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Endometriosis Awareness: My Story

Thursday, March 18, 2010

March is Endometriosis Awareness month (you can learn more about the no-men-allowed disease by clicking here), and in order to help raise awareness, I'm going to share my personal story with you. My battle with an invisible disease that won't kill you, but will make you stronger...

Growing up, my mother always gave me way too much information. About everything. Horrifying details and facts that little ears don't need to hear. By the age of 6, I had a very clear picture of what my menstrual cycle would be like. The word "clots" and "cramps" were brought up every other day, and even though I didn't know what either were, I was told to expect them, and asked frequently if I had them. As a 6 year old child, I waited for them. Endometriosis is hereditary, and my daughter will most likely have it as well. When I feel shes old enough, after shes actually started her period, we'll sit down together and talk about it, in the most positive way that my voice will allow. I don't want to scare her the way I was scared. I want to help her manage her pain if and when it arrives, and get her the treatment that is best for her. But anyways, enough of my little ones undeveloped story, and back to mine...

I didn't start my period until I was 12 or 13, and although I had been warned all of my life about how horrible it would be, I didn't experience any severe symptoms until I was a couple years older. By then, my mother had already had a complete hysterectomy, and had moved onto focusing her sufferings elsewhere.

My periods got worse and worse. I'd take midol, I'd lay with a heating pad, and I'd get on with my life. I was briefly put on birth control when I was 15, to help "regulate", or calm down my periods, but was taken off of the pill when my mother quit her job and lost her healthcare a few months later. It wasn't until after having my first child, that I realized how bad my pain really was.

Within a few months of giving birth to Eleanore, my cycle returned, and quite frankly, knocked me directly on my ass. During my time of the month, I couldn't move. I'd lay in bed, crying, begging for Christopher to bring me pain pills. Leftover pills from my c-section, leftover pills from Christopher's wisdom tooth removal, anything I could get my hands on. I couldn't stand up. I couldn't go to the bathroom. I couldn't think straight. All I felt was pain. Mind numbing pain. Once a month, for 5 or 6 days at a time, "I was broken", I'd jokingly say.

I couldn't take it anymore. After 4 or 5 months, I was sure I was dying. It didn't just hurt during my period anymore. It hurt all the time. Usually I'd get a short break, for a day or 3, just after my period ended- but for the most part, I was living a life of complete misery. I felt as though I was on my period every hour, of every day, of every week, of every month... I was going to die like this. It felt as if somebody was standing behind me with a knife, and would randomly come up and stab me in the back. I'd jump every time, and clutch whatever was nearest to me. The stabbing pains were sharp, and deep. I was embarrassed whenever somebody would see me jerk from the intensity, and then cry, not knowing when the next would happen. Between the stabs, a neverending cramping. Not just in my lower abdomen, but in my entire lower body, it seemed. My back, my pelvis, my hips, my everywhere. It never went away.

I made an appointment with the Woman's Clinic here on base. The nurse practitioner that examined me said that it was completely normal to have bad periods, and that I maybe had adhesions caused from my c-section, but suggested I see somebody off base. She prescribed me stronger ibuprofen (the military heals everything with 800 mg), and sent me on my way. But not before sending me to mental health first. Oh yes, that's right. They thought I was crazy.

And maybe I was a little crazy. Pain turns you into an entirely different person sometimes. I was desperate for help.

In the mean time, my family was suffering. My husband didn't understand. My baby didn't understand. I was always in pain, I was always upset. I wasn't much of a mother, or a wife. The guilt of knowing that, made everything so much worse. I couldn't stand the person that I was. I couldn't stand that I couldn't escape my own body. I couldn't get a job, because most days, I couldn't get out of bed. "Help me", I begged God every night, "forgive me, for doing this to my family".

And then I saw a doctor off base. A monotone lady with a brightly colored office, which I found to be weird. She listened to my symptoms. She examined me. Within 15 minutes, I had an appointment to have a laparoscopic surgery done. With a history of Endometriosis in my family, and my non stop crying and begging for help, she said that whatever was wrong with me, was real. They'd go in with a camera, they'd find the problem, and we'd fix it.

When I woke up after my surgery, I heard a nurse talking to another nurse. Saying something about how "they found spores of Endometriosis in this one". Was I that one?

...yes. They later showed me pictures of my ovaries, covered in bits and pieces of the lining of my uterus.

What happened next was emotionally exhausting. The doctor that I had been seeing, told me that my only options were to start injections of Lupron, a drug that would put me through an on-purpose menopause- or, I could get pregnant. Was she kidding? By that point, Christopher and I had been trying to get pregnant for a few months (which is why she gave that as an option), with no success. She told us "you can have children later", and insisted on my taking the drug. She said that if I didn't get the injections, she couldn't help us. She wouldn't help us.

We left her office, and never went back.

I did all of the research online that I could. What could I do at home, to help myself? There is an "Endometriosis Diet", no gluten, no dairy, no caffeine. I was already gluten free, but, I could certainly do better. I found that cutting out caffeine did help, so as awful as it seemed at the time, I stuck with it. I had read that using tampons rather than pads, made the pain worse, so I made a change there too. As much as I hated pads, I was desperate for pain relief. I had been prescribed a stronger pain killer, and took it religiously. I did everything that I read I could do, and we continued to try to get pregnant.

Every month that the test came up negative, I felt like I was being punished. Not only was I not pregnant (did I mention how badly it hurt physically to even try to make a baby? Sex is the last thing you want to try to attempt when you know how much it will hurt.), but I would have to endure 5 days of the most intense torture my body could throw at me. We had a routine worked out. A way of life, during my period. I slept on towels, to prevent soaking through the sheets. I wore overnight pads during the day. I had a strict schedule of when to take my pills, and if I missed one by even a few minutes, the entire family would suffer. We had it under control.

And then one day, there were 2 pink lines on the pregnancy test. 12 months after we had started trying, just as we were beginning to think that the infertility symptom of the disease was winning, we were going to have another baby.

The pain went away instantly. The agony, the emotional instability, the misery- it was all gone. Of course, it was replaced with general pregnancy discomforts, but in over all, I felt like I had died from the pain that I had been in for so long, and gone to a sort of heaven on Earth.

As my pregnancy went on, just like when I was pregnant with Eleanore, I forgot how awful it had ever been. I had a few specific memories of laying on the couch unable to move, because I had missed a pill, but other than that, I had been pain free for so long, I wondered if any of it it had even been real?

Christopher and I decided that after we had our baby (Charlie), we'd let nature do its thing. We wouldn't use any method of birth control. We'd get pregnant as soon as my body was ready. 6 months after giving birth to Charlie, my period returned. A month after that, I started to feel my Endometriosis creeping up on me again. It was dull, and completely tolerable, but it was there. Two months after that, we were pregnant again. We didn't expect for it to happen that quickly, and while we were surprised, we were grateful.

While I sit here typing this, completely pain free, I can't ignore what this disease has done to me and my family. Or what it will continue to do. After our next baby is born, if we're able to have a 4th, we'll let my body get pregnant when its ready, just like we did this time. If this is our last (to be determined by the doctor at the time of surgical delivery), then we have to decide what we're going to do. It won't take long before it sneaks up on us and drags me away to a dark cave again. Do we have a hysterectomy right away? I've heard about something called Endometrial ablation, do we go that route? Whatever we do, I can't go back to a painful life of misery. I won't do that to my family. I won't do that to myself.

For right now, I'm living my life, happily.

Endometriosis Awareness

It isn't too late to help raise awareness. March isn't over yet. You can display this button on your blog, or share your own personal story if you have one. The nurse that told me that it was "normal" to have bad periods, in my case, was wrong. There are treatments for Endometriosis, but you can't get them if you don't know you have the disease. You can pick up this button down at the bottom of our page, simply copy and paste it into an html box on your own website or blog. Don't be afraid to share your own Endometriosis story. Reach out and help a woman in need of being helped. Please visit http://www.endo-resolved.com for more information on symptoms and treatments.


Lindsay I-F March 18, 2010 at 6:09 AM  

Thanks for sharing your story!

Unknown March 18, 2010 at 7:22 AM  

What a raw emotional story, Tia. I've been having "bad" periods for a long time now. They certainly aren't to the extreme that yours became, but they aren't "normal". It was hard for me to see someone without health insurance, but it got to the point where I was scared enough to spend $300 on an appointment. I was told that I had Dysmenorrhea and Menorrhagia. She recommended birth control (I was on it before but I stopped using it) but really, I just don't want to add something else to my bills every month. So, she told me to take 600 mg of IB 3 times a day. It kind of freaks me out to take that much, so I've been taking it twice a day, and it's helped a lot. A heating pad in addition really helps. It doesn't take away that dull achey feeling, but it keeps the unbearable cramps at bay for the most part. But I do know once they've started, it's pretty much too late and you end up in tears crumpled in a ball on the floor. Are there mild forms of this? Is it possible I have a less severe case?

Anonymous,  March 18, 2010 at 8:40 AM  

Thanks for sharing this, Tia. I think Endometriosis is one of those things that you hear about "out there" but reading your story has helped me to get how awful it is for the women in my life who have to deal with this.

They call me mommy... March 18, 2010 at 8:44 AM  

Your story made me cry, as I told you before both my mother and sister had Endometriosis (before they both got full hysterectomy my mom at age 49, sister at 25 both in the same year) I am completely terrified of getting it too. You are an amazing woman for being so strong and thank you for sharing this very personal story, I can't imagine how hard it is for you!

Oh Mandie March 18, 2010 at 10:10 AM  

oh my goodness Tia, I couldn't even imagine going through all of that. My periods are ridiciously irregular and when I do get one it usually only lasts a day or 2 and the pain is beyond intense, but nothing compared to that. I have an IUD in, but because they are not fool proof and I bleed so irregularly I have to constantly buy pregnancy tests.

I'm glad that for a few months at least though your body is getting a break.

April March 18, 2010 at 11:46 AM  

I really can't imagine the pain. I've heard horror stories from a few family members. I will tell you that my mom had 2 ablations, followed by a hysterectomy. She said the hysterectomy was the best thing she did, that the ablations were painful and only worked for a few months. She was also a grown woman, very much done having children.

Chana@ Mamma Town March 18, 2010 at 1:27 PM  

Every day I am more and more in awe of your strength!! I couldn't imagine going through that! You make pregnancy sound like a day at the spa compared to your alternate option. You are just to awesome for words! Thanks so much for sharing that with us:)

TexasBobbi March 18, 2010 at 1:44 PM  

Honey, I went to school with a girl who story is a lot like yours. I want to thanking you for sharing your story.

The Girl Made From Color March 18, 2010 at 8:52 PM  

I couldn't even imagine having to go through that. Very emotional story. Nearly teared up. I'm so sorry you have to deal with such a big medical issue. If only there was something else they could actually do about it.

rite March 19, 2010 at 12:45 PM  

Incredible story ... I was diagnosed with Oviarian Cancer at 15 and after treatment and surgery to remove the cyst was cancer free for 4 years when i was then diagnosed with Endometriosis. I love your blogs... they truly inspire me becuase we have so much in common... its great to know there are others out there... everytime i read your blogs ... im like wow theres another thing we have in common... You are such a strong women!!! Keep up the good work! Your daughter is so blessed to have such a strong role model!!

Love and prayers...


Sarah March 20, 2010 at 11:04 PM  

hi preggo lady - i hope you are doing well. thank you for sharing this story - i don't know how aware women are of endometriosis. your words are always so comforting to me.

i hope you are doing well. kiss the babes for me :)

Felicia March 21, 2010 at 9:25 PM  

This has opened my eyes. I have been hospitalized a few times from this crippling pain I get in my abdomen and lower back ( people think I'm exaggerating or make it up )
But it KILLS I feel like I am going to die. Like someone is stabbing me. I've had ultrasounds, catscans, they've thought it was my appendix...it's never " anything " doctors dope me up on morphine until I vomit and send me home. No one can ever tell me what it is.
It's there all the time and it hurts.
I don't know why I have never looked into this before. Your story sounds exactly how I feel. I'm going to do some research now and talk to my doctor about this!

soul_searching_mama March 23, 2010 at 12:00 AM  

Thank you for sharing your story. I cried for you. And can I just say: you are AMAZING!

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