagnosis in our hands, we rushed home to our respective computers and began trolling the internet for as much information as we could find. None of it was calming, positive or reassuring. The GI had recommended an ob/gyn nearby specialising in endometriosis and its treatment and I was soon in his office, once again recounting my experiences of the past 6-7 months and nearly crying in his lap with relief when I was told that this could be controlled. What we did not know was the minute fact that diagnosis must be confirmed with a surgical procedure.
So I began working with Dr. Q, who immediately recommended a pain management doctor to ease the constant abdominal cramping that I was suffering from. I began working with Dr. Q and Dr. D as quickly as possible, all the time I diligently tried various pain killers and well-known endometriosis treatments for nearly an additional year.  Dr. D and I settled on Percocet as a short term pain killer to help me through my medicinal treatments with Dr. Q. We began with birth control pills, hoping that my cramping would stop and I'd only have to rely (theoretically) on the Percocet one week a month. That failed to make any change. We tried a longer term birth control pill so that I'd only have to rely on the Percocet (theoretically) one week every three months.  This too failed to make any sort of difference. I was given a one month shot of Lupron to stop my hormonal cycle altogether and the following three months were made additionally  miserable by side effects including sweats, chills, night-sweats, and emotional swings beyond anything I ever thought possible. I would only find out later that there were treatments for these effects that I was denied. I  was now missing work more than I was there. I was open with my bosses, I told them that we were collectively doing our best to figure out what was happening and to curb the symptoms so that I might return to work, my relationship and my life. Little did I know how much more was to come.
Finally, Dr. Q admitted that it was time to do a laparoscopic procedure to investigate the extent of my possible endometriosis. I weighed 90 pounds and stood 5 foot 5 inches - I had lost a total of 35 pounds. I was referred to Dr. N, a surgeon in New York City, as he and his brothers had pioneered procedures and research for endometriosis. I came to learn that after a 4 hour surgery I had been "loaded" with growths as well as having one grow through a ureter from my kidney to my bladder. The growths were removed, the ureter transected and reconnected and I was sent home with the expectation from Dr. N that all would be well and in a few weeks I'd be back to work, my relationship and my life as if nothing had ever happened.
Three weeks after the surgery, while my incisions had healed, I was still experiencing severe abdominal pain and fatigue, not to mention frustration and a depression that didn't seem to have an end to it in sight. I went back to Dr. N, who insisted that the surgery had been successful and that my recovery was now in my own hands. My family and I left feeling abandoned, wondering if my "failure" to heal was now somehow psychological. I saw my therapist regularly, I took the medications prescribed regularly, and I continued to rely on extremely high doses of opiate pain killers to be able to make myself a cup of tea and nothing changed. Six more months went by and I finally decided to try a new ob/gyn, one closer to my family's home outside Philadelphia, a woman, one who was the chair of the board on the particular subject through the hospital she was affiliated with. My family and I were renewed with hope. Dr. B actually held my hand, listened to me and reviewed my medical history to this point. Once again, we were flooded with relief and felt true progress could now be made. We tried different continual birth control pills, again attempting to control my hormonal cycles. I found another pain management doctor in the same building as Dr. B and continued on the high doses of Percocet. I began and "successfully" finished physical therapy. Another year passed and the only thing that changed were the various pain medications I was on. The pain, fatigue and depression seemed endless and continuing to fight them seemed impossible. I applied for Social Security Disability benefits. I was solely dependent on my parents and completely incapacitated.
Feeling beyond hope, my dad made a desperate call to a friend of his at Monmouth Medical Centre and we were referred to Dr. G. We went for the initial consultation together. We reviewed everything, he saw the desperation on my and the faces of my parents. Then he did something no other doctor had done. He asked me if I would believe in him enough to beat this. My parents turned to me, mouths agape, awaiting my answer. Choked with tears, I quietly replied that, with all due respect, I was sceptical at best about the medical community's ability to end my suffering. He smiled to that. Agreed that it was a fair answer and that as long as I was just that honest with him, he'd be not only equally honest, but ruthless (ruthless!) in his quest to return me to a reasonable state of being for a nearly 30 year old woman. We walked out in stunned silence. My parents eventually began to glow with hope. I continued my guarded approach to my situation. Slowly, and with the deepest reasoning and respect, Dr. G and I began to work together. Each attempted treatment, while unsuccessful, was actually a step towards a better and deeper understanding of exactly how severe my disease was. I began Lupron again, with great hesitation. This time, assured I would have the hormonal replacements I would need to counteract the side effects, it began to work. My pain lowered significantly, though I was still unable to work, the world began to reopen to me. I could travel to the local food store and do some light shopping. I could go for short walks around the neighbourhood. I began to have hope, despite the plateau that we had reached, it was miles above where I had begun with Dr. G.
With that plateau, after nearly a year of Lupron, Dr. G recommended that I have another surgery. This one, he would perform, initially laparoscopically, the possibilities for what the surgery would require could have filled a medical volume alone. After 5 hours I had been examined laparoscopically, I had had the few growths removed with an ultrasound device, my lower intestine - which had been adhered to my pelvic wall by scar tissue - was freed and my uterus, also adhered to my pelvic wall was suspended to prevent any further damage to it. I'm currently 5 weeks past that operation and am healing well. I am incredibly lucky that endometriosis has not claimed my fertility. My incisions are slightly larger and more numerous than the first surgery, and I was in more pain immediately following the procedure, but anyone with endometriosis learns to live within the pain. As I heal, as I begin to regain energy, my desire to fight back, to regain my life has never been greater. I have been awarded Social Security Benefits and Medicare, both have been tremendously helpful in relieving the financial strains of a long term illness. My guarded optimism is less guarded and there is light at the end of the this tunnel.
I have had losses in my life. I thought I had known struggle and reward, but they were nothing when compared with my struggle with endometriosis. I pray that my story is a unique one, that I am the 11th woman, not the 1-10 that have mild cases with infrequent flare ups. Most of all, I pray that the medical community works diligently to spread knowledge of this disease, be able to detect endometriosis earlier and to find treatments that give women their lives back.
Thank you for allowing me to share my story.

Thank you for sharing your story Jordan. I can, unfortunately, (maybe as the 12th woman!?) relate to your story in so many ways. I hope so much that this latest surgery gets you back to living the life you should be at this age. 

Can anyone relate to Jordan's story? Have you tried Lupron more than once and found it has worked for you on further treatments? Has endometriosis interfered with you work and personal relationships? Have you had to go through a process of gaining benefits to support yourself financially because of the way endometriosis has affected your life?

Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at  shireen.emlwy@gmail.com  along with a photo and I'll pop it on to here for others to read. 
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