ENDO STORIES

Asha’s Twenty Year Battle With Endometriosis…

Many years ago I was very sick with a debilitating and devastating disease called Endometriosis. I was not diagnosed right away. It took many emergency room visits and years for doctors to figure out what I had. I was so tired of doctors asking me if I was stressed.  I kept telling them the only thing I was stressed out about was the excruciating pain I had and didn’t know what was causing it.  I can’t even begin to tell you how my life was so restricted due to the pain I had to live with every day.  I kept thinking what was wrong with me and why couldn’t I have a normal life like other women.

The truth is that I was diagnosed by a family member who is an internal medicine doctor and a cardiologist. I had told him about all my symptoms and he actually took me to my primary care doctor and said, “Look, my niece is not crazy or not imagining her pain. I believe she could have endometriosis and the only way to know for sure is a laparoscopy.” I remember my primary care looking at him and saying, “I really don’t think she has endometriosis and have no idea where you came up with that by just listening to her symptoms.” Well, my primary care doctor arranged for a laparoscopy with a gynecologist and sure enough it was endometriosis.

I was diagnosed with severe Endometriosis. I thought, finally a name to what I have been suffering from all these years. Along with that (if that wasn’t already enough), I had cysts, fibroids, and infection. Everything was happening so fast, that my head was spinning and I had no clue as to what was going to happen next.

Before I get to the next part, I have to thank my uncle, Dr. Mohan Kumar. He is a successful cardiologist today and is based in Houston, TX. Thank you so much! I can never forget this story even after all these years.

When I was first diagnosed, I thought to myself not to worry, all I probably need to do is take some medications and it will all go away. I was so wrong! Endometriosis is one of those incurable diseases but does have treatments. I tried many of the treatments that my doctors had recommended. Whatever I did or didn’t do, it always seemed to come back and get worse.

I had started seeing doctors at Stanford University Hospital in Palo Alto, CA. I had the pleasure of having some wonderful and amazing doctors there that really cared and helped me through this awful disease. One fine day, there was a lot of talk about this new doctor joining Stanford as a professor of Gynecology and an expert in regards to Endometriosis. And my doctors were talking about getting a referral in for me to see this doctor. I was so thrilled because I was still secretly hoping for a cure. That doctor was none other than Dr. Camran Nezhat.

I ended up having surgery with Dr. Camran Nezhat and also with Dr. Farr Nezhat who are brothers. My surgery went well and that’s the day when I received my real diagnosis of severe Endometriosis and Adenomyosis along with Uterine Fibroids, Endometrial Cysts, etc. And not only did I have all this but it had a stage attached to it just like cancers are diagnosed with stages. I had stage 4, the last stage. I went through more surgeries but in 2001 I ended up having yet another surgery. This time it was a 10 hour surgery!

Dr. Nezhat saved my life that day along with his team of doctors and nurses. From that day onward, I made a vow to help other endometriosis patients and their families.


Julia’s Journey…

20160409_091541This all started as early as 1999.  I felt a pain I had never felt.  A friend I had at the time told me it may likely be an ovarian cyst.  A few days later, I went to the emergency room and discovered she was right. After some bed rest and medication, it was gone and I was feeling better.

Or at least I thought I was.  Pretty soon, I got cysts on a regular basis, spending the first half of 2000 in pain, going alternately to the doctor and the emergency room.  I can’t remember all of the details that took place at this time or in the future.  But I do remember the ER diagnosing pelvic inflammatory disease (PID)  The ob/gyn I had at the time prescribed me an oral contraceptive, maybe even a pain med or two, and eventually scheduled me to have a laparoscopy.  The results were negative, and I believed it.   

But I continued to have cysts.  Back on oral contraceptives, which I had to have to avoid having cysts.  Such was the case from 2000 to 2010 or 2011, going from one doctor to another, getting so many prescriptions, and so many ultrasounds.  One of the ob/gyns I had around this time said I never had PID.  What a relief!  I recall going to the ER in the spring of 2004 and was diagnosed with a UTI.  Believing them that I had it, I took the prescriptions.  In this time, I moved a few times, and even got married. I thought with this new and better quality of life, I didn’t need to be enslaved to oral contraceptives, because I wouldn’t have cysts.  After all, I had been making a big deal over something that was a small thing.  

Wrong!  

More cysts, and this time and for many times to come, uterine fibroids, and an ob/gyn who thought my idea lofty for not being on the Pill.  Back to square one, which by this time was getting old, cumbersome.  I thought to myself, certainly there has to be a different and better way to treat this.

I quit seeing her when she said I shouldn’t always complain about some pain I have as something to do with my internal female hardware.  Even worse, she said uterine fibroids were no big deal.  As the old but so-true saying goes, you know yourself best.  I knew it was a cyst–and I was determined to find someone who would listen and not undermine me.

In December 2011, I went to the ER and was given an intravenous narcotic that would ease the pain–and a diagnosis of a UTI.  Based on my previous experience with that diagnosis, I refused to take the prescribed medication.

Between 2011 and 2013, I “sought refuge” at my regular doctor’s office, determined to not be on contraceptives and to find an effective pain killer.  It was there I would go every other month to get a trans-vaginal ultrasound, and the result I had memorized by now:  left ovarian cyst, a few uterine fibroids.  Here’s a prescription for another pain med.  Have a great day.  We’ll see you at your follow-up appointment in two months.

In this decade or better, I missed out on countless opportunities to better myself personally and professionally.  All my life centered around was going to doctors and taking pain medications that didn’t work.  It got to where I got used to it and resigned myself to this lifestyle.

Especially over the past five years, I started many creative pursuits, such as writing books and entertainment reviews.  However, a lot of time, I couldn’t easily do them because I was in too much pain.  To boot, part of these new personal and professional endeavors included going to live shows.  It got to where I couldn’t go, because the vibrations from the music triggered the pain.

Then one day, in February 2013, I couldn’t get out of bed.  It was 10am before I could do so, from the usual time of 5am I am usually up and raring to go.  I had a hard time standing up and walking.  After a while, I made it my idea to go to the ER, knowing I would get nowhere.  This was the best and worst idea at the same time.  The lady who checked me in told me to never go to the ob/gyn I had seen, and referred me to hers. She had treated her and her daughter for cysts and told me, “You should not be in this much pain.”.

I was given the same IV I had had in 2011.  If anything good came out of my being in so much pain, I made sure to ask to have that same IV administered to me.  I got it–as well as horrible treatment from doctors.  They performed a CAT scan on me and said they found nothing.  The truth:  not only was there the predicted cysts and fibroids, but a cyst on my cervix.  And their diagnosis:  general abdominal pain.  My rhetorical question was:  How could it be general when I am worrying myself and everyone around me?

Later that week, I was able to have an appointment with that ob/gyn the lady at the ER had told me about, for what I thought was “chronic ovarian cysts and uterine fibroids”  By this time, I had had at least a dozen cysts (I stopped counting around that number) and at least half a dozen uterine fibroids.

I once again gave her my whole story.  She looked me right in the eye and said, “Everything you have is consistent with endometriosis.” A few medical professionals in the past had asked me if I could possibly have it, I kept saying no.  However, this doctor said what I needed to hear, as if she were saying, “You need to listen to me, because I could make a big difference in this journey you’re on.”

She recommended Depo-Lupron to me.  I may be the only woman who responded well to it.  It gave me a preview of what my life would be like if I wasn’t in so much pain.  Though its effectiveness would soon wear off, and I would have to be prescribed oral contraceptives once again before I was able to have the Depo shots again, I knew the worst part of this journey was over.  I had finally found a great doctor, the proper diagnosis, and a treatment I had never heard of that worked well.

However, in the second half of 2015, the contraceptives and any pain meds were no longer working.  It was time for me to have a total hysterectomy.  Because of unforgiving demands at the job I had at the time, I wasn’t able to have it right away.  Between that and no longer taking any medications, I was in pain all the time and desperately counting down the days till I had the surgery.

Here it is, a little over a year since that surgery.  Life has been great.  It feels good to not be in any pain.  Furthermore, I love living a life that isn’t controlled by times to take a contraceptive or taking pain meds that no longer work, doctors appointments with little to no helpful information, or just by pain, period.

I can now focus on my goals and dreams, more than I ever have in my life.  This surgery has given me a new lease on life–a new and better chapter of my life, to be exact.


Tanya Bravely Shares Her Story…

To describe my life with endometriosis in a few words, I would have to say it has been challenging, eye-opening, and forever changing. The fact that it affects one in ten women was never something I was told or knew of growing up. You see, I knew right off the bat that things were… different. I had heavy long periods starting when I was only about eleven, but I learned to deal with it and that it was all a part of being a woman. Little did I know that my pain was only going to get worse.

At fifteen, my mother noticed a lump on my abdomen along with increased bowel issues, so like most parents, we visited the pediatrician. He had no idea what to say so sent us to an ob/gyn who told me that I was too young to have these issues and since the lump disappeared there was nothing he could do. So he sent me to a gastroenterologist where my whole life went under a microscope. If it wasn’t that doctor it was the three others that I saw questioning me about my eating habits coming to the conclusion that I was lactose intolerant, that even though I was a virgin certain sexual activities must have been a culprit for my symptoms, as well as eventually getting to “nothing is wrong with you, but you have IBS.”PIC1

So I went with that until my symptoms got worse my senior year in high school and we needed answers. After all, no eighteen year old woman should be physically sick three weeks out of the month and fighting to move. So this time we went straight to the ob/gyn that gave me all sorts of birth controls until I was nineteen and agreed to do a laparoscopy to search for endometriosis. That day in 2011, I was finally told what was actually going on… The doctor told me I had endometriosis and that I should not expect to be able to conceive but have up to five miscarriages then put through an artificial menopause on Lupron Depot for six months. This was what no woman wanted to hear let alone a nineteen year old woman explaining to her then boyfriend that if he ever wanted a family, he would have to look elsewhere.

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Thankfully, I found one of the most caring and supportive men out there who actually asked me to be his and we were married at the end of that year. We moved with the military and I was thrown into the mix of military doctors. When I walked into the office and the doctors saw my long history I was given pain pills for “management” and moved along in the never ending revolving door. I was just another patient and hell, I wasn’t even recognized by my own security number. However, I followed suit until I was taking a pill to get up in the morning, another to get through lunch, another through the evening, to finally sleep again.

I was the very definition of a walking pharmaceutical zombie. What made matters worse, none of my pain went away in fact it only got worse. Then I was labeled with chronic pelvic pain syndrome and did an in house physical therapy with yet another kind of birth control. The birth control was just another form of drug that did nothing to help me and only gave me more symptoms to deal with. I was at a halt and tried to make the best of my life trying different two more forms of therapies and methods until I decided enough was enough and got off of everything. I was finally starting to feel like myself again and my husband came back from a 10 ½ month deployment. It was then we were surprisingly blessed with an amazing healthy baby boy.


Every doctor I went to couldn’t figure out how I was pregnant or carried full term. Apparently my pelvis was tilted; my liver was off, heck I had morning sickness until the very last trimester! Even after a traumatic emergency C-section I was blessed. Just when I thought things were getting better and I felt on top of the moon, I had to get my gallbladder taken out but only after going back in the ER for three days and dosed up with more pain meds. But still my pain came back and worse than it ever was before. I was told if getting pregnant was possible that it would make my pain better but it was all a lie and I had to start the whole process over… yet again.

So I saw the doctors again who told me it was all in my head, it was my weight, and my favorite it would all be okay if you just didn’t recognize it. So here I was again in full circle at twenty-two with no one in the world that truly believed me. When you have pain for as long as I have, it becomes part of routine. Input smile here, take a pill for this, hide the completely agonizing pain in your gut without dulling the moment for everyone around you; drowning in the dark abyss that is constantly surrounding you and residing once again within yourself. I didn’t want to bring everyone else down to only be told that it was all in my head or there was nothing anyone can do.

So, I was dealing with the pain. Spent my days trying to focus on the time I got with my now little family of three. When we got stationed closer to family I thought things were finally looking up until I was hit again with the constant tearing, consuming, and part of my life that refused to go away. So, I tried another doctor who wanted me on more hormones, I tried the homeopathic approach to things, yet nothing helped. It just prolonged to the inevitable of not knowing what is going on with my own body and why I couldn’t just be normal. So I dove into researching and spreading awareness of this unknown disease searching for answers that I can give myself to show a doctor what I was going through.

After having a discussion with my parents and husband, we decided to seek out a different form of help. Out of all places, it landed me in a fertility clinic. Believe it or not, it was the first place where I was looked at and treated like a person rather than a number. The doctor listening to me and believe it or not finished my sentences. I had never felt so relieved in my life, I was finally moving forward at twenty-five years old. I had a multitude of tests done when I was finally given a proper diagnosis of not only a woman with IBS, chronic pelvic pain, and endometriosis but also, adenomyosis, PCOS, hypothyroidism, and insulin resistance.

I had my excision surgery done November of last year and it was the best decision I have ever made. I had hernias removed and replaced with mesh, the excision of my endo, a presacral neurectomy, and a hidden tumor removed from my lower intestine. Granted, I have a long way to go and I know that this is mostly a temporary fixed but for the first time in my life I feel like I have finally found the answers I have been looking for. Do I have a long way to go? Yes, but for now I am enjoying the opportunity of living without pain for the first time in my life. Does my medical journey end here? No, but at least I can look forward to the next day and trust in myself to be my own advocate for what I need. I am an endowarrior.

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Diana Falzone: Women Should Never Suffer in Silence

Meet Diana,  a successful contributor turned reporter for Fox News.  She was the first and only female on Maxium Radio Sirius XM to have her own national radio show “DeVore and Diana.” Diana has also written her own column for Military.com and has been involved in various military organizations, a passion of hers developed after her brother served in Iraq.

At a time when Diana was enjoying her professional victories she learned that her personal desire to be a mother may be unfulfilled and that her health at the age of only 33 was in jeopardy.

Diana bravely shared her story on Foxnews.com and her story was also picked up by People Magazine and Daily Mail. With gratitude for her courage, we invite you to ready Diana’s journey:

Women Should Never Suffer in Silence


 

DEDICATED TO STACY: THIS IS WHY WE ENDOMARCH
Thank you to Stacy, for sharing her beautiful poem. This is why we march…
dedicated to stacy bauer paint yellow ribbon
STACY B.
Deep within me life isn’t so easy. I have something most haven’t. I’m a different little miss. I have a disease they call it, Endometriosis. It’s a story I often have to tell, to many it means nothing; to me it’s my living hell. It’s a life sentence and my reproductive organs are my cell. Deep within me there is an endless road. A never ending journey, my life put on hold. The doctors say there isn’t more they can do. Now I’ve done my research and I know that isn’t true. Deep within me there is a pain so severe, it torments and tortures, brings a life of fear. I know, no one can feel, this pain inside me and how it is very real. It hides deep inside me…it’s a nightmare you see. It can make me feel so vulnerable, rather alone, so sick and pained, I can barley leave home.

People don’t believe it, they say it’s all in your head; meanwhile they don’t see how hard I push myself everyday to just get out of bed. Farther and farther away, support seems. All is good and right, only in my dreams. Wishing to be taken seriously; not taken as a joke or a ride. Wanting to be understood, being free from all that’s inside. The countless nights spent sprawled on my bathroom floor, while my insides feel like they’re at war. I lay covered in sweat, ovaries being strangled; stomach upset, my pelvic area fills with a burning sensation, like I’m undergoing radiation.

They’ll never fully understand the pain I’m in, so I’ve learned to hide it with a grin. I’ve spent nights struggling along trying not to cry, silently wishing to die. If I didn’t have faith I’d be screaming why!? If only you could feel the pain, I have nothing to lose just more side effects to gain. Medications cloud my brain; I try my hardest to remain sane. I remind myself to take each day as it comes; I have to deal with the blows, even when I think I’m numb.

I’m going to get through this though I may need hypnosis, you aren’t taken me down, damn you Endometriosis. You may knock me down time and time again, with blow after blow, but I’ll keep getting up, I will not be another Marilyn Monroe. This disease crept out with intent to deceive; day by day it ate away at my chances to conceive. I’m striving to be calm, attempting to remain placid, yet it’s hard when my insides feel like they’re covered in battery acid.

As the birds chirp in the morning and sing a beautiful song, I lay praying for the strength to go on. Every morning my feet hit the floor powered by my ambition, I refuse to give up on my dreams because of this condition. Some days are too hard and I have to just lay and rest, praying and wishing tomorrow is a better day, feeling oppressed. I try my hardest to remain strong, press forward trying to scrape along. Upwards and onwards I face the world like a clown, In reality I just want to break down. I hide behind the humor and smile, a mask, hiding it isn’t always an easy task. Every day life can be so hard, for deep inside I’m physically scarred. The carefree happy days remind me of what it’s like to be pain free, the frustration mounts when I am knocked back to reality.

No reason, no rhyme what will be, will be, I’m just a slave to the devil inside of me. I look just like you through everyone’s eyes, for the devil inside me wears a cunning disguise. Pain killers and my heating pad have become my most trusted friend, as I lay silently wishing my body would mend. I refuse to let it make me lay and watch my life go by. Some days are easier than others to get by, but no matter what I always try. I will fight this devil until the day I die. My reality is that some days it’s okay if all I can do is crawl up in a ball and cry after all I’m fighting a battle in my body similarly to world war I.

Resting at home is my safe place. A normal twenty-six year olds life is vanishing without a trace. At time reminders of my old life, pain my heart like an unsharpened knife. Those reminders taunt my soul but fighting fatigue and pain is now my daily goal. I am strong, stronger than I ever knew, most people would give up, and I continue to push through. I will hold my head up high, and face society as they turn a blind eye. I wonder how many would cope with it, if they were in my place, I doubt they be able to keep a poker face. When their insides ache and burn and their reproductive organs are being destroyed to the point of no return.

How can America just sit and watch while 200 million women suffer; we are daughters, sisters, wives and mothers. We aren’t just a test case; the way we are treated is a disgrace to the entire human race. My loving family is always there for me when things get dark to shine some light; they remind me of why I continue my fight and assure me eventually I will be alright. What people can’t see, they don’t understand – educate yourself about this disease is my only demand. I have an illness that has no cure, so until one is found the endless surgeries, treatments, and pain I will endure. I will not unravel; I will continue to fight like a warrior in this battle. Yes, endometriosis is considered to be rare, but that doesn’t mean we don’t deserve adequate care. I fight this with my loved ones by my side; this isn’t my fault that I have this disease so why should I hide.

With my loved ones supporting me, I feel incredibly rich. Thank you for putting up with me when the hormones or the pain make me act like a miserable bitch. It’s time for the world to stand and unite, this needs to become society’s fight. I will never give in; I promise to continue to fight until I win. One day, I will finally have this disease properly treated and be able to say Endometriosis has been defeated. – Stacy B., November 2015


DEDICATED TO KIMBERLY: THIS IS WHY WE ENDOMARCH
We would like to extend our heartfelt gratitude to Kimberly for sharing her powerful, heart-rending story. Minor edits have been made for formatting purposes and to provide clarity when needed.

dedicated to kimberly i yellow ribbon from resolve

KIMBERLY – EUFAULA, OKLAHOMA
Hello, my name is Kimberly. I am from Eufaula, Oklahoma. I am 26 years old now, but my endo story starts when I was just 10 years old. That is when I started and had horrible pain from the get go. The doctors told me it was because I was so young and once my body got used to it, I wouldn’t hurt so badly. So, a year goes by and I am still in pain; I am taking Lortab 5mg at the age of 11 just so I could go to school. I go back to the doctor and she says the pain is mainly in my mind and that if I would think positively that maybe I wouldn’t hurt so badly. So I started doing yoga and meditating everyday… with no relief.

This goes on for the next 6 years; different doctors, different assumptions, same horrible pain and by this time it was much, much worse. I had a miscarriage at the age of 17 (I thought I was being very careful not to get pregnant, i.e., shot and condoms). It was a tubal pregnancy that lasted 4 months, The doctor did surgery, took my tube and never said a word about the endo. I was heartbroken about losing the baby (Her name is Lilly Ann Marie Smith). A year passed still with the pain; I got so tired of doctors telling me that it was normal or in my head or all the other things they had told me.

I went to 28 different doctors in 13 years. You do the math. I found Dr. David Powell from Muskogee, OK, and that was the first time I heard the word ‘Endometriosis’. He did a laparoscopic surgery that confirmed it and started trying to treat it. He told me that I [must] have had it the entire time. It was already stage 4 at the age of 18. It was on my tube, ovaries, bladder, bowel, intestines, abdominal wall, [and was] causing painful urination, constipation, infertility, and pain. Lots of pain… nothing was working… not the treatments or anything. My longtime boyfriend and I even tried to get pregnant; which didn’t work either. He ended up leaving me. I lost multiple jobs, and the worst part was I didn’t have support; no one knew about Endo yet; no one understood what I was going through. I even thought about ending it a few times.

When I was 23 I met the man who became my husband. He held my hand when I decided the pain was too much to handle and we decided for me to get a hysterectomy. I am 23 at this time, no job, no social life, just me and my fiancé and my family. They all watched me lose more and more weight until I weighed 98 pounds. They watched me suffer day after day. They heard me scream in pain at night and cry myself to sleep every night. They all were behind my decision to give up my ability to ever have children and to have the hysterectomy.

Well, three years later and I still have endo. You see, back then they thought [hysterectomy] would cure it. But it doesn’t. It makes it less painful and bothers me fewer days, but I still have pain. I will try to be at the march in the United States this coming year and I will hold my head up proud of what I have accomplished… and know that I am not alone. I have my Family and MY ENDO SISTERS!!!!!  I WILL FIGHT LIKE A GIRL!!!  Thank you for listening and I hope to meet a lot of my Endo Sisters in March….

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