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Our Endo Experiences

Our Endo stories, diagnosis, treatments, procedures, remedies etc.

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  #1  
July 28th, 2009, 05:20 AM
angel3y35's Avatar Mega Super Mommy
Join Date: May 2009
Posts: 2,810
To start with my hubby is the most amazing thing to ever happen to me. Finding out I had endo was horrible. The more I read about it the more I came to realize there was a good possibility I would never be able to have kids of my own. I just knew that no man would want me when he found out. I even told guys on about the 5th date that there was a chance I couldn't. I just didn't want things to go further and fall in love with some guy who couldn't take it. I had also given up on finding that guy. My grandfather died in August of 2005. He slipped into a coma for a few days and miraculously woke up for a little while. The first thing he did was ask for me so I rushed to the hospital. When I got there I was warned that he was out of it and didn't know anybody. I went in his room and he remembered me. It was just me and my dad in there with him. He grabbed my hand and told me not to take crap from any man and not to give up. He said God told him there was someone for me and that I would find him soon. I met Matt in December of that same year. We married August 19th 2006 that same day the year before was when we buried my grandfather. I thought it was the perfect date. Matt doesn't care if I can't give him children just that it hurts me that I might not be able to.

So enough of how perfect DH is for me. I started my period when I was 12. I remember being 13 and curled up in the backseat of the car on the way to the beach with my family in tears because of the pain. Between the ages of 13 and 18 the pain wasn't that bad. I had a lot of stomach problems but didn't think anything about it. Once I turned 18 though the pain was horrible. The GYN on campus at college just gave me shots for the pain and pain medicine. After about a year she decided that I had PID and made me take antibiotics through the IV two days in a row. They were horrible. Apparently they make you feel like chemo but luckily only for a few hours. Then a few months later at 7 o'clock on a Saturday morning I get a call from her saying "your pap smear was abnormal you might have cancer". That was it. You don't tell any that but especially a 19 year old kid away from home. She referred me to another OBGYN who did a biopsy. I'll never forget her words either, "this is going to hurt. You're going to want to kick me in the head but don't" I've had two biopsies done. I also had whatever it's called where they use a microscope to look in you.

Finally I found a doc who agreed to do a lap. He found 5 spots of endo on my right ovary, some in the cul de sac and my bowl was attached to something else. A few months after the surgery the pain came back to he recommended Lupron. I was on that for 18 months. The first period after I stopped it was horrible but the doctor didn't think the endo could be back so he sent me to a urologist who found nothing. Then I went to a gastro doc who did a colonoscopy and the one where they put the camera down your throat. All he found was acid reflux and IBS. He put me on depo which didn't really help. I decided to see another doc in his practice who agreed to do another lap and removed more endo. I stayed on the depo until about 18 months ago. I swapped to the Nuva ring then and stopped it last November. We've been TTC since then. Last month I had fertility testing done and am now waiting on an appointment with a fertility specialist for yet another lap to remove endo on the right side, an adhesion on the right side, and a giant mass surrounding my left tube and part of my left ovary.

I'm sorry this was so long and congrats if you made it through it.
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Our adoption miracle born 12/31/13


06/2004 - Lap for endo and cysts
08/2006 - Lap for endo and cysts
02/2010 - Lap for endo, cysts, and hydrosalpinx repair
02/2011 - Lap for endo, cysts, and RSO
12/2011 - TAH and LSO
5/2012 - Lap for adhesions
4/2013 - Lap for adhesions
Stage IV endometriosis, sever adenomyosis, PCOS, IC
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  #2  
July 28th, 2009, 01:28 PM
Misty_X's Avatar Platinum Supermommy
Join Date: Mar 2008
Location: UK
Posts: 25,063
Thank you for sharing, Paige - I know it's really hard to write this kind of thing out (because it makes it 'real', if that makes sense)

I really hope you get your appointment through soon, honey x x
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