Sunday, March 3, 2013

Endometriosis Month: The Physical Side

Once again, the ever-amazing Jamee has organized a Blogging for Endometriosis Month.  I am hoping to join in, but resolve to do what I can and be accepting of that.  Which is, actually, a key lesson for anyone facing a chronic illness.  My life is not the same as before and, the truth of the matter is, it may never be.


As an initial move, perhaps cheating, perhaps energy-saving, I am linking you to my post from last year on endo's physical side.  For more details on endo generally, check out one of a very small number advocacy sites for their explanation (with diagrams) of the condition. One last "pimp my blog to folks already on my blog" note, the is my story for Fight Like a Girl, a group for women fighting life-threatening and/or life-altering conditions.  It is largely focused on how long I waited to speak up about the increasing problems I was having and the eventual endo diagnosis.

Over the past twelve months, the problems related to my back have compounded.  Details are for another post, but the back pain has led to a tough medication regimen including one scheduled pai med and one unscheduled (I can have 0-3, most days I have 2.....I experimented with 0 yesterday and spent today regretting it and back in the stare at the ceiling mode).  Endo has not been at the forefront of my mind, and the medication regime for the back is absolutely also helping control endo-related pain.

BUT, that doesn't mean the endo is gone.  That's the thing about chronic diseases, they linger.  They sit there, at times in the background, ready to pounce at any moment.  Every few days it pops up for notice, despite the fact that I'm on enough pain meds to kill some people.  At one point, I missed two doses of the BCP in a row (I take continuous birth control, no placebo week, it helps keep my hormones steadier and limits the endo symptoms, I do not get periods).  Two tiny missed pills led to days in fetal position (spotting too, for those who care to know....).  The error led to endo pain that "beat" the back pain....and there's rarely a day the back doesn't hit an 8 on the pain scale (1-10. 1 is no pain, 10 is the worst possible).

So, for me, endo is currently a lurker.  It is waiting to bite if my hormones shift (even being around other women long enough confuses my pheromones and can cause spotting or some pain).  It is waiting to bite if (no, let's go with WHEN) I stop using the pain meds for my back.  And I remember all too well the days it took my words and knocked me off my feet and left my crying on the floor.  It comes and goes, and I am pretty certain there will be more fetal position days to come, and days spent educating people who say I look perfectly fine.  That's life with endo. 

(NOTE: I am not having luck with the Blogger Link-Up button, but check out Jamee's blog for her post and link to other bloggers participating in a group effort to spread knowledge about endo and its impact.)

4 comments:

Jamee @ A New Kind of Normal said...

I think the awful thing about managing multiple illnesses is trying to balance them all. When you think you have one in check, the other bites you. It feels like I never ending cycle! When I had surgery last summer, it finally took care of some of the abdomenal pain but it kicked in a MAJOR fibro flare that took weeks to kick. And who wants to be on pain meds all the time? I hate that anyone has to deal with endometriosis or any other illness but I am so glad to have crossed paths with so many amazing women who can support and encourage one another!

Alison said...

I also have an unrelated back injury. And my pain meds, obviously, also help with the endo pain, but not with the headaches. If I miss one birth control pill, I get a migraine, so I really miss Nuvaring, but it was not at all effective after 6 months. The best thing to do is to get continual therapy for both conditions - physical therapy, one pain management doc for both conditions, and an OB/GYN. With once a month checkups until your pain is controlled enough that you can live a semi-regular life. If you need help or advice, you can email me at zephaerie1@gmail.com

Diane said...

Thanks for sharing your story and stopping by my blog, too. I think it's rare to find anyone with Endo who doesn't also suffer from another chronic disease. So sorry you are dealing with back issues too.

Letecia Benjamin said...

I was diagnosised in 1996 after suffering a miscarriage. I have had countless laposcropic surgeries, mymfallopian tubes removed, 6 months of Lipton shots and countless attempts at different birth controls. I am currently using seanique and have had only a few side effects. But I have suffered from weight gain, mood swings, and uncontrollable bleeding. My current endocrinologist is great at asking me what options do I want to explore.