Category Archives: Endometriosis

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

And this is how I feel about that:

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Photo via Pinterest 

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.

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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

Recovery

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Thank you guys so much for the sweet messages here on AsianCajuns while I’ve been away.

These past six weeks have been bewildering, scary and exhausting. As Cath mentioned a few weeks ago, I was in the hospital for two weeks due to complications caused by endometriosis. I had a burst cyst and a tenacious infection that was treated with surgery and mah-hooosive doses of antibiotics. Slowly, but surely I’ve been on the mend (woohoo!) — but it’s the “slowly” that takes me by surprise.

This is going to sound like such a naive and stupid thing to say, but who knew recovery could take so long and be so hard. I assumed recovery would be just feeling a bit tired and getting to watch netflix for hours on end while loved ones ply you with bowls of soup and plates of buttery toast (thank you Matteo and mom!). But when your body is trying to knit itself back together post-surgery and been pummeled with what one of my doctor’s described as “liquid bleach” (aka the burliest, muscliest batch of antibiotics) and an unending supply of potent pain killers, surprisingly your body doesn’t just bounce back.

Part of my impatience at this slow recovery has come from wanting to get as far away emotionally, mentally and physically as possible from this experience. I know we are meant to build character and inner strength during very difficult times, but I seriously want to say “erm, thanks for this opportunity for spiritual growth and wisdom and all, but I think I’ll take a pass. Rain check (for never)? Okay then! Buh-bye!” And then run as far and fast as I can from reminders of hospital machine beepings and long moments of pain.

Unfortunately, it isn’t a choice — this long-haul recovery. It’s not letting me stick my fingers in my ears and go “LA LA LA LAAAA” until it’s all over (fist shake!). But with all my graceless grumblings I feel very lucky to have had so much support from family and friends. Also, if you are going to feel unwell for weeks on end, it’s not too shabby to get to spend one of those weeks in an Italian villa with some of your very favorite people in a place that I’m pretty sure might be heaven.

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Dear Cath,

As beautiful as Sant’ Antonio was, I feel a little cheated. I didn’t get to properly soak up Cath time because I had to spend energy on recovery (again with that patience thing — when will I learn?). Recovery is a little like a haze that blurs moments that should stand out in sharp relief: I was in a beautiful Italian villa with my twinie! Instead, the blurriness makes me think of sitting on my bed grumbling about some pain.

I can’t wait to see you again without the haze and with less grumbling on my part! And it isn’t so very far away is it? December is practically right around the corner!

Miss you to the moon and back!

Campari Spritzly Yours,

Lar

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Fashionista Fundraiser for Endometriosis Awareness (Part Two)

Cath and I wanted to thank you again for reading my first endometriosis post on Monday. Your comments have meant the world to me. Not only has my fight with endometriosis been a physical pain, it also leaves me feeling pretty low emotionally for at least a week each month. Getting people to talk about it diminishes it’s ability to frighten me and isolate all of us who share the burden of endo. So thank you and thank you again.

We are continuing our fundraising for Endometriosis Foundation of America through next week. Other lovely ladies in the blogisphere are involved. Check out these fabulosas fashionistas for the cause:
• Diane of Snapshot Fashion
• Maegan of Love Maegan
• Jen of Jennifhsieh

If you’d like to donate to the Endometriosis Foundation of America with us, just click this link HERE.

Speaking of fashionistas and fun facts (unrelated to weighty issues), here is one for you: use what’s on your dinner plates in your outfits. I’m sticking broccoli in my lapels next. Yes? No? I’m thinking organic broccolini might set off a gray blazer nicely. I kid, I kid. mostly. Pad Thai-er-ific:

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Dear Cath,

I know we think you might also have endo cuz mom had/has it and I have it — sharing the same DNA seems like a bad thing at the moment. But! I’ve been reading! And there are some studies that suggest that epigenetics (gene expressions that can switch things on and off in your DNA — I think. Dr. Matteo, is that right?) might have a role to play in endometriosis. And that means that maybe because of environmental reasons and what have you, you might NOT have endo even though we share the same genes. Isn’t that amazing?! Okay, yes we have the same DNA and grew up in the same environment, but we are different people and so (as proved by epigenetists) that means we won’t always be identical — which I usually hate, but in this case — woohoo!

Talk to you on skype sooooon! Wish us luck as we schlep our boxes to our new flat this weekend. I’ll take pics of our new (incredibly humble) abode once we have keys!

xoxoxoxoxoxox,

Lar

Fashionista Fundraiser for Endometriosis Awareness

I have endometriosis. Me and roughly 8.5 million other North American women suffer from what can be an incredibly painful condition. It isn’t a terminal disease, but it can cause debilitating pain and infertility. And even with the large number of women who suffer from endo, there is very little known about it and there is no cure.

What is Endometriosis, you ask?

Great question! I had no clue until I did some web MDing after I was diagnosed a year ago. A woman with endometriosis has uterine cells elsewhere in her body other than her uterus. They can be anywhere in the pelvis (by the bladder, intestines, colon, ovaries) or anywhere in the body (the brain, lungs, etc.). These uterine cells act just like uterine cells in your uterus, each month they bleed, but unlike uterine cells in the uterus, they have have no way to escape the body. This can cause a buildup of nodules and cause scaring.

When I first read what was going on in my body I was like “&^%$! No wonder why this hurts so much!” But the interesting thing is some women with endometriosis don’t exhibit any symptoms, and the amount of pain you feel does not correlate to the amount of nodules and scaring you have. A woman with  stage one endometriosis (little scaring) can have tremendous pain, while another woman with stage four (a lot of scaring and adhesions) won’t necessarily exhibit any symptoms and might not find out she has the condition until she is trying to get pregnant.

That’s the other real downer to endo. Apart from the pain, roughly a third of women diagnosed with endometriosis are also infertile. Talk about adding insult to injury.

Why is it important to know about endometriosis?

Roughly 10% of women suffer from it, but very little is known about endometriosis and it’s often misdiagnosed. Even as recently as a few decades ago, women were told their painful symptoms were in their head OR that being in constant pain was just a natural part of being a woman (What the what?!). Not only was that incredibly unhelpful and alienating,  it also prevented any research from happening.

The Endometriosis Foundation of America works to bring awareness to this condition and toward finding a cure. As of now, women can have surgery to remove these painful nodules, but it isn’t a cure. Sometimes the surgery helps, but more often than not, more adhesions develop and women suffering from endometriosis have multiple surgeries throughout their lifetime.

Endometriosis Foundation of America founders: Padma Lakshmi and Susan Sarandon with Bridget Moynahan (photo credit).

Thanks, you guys, for letting me bend your ear about this stuff. It means the world to me if you just gave this post a little read and know a bit more about this pervasive condition. Feel free to click the donate link below to contribute to the Endometriosis Foundation of America if you so choose, but know I’m just as grateful that you took a minute to read this post. Spreading awareness is the first step toward helping us become even more educated about our bodies.

Donate to the Endometriosis Foundation of America:
Click HERE to safely and securely donate through paypal.

And a big thank you to Diane of Snapshot Fashion! Thank you for organizing this fundraiser, Diane and sharing your story with us!