Friday, August 8, 2014

An (Endo) Update.


If you follow me on Instagram, you may know that recently I had to visit the hospital due to some new kinds of endo pain.

Here are some updates and a few prayer requests...

During our first night in Portland a few weeks ago, I started experiencing some abnormal stabbing pains. In the past, all my experiences with endometriosis had consisted of general pelvic pain that is hard to narrow down to a more specific spot, but these pains were so sharp and direct that I could literally point on my abdomen to where it hurt. Although these spasms came and went over the next few weeks, I never worried too much about them and I was able to handle the discomfort.

Two weeks ago, I was lying on the couch, watching a movie when all of a sudden the pain was unbearably sharp. I sat up, clutching my stomach, shouted an expletive (sorry mom) and my eyes began watering. It was a really uncharacteristic type of pain for me and the part that concerned me was how it was concentrated in that same location that had been bothering me for weeks.

After a day of playing Should-We-Go-To-The-ER-Or-Not, I decided that it would be a good idea - just to make sure nothing too seriously wrong was happening inside my body.

After chatting with a really idiotic nurse who criticized my use of Percocet for my endometriosis ("That's a really strong medication you know…" "Yeah… It's incredibly bad pain…") and then felt qualified to make comments about my possible infertility ("Endo and PCOS? Wow, good luck having kids." - apparently I need to send him this article haha) I finally saw a doctor who ordered a variety of tests. And hours later, a while after midnight, all the results came back normal.

That was obviously great news, but for the first time since my diagnosis, I felt that same let down of every test coming back normal, but being stuck without definite answers. The doctor chalked the pain up to most likely being new endometriosis growth on the ovaries and recommended I schedule my second surgery. Which I agree with, but it really frustrates me for a variety of reasons.

After my last surgery I completely changed my lifestyle. I heard the statistics that most women with endo had these laparoscopies every 2 years and I swore that I was not going to be one of them. I did the diet, regularly practiced yoga, started cycling, saw a naturopath, took the hormones, ingested a boatload of vitamins twice a day, my mom gave me shots on my hips, I put drops under my tongue, consulted with an acupuncturist, slept on an earthing sheet, switched over to entirely natural beauty products… and still, a year and a half later, (even sooner than average!) they want to cut me open again.

That's what drains me of my hope. Why did I do all of those things just to find out I was not going to beat the statistic? It wasn't an easy year and a half. It was really, really hard. We spent tons of money and time and effort on all these treatments just to find out the endo is still growing. And it almost seems like it's growing faster than it used to.

I don't really know what I'm going to do now. I feel like I'm driving a car, blindfolded, trying to get to a destination where I can finally relax. I'm being bombarded by other people's opinions and suggestions but what I really need is their support.

My parents are really passionate about me finally seeing an endometriosis specialist. I've seen fertility specialists and I've seen good gynecologists, but my parents are suggesting that I fly up to Stanford to see one of the highly regarded endo doctors up there, since we don't really have any local ones. Seeing a surgeon who really knows what they're doing is obviously ideal but I hate the idea of having to recover from surgery in a hotel room, in an unfamiliar town, away from Weston, my family and friends. It would be so much more expensive too, with all the travel costs - and we don't even know for sure that it would work better than just having the surgery down here, which makes it even harder to make that decision.

One thing I'm sure of, is after this surgery, I don't want to take the hormones anymore. I want to see if that is what caused the endo to grow back so rapidly. They were my surgeons recommendation and I started taking them a week after my post-op appointment but my naturopath has always been against it and the acupuncturist said it contradicts what she knows about treating endometriosis successfully. Stopping them is a really hard thing to do though, because it was the one thing that kept my pain at a minimum this past year. I had a few bad flare ups and lots of random painful days but it was nothing compared to what I went through in the year before my surgery. I'm really afraid of going through that again. In the short run it's going to suck, but I truly believe it will be best in the long run.

I'm also trying to figure out the best timing for surgery. The new school year is almost here and I don't want to miss any of the first couple months with my new students. I also don't want to have the surgery right before the holidays because I haven't had a pain-free Christmas in 3 years. There is a better chance for me to feel well before the surgery than after - especially when I won't be taking the hormones. So I'm praying for a wonderful holiday season and then a successful surgery. There's no real "good time" but for right now, that would be the most ideal for me, if I can make it until then.

Anyway, lots of updates. If you are the praying kind, please ask God to give me peace as I'm making these big decisions : timing, doctor, location, new treatments, etc. If you aren't the praying type, I also believe in the power of positive thoughts, so a few of those wouldn't hurt either. ;)

Thank you, as always!
Love you all.

18 comments:

  1. I hope everything goes well! xo

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  2. I'll be praying for you and I understand your pain and frustrations. I had to have another surgery a year after my first and I'm still in pain. I don't know if you have heard of the Center for Endometriosis Care in Atlanta, Georgia. I know it's far away but I've heard from many people that they have the best specialists for excision and endometriosis. Also, on facebook there is a group called Nancy's Nook Endometriosis support and they help with support, questions, and just about anything. Just some things to look into! I hope everything works out for you.

    Jessi
    oddsnendo.wordpress.com/

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    1. Thank you for the prayers! Yes, I was in contact with several support groups who recommended the trip to Atlanta. One more option to consider! It can be a little overwhelming but I'm just thankful I still have options to explore! Hope everything works out for you as well! <3

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  3. Prayers for you! I had surgery in May and am experiencing a good amount of relief, no ER visits so far! Just a few days of hot baths :) What hormones do they have you on?

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    1. Thank you so much! I'm so happy to hear that your surgery helped you so far! That is such amazing news! They have me taking LoLoestrin on a continual basis so I never take the placebos and ideally would never have a cycle, and therefore never have pain. Although that hasn't quite panned out and the pain has actually been more constant now, though it has been less intense, so I appreciated that! Not sure it was the best idea but I trusted my doctor and now I'm going to try something new and hope it works out better! :)

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    2. I am doing the same thing but with Sprintec. It is all so new to me and I always thought that the one surgery would fix it! My pain isn't horrible just very uncomfortable. Hope you have good luck on another path!

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  4. I'm so incredibly sorry that you're going through this. I will most definitely be sending good thoughts your way & I wish you the best of luck! And I just wanted to say thank you for sharing your story with all of us, I know it can't be easy, but it seriously has been a huge help to me. Thank you!

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    1. That's so sweet, thank you! I'm glad it's helped you - makes me feel like I'm fighting this battle for a reason! ;) Thank you for the good thoughts!

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  5. Kelle, :( I am wishing and praying for the best for you. Whatever you choose to do will be just that - hope your mind is at ease and you don't worry too much about whether or not you made the "right" decision. I hope to see you around your birthday and we can all be there with you during the holidays. You may not be but I am so excited to finally see you and the family again! Sending those very positive thoughts your way. Lots of love from me to you.

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    1. Thanks so much, Diane! Looking forward to seeing you soon!

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  6. More prayers for you from a fellow endo sister.

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  7. Praying for the best for you.. I'm sure everything will be okay.

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  8. Kelle--I am so sorry for what you are going through. I have Endo too and was dismissed and misdiagnosed for 26 years before anyone figured it out. I have had three surgeries in the last 18 months and the pain is back again. I hear you on not wanting to take the hormones--the pill disagrees with me and Depo Provera was a nightmare. I want to find relief in a more natural, holistic way too and it is frustrating when even our best efforts still don't keep this at bay. It is sometimes just a comfort to know that there are others out there that understand and that you are not alone. Hopefully the specialist will help you. I am in the market for a new surgeon myself so definitely keep us endo sister readers posted! Thoughts and prayers for you...

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  9. I'm not sure where you are located, but I started seeing a specialist in Louisville KY(where I live) and I am so glad I found him. And lucky to be in the same city as him! I was diagnosed in 2012 and currently recovering from surgery #4, so my surgery rate has been a little higher :/ BUT I also have been on zero treatments, because we have been TTC for the past 1 1/2 years. Before this last surgery I was taking Tramadol for my symptoms. While I was in the recovery room in the hospital trying to wake up from my procedure, I actually heard the nurse criticizing my use of Tramadol and telling other nurses how I was asking for more pain medicine upon waking up. I really hate complaining and being negative, but really?! Only if she knew how much pain endo girls actually go through :/ I'm very glad I found your blog, it is so nice to be ale to relate to other women who are going through the same things. I will be keeping up with your posts and praying for you!

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  10. Hi Sweetness! I stumbled upon your blog a month back when I myself was trying to find answers and insight for this ridiculous disease (of which I too am "blessed"). I was at the end of my rope at that moment in my life and was trying to find endo girls who were living vibrantly, and I'm psyched to have found you since you were pretty much the only upbeat blogger I could find who also battles with endo!

    Anyways, I decided to start my own blog kind of trying out and cataloging different holistic ways to treat the endo pain, self guinea pig style, and I've honestly had a lot of success so far. It's only been 3 weeks so I'm nervous to jump the gun, but if you want to see what I've been doing check out my site www.live-life-endometriosis.squarespace.com. I would love it if you have ideas too, since it looks like you're doing really well all things considering.

    much aloha
    Katie

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