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.
Do you live in the San Diego area? Are you active or retired military or a dependent of someone who is? And do you want to learn about Endometriosis, treatment options, and how to cope with the disease?
Soooo…I’m 40 now. And for my birthday, my gyno had me run to get a mammogram. My baseline mammo. My first. Ever. I’ve had an aunty diagnosed with boob cancer, so I take my boob-health very seriously.
All I’ve ever heard were horror stories of pain and discomfort and smashed-thin tatas. “Take an Ibuprofen about an hour before the appointment,” I’d heard from various well-experienced womenfolk of mine.
Did I? No. I completely forgot…Crap.
So how was it?!?
I checked in about 20 minutes early and was given a wrist band with my identifying info (which I forgot I was wearing ’til 9:00 that night). I was then escorted to a room with a wall of lockers and an opposite wall of dressing rooms, asked to disrobe from the waist up, and to put on a thin (yet comfy) bathrobe. My sweater and bra were locked safely away in a locker (the key was secured to a bracelet around my other wrist) and I was asked to wait in a lobby nearby. There I sat for another 30 minutes with various gals of various ages, all of us wearing bathrobes, and either reading magazines or perusing smartphones. “For the comfort of our patients, no gentleman allowed” read a nearby sign. It made me smile.
“Lisa?” My name was called by a short, portly woman and she explained she was my mammogram technician and walked me to another room…where I saw a machine similar to the one pictured above. Okay…I don’t know what I expected, but not that. While she explained the procedure, and calmed my fears of “is it going to hurt much?” I tuned out and just wondered where my boobs went on the machine: On the black surface? In the little plastic basket? WHERE? What’s the clear window for? Well…I learned quite quickly:
If you’ve never had one before, here’s what to expect (at least what my experience was):
Pop your right arm out of the bathrobe, so that the right half of your torso is exposed;
Stand facing the machine.
The technician will adjust the machine to place the black tray at your under-boob height.
Here’s where it got fun. The technician moves your body around a bit so you’re positioned on the black tray with the right boob. The clear shield? “Turn your face toward me and push your face up against the shield.” The right side of my face smashed flat against the plexiglass window and she fondled my boob into place. If you’ve ever photocopied your face before…you know the feeling (well, maybe not of the technician placing your boob at the correct angle)…My first thought? “Oh, her hands are WARM!” The next thought? The black surface of the machine was ALSO warm. Perfect.
“Don’t move.” The technician left me there, in an awkward pose, as she stepped behind their protective computer wall thingy. “Breathe like normal,” she called, while the machine made a few noises, gently smooshed my boob, and it snapped a few images. “Take a deep breath and hold it,” she called out as the machine snapped a few more images. “Aaaand…breathe.” All the while, a fancy-schmancy portion of the machine spun above my stationary boob and took the images. Was kind of soothing to watch as I waited for the tech to finish.
(IT DIDN’T HURT AT ALL)…
I repeat, IT DIDN’T HURT AT ALL! “Um, was that it?” I asked. “Wearing my bra is more uncomfortable than that…” The only discomfort I had from the machine was where my ribcage met the black surface- an unfamiliar pressure as I leaned up against the edge of the boobsmoosher machine.
Wash, rinse, and repeat for the left boob. Again, no pain.
The actual mammogram portion took less than 10 minutes…maybe even closer to 5 minutes.
And that’s it! She advised me that the radiologist would look at the images that afternoon and I would be receiving a letter in the mail in 7-10 business days.
I nearly shouted in excitement how it didn’t hurt one bit and there was so much hype that I was ready for catastrophic pain. She shrugged, smiled, and said “It’s never hurt me either.”
My theory? I either got a REALLY gentle machine that cared about the well-being of my boobs, or a technician who placed them super-carefully, or my boobs are less sensitive than other women, or small tatas hurt far less than big boobs on the smoosh-machine.
My mum had me look into the mammograms they do these days where you don’t have to get smooshed. I called around; my insurance only covers the smashable boob machines. A few non-smashable mammograms are available in San Diego, but only for women who have been diagnosed with aggressive boob cancer and need extra special eyes and images.
The tech advised me that mammograms are a yearly occurrence. Do I look forward to doing it again in a year? Sure, why not? I get to wear a comfy robe, stare at my phone for a while, and have warm hands on my tits. Going to the pap smear is far more uncomfortable for me than a mammo. And the hour-long wait in traffic to get home was even more painful.
Oh…and a word of advice: if you do schedule your mammogram set it for the warmer months! She said in the winter the machine surface doesn’t retain heat and it’s REALLY COLD. So, I’ll be doing mine in the spring/summer months in the future!
And next year? Next year I get to have my first colonoscopy…stay tuned!!!
I hope you’ve having a GREAT day! If you’ve had a mammogram, I’d LOVE to hear your thoughts! What made it particularly awful or great? Drop me a comment below or shoot me a note. And here’s to hoping my experience dulls some fears if you’ve got an upcoming first boob-smoosh appointment.
Free workshop on endometriosis and pelvic floor dysfunction – how do they relate and why should you include a pelvic floor PT in your team?
Saturday, June 22, 2019, from 2:15pm – 4:15pm at the Mission Valley Library’s Community Room; 2123 Fenton Parkway in San Diego, California.
At this workshop, Jandra Mueller, DPT, of Synchronicity Physical Therapy will be discussing the role that the physical therapy plays – or should be playing – in your care. Jandra will discuss what the pelvic floor is, its functions, as well as treatments that may also benefit women suffering from endometriosis such as painful intercourse, “interstitial cystitis,” irritable bowel syndrome “IBS,” and small intestinal bacterial overgrowth “SIBO,” as well as the importance and tools to regulate the central nervous system. Jandra would also like to answer any questions you all may have regarding pelvic floor physical therapy! She has been working with women with endometriosis for the past several years and has also been one of the many women to suffer from this disease, so she understands firsthand how frustrating this condition can be! Please come join us on June 22nd for this exciting event!
Seating is limited, so please reserve your spot today.
We here at Bloomin’ Uterus are VERY excited to be able to help bring this event to San Diego. Jandra is an incredible EndoWarrior and friend.
Free tickets are available on Eventbrite. You can also feel free to RSVP on Facebook, but please secure a seat via Eventbrite. We are limited to 100 seats. If you do not wish to register via Eventbrite or Facebook, please contact me and I’ll put your name on the list of attendees.
And to those that cannot attend, we will *try* to videotape it and share the link.
While not Endometriosis-related, I feel this story needs to be shared. It may help someone make a similar decision…and save lives.
A longtime friend of mine whom we shall call Johnny Doe recently had a terrifying experience that almost killed him. And, had he not eventually decided to go to urgent care…he’d be dead. He’s allowed me to share his tale here with the world .
So, pay attention to your bodies. And do get medical care if you need it…I’m glad Johnny is still with us today…and has a renewed passion for living. Stay with us for a long while longer, Johnny. ❤
So here’s what happened. I had been sick for the past 3 or 4 months. Possibly longer. I thought I was just getting a series of colds and flu. But it slowly got worse. I started eating less because food just became gross. I lost 30 lbs. I became increasingly physically exhausted. I started having an increasingly difficult time thinking… things stopped making sense. I started getting these very intense shivers, like I was freezing cold, and then i’d vomit. That started happening increasingly often, and when it became a couple times a day, that’s when I decided to go to urgent care.
By this time, I could barely walk, because of exhaustion. I guess I looked like death, because they took me back quickly. Blood test showed that my sugar was over 500 (i’m diabetic) and that my kidneys had stopped functioning because of a very severe infection. By then, I was kind of out of my head, and things happened fast. The catheter bag had a small amount of dark red urine and nothing more coming out, and so they decided I needed dialysis. So those months of colds and flu that I tried to ignore, was actually me being poisoned by my blood because it was no longer being cleaned by my kidneys. My blood had effectively stopped bringing energy too.
I do not remember getting the hemodialysis catheter put in my chest. I just looked down, and I had tubes coming out of the right side of my chest, and a couple extras in my forearms and in my right thigh. When things happen out of my control, I tend to go along with it. So I was in the mindset of do what you have to do to get through. But even then, it was like getting slapped by a buick. I was stunned.
It wasn’t until hours later, when I was in the hospital room, that all the discussions with the doctors started to really sink in. My kidneys were dead, and my life was dialysis to stay alive. I panicked pretty bad, and got really depressed. What was I going to do for work? Could I work on my car anymore? What is my life going to be like now? I was in the hospital for 2 weeks, while they tried to get a handle on the infection. They even thought it was cancer, I had a lovely and very painful bone marrow biopsy done. Came out ok.
To be totally honest, I enjoyed the hospital stay. No stress of work or home, got to lay in bed and sleep all day, food was brought to me. I eventually was able to eat some of it too. I was stunned that I had no energy. I could barely stand up. I basically had to build up the strength and energy to walk. That really knocked me for a loop. I got healthy enough that they sent me home. After the second day, I started vomiting and shivering again, so I went to the emergency room. The infection returned with a vengeance, and put me back in the hospital for a couple of days. New super antibiotic, and I started feeling better.
I now go to a dialysis clinic. It was 3 times a week for 4 hrs a time, but has been cut to 2 times a week, for 3 hrs. It’s not bad. Nice, friendly people there. You sit in a recliner, and they connect a couple of tubes from a machine about the size of a filing cabinet to the tubes coming out of my chest. Then you lay back, and watch TV. I bring a laptop and read some internet and then nap. It doesn’t hurt or anything, but I sometimes feel some weird random light cramps. Considering my blood is being pumped out, cleaned, and pumped back in, i’m ok with it.
My time was cut back, because my kidneys started working again. I’m currently at 30%, and if they continue to improve, I won’t need dialysis again. I’m what’s called “acute failure”, meaning my kidneys didn’t fail from genetic problems, or over use or abuse, but from an outside cause… an infection. I’m one of the very,very lucky few. I suspect they’ll fail eventually because of diabetes, but hopefully in the far future.
To be honest, this whole experience radically changed me. I smell and taste things differently now. I eat healthy and love it. I now have a desire to take care of my health, and I lost a lot of fears about the future and getting older. I faced a lot of things I was running from. I was terrified of dialysis, but I learned to accept it, and now i’m extremely grateful for it. It’s a wonderful, incredible technology that can literally save your life.
There’s a site available where we can now look up our physicians to see what they’ve been paid by companies for their time at speaking engagements, travel, training, and even research.
Why is this helpful?
It might not be. But it’s a wonderful way to get a snapshot of what companies may be lining the pockets, and possibly influencing the choices, of your doctor. (Yes, that’s the conspiracy theorist in me coming out).
Open Payments Data is run by the Center for Medicare and Medicaid Services has a searchable database where you plug in your physician’s info and it brings up their data for the past few years. Or you can search by company! According to CMS, the site was created “to provide the public with a more transparent healthcare system.”
For example, the image above is a breakdown of the top 10 physicians paid by Abbvie, Inc. in 2017 for speaking at events, consulting fees, grants, royalties, education, travel, food, and lodging.
A further breakdown of payments is available, telling you how much a physician was paid for each category (speaking, food, lodging, etc.). If you have questions about what the payments were for, it’s best to reach out to your physician and ask. The site doesn’t provide specifics; just data.
I’ve already looked up my excision surgeon, my colorectal surgeon, my primary care physician, and a few other surgeons I’ve heard of. It’s been fun! Have at it…and strike up a conversation with your physician if you feel so inclined.
Here’s the 2017 general payments breakdown for my excision surgeon, Dr. Mel Kurtulus:
And here’s the 2017 general payments breakdown for a popular Endometriosis physician down here in San Diego, Dr. Sanjay Agarwal:
Notice the difference? I sure did…
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa