Yes, I Tried That.

I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..

Medications.

In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good

I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.

I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.

i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “

I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.

Exercise!

You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.

So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.

Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!

Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.

Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.

The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck

Diet.

These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.

I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.

Alternative treatments

We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.

While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.

Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.

Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief

Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term

Injections.

For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain

In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.

lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.

Thank You, But..

Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.

So stop I don’t need or want to hear it.

My Endo

My Endometriosis diagnosis journey is probably a little different than most. Partly because my symptoms are/were atypical, and partly because my Gyn didn’t believe me.

When my menstrual cycle started in Junior High, I was like every other girl. It started sporadically with varying frequency, duration and heaviness (for lack of a better word). But it stayed that way for months. My friends settled into the appropriate 28 day cycle with 3-5 of moderate bleeding. Then there’s the cramping factor. Some of them got mild to moderate cramps, but most didn’t get much at all while I would doubt over in pain. A friend of mine specifically remembers instances of that, but I only remember crawling up in a ball after I got to the nurse’s office.

By the time I was 15 & had been dealing with it for 2+ years, my GP finally agreed to put me on the birth control pill to help regulate my menstrual cycle and to ease the heaviness and the cramping. And it did, to a point.. My cycle became regular yet was still heavier & longer than my friends. But it was something I could live with.

And I did live with it, occasionally trying other birth control pills over the years. I lived with it for the remainder of high school, another three years, then all through college, another 3½ years.. Even when I had seemingly unrelated issues, I lived with it.

By the time I graduated, moved out & got my first job, I was having ongoing & consistent issues, but not necessarily tied to my cycle anymore.

Because of my earlier issues with my cycle & that it initially eased with BCP, he referred me to a Gynaecologist

So, he sent me to see a Gyn and she does a bunch of blood work, physical exam & even did a pap smear. All came back negative except for my Iron levels were low. Give the amount of menstrual bleeding, it wasn’t surprising..

Because my symptoms were atypical, not directly connected to my menstrual cycle and I was having issues with evacuation, she figured it wasn’t endometriosis and recommended that I see a gastroenterologist.

So off to the gastroenterologist I go.. I got the lovely experience of a colonoscopy resulting in a basic diagnosis of Irritable Bowel Syndrome. From there we began moderating food and supplements, tracking triggers and even after we found out the culprits I was still having severe abdominal pain that was no longer connected to in moderated bowel issues..

Back to the Gynaecologist I go. She was still convinced I did not have Endo. She finally agreed to a lap basically to shut me up. Guess what she found!

Unfortunately, she did not have the long enough tools to reach everything to remove it all.. So, that meant I had a full laparotomy to remove the rest 6 months later.

So, that was my journey to diagnosis

Endometriosis Awareness 2022

March is Endometriosis Awareness Month.

March is Endometriosis Awareness Month

What is Endometriosis? In layman’s terms, it’s when the cells the are supposed to live in the uterus also live outside the uterus.

What does that mean? Well, it means those misplaced cells act like they would it they were in the right place. They have the menstrual cycle, but it’s on the bowel, on the outside of the fallopian tubes, uterus, ovaries, etc, on the rectum, on the bladder, on the kidneys, basically any of the organs in the abdomen. But not only that, these cell can migrate anywhere within the body. This includes more serious, but rate places like the heart, lungs, the spine, and the brain.

What does it feel like? It hurts!! Most women have a regular menstrual cycle. Some women have bad cramps and heavy bleeding..Us with Endo have horrible cramping, debilitating pain that last the duration of the cycle & for up to a week prior & after, and those cycles are irregular & erratic – some times lasting up to 2 weeks, sometimes with only a week, or days, in between. And remember, this happens in those cells that have meandered into the rest of the body, so not all the pain is necessarily in the lower abdomen

What else can happen? In addition to those fun issues already discussed there can be issued with infertility.. With tissues not being where they are supposed to be, the women’s reproductive system is turned into a war zone. And it can really f*”kin hurt to engage in sexual activity. Cuz the tissues are not where they are supposed to be, internal and things very easily get rubbed the wrong way. Add to that the common co-morbidity with Irritable bowel syndrome which in and of itself sucks.

Awareness. Education. Support. Hope. – Image

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

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

Endometriosis Awareness Month

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ENDOMETRIOSIS AWARENESS

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March is Endometriosis Awareness Month

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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

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.

Awareness Ribbon – Images

Endometriosis Awareness

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Yellow Ribbon for Endometriosis AwarenesS

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YELLOW RIBBON FOR ENDOMETRIOSIS AWARENESS

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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

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.

March Is Endometriosis Awareness Month – Images

March is Endometriosis Awareness Month

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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**.