Dr. Mangal walks into the exam room where my mom and I are sitting and just says, “Oh, Erin…Well, it wasn’t what we thought.”
That is not what you want to hear from your surgeon.
He sits down next to me and draws my reproductive system and then starts showing me where the endo is and what it has done with all this unsupervised time. When he finishes, I can’t even see the organs anymore.
In a nutshell, Stage IV looks like this:
- Endo on my colon, which is stuck to the bottom part of my uterus (hence the sharp rectal pain that is common in women with endo)
- Appendix covered with endo and curved like a hockey stick (he will remove this)
- Endo on my ureters
- Endo on both ovaries
- Chocolate cyst on left ovary that is pulling my organs toward it like a black hole
- Endo on my bladder
- Endo on my uterus
- Endo on my bowel/intestines
“Once I got in there and saw how bad it was, I just thought ‘How was she walking around like this?’”
There is such bitter sweetness in hearing that I wasn’t making any of this up, nor was I bipolar (one doctor’s suggestion) nor was it just a severe Vitamin D deficiency. My shit was effed, and I knew it. And Dr. Mangal confirmed. Just in time too, since I was on the verge of a mental breakdown because of this. I do not say that lightly. I’ll get more into the emotional side of endo in future posts, but the thought had crossed my mind that if things didn’t improve I would soon be institutionalized. It was taking that much of a toll.
So, now I have to travel down the worst-case scenario path. Lupron shot therapy for 3 months, continuous birth control and the big surgery scheduled for July 8, or what Dr. Mangal refers to as “the bulldozer”. He said it will be like having a c-section. There will be 2 other surgeons operating on me (urologist, colo-rectal), and the surgery will take 5-6 hours in order to get all the endo, and put my sticky, displaced organs back where they belong. Recovery is 4-6 weeks minimum.
I have a colo-rectal surgeon since my colon is stuck to my uterus. This is the cause of massive amounts of pain for me. Dr. Mangal explained that they will have to “unglue” it, and examine the damage. If it’s really bad, they will cut part of my colon out and fuse the two ends together. Gulp. Risks with that kind of surgery? Leakage. Isn’t that just the most awful word? Leakage. If that happens, it would cause a serious infection and then my death. So we don’t want that.
Am I scared of this surgery? Terrified.
I’m also excited that this could be the key to a brand new life I’ve never experienced. A pain free life!!! That’s an overwhelming amount of freedom, to no longer be a slave to pain.
I asked him if I was a really bad case and if he had operated on women who were worse off than me. If you know anything about Dr. Mangal, then you would laugh at this question. It’s like making sure God’s got everything covered. This is THE endo guy. He has patients from Colorado to Brasil fly in to operate on them.
“Oh you’re not even that bad,” he said, “Even though you’re stage IV, I’d say you’re about a 4 or 5 on that scale.” That was a huge relief. Dr. Mangal has this wonderfully soothing bedside manner, and this humble confidence about him that makes you feel like everything will be okay.
His nurse gives me the names of the 3 additional doctors that I need to see before July 8th and then we’re out of there. The whole appointment with Mangal took probably 15 minutes.