Life with Endo

It's a day for confessing, as every Wednesday is here in bloglandia, and it's a day I love so much. I mean, how can you not love a day we call Humpday in which all of our nearest and dearest gather round the campfire at Kathy's place and spill our dirtiest little secrets, cop to our madness, and share our best misdeeds with each other?

Usually I'm all for a good shame-spilling sesh — except, let's be real, I basically am incapable of feeling shame, as evidenced by all the weird shit I've told you guys over the past couple of months. But I guess it's worth noting that there's one area of my life or topic of conversation that, while I'm not exactly ashamed of it, I at least am very self-conscious of.

If you caught this post about my reaction to the Supreme Court's decision on the Hobby Lobby case, you might have picked up on something I mentioned about halfway down. I mentioned that I use hormonal birth control to manage a chronic and lifelong reproductive condition.
image via
I have endometriosis and a collapsed Fallopian tube. 

On October 23, 2012, I had a diagnostic laparoscopy to detect and confirm. This surgery — my first time ever under anesthesia — came after two ultrasounds {yeah, both kinds *shudder*} found no trace of anything wrong with me, though I knew there was. I knew the pain I was feeling wasn't normal. At 23, I had already been on birth control for many years as a method of pain management and all that other fun stuff, and it worked. So why was I suddenly doubled over, day in and day out, at times literally unable to move from the pain in my abdomen, lower back, and pelvic area?

During my surgery, my doctor found a moderate amount of endometriosis spread all over my ovaries, which were also found to be just a tad too big for my small size. {This is totally not a humble brag. My hips are too narrow making my midsection too small for the robot to have gone in for the laparoscopy as it normally would have, and everything's kinda cramped in there — even more so thanks to the endometriosis adding more bulk where it shouldn't be.} The layer was expansive but thin, so thin that it could not be removed without my doctor risking damage to my ovaries in any attempt to remove it.

For those of you who don't know, a simple explanation goes like this: with endometriosis, the endometrial layer grows outside of the uterus, where it isn't supposed to, over other organs. It can lead to the organs {like the ovaries} getting pushed around and kind of out of place, which I shouldn't have to tell you isn't ideal. It's characterized by pain. Sometimes, if you're really lucky, it can seriously disrupt your cycle. You're even luckier when random bleeding occurs. In many cases, during the laparoscopy, if endometriosis is found, it can be removed during that very surgery. In some other cases, like my own, it can't. In every case, it will continue to grow back.

I also have a collapsed Fallopian tube. This also means pain. And it also also means that 50% of the time I have no egg, so that if I ever tried to get pregnant, {that's if, and a big if at that; an if that won't even be addressed for a number of years} half the time our attempts would be useless. And that's, of course, if the endo doesn't take away my fertility by then anyway.

So why do I tell you all this today? It's not for sympathy, I swear. I've been living with endo — knowingly, at least — for nearly two years now, and the collapsed Fallopian tube for my whole life. It's just kind of something that's become like any other part of my life. It's not a secret — I'm willing to talk about it, especially because so few people seem to know about it, and I want to help change that. {Ladies, if something feels wrong, if you feel like you're in more pain than you should be, talk to your doctor. Tell her/him your symptoms and keep a record of your pain levels.} Sometimes, though, it makes me feel some small degree of shame.

I know that my femininity is not defined by whether or not I have children. I know that I am a woman in whatever ways I choose to define myself as such. I know that infertility, if that is something I face later in my life, does not take away my identity as a woman. But sometimes, it can get into your head and make you wonder things, things like why the very system that is universally understood to make you a woman rejects your body... and if your body isn't capable of things other women do with ease, how do you measure up?

Don't get me wrong, those thoughts are very few and far between, and I don't share them here for sympathy or words of encouragement. They pass almost as quickly as they arrive because I know that I get to decide what kind of woman I am, and what makes me one.

So, right, back to why I'm sharing this. Well, like I said, to inform and encourage women to check with their doctors if something isn't right. To promote awareness and understanding of this disease. And to some degree, to ask for your forgiveness. Over the last couple of days my posts haven't been prepared in advance, haven't included the best images, and haven't been the most thoughtful or entertaining reads. It's hard to describe this disease and its tendency to "come and go," because that might give off the impression that it ever goes. It doesn't. It never, ever goes. But sometimes, like the last few days, it decides that it doesn't want to let you forget for even a second that it's there.

So I hope you understand when I say my lack of attention here is not because I don't think you guys deserve the best of me — I know you do, which is why I decided to be so completely honest with you here today. As much as I enjoy the fun stuff, the sharing of our quirks and recounting our weekends with one another, it's the ability to share and talk about this stuff — the real, raw, not-so-cute-on-the-outside stuff, the stuff that makes us human and vulnerable — that makes blogland a really great place, and helps us bridge gaps set only by geography and happenstance.

If any of you have questions about endo or want to talk about anything mentioned here, or reproductive health, or fertility, or choosing to have or not have children, or having that choice made for you, or just want to ask questions or anything remotely related, you are very, very welcome to ask them. {Feel free to email me if you'd like to keep your comments or questions private.}

Regardless, just let me say thanks for sticking around even when I'm a bit off my game. You know I'll be back to normal shortly, and you know I'll make it up to ya.

{Linking up with Kathy for Humpday Confessions}

Comments

  1. thank you for writing this post! i must admit, i knew next to nothing about endometriosis before this post, so thank you for sharing. i know you said it wont go away, but i hope that the pain leaves you alone for a little or a lot while. aaaand you know i'll always stick around because i think you are always on your game :)

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  2. Thanks for sharing this post! I had an ultrasound that found thickening in my uterus lining, and I was supposed to get some procedure done where they go back in there and fill it with fluid (or something?), and take a sample of the tissue. But, I read all these horror stories online about how much it hurt.. so I never did it. The doctor said sometimes it's normal for the lining to be thicker during some parts of the month, but he suggested I go back and get another ultrasound in 6 months. I don't feel any pain or anything though, but it still makes me a nervous wreck.

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  3. Love this post and how honest and transparent you are. I love when you said feminity is not defined by the ability to have children. So very true. I think there are so many women with reproductive issues that feel saddened and shamed. I think it's because as a society we pass judgment, when we shouldn't. Again, love this post!

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  4. Love this, while I didn't experience that...when I was pregnant with my oldest I was ready for all the labor pains and the 'tough' work that women do. He came 4 weeks early, I had no excruciating labor pains, and my doc took him by c-section I admit that made me feel less than a woman for a very very long time.

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  5. I love how honest you were in this post. I have friends who have this condition and I myself have my own form of infertility and I haven't shared it on my blog and not sure I will but I admire your honesty and openness x

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  6. I have a friend with endo and up to week before last when I went to my doc for an ultrasound to check on my PCOS, they looked to see if I had it. I dont, but soo many do. I think a lot of women are uneducated about the workings of their bodies and its a shame. Im so proud of you for writing this post! I swear with every post I love you and this blog more!

    (PS so busy today that Im just getting to read blogs ... but so glad I took the time to read tonight)

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  7. I love your honesty and willingness to share this post. I've heard of endometriosis, but I never knew much about it so this was a good read for me. I couldn't agree more that women need to be educated about things like this, especially if it can help them in any way.

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  8. I am so glad you wrote this! While it's nice to share the fun stuff, my favorite posts are the ones that are deep down and from the heart. I have to admit I really only knew a little about endometriosis, but I know a lot more now that you shared this. I have an issue I've been putting off going to the doctor about, partly because it's probably not a big deal, but partly because...what if it is a big deal? You already know that, right now, I really don't care if I ever have a kid, but the thought of it not being a choice anymore still really scares me. Thanks for sharing!

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  9. You are absolutely amazing and your attitude about life and being a woman is so wonderful. You are the epitome of what a woman should be with your strength. Thank you for sharing your story, I actually didn't know much about endo and I'm really glad I came by to read this today.

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  10. Wow, thank you for sharing your story. I knew absolutely nothing about endometriosis, and you explained it simply and I absolutely love how honest you are in all of your posts!

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  11. I found this post linked on your yearly review and as a fellow endo sufferer, I had to check this post out.

    I was one of the lucky ones who had the procedure and they cleaned out what they could of my endo. Of course it's going to come back, but for the last year and half I've been mostly pain free and having been where you are, you have my sympathies.

    I kinda had to discover my endo on my own, my Mom and I aren't super close, but she had endo and she didn't mention it until I told her I was having surgery and she asked me why and after I told her endo, she was all, "OH! I had that, it's why I had a complete hysterectomy at 33." Good talk, Mom. Turns out, I'm a 4th generation endo sufferer and I can only assume any female children I (am able to) have will be doomed with the same uterus future. After years worth of doubled over cramping and having to stop moving at all to power through the pain and the periods, ughhh.. I was over it, so when the doc suggested I do the surgery I was like, CUT ME OPEN! DO IT, DO IT NOW!!

    The endo-fertility thing was kinda scary for me because I always assumed I'd have kids. The prospect of NOT having kids had never crossed my mind. At first, I was EXTREMELY uncomfortable with the fact and I mourned my potential infertility for a few weeks and then just kinda accepted it. If it happens, it happens, if it doesn't it doesn't.

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