Reader’s Choice : Stats & Percentages

In all of the many books and webpages I’ve read since my Endometriosis diagnosis, I’ve read the same stats over and over.  1 in 10 women will develop Endometriosis.  176 million women affected worldwide.  But where did those stats come from? When were they last updated? How do they track it?

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After scouring the web, I finally found some of the sources of those figures, but nothing that actually gives me a current number of diagnoses around the world today:

10-15

In September, 2014, C Mehedintu, MN Plotogea, S Ionescu, and M Antonovici published “Endometriosis Still a Challenge.J Med Life. Sep 15, 2014; 7(3): 349–357.  The article states that 10% – 15% of women of reproductive age suffer from Endometriosis.

2-10

The Florida Hospital does not cite their source, but states that 5.5 million women in North America have Endometriosis, and that it effects 2% – 10% of women in their reproductive age. Pit those figures against those presented by the Endometriosis Foundation of America, which state 8.5 million women in North America have Endometriosis.  See how frustrating it can be to pin down a figure?

1in10

Endometriosis UK credits their statistics of 1 in 10 women have Endo to an April, 2009 article by Rogers PA, D’Hooghe TM, Fazleabas A, et al. Priorities for endometriosis research: recommendations from an international consensus workshop. Reprod Sci 2009;16(4):335-46.

July, 2007: Rogers’ article references an article which states the costs of treating Endometriosis in 2002 in the U.S. along was approximately $22 Billion, citing between $1,023 – $2,801 annually for each patient.  This figure took into account “productivity loss.” To quote the author, “There is a need for more and better-designed studies that carry out longitudinal analyses of patients until the cessation of their symptoms or that model the chronic nature of endometriosis.” Simoens S, Hummelshoj L, D’Hooghe T; Endometriosis: cost estimates and methodological perspective. Hum Reprod Update. 2007 Jul-Aug; 13(4):395-404.

5-10

October, 1999:  An article cites that Endometriosis effects between 5% – 10% of women. Caroline Wellbery, M.D.; Diagnosis and Treatment of Endometriosis; Georgetown University School of Medicine, Washington, D.C.; Am Fam Physician. 1999 Oct 15;60(6):1753-1762.

1in10

June, 1997: Rogers’ article references an article which states that 1 in 10 women will develop Endometriosis. Eskenazi B, Warner ML; Epidemiology of Endometriosis. Obstet Gynecol Clin North Am. 1997 Jun;24(2):235-58.

Since most of these figures in the past 20 years have all been relatively similar, all of this research led my curiosities to “When was Endo first discovered?”

Ivo Brosens (Professor Emeritus of the Catholic University Leuven, Belgium) and Giuseppe Benagiano (of the Sapienza University of Rome’s Department of Gynecology-Obstetrics & Urology) wrote an article in 2011 entitled, “Endometriosis, a Modern Syndrome.”  They state that Thomas Cullen was the first to accurately describe and classify Endometriosis.  Further research shows Mr. Cullen’s discovery was back in 1908, just a little over 100 years ago! We’ll get there…

comparison

In 1880, Malaria parasites were discovered in a patient’s bloodstream.  During the building of the Panama Canal and the occupation of Cuba, the U.S. upped it’s efforts to control the disease and successfully “eliminated” it from the U.S. by the efforts of the Center for Disease Control in 1951. It took 70 years from discovery to cure.

In 1912, Measles had become a problem in the States and had to be reported by all physicians. In the first decade after, 6,000 deaths were reported.  A vaccine was created in 1962 and made available; however, Measles wasn’t considered “eliminated” from the U.S. until the year 2000.  That’s 88 years.

Conclusion

So, in conclusion, what have I found today?  That different sources all have different estimates of how many women have Endometriosis today.  It has varied between 2% – 15% of women either have, or will develop, Endometriosis.   To quote the National Institute of Health, “Because some women might have Endometriosis, but do not have symptoms, it is difficult to know exactly how many women have the condition.”  The world may never know just how many women carry this disease inside of our bodies.

The one thing I am certain of since today’s assignment: too many women have Endometriosis.  Better treatment, and  a cure, must be developed.  And I know steps are being taken by various agencies around the globe to do just that.

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Resources:

American Family Physician

Center for Disease Control

Endometriosis Foundation of America

Endometriosis UK

Florida Hospital

US National Library of Medicine

World Endometriosis Society

 

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from a fellow WordPress blogger, Elizabeth, “How about some percentages and recent stats on Endometriosis?”  So research began!  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

What do you want to know?

Today is Sunday! And Sunday is Reader’s Choice Day! If there’s something you’re curious about with Endometriosis, treatments, my journey, etc., please feel free to comment below!  I’d be happy to do some research and write about it 🙂

Yours,

Lisa

Tag Teamin’ Against Endo!

tagteam
Tag Teamin’ It!

I cannot believe it!

When I was first diagnosed in June of this year with Endometriosis,  I searched for art to make me feel more beautiful.  I needed something… And I found “Sinta” on Etsy.com by GiGiMarie Stationary.  After contacting the artist and asking if the painting could be placed onto a journal and explained why, we bonded : GiGi painted “Sinta” after she learned of her own diagnosis with Endometriosis.  We all cope in our own ways, eh?
GiGi custom-ordered me a journal with her artwork on it.  And her painting also hangs in my living room, a daily reminder that we are still beautiful.  And we’ve been friends ever since.
journal
“Sinta – Self Potrait” (1997) : My Personal Journey Journal
This morning, I received an email from her: she is going to sell the 160-page journals on Etsy for $40 each, offering 15% of each sale directly to the Endometriosis Foundation of America!  Why a journal, you ask?  Because it’s healthy for us to express ourselves, document our histories, and refer to our past entries for confirmation/validation.  You can read more on that here.
If you would like to support GiGi’s fundraising efforts and purchase your own Journal, click here: https://www.etsy.com/listing/212732032/my-personal-journey-end-endometriosis
AND, each person who buys a journal will also receive a Bloomin’ Uterus button in the mail from me. 🙂  More on my fundraising efforts, and the button, can be found here: https://bloominuterus.com/fundraiser/
Bloomin' Uterus buttons
Bloomin’ Uterus buttons
I am absolutely flabbergasted at the pure bonding, strength, support, and ACTION that we are capable of.  Anyone can do something to help.  In any cause.  It’s amazing to me! And I’m honored by GiGi’s offer to work together to help raise funds.  We will continue to fight to find a cure for what ails us.
It only takes a leaf gently falling from the sky to cause ripples in the pond below.  Let’s cause ripples, Ladies.  Tidal waves, even!
 ripple
And please feel free to share this blog, or these links, with anyone and everyone you think may be interested!  Yours, Lisa

Daily Journaling (Not Blogging) for Endo Health

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So before I started blogging, I was keeping a daily journal of my daily diet, activities, exercise, symptoms, and pain levels.  I must admit, I’ve been bad these past 2 weeks (more blogging than journaling!).  But I will get back into it : for ME!  I don’t do the whole “Dear Diary” thing I did when I was a kid, and the entries are only about a page long each, but it sure get’s the job done!

If you haven’t tried it, it’s fascinating!  You keep track of your daily meals, beverages, snacks, activities (if they’re beyond your normal day), exercise (if anyyy), symptoms, and pain levels (and locations), and if needed: what pain killers (and doses) you had to take that day.  Below is an example of a “Pain Diagram”, where you log the location and severity of pain.  I doodle in my journal, or just note something like: “Pain: 4/10; Location: lower back.”  My pain scale is 1 – 10, 1 being the lowest, 10 the most intense.

pain diagram

If you haven’t tried it, you may want to.  Keep track of what you alter, in case it actually does help reduce your symptoms. You can track what it may have been! Cut something out, give it a few weeks and see how your journal entries may have changed.

Being able to go back through the journal to see what foods or activities may have affected the day, or the day after, is a very fun way to read your body and gauge your reactions (and recovery times) to certain things.

gauge

If you DO journal already to track your symptoms and progress, what systems do you use? Find that it helps?

Yours,

Lisa

Readers Choice : Hysterectomies & Endo

melonballer

Hystery (haha) of Hysterectomies

The first recorded vaginal hysterectomy was in the 2nd Century AD, performed by Soranus of Epheus for a prolapsed uterus.  During the 18th Century, there was a 90% mortality rate for women who underwent hysterectomies.   And in 1843, Dr. Clay performed the first successful subtotal hysterectomy in Manchester, England, although the poor women died several days after her surgery. In 1847, chloroform was introduced as an anesthesia during surgeries, but due to it’s toxicity, surgeries had to be performed within one hour.  In 1853, Dr. Burnham of Massachusetts, performed the first successful abdominal subtotal hysterectomy with a surviving patient.  Interestingly enough, it was somewhat accidental: while excising an ovarian cyst, his patient vomited (there was no anesthesia) and the force of her vomiting pushed the uterus out of the abdominal incision. Unable to return the uterus to the cavity, Dr. Burnham was forced to remove it.  During his next 15 hysterectomies, he only lost 3 patients.  In 1878, German doctor, Freund, introduced the first reproducible “simple” hysterectomy; and in 1898, Austrian doctor, Schauta and his student Wertheim, performed the first successful radical hysterectomy for uterine cancer. In 1929, Dr. Richardson of the United States performed the first total abdominal hysterectomy.  France introduced the gynecological laparoscopic surgery in the1940s; however, the first laparoscopic hysterectomy was not performed until 1988 by Dr. Reich.  The DaVinci robotic laparascopic system was approved by the FDA in 2000 and the first robotic laparoscopic hysterectomy was performed in 2005.

Some statisticians believe that 300 out of every 100,000 women will undergo a hysterectomy for a variety of medical reasons.  And some say 1/3 of American women will have a hysterectomy by age 60.  Some insurance companies consider hysterectomies an elective procedure and may not cover the costs of the surgery…

Female reproductive organs
Female reproductive organs

Different types of Hysterectomies

A partial hysterectomy (aka supracervial or subtotal) is when the doctor only removes the uterus, leaving the cervix intact.

A total hysterectomy is when the doctor removes the uterus and cervix.

A radical hysterectomy is when the doctor removes the uterus, the cervix, the tissues around the uterus, and the top part of the vagina.  This is generally performed only when cancer is present.

What about the ovaries?  If the doctor decides to remove an ovary (which is optional), it’s called an oophorectomy.  If both ovaries are removed, it’s considered a bilateral oophorectomy.  Salpingo-oophorectomy is the removal of the ovary and its adjacent Fallopian tube.

Hysterectomies can be performed traditionally (a large incision through the abdomen) or minimally invasive (laparoscopy, robotic laparoscopy, or even through an incision in the vaginal canal).

What to Expect Afterward

If a woman undergoes a traditional, open hysterectomy, she can expect more than a 3-day stay in the hospital.  She is also expected to return to normal daily activities in 4-8 weeks. Most women are ordered to avoid sex and lifting heavy objects for approximately 6 weeks.

If a woman undergoes a minimally invasive hysterectomy, she could be home as early as 2-3 days.  She is also expected to return to her normal daily activities in 3-4 weeks.  Some women recover in 1-2 weeks with the vaginal hysterectomy.  Most women are ordered to avoid sex and lifting heavy objects for approximately 6 weeks.

If the woman had both ovaries removed during her procedure, her body will be thrown into instant and irreversible menopause.  She may suffer from the usual horror stories: hot flashes, night sweats, lack of sexual desire, hair loss, vaginal dryness, etc.

If the ovaries were not removed, the woman may enter menopause earlier than she would have prior to surgery.

How Does It Cure Endometriosis?

It does not. There is no cure.

A hysterectomy may ease our suffering because we no longer have monthly periods.  But if the surgeon accidentally leaves behind any Endometriosis implants or cells within our bodies, it is likely our symptoms will return.  Many, MANY women claim relief from their Endo symptoms after having hysterectomies. However, many also claim their symptoms returned afterward.

After a hysterectomy, especially if both ovaries were removed, a woman may start hormone replacement thereapy (HRT).  Most HRT regimens include Estrogen.  It is believed that Endometriosis feeds and grows off of Estrogen…so if any cells remain inside of a woman, they will continue to grow, despite having undergone a hysterectomy…and the symptoms may return.

There simply is no proof that a hysterectomy is a guarantee of Endometriosis relief.  It is a hope, a relief; however, not a cure.

vaginal-mesh

Transvaginal Mesh

Transvaginal mesh may be placed inside of the abdominal cavity after a hysterectomy to prevent pelvic organ prolapse. Pelvic organ prolapse is when the weakened pelvic floor muscles allow organs to drop into the vagina.  Some surgeons opt to insert tranvaginal mesh, a sort of “safety net” for organs so they do not drop down into the vagina.  However, there have been thousands of complaints to the FDA from patients who have suffered injuries due to “device failure,” including the mesh moving around inside of their abdominal cavity causing scarring, pain, urinary problems, painful sex, and “mesh erosion.”  This alone makes me terrified of a hysterectomy.  I don’t want the mesh!

Potential Risks

In additional to the normal risks associated with all surgeries, some women who have hysterectomies may have the following future medical problems:  blood clots; urinary incontinence; vaginal prolapse (part of the vagina coming out of the body); fistula formation (a connection between the vagina and bladder); and chronic pain.

Alternatives to Hysterectomy

Many women with Endometriosis have opted to follow a more natural course of treatment.  Altered diets, supplements and herbs, essential oils, sitz baths, and massages.  They strive to maintain a hormonal balance and control their Endometriosis symptoms and growths and avoid surgery.  There are many webpages and books available on these subjects.

Some women opt for multiple excision surgeries as opposed to a hysterectomy.  There is also uterine ablation (augh!).

When the time comes for me to talk to my doctor about a hysterectomy, I’m not sure what I’ll do.  Honestly : no clue.  But I do feel far more educated today than I did yesterday!

Resources:

AdvancedGyn.com

Biomed.brown.edu

Estey & Bomberger

Department of Health : New York

Discoveries in Medicine

Drugwatch

Endometriosis.org

Emedicine.medscape.com

Ethesis.helsinki.fi

Healthywomen.org

HysterectomyRx

Medicinenet.com

Medline Plus

qis.net

uptodate.com

WebMD

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from Pamela Benenati-Chandler, “I would like to know more about Endometriosis and recommended hysterectomy??” This topic appealed to me since it also may be in my very near future.  So research began!  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

Feel Good Fridays!

This week’s Feel Good Fridays quote is from German filmmaker, Rainer Werner Fassbinder.

“It isn’t easy to accept that suffering can also be beautiful… it’s difficult. It’s something you can only understand if you dig deeply into yourself.”

This is for all of those who are suffering, not just us EndoSisters. Dig deep. Find that beauty through the pain.

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WWII “Dig for Victory” campaign poster

Birth Control Pills & Endo

pill

I’ve been advised that once my Lupron Depot treatments are concluded in January, I will be starting a continuous birth control pill.  This is in the hopes to continue to suppress my monthly period, and theoretically my Endometriosis symptoms.  Endometriosis is “fed” by our Estrogen levels.  Doctors may not know what causes Endo, but they mostly agree that it feeds and reacts to our Estrogen levels, as well as the influence of xenoestrogens (environmental estrogens).

But How & Why is it expected to work?  I totally like to know the science behind things…

Estrogen

Estrogen is a naturally-occurring group of hormones (referred to as Estrogenic hormones) and is produced in the ovaries, adrenal glands, and fat tissues.  It cruises around in our blood stream, binding to certain receptors, which effect our breasts, uterus, liver, brain, bone, and other tissue.  It controls the uterine lining growth, breast growth, bone growth, cholesterol levels, and other metabolic functions.  It also helps prevent bone loss, along with healthy doses of Calcium and Vitamin D, and keeps our vaginal bits moist and happy, and our vaginal lining thick and healthy.

A decline in Estrogen levels can bring on symptoms of menopause: night sweats, hot flashes, mood swings, migraines, and ultimately a halt of your monthly cycle.

Lupron Depot is a medication that blocks certain signals from our brain so that our ovaries stop making Estrogen.  Our bodies then go into menopause, but it is temporary and chemically induced.  I am currently undergoing Lupron Depot injections for my Endometriosis.  I’m now in Month 3 (out of 6) and I am finally pain and period-free.  The side effects of the drug sucks, but at least now I have a better understanding of why my body is going through what it is going through.

I had no idea Estrogen was so…important…

Birth Control Pills

Birth control pills are usually a combination of estrogen and progesterone hormones.  This combination generally maintains hormone levels, preventing ovulation, altering the uterine lining, and preventing pregnancy.  You take the pill each day, until the last week.  During that last week, it’s usually a sugar (or placebo) pill.  The change in the pill allows your period to start.  However, those of us who may be taking continuous birth control pills will not have our periods (we either do not take the placebo pill, or simply do not have the placebo pill).

A 2017 study found that progestin-only pills may be a better option for women with Endometriosis.  Feel free to talk to your doctor about the pros and cons of a progestin-ony option.

Endometriosis & The Pill

The pill does not cure Endometriosis.  Remember, there is no cure (yet).  The pill maintains our estrogen levels, hopefully slowing (or even stopping) the growth and progress of the implants and adhesions.  It also suppresses our periods, if you go on a continuous pill.  If you go on the regular pill, it is said that it severely alleviates the painful symptoms of menopause.

My last Lupron Depot injection was January 15, 2015.  After speaking with him regarding various options, I chose a continuous birth control pill and was on it for 18 months. I only had my period four times during those months, and it was glorious! Unfortunately, my pain returned in early 2016, and my Endometriosis had returned, requiring a second excision surgery in September.  Since BCP did nothing to keep my Endometriosis at bay, I’ve opted to not start another regimen.  So far I’ve been mostly pain-free since my September surgery *knocks on wood*.

Have your own experiences to share regarding Endo & The Pill?  Drop a comment below!  And did it work in controlling your symptoms?

** Updated February 16, 2017 **

Resources:

Dr. Lam

Endofacts.com

Endometriosis.org

Ezinearticles.com

Fertility & Sterility (2017, Abstract) Progestin-Only Pills May Be a Better First-Line Treatment for Endometriosis than Combined Estrogen-Progestin Contraceptive Pills

Go Ask Alice

Healthy Women

Planned Parenthood

WebMD

Wikipedia

Women to Women

*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