Bloggers Unite: What EndoMarch 2014 means to me personally

What does the million woman march for endometriosis (EndoMarch2014) mean to me? I could do a video blog for this one, but really, I’ve always been a “behind the scenes” kind of person. I worked on sets and wardrobes rather than starring in our school plays. I am saving you from watching a grown woman giggle and snort and forget her words!
Usually, I have so much to say or babble about. However, I’m finding myself really at a loss for the words.
I want to make a difference. I want the world to know about what we go through every month. What so many like myself have gone through. Pregnancy losses, autoimmune issues, diet changes because of the impacts of it on this disease and pain! Not just physical pain, which at times can be unbearable, but the emotional pain. And not just my emotional pain. The pain and heartache my husband has had to endure. The, I can’t even imagine pain that my parents have gone through watching me suffer. And the impact it has on work. Just when I think I can go for that promotion, where I’d have to work longer hours with more physical strain, Endo reminds me what it can do to that dream of making more money. Even while I was recovering from my last surgery, I went back to work early for fear I’d lose my job and so my bosses didn’t think I was a totally unreliable employee.
I’m marching for my new sisters and fellow endowarriors. There are so many of us, 176 million, probably more. We need the awareness now!
I, like so many others, was told to go on lupron or get pregnant ASAP and that would make the Endo go away. So, menopause or pregnancy, surgery wasn’t even offered! Why wasn’t excision an option? We need gynecologists to learn more about this disease and the only treatment we have that gives any relief, is excision surgery and so far, it’s out of network for insurance. It costs thousands of dollars, more than once, in my case 4 times and it’s still not all gone (that’s another post).
I’m looking forward to creating more awareness for all of us. I’m looking forward to meeting my new friends and sisters who have been through the same or worse because of endometriosis. I hate that it took my fertility away from me, but I consider myself lucky because I rarely got my period as a teenager and because it was so irregular (and heavy), I was put on the birth control pill. Looking back I still had random pains that came and went. I was on the pill for over 15 years.
Let’s stand together in this fight! Join me and so many others to find a cure.
Endometriosis: Time to end the silence!

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About our last embryo

I have Endometriosis, Adenomyosis and Hashimoto's Thyroiditis. I've had Lyme, Bell's Palsy and the Shingles before I was 25. I've done IVF twice, with and without immunosuppression and FET. I am married to my best friend and I am Infertile.
This entry was posted in Endometriosis, endometriosis awareness, endometriosis diet, excision surgery for endometriosis, hope and love, infertility, invisible illness, laparoscopy, laparotomy/c-section scar, positive thinking and tagged , , , . Bookmark the permalink.

3 Responses to Bloggers Unite: What EndoMarch 2014 means to me personally

  1. Amen! Endometriosis is a nightmare. It needs a cure!

  2. Kimberly says:

    I’m just reading your blog now! I have severe endometriosis, as well. I’m 38 years old. I found out when I was 21 that I had endometriosis when I had such severe pains during my period, it was unbearable. I always had severe pains, but it had become untolerable!! They did a laparoscopy and for the hell of it removed my appendix, too, for no reason except for money I guess. They also did an endometrial scraping at that time. Through the years, and more hospital visits for the excessive pain, I was blatantly told no one would do more surgery unless I was trying to get pregnant because the scar tissue from the surgery can actually cause more pain. My profession as a surical tech, confirmed that!! Which brings us to 2 yrs ago. I was rushed to the ER on New Year’s Eve. I had an endometrioma (chocolate cyst) on my right side. A regular cyst on my left ovary and was trying to get pregnant. I had to wait till Jan 2 to see my Gyn. He scheduled surgery for Jan 26!!! I had to go to my primary doctor to get pain meds because surgery was sooo far off. When he finally did the surgery, he said the size of the chocolate cyst had closed my right Fallopian tube and was not sure if it would reopen. The left Fallopian tube was appened ( in the wrong direction) and he moved it so it was facing correctly. Keep in mind Fallopian tubes are very fragile organs, so by correcting the placement of the left one, he may have rendered it unusable.
    We’ve tried naturally for over two years, unsuccessfully. My husband has been tested and he’s fine.
    We have an appointment with a reproductive endocrinologist, but I am not hopeful. I have pain constantly!! Not just when I have my period. The pain is debilitating and so many people do not understand. My mother had endometriosis and had a hysterectomy because of it at 35, so many doctors I’ve spoken to say it is genetic. But they also say to have children and it will help with the endometriosis. My mother is a perfect example that after having two, it did not help!!!
    I feel your pain and commend you for sharing your personal story with the world. I honestly wish you had a better outcome!! But, after all is said and done, we may end up in the same boat!! I will pray that somehow, someway you’re dream of being a mother comes true; whether it be fostering a child, adoption or some other path God has set out for you.
    Feel free to reply:ikkelly214@live.com.
    Kimberlye

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