A New Year with Endo

10:55 AM

Juno and me, partying it up last New Year's Eve

If you read my last blog post, you'll know that I was at my parents' house for two and a half weeks, helping take care of my mom after a major surgery. I came home Sunday night, and my little family is finally reunited! Mom's at home now and doing really well, but she still has a long road ahead of her, recovery-wise. Thank you to those of you who have kept her in your thoughts and prayers. Please continue to do so. :)

So it's been a little while since my last blog post, and I thought I'd get a head start on the obligatory New Year's post. Since endometriosis is still incurable last I checked, 2016 will be another year with endo and all of the challenges it brings. 

This is also a very unpredictable disease, so it's hard for me to put together some cheesy New Year resolutions for my health aside from "just keep going," which seems to be my overall life motto... 

(Actually, I recently decided that this is my motto for 2016...)

Endometriosis has a very high recurrence rate after ablation surgery, which I had in December 2014. (If you're unfamiliar with the term, it involves burning off problem areas, which are then ideally healed by scarring. Unfortunately, some endometriosis cells will almost certainly be left behind to regrow.) I can't seem to nail down a good stat for this, but most of what I've read says recurrence rates can be as high as 45 percent a year after ablation.

This is why excision is considered the best option to treat endo since it cuts away lesions to ensure they are completely removed from the uterus. But it can be difficult or impossible to find an excision specialist in your state. (Mine doesn't have one, to my knowledge.)

Even now, I can tell that my pain has changed over the past few months. My endo was found around my left ovary and Fallopian tube, but my daily pain inventories have led me to suspect that some of that has migrated to my right side, too. As I've also mentioned before, I frequently feel pain shoot down to my left knee, leading me to think that maybe there are a few spots putting pressure on my sciatic nerve.

Due to poor research and treatment options, endometriosis unfortunately involves a lot of guessing games for the women it affects. My husband, Andrew and I were recently trying to plan out the next five years, and the topic of starting a family came up. Right now, we're both ambivalent about kids with me leaning toward "noooo thank youuuu." We haven't tried for kids, so it's not a guarantee that I can't naturally conceive.... but with endo, it's highly likely.

Andrew's life motto (since we're all about them this blog post) always seems to be "We'll cross that bridge when we get there." But I pointed out that we can't do that with endometriosis. We can't wait until I'm 30 and then suddenly say, "OH! We want kids now! Oh wait. Tracy's infertile, and we didn't save any money for adoption or IVF..."

So we have to guess that I'm infertile. We have to err on the side of caution and start putting away money for fertility treatments or adopting a child. And if we go with the former, we're going to have a long road ahead of us that may possibly go on for years and years.

(And hey, if we decide we don't want kids, European vacation!)

So 2016 might look a lot like 2015 did for me. My year was full of trial and error by testing out medications, diets, exercise routines, home remedies and everything in between. Now that I have one year with endometriosis under my belt, I like to believe I have a solid foundation for managing my disease. But as I've learned, this condition loves a good surprise.

I was out with some friends last night, and someone asked me if I had my endometriosis "under control." I said that I did for the most part, but in the back of my mind, I was laughing. "Of course everything's under control! Please disregard the fact that I was late to dinner because I had to run out and get some ThermaCare heat wraps from Kroger so that I could survive the evening..."

As soon as I think I have everything figured out, my medication fails, or my symptoms change, or I start bleeding out of nowhere, even though I'm NOT SUPPOSED TO HAVE PERIODS ON CONTINUOUS BIRTH CONTROL DAMMIT.

With a chronic illness, you never really feel like you're in control. It's easy to feel like a slave to your body, constantly responding to its demands and anticipating its needs. It can suck any enjoyment out of everyday things like eating a meal or taking a long walk. It ruins plans and sometimes even keeps you from planning in the first place.

Looking forward to 2016, I'm sticking with what I know. My diet works. My medication (currently) works. My gym routine works. And when something stops working, I won't blame myself. I'll understand that I did everything I could, as best as I could. And it doesn't mean that plan B won't work, even when treatment options are limited for a disease that will certainly progress and change.

And for the things I don't know, I will be patient. I will read, research and ask questions. I'll collaborate with those involved in my care, and then I will make the best guess that I can. And I won't be too afraid or proud to go back to the drawing board when I need to.

All things considered, 2015 was a good year. And I think I'm ready for 2016.

And if I'm not, I'll just watch this gif for a few hours and then feel better...

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    1. I had endometriosis for 18 years and i never thounght i would ever get a cure due to the terrible symptoms i had and this made it impossible for me to get pregnant even after 12 years of marriage and it was a serious issue. I got to know about dr.idedia who treated someone and the person shared a story of how she got a cure and let her contact details, i contacted dr.idedia to give a try too and use his herbal medicine that was how my burden ended completely. My son will be 5 this december and i am greatful to God and thankful to dr.idedia for his medicine too. If you have (Endometriosis, PCOS, Fibroid, Ovarian cyst, Ectopic Pregnancy or any infertility issues) just reach him on (dr.idediatraditionalhealinghme@gmail.com) he has professional advise and a cure too.

  2. I always love reading your blog because I can relate to it so much. You mentioned that your pain is changing and I noticed a lot of change for myself in the past few months. I started getting upper leg and knee pain (like you) and it really sucks to envision it getting worse cause I've been pretty lucky pain wise so far (minus my endometrioma causing insane problems).

    Anyways, thanks for blogging about your endo. And all the best in 2016!

    1. Thank you so, so much for reading! I'm so glad that my experiences connect with someone. :) Yeah, my knee pain has been a weird thing to navigate. I'm not really sure what to do about it, aside from exercise, which seems to help a little bit. I was born with misaligned hips, too, and a slightly curved spine, which kind of adds to the problem. If it gets worse, I might have to begrudgingly give physical therapy another shot.

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