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Gina’s Story (Endometriosis)

Gina's Fight Like a Girl Story (Endometriosis)To all my friends and supporters in my fight for survival,

As you know, we have one heck of a fight ahead to get people closer to awareness and  possibly even benefits. It has been a longtime dream of mine to leave behind a legacy for those who truly love me, would be proud of me and would remember that I did all I could with what little I had left. With the help of friends and strangers to fight this battle. So that long after I am gone girls will have a chance at a life they dream of, whatever that may be.  A foundation that educates and gives hope and understanding for a disease that can cause you to lose yourself completely, dreams and all.

Before I begin this, those of you who know me know I love the outdoors and was a runner when I lived in Florida. I would ride a mountain bike almost 30 miles a day. Work, camp, hike, climb mountains, outlast most of the men in my life and was up for anything active. I was a lot of fun, with plenty of stamina, swim team in school, danced even after being sick.

Since 2000, after being told it was stage 4, which was way too late to try any treatments – not one single doctor knew anything to help me. Since then, about every six months or so I had something to deal with medically,  from surgeries, to weeks in the hospital all drugged out.  I had doctors tell me it’s all in my head or that I was a drug seeker! Well, if I am in the ER saying it hurts so bad that you gave me morphine and it still hurts, HELLO. Yet I was still treated as though I was over exaggerating and in the same breath be told its just like labor pain. It was then I knew my mental state of mind was in bad shape because of endo.

I moved back to PA late 2005, was back in the hospital hearing all the same things. Earlier that year I had spent 6 weeks in the hospital only for the Dr to finally go in laproscopically and find my left ovary wrapped around my bowels, adhered to it and in a place it shouldn’t have been. They took all that out of course. Six months later it began again. No one would listen. So now I’m started on danazol, lupron and hormones, it was ridiculous. It acted like a cancer, so they tried to treat that. They thought it may by menopause. etc. It thrived off my estrogen, so they would take it away, what a nightmare.

Summer 2006 my cousin took me once again to the hospital because I was in severe pain in the liver region up under the ribs,  I was throwing up bile and couldn’t move. Then the words that changed my life forever came out of this doctors mouth, you need to go to an ob gyn oncologist, there’s nothing we can do, it’s too far advanced, and a heartbeat later I left the room, I had to ask my cousin a few minutes later, did he just say I have cancer? I was 33 years old and had been told most of my life ”oh its not that bad” and here I sit almost outside my own body in complete shock. At the time I lived in Philly, I went home, sat in a room alone for a week, didn’t even speak to my cousin, that was the hardest thing I ever had to do, completely get my mind to understand. THIS IS REAL, there is no cure, but let me tell you how hard it is to do, almost two years later I don’t think I am really there yet.  Not only that, but it was found on the left lobe of my liver and inside the bile duct. After surgery, where my gallbladder was taken also, I had to undergo Chemo therapy along with shots of interferon. The chemo and shots went on every week for months.

In 2005, Hurricane Irene scared me right out of Florida back to the hills of Pa. During this year I lost two children in utero, a month after I lost Jayden. I met Craig, it was love at first sight, my benefits kicked in finally.I know how hard it was to get treated, I found a Dr who is head of ob/gyn at lehigh Valley, he is my angel, he listened and what he heard was the fact I was belting out. He went on ob/ and told me I am 1 out of 10 of his patients where what works for others doesn’t work for me. I under went a full hysterectomy in 07, they took the appendix out then too. They put me on estrogen, and at the time didn’t question it, but it led to my 2011 flares! They have since put me on clonodine.

So, as of today I am missing a lot of parts and I just learned that I have severe ARD. Therefore, they don’t want to go back in to cleanse anymore. I was on meds for mental strength, which I no longer take. They put me on clonodine patches to control the menopausal symptoms, but you can’t fool mother nature. I fell into a rough patch living in BFE.  Dr Patruno however was willing to learn, that’s a first! During this time I lost friends, lives, loves, and children to Endo. I lost 6 inches of bowel, uterus, ovaries, gallbladder,appendix, so many operations and getting ready for more.

In may 2011, I was rushed to the hospital again, had been throwing up bile for 7 hours, that symptom was how my flares began, ended up with an admission and heavy pain killers, was released knowing its back. After the hysterectomy I thought for sure that after two years of nothing it was gone or at the very least controlled, couldn’t have been more wrong. Came out of remission is what happened. I can’t eat, I can’t sleep, I pray for anything to make me feel better, knowing there’s nothing close to a cure. I am afraid its never getting better or easier, the hospital, the pain, the depression all take their toll on my brain. I am so scared to hear what’s next. People don’t think this is a deadly disease but I am proof it can be! My fiance knew when we met I didn’t want him to survive this too, but he never left my side. Thank god! I am not alone.

I never want any girl to grow up and not have a life she wants. I want every girl to have the chance at a happy life, a chance to have a family, a chance to see her kids grow. To know the love of a real man, to never suffer alone, and to know she is never alone. To be happy, and blessed with joy. I spend my days searching for info. Being there for total strangers on my facebook page fills my need to take action, and to know I am not alone.

This was written to be passed along to all the women, sisters and friends, and anyone who has any thoughts on how to help me build this dream. We need action now! 61,000 women this year alone will be told they have cancer that can’t be cured, only managed…….How can that be in the richest country?

Thank you for listening.

God Bless

Submitted 9-13-11

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. Diane Smith

    It took more then 2 years to find out I was not suffering with the change of live but endrometrisis cancer ,the main thing I would like to get the word out about is this is not found with a pap smear but a biosy of the uterine wall,I have tried my best to let women know this as I always also assumed pap test comes back alright I have no cancer,thanks to Gyn Dr.Elaine Deplussi I explained my symptoms and she did this test right in her office,a couple days later she asked me to come in,cancer my biggest fear and she is saying I have it,Took a few days to even say anything to friends or family as that made it seem more real,but no hiding from this,had a hysterectomy everything gone including the cancer,was found in stage one,Dr. had chemo lined up but then cancelled,I did not need it,I get check-ups every 6 months and now it has been 5 years but I remember the fear,so hopefully if this a syptom of yours go to a good Gyn. I am so blessed this was found early,do not let them say it is just in your head,get checked!!

  2. Diane Smith

    Good Luck Gina and thanks for sharing your story,you are right about all the women who could be saved, I hope that you get along alright.,

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  4. Sandie

    I experienced a year of pain without cause while dropping on the ground in pain. Result: cyst on ovary missed by tests and ultrasounds because it appeared as a shadow of a shadow. By this time cyst had erupted. Thank God it healed by God’s graces and I got better. Do not give up. Go until you find a doctor who will not give up and will look for the answer. God Bless to those of you who made it and bless those families of those who did not. Please keep attending congressional hearings in your state.Show them your diseases. Show them your strength .Be the reason we get national affordable healthcare…and thanks for sharing!!!

  5. anabel

    WOW girl I bow my head to you ,You have been a survivor of pain and you kept your head up and your faith stayed through it all… I understand you I don’t have what you got but I suffer from Lupus and it’s been rough and I read your story and you give me more courage to face my illness… Ill do my part passing your story and hope to find the cure that is needed God Bless You a million 🙂

  6. Steph

    Thank you for sharing your story! Keep fighting the fight and i wish you all the best!

  7. sue stewart

    Oh Diane do I know what you mean about a clear paps mine came back good but when they did a D&C it came back saying I have Endometrial hyperplasia with Atipicial cells not quite cancer but could be there they wanted to do a hysterctomery but can’t due to my weight and age 56 so I am on a drug Megace 2x a day and need D&C every 4 months to check up on if it progresses. Not having any medical insurance presents a issue but because I have a fantastic Dr here in Butler PA Dr Cypher he has me set up an a payment plan and April I will be having my first D&C since put on the Megace. I am a fighter I have a wedding to be at May 26, 2013 my only childs My daughter and I plan to be there with my fancy dress I bought 4 months ago so girls lets show this Who’s Boss

  8. Martina

    Thank you so much for sharing and fighting for us all! It seems so easy to just give up, but you give hope for a better tomorrow . I am surviving endo and have dealt with a lot of your struggles! I still am, but I am surviving! I often state that endo and depression, even fatigue, run hand in hand. Endo slowly but surely eats away at every part of us! Thanks again for sharing your struggle and fight! Good luck and I hope all is well.

  9. Megan

    Thank you for sharing! I was recently diagnosed in April 2015. Since treatment started the pain is only slightly less bit alot more frequent. I live in Bethlehem PA, and if I need a new Dr, I might have to try your’s.

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