One year ago today, I had my bowel resection surgery to remove to visible lesions of Endometriosis off of my small intestine. A section of my right intestine, as well as appendix and cecum were also removed. All biopsies came back as Endometriosis, including microscopic Endo on my appendix, and cecum.
I documented my healing process with photos! If you follow my personal page on Facebook, you already knew that. BUT I made a one-year anniversary video of my healing process!
How has my quality of life been since my surgery? Once my body recovered from the trauma of the surgery, it’s been pretty awesome. I mean, I’ve had to make some adjustments to diet, monitor my alcohol intake, stumble along the way.
BUT…I haven’t endured a single painful poop since my surgery! In the past, it’s felt like I poo’d glass and razor blades and barbed wire. The guts felt like they were packed with the sharp objects and just cutting along the interior as I poo’d.
That is long gone. Good riddance. Never come back.
I cannot say it enough: Thank you Dr. Schultzel and Dr. Kurtulus for your expertise, professionalism, and genuine desire to help your patience!
And my words of advice to you? Always track your symptoms. Write them down. Voice them to your doctor. Bring in copies of your pain journal. Find a doctor knowledgeable in Endometriosis and excision. Pursue answers and proper treatment!
Here’s to hoping the rest of my body stays Endo-free, too…
If you’re in the Southern California area and need a colonscopy, may I recommend The Endoscopy Center in Encinitas with Dr. Seeger? Everyone there was incredible and super friendly! What I was afraid would be a painful experience wasn’t painful at all. And it was sooo easy. Truly the hardest thing is drinkin’ the bowel prep and enduring a few hours on the toilet.
Why did I need a colonoscopy at 40 years old? My colo-rectal surgeon sprung it on me: one is needed a year after a bowel resection; just to make sure everything is okay inside.
Okay, on with the findings: a small polyp was discovered inside my sigmoid colon and removed for biopsy. The rest of my guts looked great! Wanna see?
My favorite thing I learned from your colonoscopy? I still have my ileocecal valve! I thought that bad boy was removed during my bowel resection. Seems like I still have it, according to the photos! I’ll ask my colo-rectal surgeon when I see him. Yay! And I like that they could see, and photograph, the section where my guts were stapled together!
Thursday night’s bowel prep was…a lot. I thought I poo’d a lot for my November 2018 bowel resection? Oh my god…I poo’d 32 times. Thirty-two!
And Friday morning’s prep? I crapped 41 times! Including 20 minutes before the camera went up my bum! Apparently my rectum is competitive and had to beat the record from the night before. One day I’ll log the times, etc., but not today.
The plan? Wait for the biopsy results, discuss with my physician, and have another colonoscopy in five years!
A huge thanks to The Endoscopy Center crew for making my first colonoscopy wonderful: the receptionist, Tanya, the nurses (Elaine, Allison, and Lia), and Dr. Seeger. I wasn’t gassy or sore or bloated or anything I feared afterward. It was truly a pleasant experience (well, except for the prep ha!).
PS – if you’re ever afraid that you’ve still got some liquid-poo inside your guts and you’re going to just poo all over the staff during your colonoscopy, rest assured: they’ve got suction at the end of that li’l camera! It was my one big fear; and they alleviated it by explaining the suction! YAY!
Over a year ago, you may remember we shared a sneak peek of a project we were involved in: Stronger than Endo. We interviewed a few women with Endometriosis, as well as my excision surgeon.
Well, my friend Exxes has completed and released the first of the three full-length videos. This one is an interview with my beautiful friend, Merritt.
It’s about 50 minutes of her Journey with Endometriosis. Her spouse, Jess, pops on and offers the perspective of a partner with endo. It was a long, rough, but beautiful morning for all of us, including Exxes. We also discussed what we, as individuals and a community, can do to help others. Raise awareness. Be there for one another. And don’t be afraid to share your story with others.
Thank you Merritt, Jess, and Exxes, for making yourselves available, vulnerable, and for allowing this to happen. I love you guys.
Here’s the video! For some reason, it starts close to the 2-minute mark; you may want to rewind it a bit when you watch it. Enjoy and share!
And, please stay tuned. As soon as they’re available, we’ll be releasing the videos of another EndoWarrior, Heidi, and my surgeon, Dr. Mel Kurtulus.
It’s with great pleasure that I’d like to announce that Bloomin’ Uterus has partnered with the local San Diego-based non-profit, Gifts 2 Help, for 2020’s Endometriosis Awareness Walk.
Not only is Gifts 2 Help a local organization, but it’s run by a fellow EndoWarrior! Amy started Gifts 2 Help in honor of her mother who passed away in 2007 as a way to continue her legacy: helping those in need however she could. Ongoing projects include an annual CHP Appreciation Day, EveryDay Heroes Appreciation Day, and Christmas Miracles. There are many more projects that Amy would like to take on through Gifts 2 Help, and I was thrilled when she suggested helping with our annual walk.
Donations toward the costs of the walk (and expenses of any future events) will be tax-deductible! All donations that Gifts 2 Help receives on behalf of Bloomin’ Uterus will go into a separate account, the funds to be exclusively used for our future walks, events, workshops, and projects!
Together, we’ve recently secured the City of San Diego permit for our March 28, 2020, Endometriosis Awareness Walk at NTC Park at Liberty Station! So, it’s official!! Expect a registration page and details soon! But please do mark the date on your calendars!
Thank you, Amy, for your passion to help others, even as you have your own battle to win.
So, over the past two months, I’ve been experiencing some bleeding when I poo. I’ve taken several first aid and civilian medical classes, so I knew it wasn’t anything to worry about: the color and texture was well within the “don’t freak out” range.
I noted these incidents on my food & symptom journal and booked an appointment with my PCP to discuss and get a possible referral to my PoopChute doctor.
Although I blog about poo and guts and all kinds of other lovely and taboo things, going into the doctor’s office to actually have them examine my bunghole is not my idea of good time. It’s even more horrific than having to buy pads or tampons when there’s only male cashiers…although I finally grew out of that trauma in my 30s.
Butt, I mean but, sometimes you just have to go to a professional and have them stick their finger in your but, I mean butt.
After a lengthy discussion of my symptoms, my diet, my fiber and water intake, and (lack of) exercise, there was the dreaded visual inspection and internal exam. Nothing abnormal was seen or felt, and I received the referral to my colo-rectal surgeon with the suspicion of tiny hemorrhoids or a possible recurrent fissure. And my PCP, Lauren Campagna, is freakin’ amazing and always makes me feel at ease.
A few weeks later (aka this past Wednesday), I repeated the process with my colo-rectal surgeon, Dr. Matthew Schultzel. I feared I was wasting his time. He did major surgeries, like my bowel resection. And here I was asking him to examine my bleeding arse. He assured me that this was a huge part of his practice and that I wasn’t wasting his time.
We talked about my symptoms and diet, he examined my incisions and pushed on my guts to check on my post-op healing, and then we got down to the real nitty-gritty.
He slipped on a headlamp, I assumed the position, and it truly wasn’t as uncomfortable as I’d imagined. First was the finger exam, followed by the clear duck-bill lookin’ device that taunted me from the exam room table (I later learned it’s called a proctoscope!). Again, it wasn’t too uncomfortable. It was awkward, but there wasn’t any pain. And Dr. Schultzel’s constant reassurances and jokes made the awkwardness far less than it could have been.
Lo and behold, I’m an overachiever: I have three various-sized hemorrhoids inside my guts. THREE! And a tiny skin tag, likely the remnants of a prior hemorrhoid.
The plan? There’s an in-office technique known as band ligation.
“Like rubber bands on a pig’s balls?” I asked.
“Exactly,” he laughed, and said he usually reserves that example for his Texan patients. Score one for growin’ up in Arizona!
So, I go in on July 31st for the fist of my three banding procedures. He’ll be slipping a tiny rubber band around the base of one of my three stowaways..and in several days it will just fall off. I’ll bleed or spot for a bit. Then 4-6 weeks later, repeat the process. Then repeat it once more! BUT his office is currently checking on the latex-content of the bands since I have an allergy…hopefully there’s an alternative if one is needed.
I most certainly don’t strain when I poo. Everything just kind of falls out easily since my surgery. And I drink A LOT of water all day, as well as take a fiber supplement every morning. So why do I have hemorrhoids? And three?? He let me know that it’s not uncommon for the body to go through weird changes after a bowel resection. I’ll take that theory!
So if you ever find yourself poo’ing and finding blood on your toilet paper: please contact your doctor. There are MANY different causes for bloody stool. And it should never be taken lightly.
That being said: it’s poop. And poop is embarrassing. And nobody wants to talk about it. But, as a friend of mine said to put my mind at ease, “Remember that your doctor purposely spent years and years and many thousands of dollars for the honor of looking up your bunghole. Whatever happens, it’s his privilege to experience!” So, talk to your doctor!!
I’d love to hear about your experiences! Feel like giving me a little insight into your poopchute? Have you had fissures or hemorrhoids before? How’d it go? Do you use something like the Squatty Potty? Or what’s your favorite fiber or stools softener? Share with the class 🙂
Written by Heidi Baurmann, Speaking on behalf of all of our Bloomin’ Uterus sisters.
It is with a heavy heart that I announce one of our own has lost their battle with Endometriosis. Kristen Lynn Cavanaugh will always be a part of our Bloomin’ Uterus Sisterhood.
Kristen found me on Facebook in March during Endometriosis Awareness month. In the little time I knew her, it was obvious what a strong advocate she was for us all, sharing her story openly with the community & supporting chronic illness sufferers.
On Wednesday, June 27th, I was devastated to hear the news that Kristen had lost her life due to medication complications (the medications are listed at the end of this blog entry). It feels so unjust to loose a sister this way. Kristen’s friends and family are focusing their energy on spreading awareness in hopes to help others who are suffering in pain.
In loving words, her mother writes, “Kristen had a passion for helping those with chronic illnesses, and through her small business of health care products, she reached many women who suffer with endometriosis and fibromyalgia.“ Here is the link to her obituary. https://horancares.com/obits/kristen-cavanaugh/
Her dear friend opened up to me about her great sense of humor & expressed that what she “loved about her was how selfless she was. She quit a 6 figure job at DISNEY, to make boxes for each endosister. She carefully thought of each item while adding them to the boxes. She had such a big heart.”
Her family is asking for donations to the Endometriosis Foundation in her name. (There is a section where you can state who you are donating for.) http://www.endofound.org
Here are the links to her Instagram endo page as well as her personal page, if you would like to say some words on her behalf. @witsendocornerapothecary @forkristenforeverago
Kristen will always be remembered in our hearts as a woman who fought hard & gave back. I hope you are looking down at all of this love and smiling. We send love to her family & all those who are feeling her loss.
Update: July 9, 2019: Suzie, Kristen’s mother, has given us permission to share the medications that Kristen was prescribed, which may have contributed to her death. We are sharing this information with you to implore you to verify with your physicians (and do your own research) regarding any potential drug side effects or interactions.
On June 24, 2019, Kristen was prescribed Dilaudid, Valium, Xanax, and Ambien. Suzie wants to stress to you that these medications, if taken together, can cause respiratory distress. Kristen and her family were not made aware of this danger. She would like to remind each of us that, “combining those meds is very dangerous.”
If you’re worried about your multiple over-the-counter drugs, prescription drugs, and/or herbal supplements having potential risks (or even death) when taken together, please talk to your doctor. And you can check out drug interactions on this amazing database.
Friends of mine, Raul and Yuliya Montes, have started a small company creating and selling natural bath and beauty products (and a few other things!). I’ve purchased and fallen in love with several of their items and wanted to sit down and pick their brains for a few minutes and share the news about Special Flower Oil, Co.
…pssssst…they make CBD oil bath bombs…
Looking for all-natural bath bombs, soaps, lip balms, and more? Read up a bit on who these guys are, what they make, and then go peruse their wares!
Lisa: Special Flower Oil, Co.? That’s a great name! How’d you come to be?
Yuliya: We have this inside joke between the both of us that we’re a bit “special” two peas in a pod and all, and we came up with this saying “You’re my ‘special’ flower,” when one of is being a little on the – well… less than intelligent side. We always knew we wanted to own our own business, and at the same time wanted to do something that we both enjoy that benefited other people that we could do together – so one day while taking a shower together, we noticed how many ingredients were on some of the items – and we decided to work on something more natural.
Raul: It pretty much started with this weird rocking side to side, that kind of evolved over time. Our company name is literally our way of making fun of ourselves and each other, even though people outside, likely think that it has to do with the oils we use and such. As far as the start – we woke up one morning thinking, “wouldn’t it be nice to quit our day jobs do something we enjoy more?” Well, we haven’t quite quit our day jobs, but we’re doing what we enjoy.
Lisa: What do you feel sets you apart from the endless stream of competition out there?
Yuliya: We do hours of research over every single ingredient that we use, we refuse to take shortcuts. We believe that we need to be producing a product that we, ourselves would use before selling it to others, and having integrity in the ingredients that we use.
Raul: I think it’s unique that you’ve got a small business co-owned by a married couple, one being a woman, one being an OIF war vet. My background is in combat medicine, and in that I’ve discovered that improvised treatments and at times alternative treatments can have huge impacts on quality of life. Aromatherapy in and of itself isn’t just about chakra crystals and weird blessings, there’s some solid science behind it, including cognitive improvement in Alzheimer’s patients who have used rosemary, lemon, lavender and orange.
Lisa: As a person who suffers from a painful chronic illness that is often influenced by chemicals, parabens, and hormones, I appreciate your dedication to pure and body-safe ingredients in your products. I see you guys use organic and locally-sourced ingredients. Why is that important to you?
Yuliya: Back in 2013, I was diagnosed with Hashimoto’s – an autoimmune disorder that attacks and destroys the thyroid, and because of it I will be on supplemental thyroid hormone for the rest of my life. The more I did research, the more I found that body care products are ridden with harsh, endocrine-disruptive chemicals, affecting the body – and being a woman, I was using these chemicals all over my body. I threw out a lot of my stuff and began seeking out items that were natural or organic – but these are expensive, so I decided to make my own. I mean, with the skin being the body’s largest organ, and it absorbs a lot (up to 64% of contaminants from water alone), it’s easy to see that what we use on our skin ends up in our bodies – often in our blood streams and lymphatic systems, and it seems like the majority of mainstream body care products contain a horrible cocktail of carcinogenic chemicals, allergens, and irritants. Knowing who makes our ingredients, knowing how they are sourced, and using them ourselves first, always ensures that we’re creating the perfect product.
Raul: I completely echo everything Yuliya said. I think that knowing where an ingredient is from, how it’s sourced, and having a relationship with the ingredient producer is important. Case in point, our Goat Milk, Honey, and Oats soap uses organic goat milk and oats, and raw honey from a local beekeeper, who also happens to be a fellow combat medic. Up to that point I’d never had fresh raw honey – and my god does it taste amazing. These are just glimpses into the items that we’re using in our soaps and bath bombs. I want people to feel as good about the product and the way it’s made as they do while they use the product.
Lisa: A lot of our readers suffer from chronic pain. I see that you have “hemp isolate” bath bombs; can you tell us a little bit about what that means…and how your bath bombs may help someone in pain?
Raul: CBD. It’s CBD plain and simple. I’ll be really honest – its really hard to sell items online that contain them, regardless of the farm bill passing. As such I wanted to make sure it was something that if someone said, “oh what is hemp isolate powder,” that they could type it in and the first thing they would see is CBD. We’re covering ourselves while trying to afford a completely legal and THC free item to those who need it.
don’t entirely know how CBD works yet, they think that it interacts with
receptors in the brain and immune system. Moreover, it helps as an
anti-inflammatory as well as can help those who suffer with chronic pain, and
associated insomnia without adverse side effects. Now – when its combined with
other anti-inflammatory and pain relief oils such as lavender, yarrow,
eucalyptus, and chamomile – and of course Epsom salts, it creates a beautiful
pain relief cocktail that you can literally just envelop yourself in. I’ve also
got some CBD soap curing right now that I whipped up earlier today using the
goat milk oats and honey base. I’m excited to use it!
Yuliya: CBD is nature’s way of affording us a pain relief option that doesn’t involve using drugs, while being able to indulge in the experience. Imagine it, you pour a hot bath, enjoying the hot steam – you toss in one of the bombs and soak for a half an hour, letting your skin absorb these pain relief oils and CBD… Oh you’re ready for painless sleep.
Lisa: If someone doesn’t want a “hemp isolate” bath bomb, do you offer them the option?
Raul: Of course, we understand that CBD is still considered one of those edgy, experimental type of products – because of that we have the same bath bombs and soaps completely hemp free.
Yuliya: All of our products are customizable. If you see an item of ours that has hemp, and you want a hemp free version, just reach out – we’re more than happy to make custom products.
Lisa: I’ve gone through numerous pain management and stress-reduction workshops over the past five years and I’ve learned that sometimes to help reduce symptoms and pain, we need to try to calm our nervous system. Take a moment. Breathe. Meditate. There’s a great connection between pain and a heightened sense of “FUCK, EVERYTHING HURTS (and I wanna die!)”. That being said, I know you make scent roll-ons. I’m partial to the “Palomar Skyline” blend as I find it very soothing, calming, and the scent jettisons my mind up into the mountains. Are your essential oil roll-ons intended to aid in relaxation and calming techniques? Or just smell good? How can your customers better use your roll-ons to help calm and de-stress, both physically and mentally?
Yuliya: Absolutely, I deal with constant anxiety. I’m currently testing an experimental mixture that I’ve named “Natural Xanax,” Which I use pretty regularly to reduce my overall stress levels. Our oils are designed to both smell nice (and not overpowering) while helping the customer come off the proverbial edge. They also work amazingly while meditating. Our goal here was to help the customer find peace in the moment.
Raul: I’ve got some that I’ve made just to act as a cologne, such as the GWOT Christmas, but by in large the scent oils are designed to help center someone. Dealing with PTSD, I’ve learned that sometimes a couple of dabs of the Palomar Skyline can help pull me out of a moment – whether its dealing with chronic pain due to spinal compression (or a recent shoulder surgery), or dealing with the existential hell my mind likes to throw me into. I always recommend using the oils on pulse points – or if you so choose, diffuse them, close your eyes, and focus on the smells. As odd as it sounds, I personally practice a verbalization of what I “see” when I close my eyes and focus on the scent. It really helps to pull me out of the mind-storm and places me on a mountain, in a lavender field, or in an orange grove…
Lisa: Do any of your roll-ons have pain-relieving capabilities? My Mum buys me an essential oil spray that does the trick for acute pain. And a friend of mine gifted me with a roll-on that also helps with surface pains.
Yuliya: Yes! Like Raul said, certain oils have pain relief and anti-inflammatory properties. Rolling or dabbing them on the skin can help with pain and inflammation in addition to the calming nature of each one of the oils.
Lisa: I’ve read your soaps use goat milk and locally-sourced honey. Why is that better than ingredients that may be found in other soaps (handmade or otherwise)? Sell me on their magic!
Raul: Goat milk alone is an amazing item. It contains Alpha Hydroxy Acids that help to unbind dead skin cells from the surface of the skin, giving a more rejuvenated look, vitamin A, which has been proven to reduce lines and wrinkles, cream – which keeps the skin moist (especially during those winter months) and minerals like selenium, which has been praised in recent years for its ability to prevent skin cancer.
Then honey helps to
balance the skin’s natural bacteria, helping to reduce the appearance of acne,
as well as speeds up the healing process of the skin.
Combined they can help with eczema, psoriasis, and even candida overgrowths on the skin.
Lisa: I’ve never made soap before and imagine it’s much like making Jell-o: throw everything in a bowl and *tada* I have soap in a few hours. I know that can’t be true. So… how what all goes into creating a handmade bar of soap? Help me appreciate the process and effort, please.
Raul: Soap can be a real pain in the ass to be honest. It starts off with research and figuring out what items I want to use to make a soap – for example, if I want to make a beautiful swirly soap, I need to use canola oil, keep out the shea butter, and make sure my fragrances and essential oils aren’t going to accelerate the saponification. The next part is selecting my fats – which are oddly enough, often the same oils we use for cooking – coconut, canola, sustainable palm, olive, and the like – melting them down and mixing lye (yes lye) with either distilled water or goat milk (which has to be frozen to avoid curdling). Once lye mixes with a liquid, it creates a lye solution which is the basis for *all* true natural soaps.
Let me restate this:
all real soap is made with lye – anything without it is a detergent and not a
soap. Yes! Real Soap is made with lye. You might wonder where the lye is on the
ingredients list of your favorite soap – “saponified oils of –“ or sodium
followed by cocoate, palmate, palm kernelate, tallowate, or olivate. Soap
makers know that people are afraid of the word “lye.” None remains in the
The lye is then blended with the oil, it begins something called “trace.” Trace is the point in soapmaking where the oils and lye have emulsified and the lye begins saponifying. Once this happens the lye and oil molecules combine and are chemically changed into soap and glycerin. From this point it’s put into a mold for a few hours or days, then cut, and left to cure for four weeks.
Lisa: What’s been your favorite product to make?
Yuliya: Soap! Always soap. There are endless possibilities – from scent combinations to oil combinations. Each one of our handcrafted small batches is completely beautifully unique in its own right, and it should be, because it reflects us as people.
Raul: Soap. It might be a pain in the ass, but it’s totally a relaxing activity for me, and I can design each bar as meticulously as I want to. I can’t draw. I can’t paint, so this is my art.
Lisa: Have you had any mad scientist concoction failures with any products yet? Tell us a funny story…
Yuliya: My first round of lip balm. It was horrible! It was rock hard. Completely solid. We ended up scrapping the whole batch because I was being stingy with oils. It was like trying to rub a candle on your lips.
Raul: My first round of bath bombs. Oh God, they were horrible. I’m not even sure where they went wrong… well the worse part was – I’d made two batches – the first was great, and we had gotten our first order when we’d opened the Etsy. Guess which ones got sent? Yeah… as soon as I realized, I contacted the customer (who thankfully hadn’t used it yet) and sent out another set of bath bombs free of charge. I mean, we saved the day, but it felt really dumb.
Lisa: Any sneak peeks at items you’re working on that aren’t released yet?
Yuliya: Massage candles, therapeutic body butters, tinted and flavored lip balms, face masks, and beard balm for the guys.
Raul: A few more soaps. I want to have seven main “flagship” soaps, and run a special “soap maker’s” batch once every month or so – which will just be a few of our “left-field” ideas thrown into action
Lisa: Do you take custom requests?
Not only do we take customer requests, we look forward to it!
Lisa: Anything else you’d like to add?
Our goal is to give back to the communities. We like working with 503s and other small businesses. We also have wholesale options (we make it, you sell it as your own).
A li’l more about Special Flower Co.:
Early in 2019, we were discussing the prospect of having a wedding reception, and began discussing what kind of party favors we would use. Initially we settled on bath items, like soaps, bath bombs, and scrubs, but after looking, we felt like nothing really fit the people who had always been there for us. There were plenty of quality goods out there, but none that were uniquely “us.”
That’s where Special
Flower Oil Co. began.
uniqueness are what make an item special. It’s the time taken to make a unique
item that isn’t mass produced and misleadingly called “handcrafted.”
It’s about the time and effort we take to perfect our art, whether that be the
scent in a bath bomb, the particular composition of a soap, or the one on one
focus on customer service.
We are Special Flower
Raul and Yuliya
NOT JUST ANOTHER “HANDMADE” BATH PRODUCT
Our products utilize top of the line organic, fair trade compliant, rain forest safe oils. Moreover, we source local products from goat milk to honey, as often as we can, utilizing veteran owned businesses where available. We also source our herbs from local, organic, pesticide free gardens – because you deserve to feel as good about a product’s background, as you do when you use the product.
You can find Special Flower Oil, Co. on the interwebs:
I want to extend a huge thank you to Yuliya and Raul for not only creating some amazing products, but for being the exceptional human beings that they are…and for taking the time to give us a sneak-peak into their lives and business. We wish you continued success in all endeavors!
*I was not compensated for this interview. It’s just something I wanted to do for them…and you.
My calendar has been reminding me every day this week that today is my five-year diagnosis anniversary…and I’m a maelstrom of emotions.
Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed.
Years of pain, telling my doctors, taking meds, cancelling plans, missing work, and accepting it as normal. And five years ago today, I learned the cause of my pain had a name: Endometriosis. I never would have received my diagnosis if it weren’t for a series of ultrasounds, a competent doctor whom I now cherish, and the appearance of a persistent cyst on my ovary:
Feb. 2013: pelvic ultrasound
May 2013: pelvic ultrasound
May 2014: pelvic ultrasound – possible dermoid cyst
May 2014: pelvic MRI
June 30, 2014: exploratory, diagnostic, and excision surgery! SURPRISE ENDO!…not a dermoid cyst.
Sept. 2014: pelvic ultrasound
May 2015: pelvic ultrasound
Feb. 2016: flexible sigmoidoscopy to check out bowels due to pain
May 2016: pelvic ultrasound
July 2016: pelvic CT
Sept 2016: 2nd excision surgery
May 2017: pelvic ultrasound
August 2017: pelvic ultrasound
May 2018: pelvic ultrasound
June 2018: pelvic ultrasound
July 2018: 3rd excision surgery (Endo remained on small intestines to be dealt with ASAP by colo-rectal surgeon)
Nov. 2018: 4th excision surgery and bowel resection
April 2019: pelvic ultrasound
Pending July 2019: pelvic ultrasound to monitor a possible endometrioma…
The journey continues…and the spinning maelstrom of emotions also continue to fester: Sad. Happy. Angry. Vindicated. Excited. At peace. Hopeless. Blessed. Now with the possibility of the disease already being back already, add on: Scared. Nervous. Hopeful.
But my favorite part of today’s five-year anniversary? It led me to my Sisters and fellow Warriors, has given me new friends, and it’s brought me so much closer to my family. Endo given my a voice and purpose. It’s united all of us: Warriors and our Support. And we all fight together…not only for our own survival, but for one another.
Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!
I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.
The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.
It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.
I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!
The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.
As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)
From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).
The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.
I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.
So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them.
I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.
Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!
The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)
I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.
In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).
I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.
On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?
The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.
At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted
Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:
On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?
The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.
In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.
In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.
In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.
On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.