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Amanda’s Story (Endometriosis, Arachnoiditis)

Amanda's Story (Endo Story)

My name is Amanda and I have had a rough life so far. I am now 29 but I will begin from the beginning. When I was 14 I had horrible periods. At 15 I was diagnosed with endometriosis. I was put on birth control but it never stopped the horrible pain I was in. I would pass out during periods and bleed so much that I became anemic. I was married, to some might say was my high school sweetheart, at the age of 19. We moved from New Orleans, LA to Goose Creek, SC.

Not six weeks after our marriage was when the abuse began. I came in from work and he didn’t like what I was wearing and I told him he wasn’t allowed to tell me what I could and couldn’t wear. He slapped me across the face. I was in shock and I didn’t know what to do, so I blew it off as nothing. As things went on it got worse, he would come home from work and verbally abuse me, calling me names such as; bitch, whore, and slut. When he found out I could have cervical cancer again, he slapped me across the face, leaned over, and told me he hopes I have cancer and die. I cried for days.

Several months later he went out and bought a new car without talking to me about it. How were we going to pay for it? How would we afford food and other things? He didn’t care. As wrong as it was of me to do this I picked up a small rock and threw it at the car, leaving a dime size dent on the hood of the car. His face turned into something I had never seen before. He ran inside grabbed me by the hair and threw me on the ground. He then proceeded to hit me over and over again. I kicked him to get away all the while yelling for help and no one heard me, or wanted to hear. He threw me up against the wall put his forearm against my neck and choked me until I almost blacked out. He let go, I scratched him, and I tried to kick him. I was losing my breath and it was hard to get away. I tried to choke him back and even that didn’t work. I pushed him off me finally but he grabbed my arm so hard, threw me on the ground, pinned me to the ground, and yelled in my face how worthless I was and if I wasn’t going to listen he would hit me. I was his wife and I had to do what he said, when he said it those were the rules. He punched me in the face and held my hands over my head with one hand and the other was around my neck. He got in my face and told me I was a bitch and he would never let me go because if he couldn’t have me no one would. He leaned down and bit my lip just because he was angry. I was begging him to stop. After what seemed like hours of him hitting me and trying to choke me, he got off me. Before he got off me he ripped my shirt in half then kicked me in the stomach and left me there. He came back about five minutes later kicked me one last time and said I was pathetic to get up and do my job. I had a friend come by and help me get up off the floor. They called security and he was arrested later that night for domestic abuse. The Navy told him he wasn’t allowed to talk to me, see me, or come back to the house, and if they could get rid of me from the base that they would sweep it under the rug, and nothing would happen to him. So I left and he never went to therapy or anything.

I moved home and tried to get on with my life and get a divorce. But there were other plans. I had my first surgery at 19 when I was diagnosed with cervical cancer. In 2005, when I went into surgery they removed as much of both (endo and cancer) of it as they could. They told me I would more than likely never have children. In August, when hurricane Katrina happened I had to make a choice to live with my husband or to stay in New Orleans and hope for the best. So like a fool I went back to Charleston, SC with my husband who had apologized for all the abuse and said it would never happen again. But between losing everything in my house, what could I do? I had nowhere to live, no clothes, nothing.

When we were in Charleston, before we moved to Virginia, I got pregnant. We moved to Norfolk in October 2005. After I found out I was pregnant my husband moved out and tried to get me kicked out the apartment. He turned off the electricity, cable, whatever he could to kick me out. He stalked me for months, and then tried to say the baby I was carrying wasn’t even his. I was put on bed rest at three months because of all the stress, my cervix wouldn’t stay closed. Through some miracle I had a son in 2006. I had a healthy baby boy, but the bad periods had gotten worse. I found out I was pregnant again with my second son about seven months after I had my first, miracle 2. It was the same kind of pregnancy with my first. I was on bed rest, I had gotten pink eye, meningitis, and started to have bad back and leg spasms. I was falling down the stairs all the time, so my husband asked my mother if it was okay if I stayed with them till my second son was born. So I moved home which was now Picayune, MS.

One night in late July I was having terrible contractions. I went to labor and delivery. They did what they could to stop the labor but they couldn’t. He was coming one way or the other. He was born three months early and was in the NICU for months. Right after they did the spinal block for the emergency c-section, I started having migraines which I have never had. The pain was so unbearable it was like someone was stabbing me in the back over and over. I couldn’t feel my legs for hours after the spinal block was wearing off. I complained to my OB/GYN and my nurses and they blew it off as it was nothing. When my son finally came home I went to put him to bed and then that’s when it happened. My back went out and my mother had to rush to get my son because I fell to the ground in pain. For years I went to doctor after doctor and no one could explain the pain I was having. My doctor’s agreed to send me to physical therapy. My period’s had gotten as bad as I could take so I was sent to Yale OBGYN/ENDO clinic in CT. After months of trying new birth control and hormone shots I was finally diagnosed with Adenomyosis and PCOS.

Adenomyosis is uterine thickening that occurs when endometrial tissue, which normally lines the uterus, moves into the outer muscular walls of the uterus, so you are basically bleeding internally. I had a period for three months straight. That very day I get a call from my doctor telling me at the age of 24, about to be 25, I had to have a hysterectomy. Of course you can imagine how devastated I was, I was so young and had to have that done. But I tried to stay strong for my kid’s, but I cried for months after it was done. April 2009, I will never forget that day, it was like someone had gutted me like a fish. They were able to keep one ovary that wasn’t damaged as bad by the PCOS. That very same year I had back surgery because they had found two tumors in my lower back which they thought was the reason for my pain. They removed them and nothing, the back pain was still unbearable. They finally after four years of horrible pain (I can’t even begin to explain), I was diagnosed with arachnoiditis. You are thinking what the hell is that right? Well Ill explain. Arachnoid inflammation can lead to many painful and debilitating symptoms. Chronic pain is common, including neuralgia. Numbness and tingling of the extremities is frequent in patients due to spinal cord involvement. Bowel, bladder, and sexual functioning can be affected if the lower part of the spinal cord is affected. While arachnoiditis has no consistent pattern of symptoms, it frequently affects the nerves that supply the legs and lower back. Many sufferers find themselves unable to sit for long (or even short) periods of time, often due to severe pain as well as efferent neurological symptoms, such as difficulties controlling limbs. Arachnoiditis is a chronic disorder, with no known cure. Pain management techniques may provide some relief to patients. Prognosis may be hard to determine because of the lack of correlation between the beginning of the disease and the start of symptoms. For many, arachnoiditis is a disabling disease that causes chronic pain and neurological deficits. It is also known to many as failed back surgery syndrome. For years I researched why I could have this much pain because it wasn’t normal. They lumped me into the category of fibromyalgia, and every pill I took made the pain worse (other than the pain killers). And because of my two young children it was either live with the pain and take pain pills everyday or get a spinal cord simulator.

I spoke with my husband about the pros and cons, so I went in the same year 2009 and got a spinal cord simulator put in. At first it was hard to deal with getting shocked 24/7 but then I became used to it. The pain finally let up a little. After years of being on bed rest I was finally able to start to do normal house work again. In 2010, I dislocated my knee and found out that I had hyper-mobility and patellar subluxation, and arthritis in my knees and back, with scoliosis and colon cancer. Hyper-mobility is a fancy name for being double jointed, and because of that my ligaments are more flexible than most. My joints in my knees, hips, and shoulders dislocate themselves and sometimes cut off blood flow to my arms or legs. There is no cure for it, I just to try to manage it day to day.

In between all of this my ex husband was abusing me, hitting me, and verbally abusing me. I figured I couldn’t so anything because without him I couldn’t have had the surgeries that I needed to get better. In 2011, I was given ambien to sleep at night. I couldn’t sleep at night because of all the pain, and muscle twitches I had. For two years I found out that he had been rapping me when I would take my ambien. But what could I do? I needed him, until now.

Through therapy I was told I had PTSD from all the abuse in my house, and him threatening me with a gun. I finally put my foot down called the police. NCIS took over my case and JAG will hopefully prosecute him. Yes my husband is in the Navy, and he deserves to be punished. I want you ladies to know it has taken me years to come to terms with this. Between all my medical issues and the abuse I have learned that help is out there even if you have to do research on your own to get it. You know your bodies better than anyone, and if you don’t like and answer a doctor gives you go to a different one. We are not victims, we are survivors. I wanted to share my story because I am sure there are others out there with similar issues or problems in your household. Don’t give up. Help will find you when you least expect it.

Attached is a picture of me now. STAYING STRONG… For nine years I lived with an abusive man. He did everything he could to crush my hopes and dreams and make me feel worthless and useless. He abused me mentally, physically, and verbally and did it all in front of the children (except the sexual abuse). The kids are terrified of him, I am terrified of him. I always try to stay positive about the situation but he always does something to try to hurt me or the children. He doesn’t pay us child support, he doesn’t help with the medical expenses, and he doesn’t even see the kids anymore. They don’t like to talk to him and he scares them. The boys make up excuses of why their dad doesn’t live with them, and I feel awful that are going through this. I don’t know what to do anymore. If there is anyone out there with advice I hope you can give me some. I still continue to struggle with my chronic pain, and the cancer.  I have good days and bad days like everyone does, but now I am alone doing it all by myself, and I think that makes it harder for me. My kid’s look up to me and if I let my ex-husband back in our lives my boys will treat their girlfriends or a wife like mine has treated me, and I would not be able to stand that. I hope my story helps someone.

Amanda
South Carolina
Submitted 7-12-2013

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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6 comments

  1. You are a very brave woman and you should be very proud of yourself for finally having the courage to do something about your ex-husband. He is the worst kind of person and deserves every bad thing that comes his way. Reading your story and stories of others gives me some hope because even though I’m 16, I have a chance of being diagnosed with some of the things that you’ve gone through like PCOS in the not so distant future. It gives me hope that if that does happen to me then I might have the strength to deal with it even in the toughest of situations. There should be some kind of award for someone as strong as you. Keep you chin up and love your babies as much as possible.

  2. Omg I Never thought there was ANYONE that was like me. Thank u soo very much for sharing. I’m 34 now but aside from the spouse abuse that’s is. Medically dead on. I’m gonna right in about my story but let me tell u, u r not alone. At 34 now now w/my 2 lil miracles I suffer daily praying my daughter does NOT GET THIS! Both my pregn.were high risk bed rest at 5mo.my 1st takin early & my 2nd early by c-sec.which I felt them cutting into me & my hubby rushed out & then the headache like death takin them 3 long hrs to figure out & had blood drawn to put in my back to stop spinal fluid frim hittin my brain.I’ve too was diag.w/stg 4 cervical cancer at 15 when diag.w/endo finally after 3yrs of Hell & it’s in your head. To date I’ve had 14 surgeries to fight but have no ins.& fightin for disability. My 1st 5 surgeries were b4 I was 16. By 19 I ended up needin emerg.surg.to remove gallbladder. Doc said was worst youngest case he’s had & practicing 20+yrs. While in hospital for that my lung collapsed. I also have lower scoliosis, arthritis thru my spine I guess called AS for short. I’m in sever pain & on morphine daily myself. I’m blessed to have a good man but I have had other fam.trouble that has crippled me with stress. So idk what u r sayin. I do thank u for sharin, to know your Not alone really helps me anyway!:-) if u like message or friend me on FB! Stay strong endo sister, if we don’t know one else will, gotta b your own advocate! Will keep u in my thoughts & prayers! Traci Case/Graham from Omaha, NE if u wanna find me on FB!

  3. Just wanted to add, have they tested you for Ehlers Danlos Syndrome? It’s a connective tissue disease affecting collagen production. People with EDS have abnormal collagen, so their joints are more flexible, but they can also have many other problems because of it. I have EDS, Type III, hypermobility type. I’m going on my third hip surgery before the age of 30 and my whole spine is degenerating. I have lots of other joint issues and health issues because of it. Might be worth seeing a geneticist. There isn’t any treatment beyond PT and just being super duper careful. But for me it was validating knowing why my body was so dysfunctional. Also, I’m so proud of you for finally getting away from your abusive husband. That must have taken a lot of courage, and I’m glad you are prosecuting him for it. He needs to be punished for what he did to you and your family!

  4. Amanda are you still on this site I wonder? Can you update us?

  5. Stories like this really enthuse me to go out and meet women.

  6. Hello Amanda, you write that your kids look up to you , miracle isn’t ? That your chidren have a strength that keeps you alive , their love for you is stronger then the “jackass navy junk” , to which to me is garbage thrown out last week , not important anymore,, let alone talk about , so let’s go upgrade you and your family’s mind , health and spirit , continue to teach patience love and find what makes you peac8efully happy and LISTEN TO HELP YOUR CHILDREN find what they NEED to find their peace of mind as well , you could have individual prayers or reading time for each child !
    Everyday let yourself know you are special, strong and not a victim but a SURVIVOR of a bad choice . To be strong for you and them make sure that they know you too need some quality time for yourself as they do for them and put a handmade sign on the bedroom door saying ; my reading time !! That means, that as much as you do for them they should respect your time to rest or read to be stronger later on , always be soft spoken , gentil, loving so they see the difference berwen bad and good parenting. You seemed to have done three things right , you have given yourself a second chance in life to feel your self worth as a person , woman and mother , second : you know that you can turn around and see what you want for you and kids , three : you took a stand to stop violence , to ask questions, and show us your pretty face in your picture ! As for medical advice I have none to offer you but♡LOVE♡ TO SHARE , Amanda you are a” can-do girl” , and your journey started positively when yoy took your first step away from him ! Aren’t you proud of who you’ve become !?
    Stand infront of a mirror and see the strong pretty lady there ? That is you !! See the twenty fingers hugging
    you, those are your children’s proud love, and their thank you for showing us a better way to enjoy lfe as a stress free family !
    So my friend I have you in my thoughts , prayers, !!
    With much appreciation , love , from Canada,
    Brigitte Estelle
    , my sister’s story is on lymphoma her name is diane gaudreault

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