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Samantha’s Story (Endometriosis)

Samantha's Story (Endometriosis) LR“Endometriosis”….. This word used to be so foreign to me. An unknown word, disease, condition. Hard to pronounce and I was finding it even harder to understand.  A disease that is so ‘hush-hush’ – very few know or understand. A disease that the iconic Marilyn Monroe had, Queen Victoria as well… From 100’s of years ago to even 50 years ago, there have been very few forward advances in education and research. Now in my heart, I want to strive to teach others this word, this condition that affects so many, this disease that can completely stop and topple a life that I worked almost a decade to accomplish.
I’m currently ‘still’ picking up the pieces. Let me take you back and try to explain the journey.

My name is Samantha. I am a mother, a wife, a daughter, a sister. I was blessed to have two beautiful children, my mini me’s – both redheads like Mommy. I am married to a man I fell in love with the first time I touched him. He is my 1st love, my high school sweetheart, and my soul mate. We’ve been together 15 years, married for almost 10, but even my husband still struggles with this word, this condition, this disease that has changed his wife – the words from our vows, “in sickness and in health” ringing in our ears.

I was officially diagnosed with Stage 3 Endometriosis on Feb 6, 2010. The ONLY reason I was able to be diagnosed was because I put my foot down and insisted upon having my tubes tied @ the age of 29. I had been to the OB-GYN several times over the years before, complaining of the sharp, stabbing pains in my side. This coupled with my other symptoms of back pain, pain with sex, extreme cramping, and heavy bleeding during my periods lead me and the doctors to believe I may have Endometriosis. Birth Control, Depo Shots, Pills. As many women may know the roller coaster ride that these medicines can put you on, well at least for me… I was done with Birth Control and insisted on a tubal ligation.

Upon waking up from surgery I was told that it was confirmed that I did have Endometriosis and several cysts that were removed. The sharp pains I was experiencing previously were cysts rupturing or rubbing. Regretfully, I honestly just took this information and put it in the back of my mind. Stuck it in my back pocket and moved on with my life. A lot of things playing a factor, uneducation of what this disease was that I had been diagnosed with, my ignorance, just taking the information and never doing anything about it. Not until August of this year. I have been dealing with the symptoms that I was experiencing for so long and its sad to say, but I was ‘used’ to my routine, but in August of this year, I experienced a “flare” due to stress. My symptoms changed dramatically. I lost 20lbs in just a few weeks; I was nauseous and throwing up 5-6x a day. The pain in my side abdomen was constant, my back pain was extreme. Also I am still experiencing GI symptoms, painful bowel movements and gas. My primary care doctor requested an ultra sound, blood tests, CT scan with iodine injection! Needless to say to all the women who suffer from this disease know that this nasty, insidious disease hides from all of those tests. Desperate for answers I was surfing the internet, searching symptoms and Medical sites. Finally a light bulb went on when I crossed a support group site for Endometriosis. I found so many women describing to a ‘T’ what I was experiencing.
I’ve learned so much from these women, sharing their own experiences, questions, and fears and educating me on this disease. I find it greatly disheartening that there is not more information available. Why this disease is not spoke of in sex education classes. If 1 in every 10 women or girls has Endo, why is it not a public education topic??? Why did I have to learn about this disease via the web, and come to find out other women in my own family has had full hysterectomies before the age of 30!!! Why did I have to surf the web at endless hours of the night, desperately searching for answers. I clicked through so many stories of other women struggling with this disease and how it has affected their lives. Suffering, just like me, silently, trying to continue with a normalcy of life that is further and further out of reach. The empowerment I felt when I read about another woman who was experiencing what I felt, and I wasn’t crazy… or imagining the pain… or looking for attention. You hear so many women share the same remarks, the same disbelief from their closest friends and family members. Husbands and friends who think they are exaggerating….. complaining… telling you to ‘suck it up’ or ‘be tough’ when you know you’re already doing all those things and this disease is fighting you.

I’ve chosen and prayed not to let this disease beat me – that I will fight to regain my life. I want to be the Mommy again that can get up in the morning with her two small kids and make breakfast and laugh and see their gorgeous smiles. I want to be the wife that feels good enough in her own skin to make her husband happy. I want to be a good friend that can make plans and keep them, not having to call and cancel because I’m not feeling well or even worse, I have anxiety over going out and in the middle of the public eye and start to get sick.

I have chosen to go see a specialist in my disease, a man that I know will have the understanding of this disease and be able to perform another surgery to remove the current Endo growth and cysts – Dr. Cook of Las Gatos, CA. I hope to schedule time to see him after the hustle and bustle of the holiday rush that is currently upon us. I have already spoken to my insurance and know that it will be covered, I have completed the forms necessary and I’m currently just waiting to gather all my previous records and surgery images to send down to his office.

I know this journey ahead is a long road, as there is no cure for my disease. A disease that affects too many women and girls to go unnoticed, yet it does. A disease that so many doctors are not educated on. These women and children should not have to suffer with doctors that don’t believe them or don’t take them seriously. This disease that has affected beautiful sex symbols, starlets, royalty and all other women across the globe. A disease that affects ME and those around me…. But I will Fight Like a Girl and help spread awareness – not only see through my own journey in this disease, but help my daughter with her possible upcoming battle – that she will not be afraid or ashamed to ask questions or ask for help if she is experiencing symptoms and most of all I will not let her suffer in silence, we will have a voice.

Submitted 11-21-11

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. Netta

    Hi hun …
    Its good to hear people talking about Endo .My Dr also think i have it and i an scared has hell in August he booked me to have my surgery .My biggest fear is the doctor taking out my jewels …LOL
    I have put on so much of weight because i feel so depressed i want to eat all the time .You are so right that there is not much info out there for girls out there .I always had bad preiod pain and i was told by doctors after i have kids the pain will stop .which was a lie !
    i use to get so sick that i use to miss school because the cramps was so bad .
    Thank god i have a good Gyn and he knew just what was wronge with me .so i am glad i can chat with others about my Endo .

  2. Justice

    I was diagnoses with a large ovarian cyst in early 2011. They did surgery and discovered stage four endometriosis, the most severe. I had organs that were stuck together because of it. The doctor told me it was the worst case he had ever seen. When I came out of surgery he had let one ovary because I was too young to go through menopause, (I was 41). Now the endometriosis has reoccured, and I have a cyst on the remaining ovary. I had tried the Depo shot and had a very bad experience with it. I have had to battle for a month to get the Doctor to agree to do the surgery and remove the remaining ovary. All the while, I have been in a great deal of pain trying to go to school and take care of my grandsons. If you have stage 3 or 4, and they want to do a hysterectomy make sure that they take everything or you will probably end up back within a couple of years having another surgery.

  3. Clara

    I’m right there beside you in this battle. I’ve been fighting Endo for 5 years! I’m finally going in for a complete hysterectomy August 22, 2012! I’m scared out of my wits! But I know that I’ll start to feel like “ME” again, and get my life back! God bless you sister! And keep fighting like a girl!

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