Here is a detailed story of delayed diagnosis, months of pain and distress, near death experience, but finally through self-exploration, this endo warrior found her own causes of her endo pain and how she overcome her pain and distress.
'I've been an endometriosis sufferer for over 8 years although I didn't realize I had endo until my health went downhill almost to the point of dying a few years ago when I was 43. I know this is long but let me give you a little history.
I live in the US and have 2 sons & just recently remarried to a wonderful, supportive husband!!! I don't know what I would've done without him these past few years! I have always been healthy & very active in aerobics or lifting weights (was a cheerleader all through school & even in college.)
About 5 years ago, I had a problem having bowel movements. I've never been one to go EVERY day so when I wouldn't go for several days, it didn't alarm me at all. But when it got to where I still hadn't gone after a week, it began to worry me. My stomach started swelling & the pain was pretty bad.
I went to the E.R. & after telling me I was severely dehydrated; they gave me potassium through an IV & said I just needed to drink more water & probably wouldn't have that problem again. (I was a HUGE coffee drinker... drank it all day long!) It was the first time I ever heard about IBS, too, as that is what they thought I had.
Skip forward to when I was 43. I will note here I had the 10-year IUD put in for birth control, but it was HORRIBLE. I cramped severely & bled all the time for nearly 6 months before my new OB-GYN changed it out to the 5-year Mirena IUD. It took about 6 months but my bleeding finally stopped!
Off & on, I'd still have the same problem as before with my BM's, but this time, it was so bad, they did a CT scan on me & said I had a twist in my small intestine. Told me to drink lots of water & it would probably correct itself. Sent me home.
But then the pain got really bad, went to the E.R. after about a week & they said my potassium was "bottomed out", said they needed to hydrate me & put a tube down my nose to feed me because I couldn't eat or drink anything without throwing up. This time, I was admitted into the hospital. I stayed about 4 days when they finally sent me home. Still didn't know what was going on with me, but promised to go see a GI doctor.
A few months went by & I wasn't feeling too bad so, of course, I put off the GI doctor & hoped maybe I was doing better. But later I couldn't have a BM & that lasted about 3 weeks before I got in to finally see the doctor. They ran all sorts of tests, including a Crohn's test, but it came back negative. From all the tests, it showed me being absolutely normal!
Then I had my first colonoscopy & boy was that prep horrible (the prep didn't work very well but really made me cramp so bad... they even tried one of those water enemas, too... didn't work.) But they went ahead & did the colonoscopy anyway which ended up showing my appendix as being really inflamed.
I was at my appointment with my GI doc the next week when I could barely sit down. I wasn't able to eat, drink or poop. I was so miserable & my stomach was distended so much that I looked like I was 5 months pregnant. So he told me go straight to the hospital & he was going to admit me that night. He said they would probably have to do exploratory surgery to find the problem.
After being admitted, they tried doing a molasses enema on me & that didn't work either. I was in BAD, BAD shape. At this point, they inserted a PIC line so they wouldn't have to keep poking me so much. They finally had me hydrated enough to try the surgery about 5 days later.
When I came to, I found out I had endometriosis & 2" of my small intestine removed. I also learned that if they'd waited one more day to do surgery, my intestines would've probably ruptured. But then, within about 6 days, my staples under my belly button began leaking so I knew something was wrong.
Surgeon came back in & removed 8 of the 15 staples which left me with a big open wound (thank goodness it wasn't staph). X-rays revealed a grapefruit-sized abscess near the spot where my intestines were removed so I was put on more antibiotics & they inserted a tube to drain the abscess. I was still in quite a bit of pain so that explained why!!!
When I finally was able to go home, I'd been in the hospital a full month!! I was then taken care of at home by a home health nurse for nearly 2 months because I now had a wound vac to help heal the incision that had been opened. I was never so happy when I could finally be rid of that thing & could walk around the house without hauling it every place I went.
Oh & I forgot to mention, during this whole ordeal, I lost down to 87 lbs. I looked like skin & bones... was horrible. What little boobs I had disappeared & so did my hiney!! Oh I looked so terrible! After this, I ended up getting a hernia so back in the hospital I went but this time around, I did great! Piece of cake after everything else I'd been through.
I healed up great & life went on... but I really just never did feel "normal" again. Still had bloating & couldn't have BM's but I found an herbal tea that would help. I've felt overall that my health was just bad. I started a new job 2 months after my first surgery (how I did that, I have NO idea, but I did.)
Now fast forward to this past Thanksgiving when I had a horrible flare-up again. It was so bad I couldn't keep any food down for a few days. Luckily, I have a job where I can work from home if I need to & have a very understanding boss so that's what I did. I worked from home until the Christmas holidays were over.
During that time, I had a CT-scan, a bowel follow-through, & another colonoscopy (luckily, this time, the prep was NO problem at all.) YAY!!! This gave me lots of time to really think about all that had happened. I wondered what could've triggered the endo so bad?
And THEN... it was like a light bulb went off in my head! In the past 2 or 3 years, whenever I'm starting to ovulate, I notice I have a dull ache on my lower right side. Well, 2 days before Thanksgiving, I felt that pain once again. And I thought about everything I'd eaten that day. I had turkey, ham, some sweet potatoes, broccoli & rice casserole, yeast rolls, crackers & cheese and two big glasses of beer mixed with Zing Zang (spicy tomato juice.)
So then I started remembering how I couldn't eat chicken & dumplings anymore (hmm... possibly the wheat flour??).. crackers are made of wheat.. then the yeast rolls (once again, wheat!) At that point, since the doctor had already had me on just liquids, I started adding things back into my diet to test my theory.
I was on a quest to do something about this because I was sick & tired of being sick & tired!!!! What did I find out? I am allergic to gluten AND wheat!!!! At that point, I read somewhere about Vitamin D3 so I did some deep research on that & then I went & bought it (2,000 IU) & some raw probiotics (the kind you keep in the fridge) & the Alive for Women multi-vitamin (has fruits & veggies in it) from the health food store.
After all the research about D3, I had so much HOPE cause it all made perfect sense to me! After about a week, I bumped my D3 up to 2 a day. Oh.. and have to say, too, that I no longer drink coffee.
I know it's only been less than a month since I've started figuring out all these things, but I feel AMAZING!!!! I have no more pain, no more bloating, I'm not so tired all the time, and, for the first time since way before my surgery, my tummy is back to feeling completely NORMAL!!!!
This is a long story, but I really wanted others to see how very bad it's been for me these past few years & that there is hope for each of you, too!