Endometriosis and Art-Making:
A Journey from Struggle into Advocacy: Turning Pain into Purpose.
I was diagnosed with Stage 2 endometriosis in 2018, and part of the reason for creating this website is to inform and advocate for those suffering from endometriosis.
Endometriosis is an extremely underfunded whole body disease, even though about 190 million women worldwide have Endometriosis.
Endometriosis has been included in the top 20 most painful chronic conditions.
Some of the typical experiences of those afflicted with Endometriosis include:
Pain so severe that it can cause sufferers to pass out
Many years of pain and agony before a correct diagnosis is received
Days, weeks, months or longer spent bed-ridden without effective treatment or pain relief
Doctors, friends and family members not believing you are ill
Finding little or no relief from opioids, anti-inflammatory drugs, or alternative wellness approaches.
Enduring other illnesses simultaneously
Undergoing multiple surgeries
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What is endometriosis?
Endometriosis is a complicated and debilitating chronic disease that affects the body in a widespread manner. Tissue that’s similar to the uterine lining grows outside of the uterus, and develops in other parts of the body. It forms implants that cause pain and inflammation.
Endometriosis can be found in pretty much every part of the body, not just around your pelvic and reproductive organs. It’s been found in the bladder, bowels, in the digestive system, gastrointestinal system, appendix, kidneys, diaphragm and even in the brain!
For example, if endometrial tissue implants itself on the lungs or diaphragm, which is called thoracic endometriosis, it can lead to extremely distressing symptoms like coughing up blood, and recurring lung collapses.
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What are adhesions?
Adhesions are tough bands of scar tissue that form between organs. They cause organs to stick together and interfere with normal bodily functions. This can cause debilitating pain and limit your mobility. It can cause infertility because it can block fallopian tubes. Bowel obstruction, chronic pelvic pain, urinary tract issues, and loss of function in organs can all be caused by adhesions.
For example, if Endometriosis grows around or inside the ureters, which are the tubes responsible for draining urine from the kidneys, it can cause blockages and damage the kidney, and it might be necessary to remove all or part of the kidney.
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Symptoms
Some of the symptoms of Endometriosis are; debilitating back pain, heavy periods, chronic pelvic pain, nausea, vomiting, infertility, painful bowel movements and intense fatigue.
Many describe the pain as a severe stabbing sensation, as if being stabbed with an ice pick. Other sensations felt include the feeling of barbed wire tightly wrapped around the abdomen and hips. Many have also reported feeling an intense throbbing, burning sensation throughout the pelvis, as well as shooting pains similar to static shocks, and the sensations can radiate down the legs. The pain has also been described as being extremely sharp, accompanied by a pulling and twisting sensation, or a feeling of your insides being ripped apart. In addition to all these symptoms, many have also reported a feeling of being burned with a hot poker, or a feeling of a strong vice grip around the hips and pelvis, squeezing tightly like a metal clamp.
For many, including myself, the pain can be so severe that it can cause loss of consciousness (fainting).
If you have close relatives with endometriosis, you have a higher chance of having it too.
While endometriosis itself is not fatal, it is a progressive disease and without a timely diagnosis and treatment it can worsen, and can cause life threatening complications.
The unfortunate reality for many sufferers is that they are told that their pain is “all in their head” which only causes more frustration and a delayed diagnosis. Sadly, women’s medical complaints and symptoms are generally taken less seriously than men’s.
On average, it takes 5 to 10 years to diagnose, with delays of up to 27 years reported! Some reports have identified extreme cases reaching 40 years! That is insane!
Many people in Canada, including myself, have sought medical care in other countries.
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Diagnosis
Even with negative radiology, meaning that you’ve been told that nothing is showing up on your ultrasounds, CT or MRI’s, you can still have endometriosis! Imaging is useful for detecting things like larger lesions, but they can fail to identify small and superficial implants, and deep implants that are hidden behind organs. Plus, if your pain persists, then clearly you need a more thorough evaluation!
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What is endometriosis mapping?
Endometriosis mapping is like having a detailed 3D blueprint of your body. It can help your medical team look for deep lesions and see how extensive the disease is before surgery. It’s a big step from a standard ultrasound, but it can often miss superficial endometriosis. So if you get a ‘clear scan’ this does not mean that you do not have endometriosis.
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How is endometriosis diagnosed?
THE GOLD STANDARD FOR A DEFINITIVE DIAGNOSIS IS LAPAROSCOPIC SURGERY.
What is laparoscopic surgery?
Tiny cuts are made in the abdomen, and a laparoscope, (which is a thin tool that has a light and a camera), can help the surgeon see the lesions. A small piece of any unusual tissue is removed and sent to a laboratory where a pathologist examines it and confirms the findings. A biopsy is the sole method to confirm endometriosis.
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Four Stages
Endometriosis is divided into four stages according to the number of lesions and depth of filtration:
Stage 1 – Minimal
Stage 2 – Mild
Stage 3 – Moderate
Stage 4 – Severe
It’s very important to note that the stage of disease does not equal the level of pain experienced by sufferers. The stages only refer to the physical spread of the disease, and NOT how severe the symptoms are! Therefore, someone who has Stage 4 may not feel a lot of pain, whereas another person with Stage 2 can experience severe pain.
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What is excision surgery?
Excision surgery is a laparoscopic procedure that cuts out the tissue, removing it from its’ root. It should only be performed by an endometriosis excision specialist, as advanced surgical skills are required.
Excision surgery offers more effective long-term relief.
Ablation surgery on the other hand just treats the surface by burning the superficial layer of the disease. This means that pain can return very quickly after this type of surgery.
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Why do you need a multidisciplinary team?
A team of specialists from different fields is necessary for handling complicated cases, especially when there is endometriosis that has burrowed deep into your organs. If the disease has spread to the bowel or bladder, a gynaecologist would work with a colorectal surgeon for the bowel, and a urologist for the bladder in order to perform the most thorough removal.
For managing advanced cases of endometriosis, an endometriosis care team can include an excision surgeon, a colorectal surgeon, a urologist, a thoracic surgeon, a pelvic physiotherapist and a pain specialist.
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Commonalities and challenges
Many who suffer with this disease have chemical sensitivities, allergies and intolerance to foods such as gluten, dairy, and red meat. These foods can lead to inflammation and aggravate the symptoms of endometriosis.
They are also more likely to have multiple illnesses and are at a higher risk of developing other conditions as well, particularly inflammatory and autoimmune diseases.
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Treatments
Many people mistakenly believe that a hysterectomy will eliminate this condition, but it does not, as it can recur or persist afterwards.
There is currently NO CURE for Endometriosis.
While there is no cure for Endometriosis, the symptoms can be managed with proper excision surgery, various medications and diet modifications.
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Sources of information:
(World Health Organization, 2025)
(NIH National Institute of Health, 2017)
(Mayo Clinic, 2025)
(The Endometriosis Network Canada, 2025)
(PubMed, 2017)
(EndoNews, 2023)
If you live with a chronic illness like Endometriosis, you may be familiar with some of the so called “harmless” comments others make which can actually be quite hurtful.
Some of the comments that have been directed towards me or towards others:
“You don’t look sick”
“You’re too young to be that sick”
“You just need a vacation”
“I know someone with that condition, and they’re doing okay, so it must not be that bad”
“You should try (insert whatever remedy they think will magically cure it)”
“You’re lucky you don’t have to work full time”
“How can you be bedridden one day and then go out the next day? I think you’re just exaggerating your pain!”
“If you don’t focus so much on your pain, it’ll go away”
“I’m sure you’ll feel better soon!”
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What is Medical Gaslighting?
Medical gaslighting happens when a doctor dismisses or minimizes your physical symptoms. This can lead to lost time, unnecessary physical suffering, worsening health with the possibility of permanent damage from diagnostic delays, as well as the the emotional exhaustion of having to defend your own reality. They might say things like:
“It’s all in your head.”
“You’re just stressed/anxious.”
“Your tests are normal, so there is nothing wrong with you.”
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What is Medical Intimidation?
Medical intimidation is when a doctor makes you feel guilty, fearful or ashamed for wanting a second opinion. They might say things like:
“You’re just doctor shopping.”
“Any other doctor will tell you the exact same thing.”
“If you don’t trust me, maybe you should find a different clinic.”
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How to Speak Up For Yourself
If a doctor refuses to run a test or provide treatment, ask them to note that refusal in your medical record.
You can bring a friend, partner, or a patient advocate with you to your appointments.
You are allowed to seek as many opinions as you need. A doctor who gets mad or upset if you want more information or other opinions is behaving unprofessionally. They should be on your team, not someone you have to fight with just to be heard.
A good doctor will listen to you and say something like:
“I don’t have all the answers right now, but I believe you, and we will keep searching until we find out what’s wrong.”
Know that you have a right to be treated with respect and dignity.
You deserve to work together with your doctor on all decisions regarding your care.
You deserve a doctor who values your input and takes your symptoms seriously.
The Reality of Being Dismissed
When you’re repeatedly told that your pain isn’t real, it becomes really difficult to function on many fronts, not just from the physical pain, but also from being emotionally worn out as well. It’s a very lonely and exhausting kind of trauma and it can break down your spirit. Many patients stop seeking care because they just can’t bear the thought of being unheard one more time.
It takes a lot of courage to keep pushing forward, but your symptoms are real, and your truth deserves to be heard.
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What’s Inside Your Medical Records?
Your medical records follow you from one doctor to the next. Sometimes a doctor might write down their opinions, like labelling a patient “anxious” or “difficult” which can make a new doctor form an opinion about you before you’ve even had a chance to speak.
What if your notes are inaccurate?
You have the right to review your records and make sure that they are correct.
You can ask your doctor, the clinic’s administrative staff, or submit a formal written request to the hospital’s Health Records Department to fix any incorrect notes. If they won’t change your notes, and you disagree with what is written in your files, you have a right to add a “Statement of Disagreement” so your information is always included in your medical records.
When you see new specialists, you can ask them to do a new assessment first, instead of just reading your old, inaccurate notes. You could say something like:
“The notes in my file are inaccurate and I’d like to start with a clean slate, and do a full physical exam based on the symptoms I’m experiencing right now.”
Trust your gut and remember that YOU are your own best advocate.
Your persistence is your power.
