chronic illness

My Hospital Saga – Part 2

Yesterday I headed to Charlotte with my husband for my follow-up visit with my gastroenterologist after my weekend trip to the ER. I wasn’t able to see my primary GI doctor because they wanted me to get in as soon as possible so my appointment was set up with one of his associates so I really wasn’t sure what to expect.

Right off the bat, they ruled out pancreatitis. While I had slightly elevated levels, it was nothing close to what would indicate pancreatitis so we were able to mark that off the list. We next did a brief overview of my medical history. He immediately apologized when I told him about my journey with endo. He said that endometriosis is like the black plague for women. I have never heard a better description. That man deserves a medal.

We went over the blood work taken at the ER and compared it to my blood work done at my previous visit. My liver enzymes are a little up but not anything crazy – just something to keep an eye on. He sent me for more blood work as well as an abdominal xray and then met me back in the office. At my latest EGD, they discovered my gastroparesis. After confirming with the xray, it seems that its not only my stomach that is paralyzed but pretty much my entire GI system. This coupled with existing chronic pelvic pain (endo/adhestions/etc) was probably the source of my severe abdominal pain.

So the plan is to attempt to jump start my GI system with back-to-back bowel preps (I started the 2nd this morning). I will also start a new medicine that will try to help stimulate my system which will help the gastroparesis as well. We also dropped to the two new medications I started last week as they were likely adding to the irritation.  Not sure what that will mean for my pain levels but hopefully once things get moving again I will notice a big difference!

chronic illness

Shifting Gears

Within the next month I will have four doctors appointments if you include the trip to my rheumatologist on Tuesday and if they are all as productive has Tuesday, I will be thrilled.

When I first left my rheum appointment, I cried as I once again felt like we were grasping at straws hoping for anything that might help how I was feeling.  Thankfully for the drive home, it was just me, my thoughts, and God. It was as if God was whispering in my ear to look at the bigger picture and see the positive. Once I did, I was able to see hope for the days ahead (its amazing what happens when you listen!).

The appointment started off like usual going over medications, symptoms, etc. We decided my current treatment was not working so we had some decisions to make and that’s when it happened. He asked me what options I would like to see happen. I was invited to become an active participant in my health care and if you score frequent flyer miles in doctors’ offices like I do you know that is a great thing.

We had always grouped any pain issues with fibromyalgia but had never been able to get a hand on it so I asked if we could back up and start over. I had felt like we were missing something and even though I had bloodwork done not long ago, I asked the possibility of testing a false negative (especially since I am that way with Celiac). He said it was completely possible so we started looking for other options. The joint pain the last two weeks has been pretty bad with Sunday being the worst I’ve felt in a long time joint-wise. I have started to notice some redness and swelling with some of my joints. He did an exam and he felt some swelling of the joints of my hands but not enough to make a definitely diagnosis but enough to keep an eye on.

So the new treatment plan involves two new medications – one to help with the muscle aches and pains of fibromylgia (with the added bonus of helping me sleep and possibly helping my gastroparesis) and the other is an anti-inflammatory to help the swelling and irritation of my joints.

Its only been a couple days but I am feeling really positive. I love the fact that I was able to be an active partner in deciding my health care. I felt that he not only was listening to what I was saying but that he also heard what I was saying. That is one of the best feelings in the world as a spoonie!

Now to hope my next three appointments go as well!

bloggingchronic illness

Blogging for Endo Awareness: An Alternative Treatment

I cannot believe it is already the last week of Blogging for Endometriosis Awareness 2012! I am most definitely hoping this becomes an annual event!


We’ve spent the last couple weeks sharing our stories about how endometriosis has affected us mentally and physically as well as talking about infertility but we would love to end the campaign on a more positive note and share some strategies to cope with this awful disease.


In the last eight years I have tried just about everything to find a way to cope with the effects of endo – surgeries, every kind of birth control you can imagine, changing my diet, herbs, even some off-label treatments in hopes that something would help. Some things worked ok where others did not. I had a lot of success with the birth control patch but obviously if you are hoping to get pregnant it takes it out of the pain relief equation. Most of my surgeries have provided at least some short term relief, even the one performed by the specialists in Atlanta. However, I won’t waste your time today telling you want hasn’t worked for me but instead offer an option that we’ve just recently tried: pelvic floor physical therapy.


It sounds scary, I know but if you can find the right physical therapist it may be worth a shot. My PT specializes in this type of physical therapy and is very knowledgeable about endometriosis as well as other pelvic issues. She explained that as the body is trying to protect itself, for example from endo, the muscles will lock down which will in turn cause more pain so the muscles lock down even further. Its a vicious cycle and one of the reasons women struggle with the unspoken side effect of endo.


On my way to my first PT appointment I was more than a little nervous as I had no idea what to expect. Because of the amount of doctors appointments I’ve been to and all of the fertility treatments we’d done, my modesty went out the window a while ago. Between being highly recommended by my doctor and knowing pelvic floor PT is all she did, I felt a little more at ease.


The initial evaluation was done in two visits. The external evaluation included checking out the lower back and hip muscles (which she found were very, very tight). The internal evaluation involved checking the pelvic floor muscles. A lot of women see a PT because the need to strengthen those muscles to have better bladder control but in my case, the PT would involved getting those muscles to relax.


Following treatments were focused on working to get these muscles relax and included stretches, deep muscle massage, and trigger point therapy. I will not lie. The first month of therapy was excruciating because everything was so tight. Many sessions I left in tears or sick to my stomach. But as time has gone on, I have gotten to the point where I can see the results. I’m still having some pelvic pain but its not quite the same as it was when I first started and I can tell a big difference in marital activities.


I wanted to share my experience with pelvic floor PT as a pain treatment option that didn’t include surgery or medications. I think its is a treatment option that is not regularly tied with endometriosis but as all of the lower back, lower abdominal, and hp muscles work extremely close together, it is a viable option that you may want to consider.


If you have any specific questions, please ask! I’m an open book!


Be sure to check out the other posts with coping tips!



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