Equestrians with Endometriosis

Marilyn Bassett-Coffey

Nov 20, 202210 min read

Updated: Dec 1, 2024

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Who are the Suffering:

Endometriosis is estimated to affect about

200 million women worldwide and about 1 out of every 10 women in the United States. Sadly, those numbers above are just the ones who get diagnosed…

This disease is often misdiagnosed or missed altogether. Lack of education and public awareness is part of the reason that Endometriosis goes undetected.

This painful condition affects more than just women all around the world, as often families are impacted as well. Chances are, you, or someone you know (perhaps a student), suffers with pelvic PAIN.

The Journey for Answers:

It takes an average of 10 years for woman to get a proper diagnoses.

It is common for Doctors to throw around “blanket diagnoses” such as UTI, IBS, bad PMS, Leaky Gut, etc.

Sadly, outdated, un-scientifically proven, misinformation “treatment plans” are often suggested such as: Get pregnant, Get a Hysterectomy, Take Pain Meds (to mask the problem/pain), Anti-depressants, Diet, the list goes on…

Because of the lack of education and research into this disease, suicide /self-harm is sadly common.

My Journey:

My journey started back in 2016.

I had what I thought was normal pain growing up, but over the years it turned to chronic 24/7 flank pain. After years with no answers, I finally found a doctor that was willing to try to a Laparoscopy surgery to see why I was in pain. This doctor did give me an “Endometriosis diagnosis,” but offered little to no help for treatment or management of the Endometriosis he found. It took me 6 more years before I found a doctor that actually helped me manage my Endometriosis. By that point, it was now back to Stage 3, and had completely adhered my appendix to the side wall of my abdominal cavity and internally nearly froze my left side solid.

More than one doctor told me to “...just accept your symptoms as your new normal.” But I was determined to overcome this pain, so I went to work doing research.

Both before my diagnosis and after my parents and now husband (Andrew) were very supportive… My family continued to be by my side as I began my journey to answers, and not long after my diagnosis, I married the love of my life, Andrew. He has been a very supportive husband during this journey.

I was in (Doctor prescribed) “Medically Induced Menopause” for 4.5 years. This was miserable! …But (for me) it did help with the Endometriosis symptoms.

Gut health and managing Endometriosis symptoms do have a connection. For me, that was using Plexus to help keep my gut inflammation down; this was helpful when I would get the bad “flare ups.” However, gut health alone IS NOT A CURE!

Pelvic Floor Therapy really DID HELP the most for me! Especially the “Combo Unit.” (The “Combo Unit” was an Ultrasound and Tens Unit combined).

Despite the odds stacked against us, and from the beginning being told, “you will likely not carry to full term,” (due to the damage from Endometriosis). My husband and I tried for children, and to our shock, we got pregnant and are now BLEESED with Raylyn, our daughter.

The information I am going to share in this article I want the readers to understand a few things first…

Disclaimer!

I am NOT a Doctor or otherwise a medical professional!
I am NOT here to treat or diagnose anyone both now or in the future!
Some things shown/discussed in this presentation might be considered “explicit content” as we will be explaining some issues the reproductive organs can have, images of organs during surgery, and naming body parts.
The information I share with you here I have learned and gathered over several years of research and PERSONAL experience. If a DOCTOR wishes to point out any “error” in the information I have shared here, I would be open to discussion. However, the information I share I can prove.
I do NOT wish to offend anyone of a different race / ethnicity or identity, but my knowledge only extends to my personal experience, and those that share information to me.
I simply want to share my story and what I have learned

What is Endometriosis?

A disorder in which the tissue similar to the inner lining of the uterus (endometrium) grows/spreads outside the uterus.

“Endometriosis Lesions” can spread throughout the body typically starting in the pelvis and over time spreading systemically to the entire body. (There are known cases Endometriosis Lesions spreading to the lungs and brain).

Endometriosis Stages:

Stage 1

Minimal
Few superficial implants

Stage 2

Mild
More and deeper implants

Stage 3

Moderate
Many deep implants
Small cysts on one or both ovaries
Presence of filmy adhesions

Stage 4

Severe
Many deep implants
Large cysts on one or both ovaries
Many dense adhesions

Common symptoms of Endometriosis:

Chronic PAIN in Lower Back, Pelvis, Lungs, Legs and/or other Organs (including the Brain)
Lesions that adhere and penetrate organs (very painful)
Painful/Irregular menstrual periods
Depression
Pain during or after intimacy
Infertility
If left untreated, is 90% likely to develop uterine cancer
Pain with bowel movements
Bloating/Swelling
Fatigue/Brain Fog
Collapsed lungs (if Endometriosis has infiltration that far)
Weight challenges

How does one get diagnosed with Endometriosis?

Laparoscopy Surgery This is the number one most accurate way to receive a diagnosis!

ONLY in some extremely advanced cases and with an exceptionally trained Doctor reviewing results can Endometriosis be seen on ultrasounds, MRI’s, or CT scans.

There is research / testing in development for Doctors to use a dye contrast to help “highlight the Endometriosis lesions” for imaging and for Laparoscopy Surgery.

Excision and Ablation are two different methods for endometriosis surgery. Ablation may vaporize the surface of a lesion and my still leave active disease below, and it is particularly true for deeply invasive nodules of the uterosacral ligaments. It is my opinion that Excision is far better choice for removal than Ablation.

Some statistics on the impact of Endometriosis on Woman

85% of women with endometriosis reported reduced quality of their work

51% of the women in the study reported that their disease detrimentally affected their

job or hobby(s)

11hrs (or a quarter of their work week) lost to women who suffer with Endometriosis due to

pain through lost productivity at work and absenteeism 45% of endometriosis patients with children report that endometriosis has had an impact

on their activities related to caring for their families

*These Findings/Results were found @ herendometriosisreality.com where you can see list of sources and other documentation.

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Is there a cure?

Sadly…

There is NO CURE!

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Does pelvic pain affect horseback riding?

YES, it can!

Pelvic pain relates to horseback riding because of the nature of riders using their core and seat to influence the horse’s movement.

In addition, having pelvic pain can directly affect the riders’ ability to improve their riding skill.

How does pelvic pain affect riding?

Pain in the abdomen or pelvis can cause the body to compensate and create asymmetry in the body. This can affect the rider’s balance, confidence, and ambition.

Improper use (or dysfunction) of the pelvic floor mussels can make riding (or after the ride) very painful. Using the pelvic floor correctly, (or without dysfunction) can actually improve your symptoms.

Adhesions/Lesions in or around the pelvis/abdomen can actually hinder movement and make simple hip movement difficult, if not painful.

Excessive heavy menstruation/bleeding can affect the rider’s comfort level when in the saddle.

When dealing with chronic pain of any kind, “brain fog” is a common result, and this can cause the rider to suffer with memory problems or difficulty following directions.

Often when trying to manage symptoms, medications can leave a rider with negative side effects that influence them physically and mentally.

Do’s (Before Diagnosis):

Do your own research
Look up “Nancy’s Nook” Facebook group and find a “Nook Doctor” (see link below).
Talk to your doctor… really explain your (lack of) quality of life.
Read the books “The Doctor Will See You Now,” and "EndoMEtriose" by Dr. Tamer Seckin, M.D.

Get a second opinion, if needed
Get Physical Therapy (ideally in the form of a “combo unit” and / or “Pelvic Floor PT)”
A “Tens Unit” and a “heating Pad” can be helpful to manage pain

“Nancy’s Nook” Facebook QR Code below

Don’t do this… (Before Diagnosis)

See a “general OBGYN” who might not be skilled treating or familiar with Endometriosis.
Ignore or dismiss your chronic pain.
Stay quiet about what you have learned about Endo.
Treat Endometriosis without proper diagnosis.
Loose all hope and give up.

Getting “Back in the Saddle” After a Laparoscopy Surgery

Do’s and Don’ts

Do’s:

Take about 6-8 weeks off from riding or heavy lifting!
- Doing this will help prevent more scar tissue from coming back quicker.
WALK every few hours (on your own two feet).
- This will help with the gas pain from the surgery.
(Re)-Connect with your Pelvic Floor
- “Franklin Ball/Peanut Roller” https://a.co/d/1YYxnAX
- Diaphonemic Breathing with P.F. exercise(s)
- Find a Pelvic Floor Doctor (PT) (Ideally one that offers the “Combo Therapy” option).

Don’ts

Only take 4 days (or less) off from your riding before jumping back into the saddle
- …Yes speaking from experience… Do not get back to riding so soon!
Lift more then 5-8 lbs. until released by your Doctor to do so.

Misconceptions

Things people say that HURT and do not help!

“You don’t look sick.”

“Periods are suppose to hurt… buck up this is normal.”

“Lose some weight…”

“Take MORE pain meds.”

“It’s all in your head…”

Possible “Treatment Options”

(But does not always work)

Get pregnant: This is not very successful and for many it can make matters worse. For a few pregnancy can temperately helping manage symptoms (Defiantly NOT A CURE!)
Hysterectomy: This is only successful if 100% of Endometriosis lesions are excised from the body… if even one lesion is missed Endometriosis will continue to grow even without the woman’s reproductive organs.
Change in Diet: Limiting the amount of “inflammation” can help manage pain/bloating but changing your diet solely will not change the damage Endo can have on the body.
Massage or Acupuncture: …Again lowing inflammation in the body helps and some might find some relief, but this will likely not slow or change the ever-present Endo.
Birth Control: In most cases this could be contuses birth control to “trick” the body into stopping ovulation or taking BC during a targeted time of the month to help reduce the symptoms. This “reportedly” seems to help most individuals with their Endometriosis symptoms… but does not work for everyone. Also… BC is still NOT A CURE! For some it’s borderline masking the problem.

DANGEROUS Drug or “Treatment” options…

Lupron is sometimes recommended by doctors… but I personally could/would NEVER recommend… Why? …Here is WHY!...

•Lupron has a “Colorful History” being a dangerous drug not only for women

but men as well.

•The drug was designed as a cancer fighting drug for prostate cancer.

•In 2003 the producers of Lupron were sued $874,000,000 million dollars!

(That is one of the largest fines that has ever been paid out by a pharmaceutical company).

•They were deemed a “Criminal enterprise” by the U.S. Government.

•With over 6000 reported deaths from complications and over 45,000 listed possible side affects it completely blows my mind that thus drug is still being recommended to anyone!

•The analysis of the data used to bring Lupron to market for endo care was found to be fraudulent. When that analysis was sent court, “Tap/AbbVie” got a court order to hide the analysis claiming it was “proprietary.” (In other words, saving their income was more important that saving your life, or your ability to have children given that Lupron is noted to destroy ovaries and the company quit following and posting that data).

•Lupron is used as chemical castration in prisons for pedophiles…

Take this drug if you want… but be prepared for long term side effects and maybe more!

Do your own research!!

Myth or Facts?

Myths about Endo that are passed off as truth are as follows:

Hysterectomy will cure Endometriosis. NOT TRUE!! (See bullet points above).

Diet will cure your Endometriosis. NOT TRUE!! (See bullet points above).

Endometriosis is rare. NOT TRUE!! (1 in 10 Woman in the world is not rare).

Endometriosis can be prevented. NOT TRUE!! (Women are born with the predisposition for Endometriosis or they are not. There are a few reported cases of women getting an Endometriosis diagnosis after a “bad c-section” where doctors suspect that endometrium spilled into the pelvic cavity, but this is rare and not the majority of Endometriosis Warriors story).

Endometriosis is caused by an STD. NOT TRUE!! (Frankly I find this is just downright insulting).

Endometriosis is caused by a “Belly Button Ring(s).” NOT TRUE!! (I have actually had a female OBGYN tell me in my 1st visit with her, that my Endometriosis was caused by “My belly button ring.” Funny thing is… I have never had a belly button ring! What is it they say about assumptions? I left the office immediately).

Does Pelvic Floor PT really work?

YES! When Pelvic floor PT is done correctly, learning certain pelvic floor exercises helps with pain management and better pelvis mobility. This in turn will mean a better riding experience overall!

What is Pelvic Floor PT?

Pelvic floor PT addresses the muscles, ligaments, connective tissues, lymphatic system, and joints inside and surrounding the pelvic girdle, often in intimate regions that few people associate as “muscles.” (Like other types of PT, Pelvic floor PT focus is on “movement disorders” such as “hypermobility and hypomobility).”

The Pelvic Floor and the Diaphragm:

The Pelvic Floor and the Diaphragm are designed to work together, doing the same thing at the same time.
When you inhale, the diaphragm should drop increasing the space in the lungs and the pelvic floor drops as well.
Learning how to do this both on the horse and off the horse for me has proven VERY helpful.

Is my Doctor giving me good advice?

Can he/she prove higher education in regard to Endometrioses? Not all OBGYN’s have the education necessary specifically on Endometriosis to properly help you.

Compare what your doctor tells you to other leading experts all around the world. Is he/she recommending treatments that have been publicly disproven by the experts?