A little about my endo story:
I am 25, and I just had my 5th laparoscopy for 4th stage Endo on July 6th, 2012.
It's suspected I've suffered from Endo since I started mensing when I was 13, it wasn't until I was 17 that I had my first outpatient diagnostic laparoscopy and my gynecologist told me I had stage 4 Endometriosis, the worst she had seen in a girl my age, and that was the first time she talked to me about a hysterectomy. I refused because I wanted, and still do, to try having my own children. Since then I have had 3 more outpatient laps, by the same doctor I still have today, and one emergency overnight lap in between those, at the ER, when a cyst burst and they thought I was bleeding out.
Along with surgical treatment I have also done birth control, and a brief, unfinished Lupron treatment, which I had to stop because it made me so sick.
Tried conceiving with my ex husband for a few years with no luck, even though my fallopian tubes were clear.
I have had very few complications with any laps so far, i have had to have my appendix and bladder cleaned before, that wasn't a big deal, but this time, this time was different....
I learned from my boyfriend, and my dad, who had taken me for my surgery, and taken me home, that this time there were major complications.
Apparently my doctor told them..
That I was still going to be in pain after the surgery because..
My endo was "impressive", in the worst meaning possible.
She could not finish cleaning out the endo because it was too dangerous.
She said I was too inflamed and bleeding every time she touched something so she chose to stop.
I was going to have to go back on Lupron. Which I told her I only would do if it was extreme.
Obviously.. It was.
ALSO she told them, vaguely, and showed them, two "tube like holes" in my abdomen.
"Caused by the endo" is all she told them.
One is "sucking in" my fallopian tubes, and the other is apparently "sucking in" my intestines.
That I was going to need another, more invasive surgery, by another specialist.
Now I have done some "self diagnosing" as everyone who has told me not to do it has called it.
I call it Googling.
And the closest thing I can find to what they were told is that they might be adhesions.
I am scared out of my wits because of my "self diagnosing" and the things I found.
I don't have my post-op until August 2nd, and I tried calling my doctor to ask questions but she is on vacation.....
I tend to take a long time to fully recover after my laps, i'm going into my second week and i'm still weak and in pain, plus i am starting to get new pains, i think my regular cycle pains are starting too. and the migrainneess. fml.
Has anyone else had problems with endo, adhesions, and intestines?
Any input would really help. I have no one to talk to about this.
Everyone else is so calm about it like it's not a big problem.
When I hear I am going to NEED a more invasive surgery, by another doctor.. I think.. wtf.
Maybe it's just me worrying because I haven't heard everything yet, or because it's my body, but still..
Yes I too had Stage IV endo so bad that everything was stuck together behind my uterus. I had a rectovaginal cyst as well. I still have bowel issues and I am going for another surgery in December. It is a combination I think of Endo and Adhesions, but more Adhesions I think.
Is the surgeon doing your surgeries a specialist in this disease?
Do you live in Canada or the US? Are you too far away to see Dr,Redwine? I think if you have had that many surgeries the person was not skilled enough to do them. Do you know if they excised the Endo or did they use Laser?
Check out the wurn technique on the Clear Passage website and see if you are close enough to see someone in his many locations across the US.
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