Who are the Suffering:
1 in 10 women have Endometrioses
…and those are just the ones who get diagnosed…
This painful condition is affecting women all around the world, and chances are, you, or someone you know, 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Sadly, outdated, un-scientifically proven, misinformation “treatment plans” are often suggested such as: Get pregnant, Get a Hysterectomy, Take Pain Meds (to mask the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!
1. I am NOT a Doctor or otherwise a medical professional!
2. I am NOT here to treat or diagnose anyone here nor elsewhere!
3. Some things shown/discussed in this presentation might be considered “explicit content” as we will be explaining some issues women can have with their reproductive organs, images of organs, and naming body parts.
4. I do NOT wish to offend, but my knowledge only extends to my personal experience.
All of this information I would have LOVED to have known years ago. All I hope for is others to better understand that this is a REAL reality to so many women. Maybe Endometriosis effects someone you know or perhaps yourself.
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 SurgeryThis 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.
Is there a cure?
Sadly…
There is NO CURE!
_________________________________
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”
Talk to your doctor… really explain your (lack of) quality of life.
Read the book “The Doctor Will See You Now,” 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 / dismiss your chronic pain
Treat Endometriosis without proper diagnosis
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).
Find a Pelvic Floor PT Doctor. (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…)
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 helping manage symptoms and is NOT A CURE!)
Hysterectomy (This is only successful if 100% of Endometriosis lesions are excised from the body… if one is missed Endometriosis will continue to grow even without the woman’s reproductive parts).
Medical Induced Menopause (In most cases this can be contuses birth control or hormone replacements to “trick” the body into stopping ovulation. This helps most with Endometriosis symptoms… but does not work for some women. Also… is still NOT A CURE)! Lupron is sometimes recommended by doctors, but I personally would NEVER recommend Lupron because of it’s “colorful history” being a dangerous drug not only for women but men as well. The drug was designed as a cancer fight drug for prostate cancer. But 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. Lupron is chemical castration used in prison for pedophiles… Do your own research!
Change in Diet (Limiting the about of inflammation can help but changing your diet solely will not always help with your symptoms).
Massage or Acupuncture (Again lowing inflammation in the body helps and some might find some relief with Massage or Acupuncture).
Myth or Facts?
Myths that are passed off as truth to women 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!! (Most women are born with the predisposition for Endometriosis. 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 down right 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?
Does he/she listen when you have questions or concerns about your diagnosis or treatment options?
Read reviews from other Endometriosis warriors and what are they saying about that doctor.
Support Groups!
Please Join/Follow my Facebook, TikTok or Instagram to show your support to
Equestrians with Endometriosis
TicTok link: www.tiktok.com/@equestrian_endo_warrior
Marilyn_Equestrian_Endo Warrior
Instagram QR Code
Equestrian Endometriosis Warriors
Facebook Page QR Code
Thank you for reading and please share!
