Our friends at the Endometriosis Family Support Group will be hosting a free screening of the EndoWhat? documentary with a live chat room so participants can discuss the film as they watch it together!
Want to attend? It’s going to be on Thursday, May 30, 2019, at 6:00pm PST. You must register online to get access to the webinar. Register now before you forget!
I started mine off my locking my keys in my Jeep. Ha! A great way to start a holiday weekend. 🙂 So, I calmly called AAA and waited for their tow truck driver to swing on by. 15 minutes later (and a lot of frustrated grunting from the driver) and my vehicle was opened and I was reunited with my precious keys.
How’s your day goin’?
Today’s rocky start led me to today’s quote. May it give you a bit of peace and insight, too:
“Maybe it’s not about having a beautiful day, but about finding beautiful moments. Maybe a whole day is just too much to ask. I could choose to believe that in every day, in all things, no matter how dark and ugly, there are shards of beauty if I look for them.” ― Anna White, Mended: Thoughts on Life, Love, and Leaps of Faith
May you have a wonderful weekend, regardless of what’s going on. But if you do need someone to talk to, you know I’m right here for you.
Blogs I Updated This Week:
Bladder & Endometriosis: added a May 2019 study of a 40-year-old woman who suffered from two years of right flank pain. After several tests and imaging studies, she was found to have an Endometriosis lesion inside her right ureter.
It’s a tattoo on my back. It’s the state motto of Kansas. It’s engraved on a plague at the Apollo 1 launch site, honoring those who fell. It’s used on Pall Mall cigarette packages.
What the heck is it and what does it have to do with Endometriosis???
“Ad astra per aspera.”
Many years ago (yes, before my Endo diagnosis), a friend helped me find myself once more. I had been lost and floundering and he pulled me out of a deep, dark pit. He came to visit for the weekend to make sure I was okay. Before he left, he wanted to make sure I remembered our long talks, our soul searching, and our discoveries.
It was to be memorialized in a tattoo. The only condition was whatever phrase we both chose, it had to be in Latin. So we scoured the internet for our independent phrases. And I found this one: Ad astra per aspera.
I’d seen it translated in two ways:
To the stars through difficulty; and,
Through thorns to the stars.
And I knew I had to have it.
When I was a little girl, I was molested by my grandfather on numerous occasions. While going through counseling as a young teenager, my counselor would have me draw and she’d analyze my drawings. One day, I drew a rose growing out of a fly-covered pile of poop. She reminded me that something beautiful could grow out of the worst, most disgusting, conditions. And that I was the rose.
The phrase reminded me of that rose. It encompassed my sexual abuse, my divorce, my losing myself. I could – no – I WOULD rise up. Through thorns to the stars!
And every time someone asks me about that tattoo, I have a renewed sense of strength. I can, and I will, rise to the stars.
And it’s made moreso relevant because of my Endo diagnosis. Through thorns, through difficulty, through a fly-covered pile of shit – we continue to reach up toward the heavens, the stars, to beauty and vast possibilities. Yes; that means you, too.
You are beautiful. You will endure. And you will flourish.
Always remember that.
…and to that friend from many moons ago, thank you. You know who you are…
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.
I hope you all had a wonderful week! Mine has had wonderful ups and laughable downs, but here we sit at the end of the week! Happy Friday!!!
Today I’m inspired by the tenacity of my fellow EndoWarriors. Women who have been handed a nasty hand of cards, yet continue to move forward, stand tall, and are not afraid to reach out for help or comfort when needed. Even on the downer days, wrapped up in a heating pad, popping pain medications, rubbin’ on CBD oil, or crying in a ball on the floor: that inner strength remains.
We lift one another up. Hold each other when we’re down. Fight for one another when the cause arises. We are a sisterhood. An army. A mighty force. We are incredible. And moreso with the bonds we’ve forged.
Dungeons & Dragons & Donuts: Added our January 20, 2019, adventure (Sorry we’re a little behind…). Find out how tabletop gaming can help people deal with a chronic illness, forge friendships, and disappear into a fantasy realm for a few hours once a month.
Endometriosis & the Lungs: Added a May 2019 publication of a woman who suffered from recurrent collapsed lungs NOT during her period; yet received a surgical diagnosis of thoracic endometriosis. Your symptoms do NOT have to coincide with your period. Also added another May 2019 publication of a woman who suffered repeat collapsed lungs during her period.
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.