My Endometriosis Story: It’s Surgery Time (again)!

And this is how I feel about that:

what-the-what
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As my fellow endo-suffers understand, one of the worst aspects of this chronic disease is that so little is known about it. Partly this is due to the fact that it effects women and not men (in the past women were told the pain was all in their heads), it can only be officially diagnosed by surgery, and, happily, it’s not terminal. Endometriosis can be “just” excruciatingly painful and debilitating, leave a woman infertile or, like me, send you into the hospital for emergency surgery because of a ruptured endometrial cyst.

Most doctors don’t know much about endo, so it’s often misdiagnosed. For much of my teens and all of my 20s I was told I had IBS and to stay on birth control to manage the pain of my period. I self-diagnosed the disease about three years ago and it was confirmed this summer during my emergency surgery. But even after surgery, no medical professional could tell me much about endo. So again I got busy on the internet and read lots of books.

A few years ago I started myself on a fairly rigorous anti-inflammatory diet. It’s about 75% vegan (I’ll eat fish sometimes but no dairy and no other meat), gluten-free, sugar-free and alcohol-free. Apart from when I travel, I stick to this diet pretty religiously. I tried anything holistic that I thought might prevent more pain: acupuncture, herbal tinctures, eliminating chemical products in the house and what I use on my body, meditation, yoga. It all helped my stress at times, but usually didn’t make much difference in my pain (it did clear up my IBS symptoms though so I still stick with it).

This summer when I landed in the hospital for two weeks, I was so mad. I did this diet thing! I had needles stuck in me! I meditated goddamnit! (Maybe I haven’t just quite reached a place of nirvana just yet). I was and am also so very fearful. In the hospital there were moments when the doctors had no idea what was wrong with me and Matt thought he would loose me (thinking of the fear in his eyes even now makes my brain numb). The most unfortunate aspect of my hospital stay is that my emergency surgery didn’t “fix” me. Many endo patients will have anywhere from one to 25 surgeries during their fertile years because even though they try to remove as much of the endometrial cells as they can, usually they don’t get them all. So, eventually, the endometrial cells left behind will grow and cause pain and potentially more cysts, which usually leads to more surgery.

Of all happy coincidences, it just so happens that some of the top surgical endometriosis specialists are in Atlanta at The Center for Endometriosis Care. They are much more aggressive in their treatment of the disease and because this is their specialty, they know exactly what to look for and where to look for it.

When I left Scotland to visit everyone in Atlanta for the holidays and then spend a month in Seattle, I had no plan of having another surgery done before returning to the UK. I still have painful flashbacks to what I think of as hospital PTSD from this summer. But when I met Dr. Sinervo in early January it was the first time that a doctor didn’t blow off my symptoms or give me a helpless blank look when I asked about how to move forward living with this chronic disease. Okay. Let’s talk. Even if that talk involves googlygooglygoogly (aka scary times).

I’m equal parts terrified, hopeful, bewildered (more surgery? really?!), but c’est la vie, eh? This journey has been about love and surrender and learning. One foot in front of the other. Breathe.

——-

Dear Cath and Readers,

Thanks for listening to me ramble about my health. I wasn’t sure if I wanted to write about any of this stuff because I still haven’t come to terms with a lot of it: the fear and pain I still remember from this summer, having another surgery done so soon, and what does it mean afterward? Cured? Healed? None of the above? But one of the things that helped me the most when I was doing my obsessive Googling for endo info was hearing other women’s stories. They are all different — no woman seems to experience endo in the same way — but it was comforting to feel not so alone in these varied experiences of suffering.

And I know suffering is not a very schnazzy topic for a lifestyle/fashion blog, but thank you for sticking with me/us through this.

Much, Much LOVE,

Lar


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23 Responses to “My Endometriosis Story: It’s Surgery Time (again)!”

  1. Snapshot Fashion Says:

    hang in there hun! i know everything is going to go well. it’s amazing that atlanta is the place to be if you have endo! :) so you’re definitely in great hands!!! maybe i’ll have to take a trip down there for my next surgery…*sigh*
    keep me updated on everything!
    p.s. email me your address where you will be staying in georgia. i THINK i have it somewhere…but who knows.

    [Reply]

    asiancajuns Lar Reply:

    Thank you lovely, lady! I hope you don’t have to have another surgery, but if you do, the CEC has been awesome!!! I’ll definitely shoot you my email with my address.
    Hope you are staying warm up in NY!
    Love,
    Lar

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  2. Sally Says:

    Oh Lar, my heart broke reading this. I was so hoping you’d be in the clear for much longer! Still working on that foundation idea we chatted about … there needs to me more research on diseases like endo. Sending you LOADS of love.

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    asiancajuns Lar Reply:

    Thanks so much, Sally! Don’t worry, this could really help and make me feel better, so that’s the good news. And I am so excited about your foundation. I can’t wait to help in any way I can. You are an inspiration, lady!
    Love,
    Lar

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  3. Mia Says:

    I’m so sorry to hear that you have to go through this again so soon. I’m sending you lots of warm thoughts and keeping my fingers crossed that the surgery will go well and be the last for a long while!

    [Reply]

    asiancajuns Lar Reply:

    Mia, thank you so much! All your thoughts really make me feel so much better!
    Love,
    Lar

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  4. Amy Says:

    Oh, I am so sorry for this pain and the surgeries and the uncertainty. Please always feel your blog is a place for you to talk about your health. In doing so, you are educating others who may have similar issues and educating those of us to understand our friends who also suffer from endo or other chronic illnesses. Your courage and strength (and, yes, style!) show through your writing, even when I’m sure you don’t feel that way. Your blog is totally a place to show the truth about your life and that makes it better and richer. Keep us up to date with what happens and I’m glad you can have the surgery and recover with your family.

    [Reply]

    asiancajuns Lar Reply:

    Ooo, Amy, thank you so much for your comment! Thank you for encouraging me to continue to share this less-than-glamorous stuff. I do hope it helps and makes others (suffers and their loved ones) feel less bewildered and alone. Your words mean so much to me.
    Love,
    Lar

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  5. Lisa Says:

    Oh, Lar, sending you a BIG hug. From what you’ve described, endo sounds like an uphill battle, but I know you have the courage to face it. <3

    [Reply]

    asiancajuns Lar Reply:

    Thank you so much, Lisa! I feel the hug all the way here!
    Love,
    Lar

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  6. CurryLove Says:

    I’m so sorry :( I’m glad you found a Dr who understands/wants to help. I *HATE* that look from doctors who think YOU’RE the crazy one when describing your symptoms, just because they never studied it in med school. Arrrgghhh.

    On the plus side (if there is one), at least you’ll be here surrounded by friends and family, and you’re going in knowing what’s going to happen, instead of an unscheduled surgery.

    We’ll all be anxiously waiting for a follow-up post to this on how things went!

    [Reply]

    asiancajuns Lar Reply:

    CL, isn’t that LOOK the worst? I totally understand it, but it doesn’t make me less want to punch some one ;D

    And you are so right about looking on the bright side. It is so nice to be in Atlanta surrounded by family and friends.

    I’ll have Cath do a follow-up as soon as possible.

    Thanks, CL!

    Love,
    Lar

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  7. Maggie Says:

    I’m more than thrilled that you are changing the identity of a lifestyle/fashion blog– yes, you’re cute, and you wear super great clothes, and live in Scotland, but your life isn’t perfect and here’s why… We need to see that. We all need to see more of that and talk more about it. Like one commenter said above, this makes your stories on here richer! THANK YOU for being so brave to tell us this… I bet you are really going to help at least one person who also suffers from endo. I remember meeting the first doctor who didn’t blow off my symptoms from vulvodynia. It was like someone had literally turned a light on… I hope this surgery is the first in a series of many good turns for you!! Godspeed… my thoughts and prayers are with you!

    [Reply]

    asiancajuns Lar Reply:

    Maggie, thank you so much for such a sweet, encouraging comment! And I’m glad you like the direction of the blog because, to be honest, I’m really tired of seeing pictures of myself (but not Cath ;D) and this life stuff has dominated the picture way more than shopping and trends these past few years.
    Thank you so much for your thoughts and prayers too! I have a friend with vulvodynia — my prayers go out to you too. I know how frustrating that must have been to find answers.
    Love,
    Lar

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  8. Ali Says:

    Thanks for sharing your story Lar. It must be hard having the excitement of being back with your family but also having the thought of scary surgery looming ahead. But isn’t it so amazing to find a doctor who understands YOU as an individual and not just the symptoms you happen to have the day you talk to them? I had a similar experience with a dentist recently and it made me SO happy.

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  9. Pam Says:

    Lar,
    Thanks for bravely sharing your story and the difficulties of fear and the unknown. The world is made better by stories that are shared as we gain strength and understanding. Praying for you much today and in the healing.
    ~Pam

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  10. Ashley Says:

    Wow-thanks for sharing lar! I have also had a lot of “lady issues”, as I like to call them, and was hospitalized for a variety of burst cysts in my late teens and early 20s, which was scary as hell for all involved. I haven’t had any trouble for a few years, although the spectre of infertility looms over me (lots of scar tissue in there from all the cysts, i guess). Endo is scary stuff. I wish you all the best, and I hope the surgery goes well. I’m so glad you’ve found a good doctor you trust! xx

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  11. laura Says:

    Lar, thank you so much for sharing this. I really don’t know very much about endo, but thanks to this post, I definitely am aware of so much more! I’m so sad to hear about the pain and all the things you do to take care of yourself. You’re definitely a strong gal and your perseverance will definitely pay off! I’ll be thinking of you and sending you loads of good vibes for your surgery! Hugs and more hugs!

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  12. Amanda Says:

    Lar, I saw on instagram (via Twitter) that you’ve had the surgery and it went well. Yay! so glad to hear that! Thanks, Cath for the update, and thanks Lar for inspiring us with your honest, heartfelt post. And to both you girls, thanks for always keeping it real with your readers. We <3 you!!

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  13. Michelle Says:

    Lar, I wish you the very best for smooth recovery from your latest surgery and with long-term endo-management. I’ve been seeing a reproductive endocronologist for lady issues myself, and I’m in awe of your willingness to speak out openly on this subject and educate your readers. Hugs!

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  14. sassy Says:

    I have endometriosis! It sucks big time. So sorry to hear.

    [Reply]

  15. BBC Says:

    So I am way late on seeing this and I hope everything went exceedingly well. As a current med student, I just want to confirm that you are so right in what you say about endometriosis. It’s not that it is a condition we are never taught about b/c it is most definitely taught and even shows up on licensing exams. The problem is more that we learn about it in such a cursory way and are never really taught much about treatment, more just that it COULD be something that someone is experiencing if she is having really horrific cycle-associated pain that isn’t relieved by other common treatments. It wasn’t until my Ob/Gyn rotation when I just so happened to go to a grand rounds lecture by a reproductive endo specialist who talked about endo at length that I really started looking at my patients differently in terms of having endo regularly showing up in my differential diagnosis for menstrual complaints. More eye opening to me from this particular lecture was that from a surgical standpoint, we used to always assume that endometriosis looked a particular way (purplish or brownish lesions), but that the reality is it could look just like any other tissue at the time you are operating which was really distressing to me as a future physician wanting to give people options, but also from the perspective that I don’t think a lot of patients are given sufficient info about our ability to even visualize what we are attempting to treat when we operate. Which means we leave a lot of people thinking we’re going to go in there and fix everything when the truth is that it is very likely we won’t be able to.

    All of this is really just to say, I totally applaud your efforts to continue being open about your experiences and bringing attention to this condition. A lot of women are suffering and we are absolutely missing the diagnosis regularly. But hopefully your experience will get other women to keep pushing their medical providers for answers. Sadly, our American medical system rewards volume and procedures, not sitting around and thinking about what we might be overlooking and how we can save you the runaround of coming back repeatedly with no improvement. But push us enough and our training eventually kicks back in and we reason through problems like we were taught from the start. We don’t always have the answers, but we can absolutely do better to make you not feel alone in the process.

    So much <3 to you 1/2 twin,
    BBC ;)

    [Reply]

    AsianCajuns Reply:

    Dear BBC,

    Soooo good to hear from you and thank you thank you thank you for your comment!

    I can understand the frustration my doctors face as well when I tell them I have endo and am in pain and painkillers aren’t working. Especially in UK where the NHS isn’t going to perform surgery unless it absolutely needs to, usually painkillers are all a GP can prescribe. I can’t tell you the number of times I’ve been told to just sit on a hot water bottle (that happened a few weeks before I landed in the hospital for ten days).

    I feel so encouraged by your experience doing rounds and finding out more. I’m so optimistic that the more is known about endo, the more research and funding will be poured into it.

    I’ve recovered much more quickly from this second surgery. I’m still hesitant to say I’m cured, but the Center for Endometriosis care are experts at spotting even the tissue that doesn’t look like endo.

    Thank you again, lady! I hope our paths cross soon (and not in a patient/doctor capacity ;D).

    xoxoxox,
    Lar

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