There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis.  And it’s estimated that 5 million in the United States have Endometriosis.  1 in 10 supposedly have, or will have, this disease.  One. In. Ten.

An incurable, recurring disease which causes pain and infertility, among many other symptoms.  A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both.  And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before.  And the only tried and true way to diagnosis the disease with with surgery!

So one thing hit me today.  This disease is a driving economic force!  What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices.  If you live elsewhere and are curious, I encourage you to figure this out.  For all of you living in the States, let’s find out together!

These prices will all vary drastically dependent on if you are uninsured, which insurance you do have, ObamaCare, facilities, etc.  But here goes.

Emergency Room/Urgent Care Visits

A 2013 study published in Plos One delves deep into the medical costs associated with Emergency Room visits.  It found that the large majority of the populace has NO idea how much money an ER visit is going to cost them, especially because there is a large degree of variance between facilities.  The study suggests that billing transparency and educational information would better prepare patients for that pending bill that will ultimately arrive in the mail.

The average co-pay of an Emergency Room visit for people with health insurance was between $0-$150.  That does not include any out-of-pocket expenses the insurance decides not to cover.  For people who do not have health insurance, an ER visit can cost between $150-$5,000+.  These costs may vary drastically based upon services, imaging studies, doctors’ fees, etc.  And I personally know of several EndoWarriors who frequently visit the ER due to their pain.

Kaiser Permanente has published their 2015 Fee Schedule, and their ER visits cost anywhere from $125-$415 for their members.

Options?  Urgent Care facilities are often cheaper than Emergency Room visits.  Or, if you can hold out, make an emergency appointment with your primary care provider or regular treating physician.  Those bills are drastically much smaller, and they already understand (hopefully) your medical condition and history of complaints.

Doctor Visits

Co-pay visits with your physician will vary drastically from insurance to insurance. I personally have Anthem Blue Cross (an HMO plan) and pay $40 per visit with my primary care physician.  According to Debt.org, out-of-pocket expenses for insured and uninsured patients may range from $50-$240.

An interesting resource you can use to review office/specialists costs is the Healthcare Blue Book.

Referrals:

Again, these co-pays will vary.  My primary care physician had referred me to my gynecologist for annual, routine exams, etc.  Over the next few years prior to my diagnosis, I saw this doctor regularly, but because he’s considered a “specialist,” my co-pay increased to $50.  If you do not have insurance, a basic visit with your gynecologist could run $125 or more.

Many patients also receive referrals to other specialists: neurologists, pain management, urologists, etc.  Each of these visits will be additional co-pays and/or medical bills.  Many of these visits are prior to even receiving an appropriate diagnosis of Endometriosis – the medical community poking and prodding just trying to understand what’s causing the pain and symptoms.

Diagnostic Tests

Endometriosis sufferers mostly share similar stories of diagnoses: bounced around from doctor to doctor and undergoing several lab tests and imaging studies.  All of these diagnostic tests will add up as well.  According to Healthcare Blue Book, the following diagnostic studies (which may be done to help diagnosis Endometriosis, or as aftercare) have these “fair price fees”:

Abdomen and Pelvic CT (with and without contrast): $813

Pelvic Ultrasound: $254

Pelvic MRI (with and without contrast): $1,018

Transvaginal Ultrasound: $256

Out-of-pocket and co-pay amounts will vary per insurance company and facility.  But my HMO requires that I pay $100 co-pay for MRIs.  Luckily, my $50 specialist co-pay covers my ultrasound charges.

Prescription Medication

Ah, Big Pharma.  Sometimes a necessary evil…

Birth control pills are the biggest form of prescribed treatment to ease the symptoms of Endometriosis.  Due to the Affordable Care Act (ObamaCare), most birth control pills are now free.  That’s right : $0.  So that’s nice.

However, there are other prescription medications that EndoWarriors may choose to take.  Again, these price quotes are courtesy of the Healthcare Blue Book as the fair price value:

Lupron Depot: $1,008 per injection for the once-a-month injection.  My HMO had me paying a $50 co-pay per injection, but this was due to the fact that I had to go to my gynecologist for the shot.  But seriously, $1,000 per shot!?  I weep for the patients who choose to take this medication and do not have insurance.

Norethindrone Acetate: $50 for a 30-day supply.  Often taken alongside Lupron Depot to ease the side effects.

Depo-Provera: $150 per injection.  A similar treatment to Lupron Depot, but it is one shot every three months.

Naproxen Sodium: I pay a $10 co-pay for a 30-day supply.  NSAIDs are anti-inflammatory drugs which may help control the pain and inflammation Endometriosis causes.

Over-the-Counter: Popular over-the-counter medication such as Aleve, Midol, or Ibuprofen can be an inexpensive, easy and quick fix for some pain.  Some people find this ineffective and may need to be prescribed narcotic pain killers to ease their pain.

Prescriptions Pain Killers: Prescription narcotic prices may range from $10-$200 for a 30-day supply.  Some Warriors claim it is the only thing that offers relief.  And many are denied these pills, accused of being a “pill seeker.”

Surgery

As stated earlier, the only way to truly diagnose Endometriosis is by surgery.  There are also various types of surgery, depending on what needs to be done: purely diagnostic, excision, hysterectomy, etc.  Each of these may be done a few different ways (these prices do NOT reflect facility, anesthesia, or other physician fees that also pile up):

Open Abdominal Surgery: $11,800

Laparoscopy: $11,600

Robotic Laparoscopy:  I cannot locate a price on Healthcare Blue Book; however, other online searches all reference this surgery costing $3,000-$5,000 more than a traditional laparoscopy.  FYI, I had the robotic lap surgery for my Endometriosis excision and my final bill was over $70,000, but after my insurance reductions and coverage, my out-of-pocket payment for surgery was roughly $800.

Vaginal (hysterectomy): $11,300

Follow-up Exams

After surgery, there may be several post-operative examinations.  Again, these office visits can cost anywhere from $40-$240 each time, depending on insurance coverage, etc.

Psychological/Psychiatric Care

Many EndoWarriors suffer from accompanying depression, hopelessness, or other emotional issues that require professional help.  There have been a staggering number of suicides with Warriors over the past few years, and a true push for mental health should be included in our medical regimen, if necessary.

The costs of mental healthcare visits will vary, not only on insurance, but also on location.  However, the average appears to be $120 for a 30-minute session.  And tack onto that the cost of any prescription medication the psychiatrist may prescribe (psychologists cannot prescribe medication).

Alternative Medicine

Acupuncture: if Eastern Medicine intrigues you, acupuncture may be the way to go.  On average, a session will cost between $60-$120.  And, if you’re lucky, some insurance companies will cover a portion of the costs.

Biofeedback: some people express they’ve received relief using biofeedback, which can cost up to $80 per session.  Again, insurance coverage is spotty on this one.

Massage: again, this will drastically vary depending on the length of the massage, the type of the massage, and your location.  Sometimes, 1-hour massages can be as low as $40, but as high as $120.  But, given certain aromatherapy and essential oil combinations, many patients have reported relief with regular massage therapy sessions.

PELVIC FLOOR THERAPY

Some with Endometriosis are diagnosed with pelvic floor dysfunction, pelvic congestion syndrome, or even pelvic inflammatory disease. Some don’t have any comorbidity diagnosis. And many opt to to pelvic floor therapy to restore their bodies’ natural muscle alignment and to reduce chronic pain in that area.  Therapy sessions may cost anywhere between $50-$140 per session, and may (or may not) be covered by insurance. Some patients have at least 6-8 sessions, some more, some less.

Herbal Supplements, Snake Oils, and other Claimed Remedies

Now I’m not one to knock aromatherapy, essential oils, supplements, etc.  BUT I do have to scoff at the inflated prices of some of these so-called “remedies” and combinations of herbs that are available specifically marketed for Endometriosis pain. These have not been approved by the FDA to improve, treat, or cure medical conditions:

A lot of EndoWarriors, myself included, take A LOT of herbal supplements to supposedly help keep our bodies fighting strong and healthy, as well as reduce inflammation.  I take a daily regimen of Calcium + Vitamin D ($7 for 1 month), Milk Thistle Seed Extract ($9 for 1 month), Folic Acid ($3 for 3 months), Probiotics ($8 for 1 month), Digestive Enzymes ($7 for 1 month), Krill Oil ($10 for 1 month), and a multivitamin ($6 for 1 month).  So my herbal supplements cost $50 per month.  Whether or not they actually do anything is beyond me, but I do feel better, and can notice a difference in my energy, digestion, and bloating if I skip a week of these supplements.  Many others take much, much more than I.

Endovan ($50 for 1 month) is an combination of herbs which boasts of symptom relief and PREVENTION of Endo recurrence.  However, if you do NOT experience the relief within 60 days, they will offer you a full refund of your purchase price (and they suggest you seek a consultation from your physician for ongoing medical care and treatment).

ProSirona ($33 for 50 roll-on applications) is an essential oil roll-on that many Warriors say does improve their Endometriosis pain and inflammation.  They, too, offer a money back guarantee.

Before starting any herbal supplement regimen, talk to your doctor.  Also, do your research: many herbal ingredients in these concoctions may actually worsen Endometriosis by mimicing Estrogen, or even increasing Estrogen production in your body.

Many massage parlors offer specific essential oil massages specifically tailored to pelvic pain.  Tao Spa, which is near my house, offers the Ovarian Maintenance massage with rose, geranium, and violet oils.  They also offer Lympatic Drainage (rosemary, geranium, and lemon), Endocrine Regulation (rose, ylang, and geranium), Irregular Menstruation (rose, ylang), and Pain Relief (chamomile, lavendar).  These essential oil massages at Tao Spa are $50 for 60 minutes.  Perhaps I’ll treat myself to one in the near future and let you know how it went.  Ah, suffer for my research. 🙂

Dietary Changes

Have you heard of the Endo Diet?  It’s either cutting out certain foods from your diet that may worsen your symptoms, or switching to organic & grass fed alternatives.  Either way, your grocery budget will feel the sting…

For comparison, today at Vons a 1-pound package of 80/20 lean ground beef costs $2.99 a pound.  However, on Amazon a 1-pound package of 80/20 organic grass-fed lean ground beef costs between $9.90-$19.99 per pound.  Ground turkey is also much more expensive than ground beef.  And fish, which is now a staple of our diet, doesn’t come cheap either.

In 2015, MetroParent put out a comparison list of organic vs. conventional food prices.  Milk is another biggy in our life: I no longer drink dairy, but have been told that I may fare better with organic milk:  a 1/2 gallon of regular milk can cost $2.99, when organic can cost two or three times as much.  No thank you.

I am also spending so much more money on fresh fruits and vegetables every week, as opposed to the pre-processed, fast, instant food I was eating before my diagnosis.  Yes, I feel much healthier and I’d like to think it’s making a difference.  But yes, do I feel it in my wallet.

Pain Relief Devices

Heating pads, magnets, gimmicks, castor oil packs: it all adds up.

ThermaCare makes those disposable heating pads that stick to your clothing.  A box of 3 sticky-pads costs roughly $7.

Reusable heating pads are also a hot item (pun intended!) for pain relief.  HotShotz manufacturs small reusable heating pads that you boil, let cool, then snap a small button inside when you need the warmth.  It chemically heats up.  Those cost $10-$35 each. Hot water bottles cost $5-$10 for a traditional one, or $75 for a designer ocelot faux fur hot water bottle…And good ol’ plug-in-the-wall heating pads cost $15-$30.

MN8 sells small magnets that you put on your panties (*snicker*) and it allegedly combats period and other pain.  One of these li’l babies will run you $31.

Books

There are SO many books out there about Endometriosis: medical texts, literary collections, biographies of other EndoWarriors, physician’s books to EndoSufferers, Endometriosis association publications, cook books, natural remedy books, etc.  The list is far too extensive and the prices are far too varied!  SO MANY BOOKS!  Is that a bad thing? Never.  But it’s such a hot topic and there are a lot of printed paperback and hardcover books about Endo.  And there are more being published on a regular basis.

Research Studies

Grants are being offered for ongoing research studies about Endometriosis.  Clinical trials are in abundance for various experimental drugs or surgeries.  Money is flowing back and forth between the medical, academic, and scientific communities.  People are trying to better understand this illness, and that’s a great thing.  But do understand that this is one more cog in the Great Economic Machine that is Endometriosis.

Medical Conferences also being held by various organizations regarding research developments of Endometriosis. Not only does that mean speakers and awareness, but that means travel plans, rental cars, hotel reservations, airfare, venue reservations, security.

Fundraising Efforts and Donations

If you just run an internet search for the term “Endometriosis Fundraiser” you’ll be swamped with hits not only from non-profit organizations, but from individuals raising money for those campaigns, or others seeking money to help pay for their surgeries or overwhelming medical bills.  Mankind is very charitable.  And I wish I could tally up the dollar amounts and give you a figure right here and now.  But there are just too many!

Politics

Endometriosis is actually before our Congress more often than you may know.  Right now, there’s H.R. 1708 – Robin Danielson Feminine Hygiene Product Safety Act of 2015 pending before the Subcommittee on Health.  This and similar bills have been introduced to Congress numerous times before trying to force menstrual product manufactures to disclose ingredients of pads and tampons, as well as conduct further tests of the effects of dioxins. 

In 2003, Endometriosis was again brought before Congress at a hearing of the Subcommittee of Science, Technology and Space.  Many brave Warriors actually testified before the subcommittee regarding their Endometriosis and Lupron Depot experiences.

There are also many smaller actions being pursued on the State and City levels regarding Endometriosis; whether it be for recognition of March as Endometriosis Awareness March or pushing for better healthcare and education.

And we all know that politics cost money.

Finally, the end!

If you’ve made it through ALL of this, you have my gratitude.  I could have gone on and on, but needed to stop.  I’m out of water, and it’s nearing my bed time.  Besides, just realizing the monolithic scale of Endometriosis and money is overwhelming it its own way.

I reiterate: 176 million people born with a uterus worldwide; 5 million in the United States alone.  Multiply that by all of the above-referenced spending equals a gripload of economic drive.  ALL THE MONEY!

Makes me wonder if conspiracy theorists could come up with something as to economic drive and a lack of a cure…c’mon, put on your tin foil hats and come up with something extra juicy.

Thanks for reading.  And have a wonderful and pain-free day.

Yours,

Lisa

Resources:

Acufinder.com

Amazon

Congress.gov

CostHelper Health

CVS Pharmacy

Debt.org

Endometriosis.org

EndoVan

Healthcare Blue Book

HotShotz

HowMuchIsIt.org

Kaiser Permanente

Endometriosis Foundation of America

MetroParent

MN8

Monterey Bay Urology Associates

Plos One (2013): “How Much Will I Get Charged For This?” Patient Charges for Top Ten Diagnoses in the Emergency Department

ProSirona

Psychotherapy.com

Tao Spa

The Law Dictionary

The Royal Women’s Hospital

Time (2015) Birth-Control Costs Nearly Halved After Obamacare, Study Finds

Tonpsy.com

U.S. Government Publishing Office : (2013) Cloning: A Risk For Women?  Hearing before the Subcommittee on Science, Technology and Space of the Committee on Commerce, Science, and Transportation, United States Senate, 108th Congress

Vons

WebMD

Womenshealth.gov

~ 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