Thursday, October 11, 2012

Endometriosis .. my story.

I have a disease called Endometrosis. Some people know a little about this, but in more cases then not, most are not familiar with exactly what this condition entails.   I thought I would write a little about it today, share my experiences, in hopes to bring more awareness.

For those that are not familiar, Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus.  Fun right?

From the endless hours of research I have done, I have learned that over one million women are affected with disease. Many are not even aware, because they do not have the symptoms, lucky them!

In my case, I have many of the symptoms. My cycles are extremely painful. I know, I know .. all cycles are painful right?  I have had many people tell me that when I explain that I have Endometriosis .  I don't want to judge others, but in my case there are times I cant even get out of bed. There are days I cant walk without being hunched over  because I am in so much pain, and simply some days I cant even walk for that matter.   There are days I am ghostly white and even the best of the best prescription pain medicine doesn't help.  The pelvic pain and cramps are really out of this world. Another symptom  I suffer from is infertility.

Getting a diagnosis for this disease is not easy. I went through more then my fair share of ultrasounds, both the easy ones & the uncomfortable ones. I have had a handful of MRI's and cat scans, and more pelvic exams than I would wish on anyone.  It wasn't until a tumor was found on one of my ovaries during an MRI, that I had a operation, and that is when my doctor could give me a definite diagnosis.   The tumor was softball sized and in fact was a build up of all the endometrial tissue.  It was non-cancerous, thank you Jesus.

Treatments.  That's funny to me, because really there is nothing that really takes this away, or a certain cure of any sort for me. During my operation, many of the endometrial cells that were in a safe position to be cauterized were done so. However, they continue to grow. The cells attach to organs all over the body, can form tumors like I had, and in some cases turn cancerous. For some women, birth control can help, but in my case, made it worse.  You can opt to have operations over and over to get the cells cauterized.  You can have GnrH treatments which suppress the estrogen production in your body, and that can slow down the growth, but that also puts your body into a menopausal state (bone loss, hot flashes, mood swings).  In my 30's, I don't really want to be in a menopausal state.  Some women opt for a complete hysterectomy, again in a menopausal state. In some cases this helps them, unless of course you are one of the women that need hormone replacements and if you add in estrogen, then the Endometriosis will grow again.   So in my case, there is no real answer. I often re-visit all these treatments with my doctor, and for now I just deal with it. With of course my prescription pain medicine. I need this about 3 days a month.

Having a job with Endometriosis is not ideal. There are days each month, I just cannot function.  When I worked outside the home, it was a known fact that I would just be out of work for 2-3 days per month. Luckily, I work for a bigger company that has to comply with the Family Medical Leave Act (FMLA), so after a whole lot of paperwork is filled out by my doctor, its gets approved.  In the last few years, Ive been lucky to be able to work from home, and choose my own hours, so my time away has lessened.  I can work during my good hours one day and make it up on another day. 

Having Endometriosis certainly has its control over my life. I have to plan around it, and try to gauge where the painful days will fall each month. Planning a vacation months in advance is not ideal.  I have taken part in a few medical studies for different medications they try to get approved for this disease, but as of now, nothing new. As I am getting older, I may re-visit some of these treatment options, but I am not on board with operations or treatments that are not certain. For example, Im not interested in a hysterectomy, not knowing if I will need hormone replacements, and then if I do, end up in the same spot I am in now. I have read many stories where this indeed happens, and women end up in worse shape then they were in before this procedure.

I have been judged over and over again.  I just ask that next time you want to roll your eyes at someone, or disregard someone for just being on their cycle .. there could be bigger issues.  I can't even count, how many times, when I worked in the office, I would come back in to hundreds of questions asking why I was out, and after explaining,  getting the "Oh my cycles are painful too, and I still come to work" replies.  Oh how I wish for a minute, they could go through what I do each month. (not really) We are all so quick to judge, myself included, that sometimes we need to step back and realize it could be a bigger issue.





10 comments:

  1. This is so very, very sad.

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  2. Sending you extra love on the hard days xoxo Angie

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  3. So glad you have medical leave, it's a big deal.


    My sister-i n-law suffers from it, quite severely. So no judgment from me.

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  4. Thank you for sharing your story Shauna. Hopefully it will teach people to think before saying something or just taking a step back and realizing there could be more going on that they have not been exposed to. Your an awesome sister and I am so lucky to have you!

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  5. I am so sorry that you struggle with this horrible condition. It's really awful - my mom struggled with this for many years, and I have a friend who struggles as well. Thank you for sharing your story - I hope they (doctors) start doing more research about how they can "cure" this!!

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  6. One of my very best friends suffers from endometriosis, so I have seen the effects of it first hand. Such a difficult condition. I'm so sorry to hear that you too suffer from it :( -- but good for you for sharing your story with others and working to spread the word!

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  7. Thanks for putting yourself out there like this Shauna, your candor is appreciated :) I've had ovarian cysts on and off for years and they can cause my cycle to be horrible. One day a month I'd be extremely ill and when you have an unsympathetic boss (a woman to boot!) life can become stressful xoxo

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  8. Shauna, I am so sorry that you have to deal with this. I have known a handful of girls {mostly bloggers I have met} that are dealing with this, too. Keep your head up, lady. And I love the quote on that last image. We all need that reminder.

    And that aside, this is my first time to your blog. It's gorgeous over here... Don't mind me while I creep around. :)

    Happy Friday!

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  9. I'm so sorry that anyone would make you feel badly about something you have no control over! Sometimes people just can't relate to what they don't understand, thank you for sharing your story, I know infertilitly is a hard and painful road but you are not alone!

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  10. Shauna, I am very sorry that you have to deal with such pain. Shame on anyone who would make you feel bad for not being able to go to work because you are in too much pain! People can be so horrible, but don't you let them get you down! Hugs, sweet friend xxx

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