Introduction

My name is Jessica, and I'm not going to shut up anymore.

Monday, April 15, 2013

Emergency.

To be clear: I hate the Emergency Room. I hate the feeling of helplessness that permeates the space between myself and the standard changing room curtain. I hate the chill of sterility. I hate being prodded by med students (sorry to my cousin Caiti who is currently in med school!). I hate repeating myself over and over and over again. I hate feeling like someone is going to walk into my room at any minute and tell me that I'm crazy for being there. That because I'm not dying, I should stop taking up bed space and go the hell home.

But as much as I hate the Emergency Room, I sometimes find myself there. Two weeks ago, I found myself in the Hershey ER with severe abdominal pain and a sense that if I strained my bowels or my bladder, organs would start to fall out of me. It was bad.

To keep my story short and sweet, I was doped-up on Dilaudid and still in crazy pain. It felt like both ovaries were burning and the stabbing, throbbing pain crept all the way from my belly into my upper thighs and down my legs. I had only ever experienced pain like this a few times before; it felt like I had an ovarian cyst. A few hours after being heavily medicated, I finally had a transvaginal ultrasound. The results? Nothing. Well, nothing remarkable.

Because I'm super nosy, I always ask the technicians what they see on the monitors. I mean, if someone is sticking a big ole plastic wand up into my vag, I wanna know what's going on in there! Even so, the "charm-free" technician acted like I was a nuisance and said: "It looks like you had a large follicle on the right side that is folded in on itself."
I think: "Oh, could it have been a cyst?"
She says, nonplused, "No. It's normal."

Great. So I'm in the ER for no reason? No Jessica, don't start thinking you're crazy again. (This is what I have to keep telling myself.) Meanwhile, back in my chilly "holding cell" the doctor returns to tell me that it very well could be endometriosis flaring up again.
Great...

I'm writing this blog today not to claim my return into a "decline" of health. Rather, I'm writing this because I wanted to point out two things. First, I'm pretty sure my endo is flaring up again. I'm pretty sure that it's because I'm majorly stressed out. I'm pretty sure that when I'm done with this semester, I'll probably start to feel significantly better. Secondly, I freaked out. My doped-up ass starting bawling at the thought that my endo was back. (It never truly goes away--duh!) I started freaking out, thinking: "I'm gonna have to go back on Lupron! I'm gonna have to have surgery again!"


Ladies, I ask you: Have you ever felt like this? Say, after having surgery, after keeping things under control, have you ever freaked out because you thought your body was in severe decline, worrying that you were starting all over again with treatment?

I hope the answer is yes. But I commend you if your answer is no.

Ladies, I tell you this: Stay positive. Honest to goodness, keeping a positive attitude over the last few months as I started to feel pain creeping into my abdomen again, has been the only thing that's kept me afloat. I write this to you after finding myself in the ER again, thinking for a brief (and drugged) moment that I was a helpless victim of my body. After sobering up--and vomiting the whole way home from the drugs (always ask for Zofran before you leave the ER if you've been given pain meds)--I realized that I was going to be OK.

I think back to myself a year ago. I virtually let endometriosis rule my life. It was a horrible experience, and I thought often about killing myself because I had been in so much pain without relief or a diagnosis. (There, I admitted it--FINALLY.) But now, even after having found myself in dire straights, I can tell you that I'm FINE. I'm ok. I'm gonna make it. I'm not depressed any more. I'm well on my journey to discover who I am. Recently, the President of the College (I work at a college) commended me on my professional success and mentioned that the "little girl-ness" inside of me had finally matured into a professional example of leadership. WOW. I'm paraphrasing, but the point is this: NEVER GIVE UP HOPE. Even when you find yourself in familiar territory like the ER. Even when you have submitted your body to scrutiny again. Even when you're pretty sure you're going backwards rather than forwards, NEVER GIVE UP. You'll be ok!

In the meantime, do whatever you have to do to stay positive. Talk to your loved ones about your fears. Talk to your doctor about your concerns. Go for a walk. Sleep late. Read a trashy romance novel. Reach out to anyone whom you know has experienced endometriosis or cysts. Comment on this post! If anything, send your cosmic question into the universe through virtual networks. There there are always resources that can help. I recommend the Facebook Page for the Endo Research Center: https://www.facebook.com/EndoResCenter

After I graduate, I hope to help establish a Central Pennsylvania Endo support group. If you know of any resources, feel free to share! If you live in south-central PA, feel free to reach out! jknouse05@gmail.com

Always remember: you are not alone. Don't give up hope.

My loving, supportive husband, Justin, has been an important part of my recovery. This is a picture of us (making plans and having fun!) at a Penguins game in Feb 2013. Go Pens!



3 comments:

  1. I just came across your blog through Facebook. I have to tell you just how much reading your journey has helped me. It makes me feel like I'm not alone in this. I too, have stage 3 endo, and had my second lap in March. I am having pain still and am going through more testing for IBS, Rheumatoid Arthritis, and some other ones I can't remember the names of. It is so frustrating not being able to do the "normal" activities you once were able to enjoy. Having Endo is a major lifestyle change.
    I just wanted to stop and say thank you for sharing your experiences and journies with endometriosis. It is so extremely helpful knowing we are not alone. =]

    -Katie <3

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    Replies
    1. Hi Katie!
      Thank you so much for commenting! Even though I know we're not alone, sometimes it feels very isolating to experience endo pain/symptoms. I have to always remind myself to reach out, to communicate my anxieties, fears and hopes and to NEVER give up.
      I hope you find a way to treat your pain and that you are able to start making progress on a diagnosis and treatment plan. I wonder: is your doctor talking to you about a multifaceted treatment plan? My doctor recommended I alter my diet to the "endo" diet, which mimics the paleo diet/gluten free health regimen. I think it really helps. Also pay attention to your body and your diet. Sometimes eating or drinking certain things can facilitate a "flare-up." I certainly wish you all the best, and please keep in touch!
      Jessica

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  2. Dear Jessica,

    I found your blog and think it is an incredible resource for women suffering from endometriosis. I appreciate that your blog is giving women with this issue important information and resources.

    I want to reach out and introduce myself. My name is Becky and I am the Outreach Coordinator for Womens Wellness Publishing.

    I want to let you know that our lead author, Susan Lark, M.D. has just written a fantastic new book on endometriosis, Dr. Susan’s Solutions: Heal Endometriosis. http://amzn.to/14yeSct

    Dr. Lark is one of the foremost experts and authorities in the field of alternative medicine and wellness for women.

    Her new endometriosis book is an incredibly effective and beneficial guide to healing from endometriosis and restoring your hormonal health and balance.

    The book contains her all natural treatment program that has helped thousands of her patients gain significant relief from their debilitating endometriosis symptoms.

    Most of her patients have been able to avoid surgical treatments, including hysterectomy, as well as avoid the use of toxic drugs and hormones, like Lupron, with her all natural treatment program. Her book also includes her expert knowledge of the most up-to-date medical and alternative therapy research in this field.

    A little about Dr. Lark: She has a passion for helping women restore their health and wellness. Dr. Lark graduated from Northwestern University’s Feinberg School of Medicine, and has served on the clinical faculty of Stanford University Medical School. She has been the director of a number of women's health clinics and health projects.

    Dr. Lark also posts wonderful health features for women on our Womens Wellness Facebook page, and she has many devoted followers. https://www.facebook.com/wwpublishing

    We’d love to have Dr. Susan's new endometriosis book be featured in your blog. We would be happy to send you excerpts from this book and provide any additional support that you would like.

    I look forward to hearing from you! I can be reached at my email address, wwp.wellness@gmail.com.

    Best regards,

    Becky Steinman

    p.s. Dr. Susan's books are available through Amazon, Kindle, Barnes & Noble and iTunes.

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