Its time for check-in #1 for the Burst into Summer Challenge over at the Sisterhood!
This week’s mini-challenge was water consumption. I didn’t get off to a great start but definitely made some big changes the last two days! I bought a new water bottle that has a dial to track refills to keep you motivated to keep drinking! The best part is that now Abby is asking for water to drink! Score!
Because of the pain and flare, I haven’t been able to join in the bootcamp class or any exercising. Merely walking during the day is a workout at the moment. The substitute meds haven’t been working and the endo flare has me extremely bloated. All of my measurements are exactly the same except for my waist which is up almost an inch thanks to bloat. Fabulous. But I’m not changing my stats for that since I know it will go down in a couple days.
But I did hop on the scale and it said….
I lost 0.8lbs which isn’t much but a great start in the right direction! If I keep up the water and keep ditching the soda, hopefully I’ll see the number drop even more!
So here are my stats:
Change: -0.8lbs/no inches
2 years ago around 8:30am, my husband walked into my office with a half-dozen pink roses and said, “Let’s go get our daughter!” After my heart started beating again, I said, “Are you serious?!?” He shook his head and I just started bawling (kind of like I am know as I’m typing this). Once I regained my composure, I asked him again, “We’ve got a daughter?” We had been waiting 8 long weeks for that phone call! I think I packed up my belongings at work in a minute flat and we headed out the door! I picked up the phone to call my parents and could barely get through telling them the good news! All of the pain and heartache was pushed away in that moment. The second she was placed in our arms, we realized that she was everything that we had been waiting for!
Family Day 2010
Wow has time flown the last 2 years! We cannot wait to celebrate Family Day when Hubs returns home from camp! Of course there will be pictures to come!
Friday’s doctors appointment was very enlightening! I feel very positive moving forward from this point which is a feeling that I haven’t had lately!
We went back through all of my surgical history (my file is crazy think – I’m surprised she doesn’t have to wheelbarrow it in!). We covered all of my symptoms. We looked a pictures from my hysterectomy and then a light bulb went off. She goes back through the surgery reports and pulls out her iPhone to pull up some information. She asked me if my pain seems to come in cycles. I told her that if I didn’t know better I would swear that I was still ovulating because once a month I get pain right around where my ovaries would be. And it clicked.
Ovarian Remnant Syndrome.
The basic description of ORS is when ovarian tissue is left behind after removal of the ovaries and function like ovaries secreting hormones as well as creating cysts. In my case, both of my ovaries were bound with scar tissue to my ureters (the tubes that carry urine from kidneys to bladder). My left ovary was swollen to almost the size of my uterus. Because of size and scar tissue, my doctor had to be very careful removing them as while she needed to be sure to get as much tissue as possible, she also had to be certain not to damage my ureters (which was a major reason my hysterectomy had to do be abdominally (open incision) versus laparoscopically). Because of these conditions, she believes its quite possible that tissue was left behind.
Here is our plan:
1- Test hormone levels (done on Friday): My FSH and estradiol levels should be that of a menopausal woman but if they come back in the normal range of a 29 year old that means there is most definitely something left behind.
2- Have an MRI to confirm the presence and location of ovarian tissue: I would be given a stimulant like Clomid to hyper-stimulate the tissue to make it apparent on the MRI for confirmation purposes. I’m not even going to imagine how uncomfortable that is going to be.
3- Make a decision: At this point I would have three options – 1) pain management and track tissue to make sure it doesn’t spread; 2) take a suppression drug like Lupron to keep the tissue from creating estrogen; or 3) have surgery to remove the tissue completely (which in my case would be an open incision requiring at least a 6 week recovery).
I’ve got some time before I have to make a decision since we still haven’t confirmed anything. And while I don’t care for any of the options really, the fact that we may finally have an answer to my continued pain gives me open. If I had to choose what I would do today, I would say surgery as I want to put all of this behind me and move on!
I should have the results of the blood work the beginning of next week! The wait will be tough especially as I’m in the middle of a flare and unfortunately my replacement IC meds are not working as well as we’d hoped and pain levels are pretty high. Thankfully my mom is in town for the week helping me take care of Abby! But I am holding onto hope at this point!