I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Friday, February 22, 2008

My Endo "History"

I am really not sure where my story officially begins. I've always had painful periods; I just thought they were a fact of life. In college I decided to go on the pill to help battle my symptoms. Although relieved greatly, I began to suffer from migraines, and eventually had to come off about 9 or 10 years later. In the meantime, I graduated college, began my life, got married, and was living happily ever after.

This takes us to about late fall 2007. I had finally stopped BC in April of 07 (had been on and off for several years prior). In October 2007 I noticed my periods were just getting unbearable. I thought it was just the effects of the BC wearing off, and I dealt with it. November 2007 brought on a myriad of symptoms that eventually put me into a frustrating few months of back and forth between Dr.'s.

It started out with diminished hunger and early satiety; with random "pinpoint" pains in my lower abdomen. I felt swollen and tender. I was poked and prodded and given pills here and there to try to deal with my symptoms. In December a random batch of tests proved positive for a bacteria called HPylori (GI issue), and that was handled all wrong. I should have been sent to a specialist right away. Instead I was treated with some crazy strong antibiotics that sent my poor body into an even bigger mess.

I seemed to be feeling okay after the antibiotics, but had unfortunately developed some pretty harsh heartburn (which I am still currently treating). Around Christmas I started feeling "not right" again. The pains were becoming more and more constant, and I just wasted hungry; and when I ate, it was always "too much" it seemed like.

Between Christmas and New Year's I made it back to my primary care physician's office for yet another visit. Pain, TENDER, just overall feeling of "BLAH"!!! She poked around on my pelvic area and I had a particularly tender area on my right side-SHARP! I was sent in the next day for a CT of the abdomen and Pelvis because of suspected appendicitis.

What was found there sent me finally into to some right directions. After having an allergic reaction to the CT dye (of course, right?) and powering through the procedure as to not have to repeat it, the tests had some revelations. #1 was a 2+inch mass on my ovary with some free fluid in the abdomen. #2 was "colitis". I was immediately referred to both a GI and GYN (I didn't have a good experience with my old one and requested a new one at this discovery).

On the GI end-I went to the office crying. I had lost 10 pounds in a week-I was experiencing severe diarrhea that had started on Jan 1-and this appt was on Jan 6. The diagnosis? Antibiotic induced colitis. Which, ironically it treated with more antibiotics. So, I started that course. The diarrhea subsided but my pain and general ill feeling remained.

Next trip was to the GYN. Still on antibiotics and feeling more and more like crap. I had a vaginal ultrasound which further reviewed the known cyst-an "endometrioma" most likely he said. I had no idea. I looked it up when I got home-learned that was a cyst caused by endometriosis. I had never been diagnosed with that, he must be wrong. I was on a"wait and see" basis in hopes this was merely just a come and go type cyst perhaps. I waited 3 weeks for my follow-up. While in limbo for that came my period. It was AWFUL. I was so scared-it was SO painful; I couldn't find any relief. It exacerbated by GI symptoms, and I was sure it had to do with that; that in combo with this large cyst on my ovary.

My follow-up didn't go as expected-the cyst had grown...a little over 3 inches now. I was having daily pain and throbbing...I felt so run down. We decided that it needed to come and that some exploration was in order. Before surgery was scheduled-another period. This one sent me to the ER. I thought for SURE my ovary was twisting or the cyst was rupturing and I'd be sent to emergency surgery. I had never felt such pain before in my life. I couldn't walk unassisted. That Monday I called the Dr. and begged for relief. He agreed and surgery was set for Weds of that week. I was so nervous, but so excited to have this cyst out and the pain gone. I had my laparscopic procedure on Feb 6th.

And with that surgery...the diagnosis. Endometriosis. My organs were stuck together...there were adhesion removals, peeling apart of organs, cysts drained and cyst walls removed. Antibiotics flushed through as my inflammation was so severe; gyno said although he didn't think the GI has correctly prescribed the previous antibiotics, he felt they helped with the surgery. Not everything could be removed.

2 weeks later was my follow-up, and the full reality of what was going on. I am still in the state of shock and disbelief, and not 100% ready (mentally) to move on. I need to get past my grieving/pissed off at the world feeling before I can do so. Perfectly normal. It has been suggested I start treatment. There are options...I am not sure I like the options. BC, which I know gives me migraines; or, Lurpon, of which I am having a hard time finding good light on (but it's hard to tell...I think there is more negative information out there because more people are apt to post/review something negative that positive a lot of times). I need to do my research and find out what is best for me. But, again, right now I am grieving and dealing with the metal blow that all of this has cause. I am still having underlying GI issues, and trying to get answers and deal with that as well. Related to my endo? Not related? So scary and unknown.

I am blessed to be surrounded by wonderful people, including my family. It's so wonderful to have such a beautiful support system. My husband has been absolutely wonderful during this whole ordeal, and I know he, along with the rest of my friends and family, is standing by me 100%.

1 comment:

Jeanne said...


Thank you for bravely sharing your "endo story". An abbreviated version of my 'endo story" is on my blog under my "bio".

I've had endo for 26 years. I'm 39 years old. My symptoms hit me hard at 13. I suffered for 10 years in semi-silence (long story)!

Thank you for sharing and caring enough to post such insightful, witty, emotional and fantastic posts!!

Be well,