Archive for the ‘Endometriosis’ Category

How I Got Approved for Disability

June 15, 2021

I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…

Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.

Nope.

My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..

From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.

When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.

By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..

The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.

It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.

My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..

Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.

If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.

This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.

It took several years for this process to complete.

Myth Debunked II of VI

May 9, 2021

IT’S AN UMBRELLA TERM

Yes and No.. Referred to as both a ‘wastebasket disease’ and ‘umbrella term’, fibromyalgia is often seen as a catch-all for symptoms that don’t fit other conditions and can’t be easily explained. Seeing fibromyalgia as a trashcan diagnosis links with the assumption its not a real condition in and of itself.

Yes

Fibromyalgia encompasses a myriad of symptoms, though many people also have additional diagnoses to account for other problems they’re experiencing. I don’t experience fibromyalgia in a vacuum; I also have CFS/ME, Osteoarthritis, Joint arthritis, Depression Hypothyroidism Endometriosis, IBS and Myofascial Pain Syndrome. and so on. I was diagnosed with fibromyalgia in 2006 by a rheumatologist who said I had “Symptoms consistent with Fibromyalgia” was further confirmed with the trigger point test. I even had to correct a doctor who didn’t know exactly when the points are. As a patient of Dr Bested at the Environment Health Clinic and eventually her private practice, she had me running tests out of the wazzo. The results just confirmed yes I have fibromyalgia. I was also ‘diagnosed’ with CFS at that point, but I know if been dealing with even longer than fibro.

No.

Because fibromyalgia can’t be objectively tested and measured, it’s a challenging diagnosis for many doctors to accurately reach and it’s made harder still when healthcare professionals are either sceptical, unsupportive or totally disbelieving of either fibromyalgia itself or the symptoms you’rel presenting them with.

Although it can involve various symptoms, the current list I’m aware of for possible symptoms is over 300 long. Any of these can be experienced differently by each person.

Fibromyalgia is a distinct condition. It may overlap with other illnesses but classic symptoms are still typically prevalent.

COVID Vaccine Eligibility

April 19, 2021

So currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.

Phase 1 is for High-risk populations including

  • Congregate living for seniors
  • Health care workers
  • Adults in First Nations, Métis and Inuit populations
  • Adult chronic home care recipients
  • Adults ages 80 and older
  • Adults with the highest-risk health conditions:

From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.

Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:

  • Adults aged 60 to 79, in 5-year increments
  • High-risk congregate settings (such as shelters, community living)
  • Individuals with high-risk chronic conditions and their caregivers
  • Those who cannot work from home
  • At-risk populations

So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:

Highest-Risk Health Conditions, eligible at phase I:

  • Organ transplant recipients
  • Hematopoietic stem cell transplant recipients
  • Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
  • Haematological malignancy diagnosed <1 year
  • Kidney disease eGFR< 30

Of these conditions, I have none. .

High-Risk Health Conditions currently eligible

  • Obesity (BMI > 40)
  • Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
  • Intellectual or developmental disabilities (e.g., Down Syndrome)

Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..

I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.

At-Risk Health Conditions:

  • Immune deficiencies/autoimmune disorders
  • Stroke/cerebrovascular disease
  • Dementia
  • Diabetes
  • Liver disease
  • All other cancers
  • Respiratory diseases
  • Spleen problems (e.g., asplenia)
  • Heart disease
  • Hypertension with end organ damage
  • Diagnosis of mental disorder
  • Substance use disorders
  • Sickle Cell Disease
  • Thalassemia
  • Pregnancy
  • Immunocompromising health conditions
  • Other disabilities requiring direct support care in the community

Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:

  • Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
  • Diagnosis of mental disorder – I have chronic depression, have since I was 16
  • Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.

I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.

So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.

Awareness. Education. Support. Hope. – Image

March 31, 2021
March is Endometriosis Awareness Month. Awareness. Education Support. Hope.

March is Endometriosis Awareness Month.

Awareness. Education Support. HopE

** Please be advised, I have no rights to these images. I did not create them. I have just found them across the internet.. Don’t ask me were tho**.

Women with Endometriosis

March 29, 2021

I have a huge list of approximately 60 or more international women of note who other has endometriosis or strongly suspected of having endometriosis. I’m just going to.list off a few that I can remember off the top of my head.

  • Jillian Micheals – Fitness trainer, known for TV show “The Biggest Loser”
  • Sinead O’Connor – Irish singer, known for her rendition of “Nothing Compares to You”
  • Hillary Clinton – former First Lady and 2016 Presidential Candidate
  • Marilyn Monroe – Actress
  • Julianne Hough – Dancer, know for “Dancing with the Stars”
  • Susan Sarandon – Actress
  • Whoopi Goldberg – Comedian/Actress/Daytime tv host
  • Cyndi Lauper – Singer
  • Emma Bunton – British Singer, known more commonly as Baby Spice
  • Amy Schumer – Comedian/Actress
  • Daisy Ridley – Actress, known for Star Wars
  • Chaz Bono – Son of Sonny Bono & Cher. (Transgender)’⁰

March Endometriosis Awareness Month Banners

March 24, 2021
Endometriosis Awareness Month

Endometriosis Awareness Month


ENDOMETRIOSIS AWARENESS


March is Endometriosis Awareness Month


MARCH IS ENDOMETRIOSIS AWARENESS MONTh

** Please be advised, I have no rights to these images. I did not create them. I have just found them across the internet.. Don’t ask me were tho**.

My Endometriosis Chronological Journey of Symptoms & Treatments

March 22, 2021

Over the years I have been on many medications & have tried various options for treatment. This is a list of treatments, both before & after diagnosis:

Summer 1988 – Menstruation cycle becoming more uncomfortable and occasionally painful. Treatment? Nothing.. I just figured they were just bad cramps.

Abdominal pain considered just ‘bad cramps’

March 1990 – prescribed Ortho 7-7-7 by my GP at my request for the purpose of lightening & regulating my cycles. This medications did helpat the time.

Winter 1994 – Increase of re-occurring and irregular abdominal pain, beginning in spurts. Pain usually, but not always, eased by soft bowel movement. Minimal impact on quality of life

August 1996 – Increase of re-occurring and irregular abdominal pain, still in spurts. Pain less frequently eased by soft bowel movement. Pain/discomfort had some impact on general quality of life.

Autumn 1997 – By this time, due to frequency in bouts of pain, was able to begin distinguishing between different types of pain as well as circumstance surrounding the pain. The abdominal pain and discomfort was beginning to have noticeable impact on general quality of life.

Spring 1998 – Referred to gynecologist who only adjusted my oral contraceptive to Triphaisal. This was changed back in the Autumn due to side effects ( no, I don’t remember or have record of what they were)

November 1998 – Referred to gastroenterologist by recommendation of gynecologist. Within a month I had a colonoscopy and a diagnosis of irritable bowel syndrome. Prescribed Dicetel which alleviated some symptoms. Referred back to gynecologist in March 1999.

Laparoscopic surgery

The next three months were spent pushing my gynaecologist to perform an exploratory laparotomy to confirm, or deny the presence of Endometriosis within the abdominal area.

June 1999 – Diagnostic Laparoscopy resulted in diagnosis and initial surgical treatment, excisement of Endometriosis. She was unable to excise all of the endometrial tissue as she did not have sufficiently long tools to get to all the areas.

August 1999 -January 2020– Quick return of abdominal pain. Prescribed Lupron hormonal treatment who was an ineffective treatment.

Depo Lupron

January 2020 – Full Laparotomy resulted in excision of remaining & new Endometriosis growth and a left ovarian cystectomy. Back on an oral contraceptive, Ortho 7-7-7.

March 2000 – Due to scar adhesion, approximately 12s layer of muscle fat & fascia scarred together. It took one very long and very very painful hour for my osteopath to loosen the abdominal scaring from my surgery. But OMG, the relief when she was done was phenomenal.

July 2000 – began to experience abdominal pain during and immediately before menstrual cycle., A more typical reaction of Endometriosis

Summer/Fall 2000 – Attempted to try accupuncture & Chinese herbal medicine for Endometriosis. The needles, I have found, don’t help me & usually also give me a migraine.. The herbal had zero impact.

November 2000 – began vitamin therapy to help combat Endometriosis & to improve overall health. It helped as a month later the abdominal pain during and immediately before menstrual cycle decreased.

October 2001 – Ceased oral contraceptive to participate in Endometriosis study .

January- July 2002 Participatef in study for Depot Provera. Received monthly shots of Depot Medroxyprogesterone Acetate Subcutaneous Injections. No change in symptoms while on the medication. Returned to Orthon 7-7-7 upon completion of study.

Depo- Provera

August-December 2003 – Increase again is abdominal pain level throughout monthly cycle, missing increasing amounts of work. The ended December 25 when I went on medical leave.

February, 2004 – Laparoscopic surgery, cautery of Endometriosis & lysis of pelvis adhesions. Bowel declared ‘immobile’ likely due to IBS.

March 3, 2004 – Start Othro Evra Contraceptive Patch continuous.

April 4, 2004 – Start Othro Novum 1/35 oral contraceptive continuous as patch resulted in breakthrough bleeding..

June 20, 2004 – Start Minovral oral contraceptive continuous as Ortho Novum resulted in breakthrough bleeding

January 2005 – Change Minovral to 3 month cycle due to break through bleed

March 2005 – 3 weeks of severe abdominal pain – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet.

Severe Abdominal Pain

June 2005 – Severe abdominal pain again – Thought to be endo related, as corresponded with menstrual bleed. Took Percocet. Started Yasmin oral contraceptive continuous as Minovral had negative side effects. Was told if breakthrough bleeding occured, let cycle come. Unfortunately, I had three visits to ER for abdominal pain, CT scan showed enlarged gallbladder & possibly an ovarian cyst again on right side.

August 2005 – Abdominal, gynaecological ultrasound. Negative result.

October 2005 – Abdominal, gynaecological ultrasound. Negative result.

I don’t recall what I was switch to next, but it was a continuous oral bcp. Have been on a few other continuous birth control pills since then. Been fairly well.controled since then with occasional spots of pain. Changes were due to side effects and allergies.

Mirena IUD

Currently, I am still pre-peri-menopausal & have an IUD. I was also placed on Arthroyec, an anti-inflammatory, in the late 1990’s prior to any surgery but am still on.. The only problem I currently have is the natural bleed I get due to placement of tiny veins/arteries just inside the vagina. My current gynaecologist cauterizes them once or twice a year.

Some Disabilities Can’t be Seen

March 19, 2021

Not all disabilities are visible! In fact, the majority are invisible.. Here is a ist of many of the conditions that are not readily apparent & are ‘invisible’. This list is by no means exhaustive

  • Chronic Pain
  • Arthritis, both rheumatoid and osteo.
  • CFSME or MECFS
  • Fibromyalgia
  • Mental Health including but not limited to depression, anxiety, PTSD,, bi-polar, & schizophrenia…
  • Sleep disorders including sleep apnea RLS and TMJ
  • Diabetes
  • Epilepsy
  • Digestive issues such as Crohn’s, Celiac, Colitis, & IBS,
  • Endometriosis
  • HIV or AIDS
  • Chronic migraines
  • Lupus
  • Lyme disease
  • Multiple sclerosis or MS,
  • Severe Food & Chemical Allergies including Gluten.
  • Renal failure & heart failure
  • Brain injury including concussions, stroke & meningitis
  • Spinal Injuries
  • Fetal Alcohol Spectrum Disorder,
  • Narcolepsy,
  • Repetitive stress injuries like tendonitis & carpal tunnel syndrome
  • Learning disabilities like dyslexia, ADHD, ADD, Dyscalculia, Dysgraphia & Processing Deficits
  • , Ehlers-Danlos syndrome,
  • Myasthenia Gravis
  • Deafness, Blindness, Hearing loss, Speech impairments
  • Autism

Temporary Invisible Disabilities include:

  • Surgery
  • Severe Muscle Strain/Sprain
  • Pregnancy
  • Episodal mental health conditions
  • Severe infections

Awareness Ribbon – Images

March 17, 2021
Endometriosis Awareness

Endometriosis Awareness


Yellow awareness ribbon

Yellow Ribbon for Endometriosis AwarenesS


YELLOW RIBBON FOR ENDOMETRIOSIS AWARENESS


YELLOW RIBBON FOR ENDOMETRIOSIS AWARENESS

** Please be advised, I have no rights to these images. I did not create them. I have just found them across the internet.. Don’t ask me were tho**.

My Atypical Endometriosis

March 12, 2021

When I was first referred to a gynecologist in the Spring of 1998 for abdominal pain that she was certain that it was not endometriosis. She referred me back to my GP with recommendation of a referral to a gastroenterologist as she believed the issue was more through my digestive system then my gynecological system.

I saw the gastroenterologist, had my colonoscopy and did confirm that yes I did have IBS & was referred back to the gynaecologist in March of 1999

Symptoms of Endometriosis: Heavy Menstrual Cycle, Severe Pelvic Pain, Fatigue and Long Irregular Menstrual Cycles

She was still very hesitant on the idea that I have endometriosis as my symptoms were ‘atypical’ . For me my symptoms included

  • Pelvic Pain. Yes, but all month long, not just during my cycle
  • Heavy & irregular cycles but controlled with birth control pills
  • Lack of reaction to Depo-Provera
  • Bowel pain all month long, not just during my cycle
  • Both diarrhea & constipation which could easily just be IBS.

Symptoms I don’t have:

  • Cycle dependant pain
  • Pain during or following sex
  • Heavy & irregular cycles because they were controlled with the birth control pill.
  • No consistent IBS flaring during Menstrual cycle
  • No family history (that we knew of) of endometriosis
  • Severe & regular migraines during Menstrual cycle
  • No bloating
  • No breakthrough bleeding between cycles because cycle were controlled with birth control pills
  • High sex drive as most women with Endometriosis have a below average sex drive

So while I had some symptoms, they weren’t a standard or typical case.After 3 months of pushing her to do an exploratory laparoscope which she eventually did. I think she agreed to do it more to shut me up than believing I had endo.

And low & behold! Endometriosis stage 2 I believe. Since she went in believing she would not find endometriosis, she did not have sufficient tools to access & remove all the endometrial tissues. But I had my diagnosis.

So, if you know you have Endometriosis and your doctor does not, push the issue. Worse case it’s negative. Or if you are like me, you prove your doctor wrong.