Endo Mythbusters – Q&A with Dr. Cook and Libby Hopton

I haven’t done much for endo awareness this month, but I want to make sure I shared this video with all of you. It is very informative, and a great opportunity to hear from Dr. Cook- and endo surgeon and specialist at Vital Health Institute, and Libby Hopton- who runs EndoMetropolis on Facebook and conducts endo treatment research with Vital Health Institute.

I also want to share a blog post written by Libby Hopton in 2013: What I Wish Everyone Knew About Endometriosis.
I have a couple of blog posts I really want to write, one about my current pain, depression, and overall health; and one about intrusive. and frankly frightening, thoughts I’ve experienced when changing my dose of amitriptyline. Hopefully in the next few weeks I’ll have time to work on those and share them with you all- but school is ALWAYS busy and stressful, so I’m making no promises.
Keep fighting to feel better and content with who you are my chronic pain friends.

So easy to forget.

It’s so easy to forget just how much pain you were in. You’d think when you were in severe pain, or pain every moment of your life, it’d be something you’d recall easily, but it’s not. Once you get a taste of what it’s like to be pain free, or really, just in less pain) you quickly forget how hard it was.

I noticed this before I was in constant pain- when I’d have two weeks of horrendous period related pains and then be pain free for two weeks. It was like every time my period came around, I was floored- not just from the pain but that I’d just done this two weeks before. Like my body was tricking me, to make it not seem so bad, until it was here again.

After my surgery most of my constant abdominal pain was gone, or greatly diminished. I started noticing my joints, all over my body, really hurt- especially when it turned cold, and my ocular migraines were picking up in frequency again. Dr. B prescribed me amitriptyline; 25mg before bed each night. And that really helped. I’ve had two ocular migraines since I started the amitriptyline two months ago (two months ago tonight, actually!), and much of my joint pain and body aches were reduced.

That is, until recently.

The sharp stabbing pain in my lower right quadrant has returned. I think it might be ureter pain, since its the same pain as before surgery and clearly wasn’t resolved with the excision done in that area (right uterosacral ligament; although my hip had been feeling better!). And the fatigue has been creeping back into my life. This past week, my uterus has been crampy and angry. It’s an awful beast. Even on letrazole and progestin I spot every day, and for the past few days have been spotting pretty heavily with pain shooting down my right leg and cramping. I’m blaming the full moon.

I forgot just how bad I could feel. I crawled into bed the other day, curled tightly into a ball, and though “and this is only part of what I was dealing with a few months ago. HOW DID I DO IT?”

It’s so easy to forget how much pain we’ve be in. Sadly, it’s just as easy to forget how we were able to deal with that pain.

In closing, although my new year has started off painfully, I hope it has been relatively pain free for you.

IBS

Met with Dr. B again today. I called in to the set up the appointment on Wednesday when I was having obscene pain- and isn’t it just my luck that I set up an appointment and go back to mild-to-moderate for the next two days… Not like I’m going to complain about not having incredibly severe pain for a while, but it always does seem to go that way: I’m never as bad as I am on a usual day when I visit the doctor, so they never see the worst of it and I’m not sure they take me quite as seriously.

This time I brought my handy Catch My Pain chart. I didn’t have internet access at the office, so she didn’t get to see the stress or fatigue levels- but she got the gist enough that she took me a bit more seriously (and saw that I am mostly NOT unhappy depressed, but neutral in emotions, so didn’t press that one again).

I left with her thinking it’s IBS, and a script for some anticholergic pills to try for the next week. If they don’t work she’ll refer me to a gastroenterologist. The frustrating thing is, I am almost positive all of this pain is endometriosis related, but my GYN doesn’t want to handle the abdominal pain-because that isn’t her field- and my primary care physician is going to keep guessing these non-endo causes. I mean, I’m happy she is trying, but really I’d rather just do the surgery this summer and confirm it is endo, and take care of that appropriately. I’m sure all my endo-family out there knows that feeling all too well.