Expert Excision Changes Lives – Officially 6 YEARS endometriosis free!

Today, 6/24/2016 is the 6th anniversary of my excision surgery with an expert.
I’ve been free from endometriosis and its symptoms for 6 YEARS.
Just typing out that sentence is enough to make me cry tears of joy.

Now, it hasn’t been all roses. As most women who deal with pelvic issues will agree,
endo likes to bring friends to the party. 4.5 pain free years after my excision, I dealt with two other conditions: adenomyosis, which resulted in a hysterectomy (there was no endometriosis found anywhere – the surgery confirmed there has been no recurrence since my fertility sparing excision in 2010), and pelvic floor muscle dysfunction, which sent me to physical therapy.

In regards to endometriosis, I’ve officially beaten the odds given to me by local doctors
4 TIMES over.

I understand that some women struggle to afford even simply co-pays and that I can absolutely see where excision can, most unfortunately, be out of reach for those people. I’d also like to acknowledge those in other countries who do not have the same level of access to excision surgeons as we do here in the United States. That said, I’d like to “speak” to the people who were “me” in 2009/2010 – those that are thinking about excision, not sure what the difference in excision and ablation is, wondering if seeing an excision doctor is worth it, convinced they can’t afford it. I want to share how expert excision was actually CHEAPER than repeated superficial ablative surgeries for me. (Spoiler alert – no figures mentioned – the cost is different for everyone – soooo many variables – procedures needed, insurance plan coverage, your individual deductible. The ONLY way to get *accurate* information for your case is to contact your prospective surgeon’s office directly. I will say that it wasn’t nearly as expensive as I thought it would be). Its worth mentioning that, even though a lot of excision surgeons are “out of network” with insurance, there are some that are “in network”. In addition, even if the surgeon is “out of network”, typically the associated providers (hospital, anesthesia, pathology, etc) are “in network”. Just takes some homework to find a surgeon who meets your needs and is a good fit for you (both surgically and financially).

I spent a large portion of 2009-2010 nearly bedridden – unable to function, forced to quit activities I had previously enjoyed, crippled in pain every day, squalling in pain at night, desperately pleading with my body to lower the pain level just enough so that I could keep surviving. Feeling hopeless. Listening to multiple doctors give me a poor prognosis and tell me how sorry they were that I had been dealt this hand. My life as I knew it was over, according to one doctor. I’d always be in pain and likely be infertile. I’m not sure if it’s my type A personality, but I simply couldn’t accept that that was all there was to it. I started reading medical studies and journals – determined that there had to be a way. I came across a website talking about a different method of removing endo lesions. I reached out to patients on forums to hear their experiences. I found a surgeon who practiced this advanced technique (excision), sent in my medical records and had a phone consult with him.

“I think I can help you”, he said.

I finally had hope – hope that maybe I could get better than “surgery every 18 months” and a lifetime of hormonal suppression. Hope that maybe, just maybe, I could still live my life.

I’ve spent some time thinking about this post and what to say. I mean, from a medical standpoint, I don’t really have much to add since my post last year. I started doing the math though and realized how much more money I would have spent had I chosen a different route years ago. So without further ado, let’s talk about how choosing to see an “out of network” excision doctor for endometriosis was one of the best financial decisions I’ve made along my medical journey.

I know, I know. I saw one of those “super expensive surgeons” and it SAVED me money? How is this you ask? Well, grab some popcorn – this is going to get long lol – and I’ll explain.

You see, in early 2010, I had come to the realization that I wouldn’t be able to put off surgery for my (at the time suspected) endometriosis any longer.

I had gotten opinions from two gynecologists local to me, and, as it stood, my local options were surgery approximately every 18 months, followed by hormonal suppression (one offered continuous birth control and the other offered Lupron), and one said I would potentially be infertile and always be in some level of pain. Now, both of these OB/GYNs were “in network” with my insurance company, which means that they had a contract with said insurance company and would therefore be required to settle for an amount the *insurance company* deemed appropriate (this contractual figure is called the “allowed amount” and is typically significantly less than what the provider has billed for).

If I chose an “in network” provider, they would bill for their services, the insurance company would force them to take a “contractual adjustment” down to the aforementioned “allowed amount” and then I would be responsible for my deductible and a small percentage of the remainder after deductible. The hospital, anesthesia, pathology and other related providers that the local surgeon would utilize were all “in network” as well. I would need semi-regular office visits subject to my standard co-pay, as well as need to pay for the cost of hormonal therapies.

I had also gotten an opinion from an expert excision surgeon located a few hours away in another state. This surgeon, however, was an “out of network” provider which means that they did *not* have such a contract in place with my insurance company. This is not the same as “not taking insurance”, but rather that they were not bound by contract to the insurance company.

*Prior to the surgery*, I would be given an estimate (which turned out to be extremely accurate) for fees the *doctor* (not some person sitting at a desk at an insurance company who doesn’t even know how to spell endometriosis) deemed reasonable and customary. After the surgery, the doctor’s office would file insurance claims on my behalf for services provided. I would be responsible for my deductible and then a (slightly higher than had I chosen an “in network” doctor) percentage of the remainder. The hospital, anesthesia, pathology, etc providers that the excision surgeon would utilize were all “in network” so no difference there. The goal would be to eradicate the endometriosis entirely, thus eliminating the need for hormonal suppression (and the bill for said hormones).

Seems like a no brainer, right? Go with the cheaper guy? Well, in healthcare like all things, you really do get what you pay for.

Along my journey, I learned some valuable things.

For starters, any which way I went, the surgeon would enter the pelvis using a laparoscope (small incisions – one in belly button and a couple along bikini line), but that’s where the similarities in surgical treatment would end.

The local doc would use a method called “ablation/cauterization/vaporization” and would “burn off/attempt to destroy” any endometriosis lesions. Picture an iceberg – burn down to the surface as far as you can see, and you have left the bulk behind. The American Congress of Obstetricians and Gynecologists (ACOG) gives a recurrence rate of up to 80% in less than two years for this method of treatment. Given that my local doctors agreed that, with the limited surgery they could offer, I was destined to fall into that statistic and would need surgery for endometriosis around every 18 months (if not more often), I was looking at paying that cheaper fee every year and a half. Youch. Not looking like such a bargain now.

Gynecologists in my area averaged a surgery case a week (for any gynecological problem – not limited to endometriosis) and did these surgeries in between pap smears, delivering babies, and prenatal care. A surgery a week = 52 surgeries a year/average. Yikes. Not much experience/retaining sharp endometriosis surgical skills going on there.

By contrast, the advanced surgeon would use a method called “excision” and would meticulously cut out every single endo lesion (not organs) that he found. Excision has been found to be much more effective because the endometriosis is removed in its entirety and not merely shaved off the surface leaving bulk disease behind (and untreated) as cauterization tends to do.

In addition, because the surgeon wouldn’t be “on the clock” given by the insurance company, he would be able to take as much time as was needed to be sure that he got it all.

What do I mean by “on the clock”?

Most people are unaware that “in network” doctors are essentially on a clock when it comes to the care they provide. Being paid less per patient means that an “in network” doctor has to see more patients. A great example of this happens when you see your primary care “in network” doctor for an office visit. They book you in for 15 minutes – this way they can see the number of patients they have to see in a day to make up for the reduced rates they are being paid by the insurance company per patient (that pesky “contractual allowed amount” again). This sounds ok in theory – until you realize that increased quantity doesn’t equal increased quality. This is why you sometimes leave your doctor’s office with that ‘shuffled through like a number’ feeling. Endometriosis surgery in the US works in the same type system- the insurance company will pay the surgeon the same amount regardless of if they spend 15 minutes or 10 hours working on your pelvis. Being “out of network” allows doctors to bill for the hours they actually spent working on your case, and allows you to receive much more thorough and much higher quality care.

The excision doctor I was considering (Dr. Ken Sinervo) spent 4 days a week in the OR – no baby catching or prenatal care to take time away from surgical experience. His practice was devoted entirely to women with endometriosis and he had performed THOUSANDS of endometriosis surgeries. He could do my surgery in his sleep (although, I’d really prefer he didn’t).

My husband and I met several women who had “been there, done both” and it didn’t take long for my husband to make his mind up. His wife was getting the best care possible. Period. No pun intended.

But how on earth to pay for it? It must cost an unspeakable amount of funds, right? Only rich people can afford excision with an expert? Well, no.

My husband and I were both 20 years old – I was unable to work due to endometriosis (I had previously been gainfully employed) and my husband was our only income. My excision doctor’s staff and I worked out the particulars – I would pay a fee upfront (my deductible) and then make payments on the surgeon’s balance. After the surgery, I applied for and received partial assistance from the hospital for their (separate) fees and entered a payment agreement for the balance. I also made payment plans with the anesthesiologist and pathologist. I had family in Atlanta so I crashed at my aunt’s house to save money on a hotel. Honestly, the cost was not nearly as bad as what I was expecting. It wasn’t cheap, sure, but it really wasn’t that much more expensive than local surgery.

We spent a few months saving up for the upfront expenses and just like that, we were off. I spent 5 days in Atlanta from arrival to departure (pre op, surgery, discharge next day, two days resting before traveling home). When I came home, I had a whopping $9 in my checking account. Made for a tight couple of weeks when my husband went back to work, but we recovered and kept on keeping on.

So … was it worth it?

For us, the answer is ABSOLUTELY. Without a doubt.

Prior to surgery, I was basically bedridden and had an extremely poor quality of life. Having all of my endometriosis excised resulted in me being able to return to the land of the living. No more being stuck in pain in bed.

Three months after surgery, I competed in (and won) a local mud pig chasing/tackling contest.

Excision got me OFF of the hormones that I was supposed to be stuck on indefinitely.

A year after my excision surgery (and only 3 months after we “quit preventing”), I found myself naturally pregnant with the baby that local doctors didn’t think I could ever have.

1 year and 10 months post surgery, I gave birth to my daughter.

4.5 pain free years after the excision, I developed symptoms of a different condition (adenomyosis) and needed a hysterectomy (Dr S removed uterus+cervix+tubes – I kept both ovaries). My husband refused to let anyone else operate and took me back to the surgeon who had saved my existence years before.
The silver lining? THERE WAS NO ENDOMETRIOSIS FOUND ANYWHERE.

It’s now been 6 years since the excision, and I’m thrilled to say that I’m still completely free from endometriosis. My ovaries cycle every month – totally unsuppressed.

To date, I have not had a recurrence of the endometriosis symptoms that sent me to the OR on June 24, 2010. If I had to describe expert excision in a phrase, it would be “life changing”.

For those of you that did the math, at the estimated 18 month intervals I would have needed superficial local surgery, I would have now paid that “cheaper” fee for endometriosis, at a minimum, FOUR times. This doesn’t even take into account the cost of office visits/hormonal therapies that I would have incurred during that time frame. It also doesn’t include the scar tissue that each of those local superficial surgeries would have added to my pelvis which could have given me a whole new set of problems or the loss of quality of life (but that’s a post for a different day). Turns out, local care wasn’t going to be cheaper for me in the long run after all.

Looking back, my one and only regret about seeing a specialist for excision for endometriosis is that I didn’t do it sooner. I lost nearly a year of my life that I can never get back. If I had known then what I know now, I would have been on the phone with an excision surgeon about 3 minutes after my endometriosis symptoms reared their ugly head and would have ran (crawled?) to the OR. Early diagnosis, early expert intervention has become my motto for effective endometriosis treatment.

Last year, on my 5th anniversary of being endo free, I sent my surgeon a thank you card. I did it again this year, but honestly, how exactly does one sufficiently say “thanks for literally giving me my life back – thanks for being the reason I’m physically capable of getting out of bed – thanks for enabling me to live a life that doesn’t depend on prescriptions”? Words seem terribly inadequate.

#ExcisionChangesLives

You can read the rest of my story here and watch my video montage here.

 


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So What IS Pelvic Floor Muscle Dysfunction?

According to Jennifer B. Hunt, PT from Provenance Rehabilitation in Alpharetta, GA –

“The “pelvic floor muscles” are a group of muscles that are arranged within the pelvis like a sling or hammock, connecting the front, back, and sides of the pelvis and sacrum.  The main function of these muscles is to provide support to the organs of the pelvis, including the bladder, uterus or prostate, and rectum.  They also make up part of the urethra, rectum, and vagina.

These muscles must be able to effectively coordinate contraction and relaxation to allow normal functioning of the bowel and bladder.  Moreover, the ability of these muscles to relax is essential to allow for normal urination, bowel movements, and sexual intercourse.

The term “Pelvic Floor Dysfunction,” or PFD, refers to these muscles when they are too relaxed or when they have too much tension.  Abnormal muscle tone can affect urinary and bowel functions, sexual function, and can cause pain.”

 

In my case, I had a lot of soreness along with bladder and muscle spasms.
The pelvic PT that I traveled to see determined that my pelvic floor muscles were weakened after battling endometriosis, having surgery for endometriosis, pregnancy with complications (including preterm labor), vaginal childbirth, adenomyosis, and hysterectomy for adenomyosis. She also discovered some trigger points.

During my initial session, she asked me to do some basic pelvic exercises. Imagine my dismay when my brain tried to “tell” my pelvis what to do and my pelvis responded by doing NOTHING. Not a thing. I won’t explain this next part right but basically, my PT said that sometimes our brain will actually quit sending signals to parts of the body as a defensive mechanism. I felt like my body had given up on my pelvis and really, who could blame it.
The good news was that my PT was able to show me how to begin re-establishing the connection. Eventually, through doing exercises that she taught me, both in session and at home, I was able to regain control of the muscles in my pelvis. My PT told me that, in her professional opinion, had I continued carting kids around with such a weakened pelvic floor, I would have needed reconstructive pelvic surgery to “tack everything back up” within 10-15 years. YIKES!

My treatment started with history taking/pelvic exam/evaluation, and then included biofeedback, myofascial release, increasing my water intake, home exercises, and yoga. I made significant improvement! When I began treatment, I was on ditropan for bladder spasms – after 8 PT visits, I was able to cut my ditropan dosage in half.
I was discharged after 13 visits – with instructions to continue my home care and to call if needed. I highly recommend considering physical therapy for PFD or even if you don’t have PFD – if you are post childbirth or pelvic surgery – it can truly make a big difference!

For more information regarding physical therapy for pelvic floor dysfunction,
check out these fantastic resources –

My physical therapist –
http://cumberlandpt.com/cptimages/brochure-1.pdf

General info on physical therapy for PFD –
http://www.centerforendometriosiscare.com/728/

Preparing for Pelvic Physical Therapy –
http://www.centerforendometriosiscare.com/preparing-for-pelvic-physical-therapy-by-dr-sallie-sarrel-pt-atc-dpt-2/

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Yoga ~ it’s what’s for exercise!

One of the things that my amazing pelvic floor physical therapist recommended was low impact exercise – specifically yoga and Pilates. I haven’t worked up the courage to join an actual class yet (I did check around for local options – that counts for something, right?) but my husband and I have started doing yoga together in the evenings.

We’re currently following the Yoga with Adriene videos on YouTube.
So far, her channel has been the best fit for us.
< https://www.youtube.com/watch?v=v7AYKMP6rOE >

I’m pleasantly surprised that I’m actually enjoying the time spent doing yoga
as I’ve never had much interest in it – mostly considered it to “not be my thing.”
It’s working out well – time spent with the hubby while I’m working towards getting back in shape.

Maybe I’ll try out a class soon!

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It’s My 1st Hysterversary! My Life One Year Post Adenomyosis!

It’s My 1st Hysterversary + a Health Update!

<  You can read my full story and watch my video montage here –
https://ducksinarow55.wordpress.com/2015/06/16/my-journey-with-endometriosis-adenomyosis/  >

To quickly summarize –

In 2009, I began to have debilitating symptoms of endometriosis. My local doctors told me that I would likely always be in pain, need surgery most every year, and probably never get off hormones.

In June 2010, after losing almost a year of my life, I traveled to Atlanta, Georgia for advanced excision surgery with Dr. Ken Sinervo.
The surgery was immensely successful and absolutely restored my quality of life. Post surgery, I was able to get off the hormones.
I went on to be pain free for years during which time I became pregnant and subsequently delivered a daughter.

To date, I have not had a recurrence of endometriosis (currently 5.5 years and counting).
<  To read more about endometriosis and advanced excision – http://www.centerforendometriosiscare.com/understanding-endometriosis/  >

In 2014, I developed severe symptoms of a uterine disease called adenomyosis.
Once mistakenly called “endometriosis interna”, adenomyosis has since been found to be a pathologically different condition than endometriosis.

Endometriosis by definition is tissue that is similar to *but not the same as* endometrial cells being found outside of the uterus.

Adenomyosis, on the other hand, occurs when actual endometrial cells penetrate the muscular layer of the uterus (called the myometrium). This typically results in an enlarged, inflamed, blood clot expelling, contracting uterus. In other words, blood. Blood everywhere. Back pain. Uterine contractions equivalent to those in un-medicated childbirth (I delivered my daughter with no drugs so I know exactly what those feel like – there were moments with adenomyosis that I thought I was about to birth my uterus). The mid-line (dead center) area of my pelvis felt as if I was carrying around a hot and heavy bowling ball.

While there are some treatment choices that aim to lessen the severity of the symptoms, the only cure for adenomyosis is a hysterectomy.   (It’s critical to note that, as endometriosis and adenomyosis are not the same condition, a hyster is a cure for *adenomyosis* but it is NOT a cure for endometriosis).
<  You can read more about adenomyosis here  –  http://centerforendo.com/articles/adenomyosis.htm  –  and a fantastic article on the indications for a hysterectomy can be found here – http://www.centerforendo.com/cecarticles.htm (once at the site, scroll down and click on “What are the Indications for Hysterectomy”) >

My husband and I discussed our options with my primary care physician, the OB/GYN who had delivered my daughter, and my advanced gynecological surgeon.
Ultimately, it was decided that a hysterectomy was my best option. I returned to Dr S and, on December 30, 2014, at the age of 25, I had a hysterectomy for adenomyosis. I was thrilled to confirm that there was *no endometriosis anywhere* (4.5 years post excision). This wasn’t a surprise to me as I wasn’t having symptoms that I would attribute to endo.

It’s a common misconception that a hysterectomy means that the surgeon removes everything. Uterus, cervix, tubes, ovaries, whole kit and caboodle. This is actually incorrect. The term “hysterectomy” has diddly squat to do with your ovaries and/or tubes. Nothing. Nada. Zilch.
A hysterectomy simply refers to your uterus – “total” meaning uterus+cervix, “subtotal” or “supra-cervical” meaning removing the uterus and leaving the cervix behind. Removal of any other organs, while this may or may not be done during the same surgery, are different procedures.

In my case, for my adenomyosis, I had what’s called a “Total Laparoscopic Hysterectomy” which means that my surgeon went in laparoscopically and removed my uterus and my cervix. He made an incision in my belly button, as well as two small fingernail sized incisions along the bikini line. I also had a prophylactic bilateral salpingectomy (both fallopian tubes removed as a preventive measure against cancer) during the surgery. I retained both of my ovaries which has allowed me to continue to be free of hormones. I do not currently take any hormonal suppression or hormonal replacement therapies.
< To read more about prophylactic bilateral salpingectomy – http://www.acog.org/About-ACOG/News-Room/News-Releases/2013/Growing-Acceptance-of-Removing-Fallopian-Tubes >

I found the hyster recovery to be difficult – it was definitely a one day at a time process. The recovery was filled with many wonderful things.
To name a few – Insomnia. Hormonal mood swings from hell – my ovaries threw a temper tantrum and went into “shock” after the surgery – the adjustment period was brutal. Pain – apparently there is a reason they call it major surgery – who knew?!? My newly formed vaginal cuff took after the rest of me and healed superrrrrrrr slowlyyyyyyyyy …. promptly resulting in the need for silver nitrate at my 6 week post op check up.
If you don’t know what that is, well, uh, basically the area where your cervix used to be is chemically cauterized. In the office. While you are awake.
Men have no idea how well they have it.

I finally recovered after what felt like forrreeevverrrrr and was released from my restrictions in February 2015.
In June 2015, I celebrated 5 years endometriosis free with my amazing and super supportive husband.

Throughout my recovery and into 2015, while I wasn’t in much pain (for me, it was merely uncomfortable at times), I did have some residual soreness as well as bladder spasms. Ditropan was a lifesaver for my bladder spasms, however, it really isn’t a long term solution so my surgeon encouraged me to consider pelvic floor physical therapy.
He might have um, mentioned *before* the surgery that I was having some pelvic muscle issues and he might have possibly suggested then that I see a physical therapist.
There’s a teensy chance I didn’t listen. Whoops.

To be honest, I thought it was quackery and didn’t have plans to pursue it.
Eventually though, I decided to give it a try.

Despite some insurance deductible holdups and a lack of local providers,
I located a fantastic pelvic floor physical therapist. In another state.
I somehow talked my husband into traveling with me to check it out.
Even then, I wasn’t convinced that I would get any benefit from it.
In fact, my leading argument for traveling was that I would determine it to be nonsense and that we would only have to make the trip once.
That wasn’t exactly the result – just ask my husband. 🙂

My PT discovered that my pelvic floor muscles were very weak, I had trigger points and that I was definitely having muscle spasms. <  Read more about pelvic floor dysfunction here – http://www.centerforendometriosiscare.com/728/  >

She helped me to begin retraining and strengthening my pelvic floor.
My skepticism disappeared in one visit and I quickly became a believer.
Visit #8 saw me being able to cut my ditropan dosage in half.
We made that trip weekly for 3 months before I was discharged from PT (with instructions to continue at home exercises and to call if needed).
She and I both believe that I will soon be off of the bladder medication entirely. My opinion of PT has completely changed – I’ve come to believe that its a good idea post childbirth and/or pelvic surgery even if you don’t have pelvic floor dysfunction.

So, in the end, that 1 trip turned into 13. Oh, my poor poor husband.
Overall though, things are going very well. I continue to be free of any symptoms of endometriosis and am looking forward to hitting the
6 year endometriosis free milestone/excisionversary in June 2016.
I’m recently discharged from pelvic floor physical therapy.
In addition, today, December 30, 2015, I’m marking my first hysterversary and celebrating a year free from adenomyosis.

-Rebecca

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Endometriosis morbidity: can it be prevented with early diagnosis and complete excision?

“All the teenagers received “complete excision” (defined as above) by an expert and experienced surgeon. They were followed for up to 5 years, the mean interval being 2 years. Overall the pain scores and quality of life (perhaps more importantly) improved significantly. The rate of recurrent or persistent endometriosis on second-look laparoscopy was zero.”

http://endometriosis.org/news/opinion/endometriosis-morbidity-can-it-be-prevented-with-early-diagnosis-and-complete-excision/

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Understanding Endometriosis 

‘A Challenging Conundrum: abdominal or pelvic pain? Infertility? Painful sex? “IBS” and bowel-related symptoms? Bladder pain? Lower back or leg pain? Bloating? Fatigue? Debilitating periods? Endometriosis could be at the root of these symptoms – and many others. Despite being among the most common of diseases, persistent myths and misinformation continue to enshroud endometriosis, often resulting in poor information systems and lack of effective care.’

Read more here-

http://www.centerforendometriosiscare.com/understanding-endometriosis/

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5 Years Endometriosis Free!

Yesterday, June 24, 2015, was my Excisionversary! 5 YEARS FREE FROM ENDOMETRIOSIS!
5 years ago, my local gyn estimated that if I had surgery with her, I would likely need another one for endo within 2 years. Another local gyn told me that I would probably always be in pain. I chose to instead travel for advanced excision, and am ecstatic to have today mark 5 YEARS (and counting) ENDOMETRIOSIS FREE!
During the past 5 years, I have been diagnosed and subsequently dealt with a list of other health issues (including the loss of my uterus to ‪#‎adenomyosis‬ 6 months ago – that surgery found NO ENDOMETRIOSIS ANYWHERE), but endometriosis is a thing of the past since 6/24/2010!
There’s no cure for endometriosis, but I’m thrilled to be ‪#‎endometriosisfreesince2010‬!

You can read my full story here – https://ducksinarow55.wordpress.com/2015/06/16/my-journey-with-endometriosis-adenomyosis/

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