Evolution of Bloating

Bloat. Its one of those fun possible “bonus-features” that can come with endo. I believe it’s considered a result of the inflammatory response to the aberrant tissue. With the increased pelvic pain over the past year, I’ve had increased abdominal bloating.

Below is a chronological look at my bloating, complete with pictures- some of my uncovered abdomen. I’ve put it beneath the break, in case it is something you don’t want to see.

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Dr. Y

I just got a phone call. I was expecting it to be about scheduling my surgery. Instead I find out Dr. Y has left the practice (remember, we were just there on the 9th- had no clue). The nice lady on the phone said I could go back to my referring GYN or see another doctor there since “it’s just a simple surgery.” Ha. I said I’ll go back to my GYN to regroup.

I don’t know what to do now.

Not a phone call you want to get a work… on a bad pain and bowel day… I just have to hold it together for a few more hours and then … then I’m not sure what to do next.

Aromatase Inhibitor Part 2

A short follow up to my aromatase inhibitor post.

I have been able to do a lot more around the house, like actually doing dishes. And this ability has made me feel a lot better, because I don’t feel like I’m being such a burden on A. I get to feel like I am actually being a contributing member of my household, even if I do have to recuperate after helping out.

I may have been giving the aromatase inhibitor credit for this- decreasing my fatigue even though it’s only mildly affected my pain; I realized the however, that the effect of pills have been confounded with the end of the semester and beginning of summer. It’s hard to say which is the contributing factor, or-if they both are-to what degree. I am fairly certain that the semester being over is likely the reason I am able to do more around the house. Almost all of my energy and effort goes into school during the semester- which means the vast majority of my daily spoons go into school; now that it is summer, I’ve been able to use those spoons around the house.

So, in connecting with my previous analogy, while the aromatase inhibitor has given me more warm days in winter, I have to wonder how much of those warm days are also a result of the end of the school year too (or instead).

*If you aren’t familiar with spoons, and spoon theory check out the link under Resources.

Aromatase Inhibitor Update

I have my second appointment with Dr. Y on Monday. This time won’t just be a consult; there will be an ultrasound and pelvic exam. And we will be discussing how the aromatase inhibitor (Letrozole) with progesterone (norethindrone acetate) has been going.

I’ve been on the new pills since May 14th. That makes just over 3 weeks that I’ve been on them.

I was trying to describe how I’ve felt while on them to A last night. I think they’ve done some to help, but a lot not to as well. I told A last night, that the when the pain is low, I feel better than I have in a while- less fatigued, less uncomfortable; the pain is still there, but I feel better. I can do more around the house- do the dishes, make dinner, clean the house… things I had struggled with before.
Despite feeling better on the low pain days, there are still plenty of high pain days; that pain is severe or very severe, and sharp- usually tugging too.

I went and checked my Catch My Pain graph today to see the pain levels I reported over the three week period.

PainIntensty_May14-June6

As you can see, there are are more points below 5 than there are above 6, but the pain is still up and down.

I also wanted to see if the pills had made noticeable difference in my overall pain levels. I found this graph to be the most interesting. I wasn’t expecting the results, given that I’ve been feeling better. You can clearly see how the pain has been increasing over time. There haven’t been any really low, or no, pain days since late April/ early May. And still plenty of high pain peaks. So even though I have been feeling better my pain hasn’t actually gotten any better- at least not on average.

PainIntenstyOverall

 

 

I’ve been trying to come up with a decent analogy, to how the pills have made me feel, and I think I have come up with a successful one:

Being chronically ill is like been like being in the thralls of winter.

In the winter the low temperature where I live in the blue ridge mountains averages 24 Fahrenheit; the high averages 45 Fahrenheit. On bad days, the wind is fierce, and there may be an accumulation of snow and ice. On good days, the air is still, despite it still being cold it isn’t biting.

Then polar vortex blows through and gives some -11 Fahrenheit days with cutting wind. And those days absolutely suck; you can’t be outside for long without fear of frostbite on any exposed skin, so you bundle up and get inside as soon as possible. Even inside you have to bundle up because your heater can’t keep up.

As spring approaches there are some warm days, maybe 50 Fahrenheit; if it was summer you would think that was cold, but since the weather has been so frigid, that 50 Fahrenheit is wonderful. You shed some of your thick winter layers,  and actually enjoy some time outside. When the weather switches back and dumps a few inches of snow with whipping wind- and you’re back to bundling up,or it drops back below freezing over night, it doesn’t seem quite so bad.

The pills have given me those 50 Fahrenheit days. Before, it was just days of cold and wind that I managed to get through. Even when the the temperatures were bit warmer, the wind was biting and it was hard to be outside. Now, I get to enjoy just a little bit of warmth- a small reminder of what it was like not to be winter. And those 50 Fahrenheit moments help me get through the times where it once again drops below freezing. And the wind has died down; even when it is cold outside, the wind isn’t biting at me, so the cold doesn’t seem quite as bad.

With the aromatase inhibitor and progesterone, it’s still winter, and the polar vortex still rears its ugly head. And while those 50 Fahrenheit days are nice, I don’t think they’re enough. I think it’s time to discuss excision, and hopefully move into spring.

 

*Note: As far as actual seasons go I love winter. I actually hate summer- it’s too hot, and makes me feel awful. But winter makes a much more apt analogy.