For anyone who has met Magdalene, it may be hard to imagine her as anything other than an incredibly exuberant, passionate, and dedicated friend. But, for the past 10 years, Magdalene has been battling a host of mystery health issues, leading to chronic pain, and a steadily decreasing quality of life.
The good news is that Magdalene finally has a diagnosis and her first real chance at resolving the pain! There are more medical details and explanations posted below, but the most important part is that her doctors have decided that she needs to have surgery as soon as possible, and will be operating in less than a month, on June 5th!
The Short Story: Magdalene is constantly experiencing a lot of pain in her lower back and pelvic region, it makes everyday activities like walking and standing very painful. It was originally thought that these issues were caused solely by a traumatic car accident that happened 10 years ago, but the latest results show that her pain is likely being caused by Endometriosis.
While Magdalene does have health insurance through her work, there are a number of immediate medical costs associated with the necessary procedures and recommended 6-week recovery period.
Where does the money go?
Magdalene has a deductible of $2000 that she must pay on June 5th, the day of her surgery.
After the $2000 deductible, Magdalene will be responsible for an additional $5000 dollars of the total surgery cost. Any donations that bring the GoFundMe total above $2000 will go to the remaining out of pocket cost, as well as any unforeseen hospital bills or complications. Thank you for donating!
And if you are not able to contribute a donation of money but would still like to offer Magdalene support we will be organizing a Meal Train/Errand Train for her. Please check back here for updated information in the next few days.
(Psst, even though you wanted the short story, there's a reward at the bottom for you if can scroll that far.)
ALL THE NITTY-GRITTY DETAILS (AKA the Long Story from Magdalene herself):
A blast from the past:
For those of you who have known me a long time you may remember when I loved to:
· Dance to music (especially cheesy 80’s music. There was a lot of hair flipping and fancy hands.)
· Row Crew (This was my favorite thing. My. Favorite. Thing. Being in the boat, at sunrise on water like glass. Heaven! It even made me glad to wake up at 4 in the morning... well maybe not "glad"....)
· Take all-day adventure walks around Seattle. (I loved meandering from Queen Anne to Downtown to West Seattle and back, or up to The University District and down to Lake Union with a stop in Fremont to say hi to the Troll)
And then things got painful and all those fun things stopped:
10 years ago in, March of 2008, I was in a car accident, and started the journey of living with chronic pain. Immediately after this accident, I started experiencing 2 distinct kinds of pain, in the form of a herniated disc (that was discovered in an MRI in 2008), and Sacroiliac (S/I) Joint pain.
As both areas are located in my extreme lower back, they have made lots of movement painful. Running and dancing quickly became more difficult, and this pain progressed to affect walking, standing, laying flat, driving over bumpy roads, etc. etc. etc…
Because of this extreme and frequent pain, I changed a lot of things in my life: what I did, how I did it and how long I took to do it. Basically, life became harder and lonelier.
I saw a lot of doctors, A LOT. I saw every kind of back pain specialist (remember, we all thought the pain was just from the accident) I could think of. Sometimes, I had as many as 5 doctor's appointments a week. But they never could help me. Eventually, (seven years after the accident) I was able to get treatment for the herniated disc, but no doctor could help me with the S/I joint and pelvic pain.
It was frustrating. I had severe pain that was changing my life for the worse and yet no one could give me a diagnosis let alone treatment. So, the daily pain continued, and I did my best but life wasn’t very much fun.
Only recently did I learn that there was something else causing my pain and that I was seeing the wrong kind of specialists all those years (!). This was a great big surprise, a big surprise wrapped in pain!
A big surprise wrapped in pain!
Recently, I have experienced an escalation of symptoms and the introduction of new kinds of cyclical and debilitating pain. This alarmed my doctors and required me to have a bunch of painful tests and for 2 months this winter I thought I had cancer. The good news is that I don’t have cancer. The other good news is that this spurred me to do new kinds of research and seek out a new kind of surgeon. The exciting news is that I finally have a diagnosis for the pelvic pain and a new hope for the future.
It turns out that I have Endometriosis. The only way to cure Endometriosis is to cut it out surgically. So, I have surgery set for June 5th.
Through this process, I have done a lot of research and have learned that Endometriosis (Endo) is a badly misunderstood disease (even by doctors). Here are some things I’ve learned that I’d like to share with you:
· It turns out that the women spend an average of 9 years to get diagnosed with Endo. Even though they estimate that as many as 1 in 10 women are affected.
· The best research indicates that Endo is a genetic inflammatory disease.
· In their most destructive stages Endo cells grow like threads in the abdominal cavity and can bind organs together or to the abdominal walls or even perforate organs causing very serious issues. In rare cases, Endo can grow in places like the lungs, diaphragm or even the brain.
· Endo grows progressively throughout the patient’s life. The only way to stop it is to cut it out.
· Most commonly women are diagnosed with Endo, but occasionally it is discovered in men.
· Endometriosis cells create their own estrogen (so pain worsens during a woman’s cycle)
· One very common symptom is severe pelvic pain, including S/I joint pain.
Because Endometriosis is almost impossible to see on imaging most women go undiagnosed and are told that this is normal pain of being a woman. Essentially, women and their pain are often dismissed and minimized. Because the disease is so misunderstood women are told that it’s all in their heads or that they are weak and should just “walk it off”. In fact, a doctor did say that very thing to me. “It’s all in your head. Walk it off.” It can be a terribly demoralizing experience. So, like many women, I lost hope that I would ever have my life back. A life where I could walk freely and do normal things like date, stand at a concert, go camping, or row a boat…
This is why I’m thrilled to have surgery scheduled. It means that a doctor listened, and not only that but they validated my experience: Yes, you have a lot of severe pain. Yes, there is absolutely a medical cause for your pain. No, it’s not in your head. Yes, there is a cure. Yes, there is a pain-free future possible for you.
Here are some questions that you might have, or things you might have wondered about:
Magdalene, I’m confused, are you in pain from the car accident or from Endometriosis? Yes! This is confusing: to you, to me and to the scores of medical professionals I have seen in the last 10 years. Because the Endo symptoms presented at the same time I had the car accident, I spent all these years thinking that my pain was only from a car accident and had no idea that part of it could be coming from Endometriosis. But that was wrong, it was both: Herniated disc=Car accident. S/I joint pain and pelvic pain=Endometriosis.
So, Magdalene, your surgery is Excision of Endometriosis? Will your surgery entail anything else?
Yes, my Surgeon, Dr. Cindy Mosbrucker, will do Excision of Endometriosis at St. Anthony’s Hospital in Gig Harbor. This means that the doctor will go in and cut out the tiny (and not so tiny) Endometriosis growths everywhere she finds them. Excising (surgically cutting it out) is the only cure for Endometriosis and will prevent it from progressing.
This requires a very skilled surgeon. Many Gynecological Surgeons don’t do this surgery because it is so challenging. Only surgeons who do many, many of these surgeries and who have trained with experts are skilled enough to be successful.
I feel so lucky. I am so thankful that I was able to schedule surgery with Dr. Mosbrucker who is Washington’s only vetted Endometriosis specialist. In fact, Dr. Mosbrucker is in such high demand that initially, the first appointment I could get was all the way out in November. However, after seeing my test results Dr. Mosbrucker felt that my surgery needed to be escalated and could not wait. So, now I feel doubly lucky; to have my surgery in June and with such a respected and expert doctor.
And yes, I’m having a second procedure done by Dr. Mosbrucker on June 5th. In addition to Endometriosis which is likely causing my continuous pain and other symptoms, I also have an enormous fibroid in my uterus which has tripled the size of my uterus and is causing massive blood loss. Unfortunately, the fibroid is so large and positioned such that I have to have a hysterectomy. This is a difficult thing, an emotional thing, for me to wrap my head around. This means that I will never have a chance to have birth children. So even though I’m looking forward to a pain-free life in the future it is tempered with the knowledge that I’m losing something too.
How long is the recovery period for your surgery Magdalene? Because it is a serious surgery that requires the removal of an organ and the healing of multiple excision points inside the abdominal cavity the recovery is long: 6-weeks before I can return to work.
What will my donation be spent on? I have a deductible of $2000 that I must pay on the day of my surgery, June 5th. Your donation would go to cover the deductible first.
After the $2000 deductible, I’ll be responsible for an additional $5000 dollars of the total surgery cost. Any donations that bring the GoFundMe total above $2000 will go to the remaining out of pocket cost, as well as any unforeseen hospital bills or complications. Thank you so much for considering a donation.
If I want to learn more about Endometriosis where should I look? Because there is so much bad data and misinformation out there you have to be very careful where you go to learn about Endometriosis. Just because it’s on CNN or a celebrity is talking about it doesn’t mean it is accurate. This stems from a Dr. Sampson who published a bad study in 1925 that has provided the basis for all Endometriosis training for American doctors since then, to this day. For this reason, you cannot simply Google Endometriosis or look it up on WebMD and trust the answer.
It wasn’t until 1991 when Dr. Redwine began to study Endometriosis and train using new theories and techniques that things began to shift and we began to see successful treatment of Endometriosis. Even though excision (surgically removing) is the only successful cure for Endo, it has been a very slow process to correct the misinformation and faulty training. That is why, on average, most women wait 9 years for a correct diagnosis. That is 9 years of seeking medical care, 9 years of bad surgeries (sometimes in the double digits, sometimes removing perfectly good organs), 9 years of medical gaslighting.
Specifically: the bad study that Dr. Sampson published in 1925 (which has since been successfully refuted) stated that Endometriosis was created through something he called reverse menstruation. Again this is the bad data, the disproven study, the wrong theory. Wrong.
Dr. Sampson believed that cells that belonged in the uterus somehow were flowing backwards out of the uterus and into the abdominal cavity. Because this theory was accepted wholesale by the American Surgical Board, doctors believed that Endo cells were simply out-of-place uterine cells, and that once cut off from a source of estrogen then the Endo would be cured. Thus we saw the rise of several very harmful practices of “curing” Endometriosis with pregnancy, hysterectomy or very strong hormones. All of these are incorrect. These treatments failed: failed many, many women.
Because Endometriosis cells create their own estrogen, it doesn’t matter if you get pregnant or even remove the entire uterus and ovaries, the Endo is still there and has its own estrogen and so continues to be painful and continues to grow.
Let’s repeat that for clarity:
· Pregnancy doesn’t cure Endometriosis
· Menopause doesn’t cure Endometriosis
· Birth control doesn’t cure Endometriosis
· Horrible and very damaging hormone drugs like Lupron do not cure Endometriosis (but it will destroy your bones. Permanently)
· Hysterectomy doesn’t cure Endometriosis. (Endometriosis doesn’t occur inside the uterus)
· The only cure for Endometriosis is excision. Lasering, or burning it doesn’t work. You have to cut it out by the roots or it comes back like a weed.
Any woman whose doctor recommends anything but excision for Endo, please seek a second opinion from a vetted Endo Specialist (you can find a great list of vetted doctors, in the US and beyond, in the Nancy's Nook FB link below.)
So, for some good sources to learn more about Endometriosis (and to perhaps help yourself or a woman in your life to finally find relief from the damaging symptoms of Endometriosis) check out these resources:
· My doctor, Dr. Mosbrucker’s (trained by Dr. Redwine!) website: http://pacificendometriosis.com
· Dr. Redwine’s Website: http://endopaedia.info/redwine.html
· Nancy Petersen, R.N. (Trained and worked with Dr. Redwine as well as suffered from Endometriosis and also the place where I found the list of vetted Endometriosis surgeons) Facebook group: Nancy’s Nook: Endometriosis Education https://www.facebook.com/groups/418136991574617/
· There is also another condition called Adenomyosis, similar to Endometriosis, which infiltrates the walls of the uterus. Although it is a different disease from Endometriosis it does often co-present with Endo so it may be worth checking it out as well: https://www.facebook.com/groups/AdenomyosisSupport/
· Good luck and good health to all!
Thank you for taking the time and considering a donation for my surgery. It really means a lot to me.
And maybe when I'm all recovered there will be a rise of the New NEW Magdalene!(In case it was too subtle, this Godzilla Link is your reward for reading all those words! New Magdalene will rise again!)
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