I have suffered from Endometriosis for quite sometime now. I began suffering from it as a young girl at the age of fifteen, and was diagnosed at seventeen. I have been surviving this disease for 20 years. Being diagnosed with an invisible illness is horrible, but being diagnosed with one that has no cure is simply devastating. I have lived with a sense of hopelessness since that diagnosis.
I felt that this was a disease that I would suffer from as long as I live. I felt there was no hope because most people don't even know what it is or that it even exists, and unfortunately most doctors don't understand the disease or know how to treat it effectively. Learning of this march sent joy throughout my entire body! I'm not sure that there are words to describe the flood of hope that rushed through me! I am forever grateful to the team who put this magnificent movement in motion. I know now that we are going to find a cure, and that when people hear of endometriosis, they will know what it is. We will not suffer alone in the darkness anymore! We will end the silence and finally be understood.
Currently the only treatments for endometriosis are surgeries, hormonal treatments, and pain medications to help deal with the pain. Hysterectomies are commonly recommended, but this is not a cure or fix in the majority of cases. It requires a very skilled excision doctor to make a hysterectomy successful, and unfortunately there are very few of them. You see if endometriosis has implanted anywhere in your body and it isn't completely excised, it will continue to grow and feed itself. Contrary to many beliefs endometriosis does not need your ovaries to produce estrogen for it to grow, because it produces it's own.
Being diagnosed at a young age was devastating, not only to myself, but to my family as well. I had been seeing a doctor from the very beginning of my menstrual cycle, I went in every month in agonizing pain. The doctors told me that periods are sometimes really painful and that I had a low tolerance for pain. I was made to feel that I was exaggerating, when in fact I felt as if my insides were attacking my body. They would send me home with Naporoxen and I would cry and lay in the fetal position for days. Periods were long, never less that seven days and some up to fourteen. Nothing helped, but a heating pad and lots of meds would sometime take the edge off. I would pray to God for it to end, I was in extreme pain that physically made me sick, fevers, vomiting, fainting, etc. I continued going in every single month and finally I requested to be sent to another OB/GYN in a larger city in hopes they would have more knowledge or technology and possibly could help me figure out what was wrong with me. I knew at sixteen that something was really wrong. I saw a gynecologist in Charlotte, NC who after the first visit said she thought that I might have endometriosis. She explained what it was to my mother and me, which didn't explain much at the time. She scheduled me for an emergency laproscopic surgery and I went in the following week and the diagnosis was confirmed. I was diagnosed with Stage IV endometriosis, during this procedure they found that my fallopian tubes were completely sealed shut with endo and scar tissue. I was told that I would never, even with medical assistance be able to conceive a child because there was significant damage to all my reproductive organs. This news was devastating. My bladder and intestines were significantly affected as well. I did later conceive a child which was a huge surprise as you can imagine, she is my miracle baby (She's 12 now, so I guess she isn't a baby, but she is and will always be my baby). I am one of the lucky ones who were able to conceive despite the odds against my body. Throughout my journey with endo, I have had many surgeries, hormonal treatments (side effects made things worse in most cases), and thousands upon thousands of dollars in doctor bills and unsuccessful treatments.
I'm getting ready to celebrate my 35th birthday and I still suffer immensely, but now I know that there is hope, and that does make it a little more comforting. Through this experience I have become a Precinct Manager for the state of North Carolina, and I'm honored that I can help make a difference, not only for myself, but for all the others who suffer.
I always knew I had an angry uterus since my menstrual cycle started when I was in my early teens. I spoke a full hysterectomy in my life when I was about 14 years old because my cycle was so painful and unbearable. People would tell me "Aida you can't just get a hysterectomy. You don't have any children and you are too young!"
During the years to come I learned to live with the pain. Long menstrual cycles, mood swings, unbearable and indescribable pain became my monthly way of life. Just like clock work…tick tock, tick tock…one could set their watch by my menstrual cycle. Every month I tried to 'count' how many eggs I could possibly have left trying
to guess how much longer my body would be ravaged monthly with pain.
Fast forward to around year 2000… I think that was when I started taking birth control pills to relieve some of the menstrual pain. Life began to take on a different form. I was still moody but I didn't hurt as much. Some times people thought I had a split personality because my mood swings were so bad. My cycles were still outrageously long, 9 days in fact but at least I could somewhat function. I would eventually stay on birth control pills for the rest of my sexually reproductive life trying to manage the impossible.
Jumping ahead one last time to 2009… it was around February I believe. All my medical processes take place in the early portion of the year near my birthday so I can keep on schedule. I tried a new obstetrician gynecologist. Nothing was wrong with my current obgyn but I had heard such rave reviews about this lady in particular and I trusted the source. During my first visit she asked a simple question that no one had thought to ask before…"what problems are you having?" to which I replied "I have a really heavy monthly cycle." I accepted the pain years ago so I didn't mention it. I learned to live with the mood swings as best I could so I didn't say anything about that either.
My new obgyn ordered a simple test to check for fibroid tumors, a vaginal ultrasound. Things slowly happened quickly after my first appointment. I didn't make it to my ultrasound appointment soon enough however. One day while working I left early because I had a constant pain on my right side in my thigh and pelvic region. A pain so bothersome and unbearable it literally brought me to my knees but it wasn't my time of the month so I was confused. I went to an urgent care facility and they ordered me to get a cat scan at the emergency room cause they thought my appendix was about to rupture. Thankfully that wasn't the case.
My cat scan and my vaginal ultrasound showed two things that concerned my obgyn…I had cysts on my ovaries and my uterus was 3 times the thickness it should have been. Initially it was thought the cysts were causing the pain. From these two scans I was offered options. My obgyn wanted a closer look at my uterus and the
cysts had to be removed.
We are now in April 2009 and I was 30 years old. I was scheduled for 3 procedures with anesthesia, a DNC, a diagnostic laparoscopy and a diagnostic hysteroscopy. The DNC thinned the walls of my uterus, the hysteroscopy looked at my uterus and allowed the cysts to be removed and the laparoscopy confirmed the presence of endometriosis. That procedure would change my life and shape my future. I had never heard of endometriosis before. I didn't know what it was so I did research. I also trusted my obgyn.
Hormonally I had a lot still going on in my life. I was always tired and every month I felt like I was having an out of body experience. I felt like I was being shaken from my very core. I shared this with my obgyn and she started me on a birth control pill to treat PMDD. That brought some emotional relief. Next we started a plan of action to try and manage this medical disorder called endometriosis. I started taking birth control pills everyday with no week off. I was flooding my body with hormones trying to stop the progression of my endometriosis. I learned a lot about endometriosis. It wasn't contagious and it couldn't be cured. I would have it forever. Trying to manage it, the ultimate goal is to stop the menstrual cycle because endometriosis lives off estrogen. Over the course of almost 5 years I tried different pills to manage the disorder so I could naturally transition into menopause.
Unfortunately because of my body makeup nothing was working. The cycle would stop for a few weeks then come back full force for months at a time. I was losing energy, becoming more fatigued, battling with emotions, the menstrual symptoms and monthly cravings, the bloating and fluctuating weight. I endured it all. I kept
getting vaginal ultrasounds to make sure my disorder wasn't spreading to other organs or growing out of control on the outside of my uterus. It was there and a constant irritant. I pressed forward with life but I was overall reaching the end of my rope. I understood it but I was getting tired of fighting. I was tired of the emotional impact, the eating, the mood swings, the unknown menstrual cycles. I was just tired. My doctor was also running out of options. She began whispering the possibility of a full hysterectomy during the summer of 2013. There was two more medical options to try and manage the disorder. The biggest was the Lupron shot. Taken quarterly, it is supposed to stop the menstrual cycle. This wasn't an option for me because of the side effects…rapid weight gain. I had just lost 40 pounds to save the life of my knees and I wasn't going to risk gaining that weight back for a
disorder that can't be cured. I refused and we started what would be my last option of treatment, the Provera pill. It worked for about six weeks and stopped my cycle. I went back to the doctor and she asked me how was it going and I responded the same ‐ the unknown period. I had a cycle now for about 2 months straight. If it didn't stop by the weekend I would have to be hospitalized to stop it.
At this point, I was over it all!!! I just wanted my life back. I had a few doctors appointments during the late summer/early fall of 2013. My ending was decided on September 25th. I was to have a full hysterectomy on December 11, 2013. Would it cure me of the endometriosis, no. Would it make me pain free, promising. Would it afford me the opportunity to have a better quality of life, definitely! It was decided and my count down began. I was okay with my decision. It was very well with my soul. I was okay that I never had any children because I had Godchildren. I prepared myself to transition into menopause. I was ready for whatever the next phases of
my life were.
Don't think the days leading up to my surgery were pleasant. I cried a lot of happy tears as I prepared for my big day. I reflected on my life and it's new direction. I was born at Mercy Hospital and my ability to give life would end at Mercy Hospital. How ironic but I was okay with my decisions. On December 11, 2013, I bravely walked into my destiny and haven't looked back since!!
Peace and blessings as you walk through your journey!
My name is Brandie Hall, I am 31 years old, and I live in Jacksonville, FL. Born at 27 weeks (pre-mature), I weighed 1 pound 13 ounces and spent two months in the NICU. I have Retinitis of pre-maturity, Scoliosis, and I also have Von Willebrand disease (a condition where my blood does not clot good.) Everyday, my doctors tell me how lucky I am to be alive!
I started by menstrual cycle when I was 12 years old. From the beginning, my cycles have been heavy; so heavy that I spoke to Hema oncologist about it because I thought maybe it was my clotting disorder that was causing cycles to be so heavy but that was not the case. Every month I had horrible cramps that felt like someone was stabbing me over and over again. Often, I would miss school because of my cramps and my cycles being so bad. I took birth control pills and even did the Depo shot, which couldn’t help either.
At 19 years old, I had by first daughter, by C-Section because she weighed 9 pounds and 11 ounces at birth. Then, 2 years later, I had my second daughter. After both children, I still seemed to have heavy period cramps. I decided to get and IUD for 5 years, after my second child, it did help me with cramps and I had no period. 4 years into the IUD, I decided to get it removed. I got pregnant for the last time with my son. I had Placenta Previa with him, causing me to be in and out of the hospital for months. I had to have him through an emergency c-section, 7 weeks early. 3 months later, the doctor took a look at my uterus, ovaries and tubes and said it looked pretty bad. He sent this information to my GYN to review. She reviewed it and said that I had to do a vaginal ultrasound to confirm the findings. Turns out, I had scaring on my uterus muscle, black (dark chocolate) cysts on both ovaries, and both tubes were clogged. I had to have a full hysterectomy in 2011. When the pathology results came back, she confirmed that I had endometriosis. She said that the hysterectomy should cure me, but 6 months later, that was not the case. My pain had returned, worse than before. She decided to put me back on birth control pills for over a year; that didn’t do anything either.
In July, I got a CT done which the results landed me in another surgery in August 2013. After 4 hours in the operating room, the doctor told my husband that it was endometriosis again and my bladder had fallen. She put me back on birth control pills, and even suggested that it may be time for Lupron. She decided to do another exam and said “you look fine, I don’t see or feel any endo. Have a good day!” WHAT? She was my doctor since 2001 and she was giving up on me!
Today, I am still in pain. So much pain that it affects me being an army wife. It effects everything in my life. Endometriosis is a horrible, nasty disease. I am sharing my story with hopes that people will listen and be willing to help me. I am going to the Center for Endometriosis in Atlanta. The cost of my procedure will be thousands of dollars. I am accepting donations for anyone who would like to help.
I remember it like it was yesterday....Today I'm 31 years old, have 6 surgeries behind me & enjoy being an advocate for Endometriosis & helping other women whom I love to call sisters.
Back in 2000 I had just graduated high school, was working two jobs & just settled in my first & very own apartment when I started having serious debilitating pain putting everything I worked for in risk. Since the age of 13 I always remember having horrible pain with my menses but the doctors didn't seem to connect the dots. For 2 years I went to every kind of doctor there was and nobody could find anything wrong. Pretty soon my family & my friends started thinking this was all in my head and that I was attention seeking.
Finally in 2002 I heard the word Endometriosis for the very first time & the symptoms sounded a lot like my pain so then I was off to a gynecologist. My doctor decided to due a laparoscopy to see if this was the problem & sure enough I got my diagnosis of Endometriosis in May 2002. It's been a bumpy ride an I have learned so much. After years of research and learning about Endometriosis a friend referred me to the CEC in Atlanta where I had excision surgery and by far the most successful treatments by far. I did extremely well until the fall of 2012 when my local doctor decided that I needed to have a hysterectomy & in desperate hopes of pain relief I reluctanctly agreed knowing that wasn't a cure but I was so desperate for relief.
Thankfully that did help me but even today I'm not pain free. I will say though that Endometriosis has made me so much stronger & it will not break me! Through my journey my faith has grown stronger, my family & friends mean more to me than ever & I wake up everyday happy & hoping to help another sister in need. One at a time little by little we will win this battle.