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Mady’s Story (PCOS, Endometriosis)

Mady's Story EndometriosisToday I was diagnosed with endometriosis, and here is my story leading up to today.

I have always been active my entire life. I did competitive gymnastics ever since I was 4 years old. I never complained, had an incredibly high pain threshold, and had never been sick with so much as a cold.

When I was 9 years old, I came home from a gymnastics competition, feeling normal. A couple hours later, I moved slightly, and I felt this sharp pain in my stomach. It continued to get worse, and I tried to keep it to myself until finally, I was screaming in pain and went and got my mother. She knew instantly that it was serious. She took me to the hospital, and they went through everything they could find–my appendix, an undiscovered injury from that day’s competition, anything they could think of. They gave me morphine, which put me to sleep and gave me some moments of ease. I remember opening my eyes and seeing a room full of doctors surrounding me. They told me they believed I had an ovarian cyst rupture. My mother was puzzled and probed them about it. How could a 9-year-old, 50 lb. little girl who hasn’t even had her first period be a candidate for something like this? The doctors were just as astonished as she was, but were confident in their diagnosis and confirmed it with an ultrasound. They told me this was a rare thing to happen to someone with my logistics, but felt I should be fine and that I should just keep an eye on it and tell my pediatrician if any more problems should arise.

A few months after that, I started having stomach problems. I had always had chronic constipation, but I began to have stomachaches and bouts of throwing up at least once a month. My doctors dismissed it as a nervous stomach or just a cold I picked up at school.

When I was 12 years old, I got my first period. It was so painful, I couldn’t even go to school. The pain made me throw up. My mother said that it was just because it was my first one, and it should subside. To this day, I still have the same symptoms during my period. I continued with this painful period experience, but the throwing up seemed to ease up a bit to about once every 4 months or so, giving me some relief.  Throughout high school, I had at least one cyst rupture every year, usually the week before my period. They gave me the same answer every time: this is normal. You’ve only had your period a few years. It’s just your body regulating itself.

The summer of my senior year, I had 5 ovarian cyst ruptures over the course of 3 months. I had no relief and was miserable. As soon as the symptoms went away (vomiting, extreme abdominal/pelvic pain and back pain), I just had another one. I began to just tough them out myself at home because the hospital started making comments that I was just there for the pain medicine. My primary doctor said she believed I had PCOS, and she suggested I start Yaz birth control. She mentioned that this would most likely effect my fertility if we didn’t start treatment.

I left for a college that was 3.5 hours away a week later. The second week of school, I had another ovarian cyst rupture. I was on my own with just my RD by my side, and the hospital treated me like I was just a drug-seeking teenager. I came back to school and attempted to start my first semester of freshman year. I didn’t have another cyst. Instead, I had chronic nausea and vomiting every single day, multiple times a day. I was so, so miserable.

I went to a new primary doctor. She said that the chronic vomiting was not due to my recent diagnosis because she didn’t believe I had PCOS. Her main claim against my case? “PCOS patients are generally fat and have excessive facial hair. You seem like a normal 18-year-old girl.”

We did test after test, ultrasounds (which seemed slightly abnormal but nothing too significant), CTs, cat scans, X-rays, blood work, urine work, and my first Pap smear. I am not and have never been sexually active, except for when I was molested at 6 years old, and this doctor insisted on a Pap smear. I cried the entire time. She told me it shouldn’t hurt that much but didn’t see anything abnormal. She finally sat down and said she could no longer do anything for me. She could pump me full of Zofran for nausea, but she saw nothing wrong with me and would no longer seek a diagnosis.

I tried to make it through college, but I was constantly absent and ended my first semester of college on academic probation. I came home for Christmas break and had yet another ovarian cyst rupture. This time was a little different, yet it felt exactly the same. The ultrasound showed no enlarged cysts or free fluid, however, all of my pictures seemed slightly abnormal. My doctor sat me down and told me he believed I had something called endometriosis. He said that all of my symptoms matched the description and that we should begin seeking treatment. That was today.

Today is day 1 of my life with endometriosis, and I have no idea what to do. I hope this is the answer. I pray that a simple laparoscopic surgery will give me my life back. Today is day one, and I’m not going to stop until it’s cured.

Submitted 01/04/2016

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Believer16

    I am so sorry to hear about your struggles with endometriosis and ovarian cysts. I want you to know that you are a warrior! Keep fighting and don’t give up hope! Do you know that there is a cure for endometriosis? The first step is continuing to have faith, which you have. Without faith you wouldn’t have gotten this far. Contrary to what traditional medicine teaches us, there is a cure for ALL illnesses. It’s going to take you thinking “outside of the box” in order to achieve optimal healing. I am not sure what your faith is, but, I encourage you to go to God and ask him to guide you to the truth about all matters in your life. This is going to be your rebirth. I truly believe you will get better and be cured. Believe that you can! Here is an excellent video by YouTube blogger “Organic Olivia”.

    She has some excellent videos on natural healing, and the reasons why we woman are suffering with hormonal imbalances. I wish you all the best in your healing journey. Peace and Love ❤️

  2. kathy

    I read every word of your story. I am horrified on your behalf that your doctors didn’t take you seriously, and that as a young college student in severe pain you were treated like a drug-seeking “faker”. Your diagnosis came so late for you, but knowing what you are dealing with is going to make a difference. Best wishes to you as you navigate solutions. Maybe you can find a new doctor — or at least always remember that you are your best advocate and it’s OK to require/request what you need and/or change doctors if you need to. Sending good thoughts to you.

  3. Teresa

    Mady: I began my battle with endometriosis at 14, summer before freshman year. The very first day of my first ever menstrual cycle I was with my dad and stepmom (totally terrified). Cramps began that made me lie in the bathroom floor in fetal position. Month after month, I had to stay at home from school due to the severity of the pain. A local OBGYN prescribed birth control which belittled me because I never wanted anyone to think I was sexually active. Each year, he would give me a different contraceptive stating my body was getting immune. Keep in mind bc never helped only made my cycle regular. Senior year I went to college still suffering; although I knew if I one day missed took eternity to make up. Thank God, I met a girl who was going through the same thing only worse to the point she had to drop out before 2nd semester. We continued to keep in contact. Since she lived in a bigger city she was able to find a specialist something I did not have to my advantage. After coming back home for to finish my college career, I had surgery for an ovarian cyst. Post operation the dr told me I had endometriosis until then it had gone undiagnosed. What did we do? Change bc pills again and suggested having a child when I was not married. I decided to switch dr and found one who suggested Lupron. Great!!! something new I’ll try anything at this point. Little did I know this once a month injection put me through menopause (hot flashes, grumpiness, tiredness, weakness and even fainting spells). We got pregnant after Lupron but miscarried do to the depletion of hormones. The following Monday I could not walk due to pain of which they said a cyst ruptured, but I still wonder if there were remains. She done a procedure in the office that I would not which on my worst enemy. After that what did she decided? Birth control! UGH here we go again. Still hurting, cramping and everyone thinks I’m normal. My husband began searching the internet for a specialist no matter how far. We found her 2 hours away. I immediately picked up the phone and called. By the grace of God, they got me in that day. Sure enough she said I had scar tissue, endometriosis on the bile, uterus…pretty much everywhere and scheduled surgery for the following Tuesday. I am so proud to say I am pain free for the first time in 10 years and were are on our way to hopefully have a little peanut. I know what you are dealing with. If you have any questions comment on this post and I will give you my email address. DO NOT FEEL LIKE YOU ARE EVER ALONE.

  4. amanda little

    Hi Mady,

    I too was a gymnast for the majority of my life and have been struggling with endometriosis, ovarian cysts, and now have been diagnosed with nutcracker syndrome. Please look at your ct scans and see if your left renal vein is narrowed, this is an under diagnosed condition and could be the cause of your symptoms. I would like to tell you that laparoscopic surgery will cure your endometriosis, but unfortunately it will only cure it temporarily until it grows back again. I have had more that 15 laparoscopic surgery to burn, cut, and remove cysts and endometriosis and every time it returns with a vengeance. You have to take your health into your own hands and make sure you get all of your scans, A LOT of the times doctors neglect to tell you vital information on bloodwork and scans, so be vigilant. I will tell you that the lupron injection has been the only thing that has worked to dull the symptoms. Please do your homework and don’t give up the fight.

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