Professional Patient

The Flexibility to Think Differently

One thing that chronic illness has blessed me with - the freedom and flexibility to look for solutions that fall outside of what's "normal".

It's really NOT fun when, early in a chronic illness, you have no choice but to find new solutions. Too tired to work 40 hours per week? Part time will have to do. Too tired and sore to take that rock-climbing vacation? A stay-cation is the only alternative on short notice. Can't bend down to pick up your child? Time to sit on the floor with them. No one likes having to make these choices, especially when we feel like our illness is forcing them on us.

However, with years of practice, I think this experience teaches us to constantly problem-solve. And to think "outside the box" (sometimes, just out of sheer desperation). And to bounce back after any kind of short-term failure (if solution A doesn't work as we hoped, we have to dig in and find solution B, C, D...) That's how I have wound up being the auntie who sits on the floor with toddlers (my arms can't pick them up), adding wide-angle side mirrors to my car, and only working 3 days per week (and no more than 6 hours per day). 

This mindset is helping me think through two major problems right now: getting pregnant (no luck so far), and trying to vacation the way my husband likes to (spending 12 to 16 hours per day sightseeing, mostly on foot). To solve the pregnancy problem, I could try somewhat standard solutions like IVF. Or I could adopt. But I've also considered slightly stranger options: using a surrogate or trying herbal medicine and acupuncture. To help my husband vacation without me slowing him down, I could get a motorized mobility scooter (it would help some), or better yet, we could start traveling with other friends or family as part of a group - so there's always someone ready to go pound the pavement with my husband (even if I am still in the hotel, sleeping). I would never have been as open to either of those solutions if illness had not been in my life, forcing me to try, try again. 

Endometriosis Recovery

In January, I learned that I had several "complex" ovarian cysts (see related post). I rushed to a gynecological oncologist to find out what was going on. She recommended surgery to remove the cysts - they aren't supposed to be there, so why hang on to them? And there is always a chance that ovarian cysts can be cancerous - even in premenopausal women. 

So on March 1, I had a laparoscopic surgery to remove my cysts. Once the doctor started the surgery, she discovered what looked like stray endometrial tissue (which normally lines your uterus) here, there, and everywhere. So she removed all of that... plus my three ovarian cysts (one of which had grown to the size of a golf ball - and was starting to stick to my bowels). 

The removed tissue was sent to a pathologist for analysis, and I received my diagnosis: endometriosis, not cancer. 

Endometriosis is a condition that occurs when tissue from your uterus somehow escapes its home and lands in your pelvis or on your ovaries and fallopian tubes. (This picture from MayoClinic.com is a great illustration of what endometriosis looks like once it is established.) The tissue grows and shrinks in sync with your regular menstrual cycle, bleeding each month. This can cause scarring over time - called adhesions - that can damage your ovaries and fallopian tubes and can cause problems with other organs. (Endometrial tissue is very sticky, and "sticks" to other things inside you. Adhesions are more like cement or strong velcro - with the same kind of effect). 

Endometriosis can be very painful, although in some women, the pain is very mild. For at least a year before my diagnosis, my periods had gotten quite painful - sharp pain near my ovaries, and tons of low back pain plus severe cramps. 

I hoped the removal of the endometrial tissue and cysts would make me feel better, but so far, I feel worse - more pain before and during my period. Yuck. According to the Center for Endometriosis Care, "Pain after surgery - what you can expect", this is normal - the first cycle after surgery can be very painful, as your body works to heal over the places where the endometrial tissue was removed. The site suggests that 12 weeks is the typical time frame for feeling "totally better" after surgery, although some patients report recovering in a much longer period of time - up to one year.

As part of my post-surgery follow-up, I had an ultrasound done (about 6 weeks post-surgery) to see how things looked. To my dismay, I have two NEW cysts. How is this possible?? Is my endometriosis back? According to the Center for Endometriosis Care, "Is my endometriosis coming back?" new cysts after surgery are not entirely unusual - they may be part of your ovaries' recovery process. If you still have cysts more than 6 months after surgery, then it's time to worry.