Brand New Year You

We're women. We can learn to do anything! So slide into homeplate with your endo know-how.

MY OPTOMETRIST diagnosed my endometriosis-induced anemia. Which should tell you something about the state of endo treatment in my country.

At a yearly eye exam, my optometrist tried to figure out why I was still experiencing headaches and dizziness despite having astigmatism countering spectacles. Why would I mention endometriosis? I mean, come on: the eyes, the uterus; what’s the connect?

Until he asked outright if I had any chronic ailments. Intro endo. He probed even further (no pun intended): Do I have heavy periods; bleed in between; get nauseous? Could he see my palms?

He then explained to me what any number of gynaecologists I had visited thus far should have elaborated on: that some symptoms of endo arise from the serious ailment anemia; itself an almost guaranteed symptom of endo.

Arrest distress

It’s wonderful to get answers. Suddenly, you go from being ignorant and incapable, to having the ability to deal with what’s afflicting you.

Distress is a key trigger of endo flare-ups, so copers would do well to limit it. If having answers can help with your peace of mind, well there’s no real hard sell there.

The more you know about endo’s symtoms, dangers, triggers, patterns, the better able you are to find treatments, practices and methods to fight it.

Still daunted? Listen, of all the ailments that strike females, endometriosis is the one most innate to our very status as women. It is not any foreign invading entity; but something produced naturally by our bodies. Just, our bodies try to protect us from, basically, itself and its own creation.

Period neglect

Of all diseases we may have to meet head-on in a lifetime, endo is the one easiest to become familiar with. But not if you wait for doctors to tell you how to help yourself; because they might NOT tell you!

Even when you find a doctor you can put faith in, you must be prepared to act as partner in your disease diagnosis and treatment. Women today are in perfect position to do so. We have knowledge at our very fingertips via Internet access.

What’s more, we are better equipped to ensure that future generations gain greater insight into endo than we did … than we do.

In beauty may you walk

Photo by Pixabay from Pexels https://www.pexels.com/@pixabay

Word Warrior long time now, hit the link to see The Jhaye-Q Brew Archive

Let the Brain Lead the Womb

Would you jump this high to help yourself against endo? How about without an audience?

MET A MAN who deals in chocolate for helping and healing purposes.
Well, to be exact, he deals in the stuff that chocolate is made of: pure grade Trinbago-grown cocoa. And in the sweetest little gingerbread house set-up, he and his Japanese-Trini partner-at-arms peddle chocolate bars, cookies, syrups, spreads, body butters, skin polishers, hair products that stave off graying, cocoa for cooking and baking, cocoa for drinking and, as I mentioned before, cocoa for medicinal purposes.
Got that died and gone to heaven feeling?
I was never really a chocolate fan until I turned on to dark chocolate. I'm sure you've heard how wonderful that is for your health.

"It has been shown as proof positive that carefully prepared chocolate is as healthful a food as it is pleasant; that it is nourishing and easily digested ... that it is above all helpful to people who must do a great deal of mental work," -- Jean-Anthelme Brillat-Savarin

Here's the thing, though, this post isn't really about chocolate at all.
See, this same man who is a cocoa-advocate (only Trini sistuhs will get the joke in that), is also a supporter/educator of alternative, complimentary and lifestyle changes medicine.
Which brought us to talking about my chronic endometriosis battles and dissemination; that led to him expressing his frustration that more women coping with the disease aren't turning on to things like -- ta-da-ta-da-dahhh! -- castor oil. Castor oil packs in particular.
As Trinidad and Tobago approaches March 30th, the date for the first Endometriosis Walk put on by the Trinidad and Tobago Endometriosis Association, this man and I raved about this simple, proven effective method created to "shrink" fibroids, that has also been shown to help against endometriosis inflammation and pain; as well as resultant swelling, scarring, clotting, constipation and soreness.
We wondered at the fact that many women will walk a mile, or two, like literally, to support "highlighting" a problem, but WILL NOT expend the same amount of planning, energy and devotion toward committing to adopting long-term, even little solutions that WILL help.

I will always quote a reader who E-mailed me during my newspaper columnising years: "It's hard to get the sisters excited about anything other than shoes."

It's not a true true statement, but there is truth in it. Re-read my last post, it's right up the alley of contention.
I definitely plan to blog-cover that upcoming endometriosis awareness event; because it's something, right, in a land where there is really not that much, comparatively-speaking, on the hidden epidemic.
I'll post pictures and everything.
Before that, though, I'm going to let you in on what is not a secret, but might feel like a secret because so many endo-women here, there and everywhere DO NOT know about it: THE AMAZING (and easy to do) CASTOR OIL PACK.
Next post for sure. ♛

In beauty may you walk (pun acknowledged)

Topmost photo by The Lazy Artist from Pexels

It's the Little Things That Will

HAPPY INTERNATIONAL WOMEN'S DAY!!!
I don't know if the commemoration means anything to you, but I'm always up for especially celebrating anything good and wonderful, and women sure are that.
Despite the fact that I suffer under this woman-disease, that has often laid me waste, even threatened my life, I LOVE BEING A WOMAN, and I wouldn't change that for the world.
Being also deeply spiritual, liberal feminist and humanist means I must always be for the educational upliftment and advancement of women and men, all people really: because love is at the heart of all these things I practice.

Fit to wear her shoes?

You know there is this thrust called Walk a Mile in Her Shoes (click on the link to learn more), that's grown hugely popular. I remember using an image on my TV talk show when it was just a starting up seedling: of men wearing pink and crossing the finish line in high-heeled shoes after walking a mile.
Now I see it's described as The International Men's March to Stop Rape, Sexual Assault & Gender Violence; thus it deserves all applause and support. I seem to remember, though, that early on, it was to support the fight against breast cancer, which is vitally important and should never stop.
What this has to do with endometriosis is I started today's post intending to write that if doctors, policy-makers, medicine-makers and others could walk a mile in endo-copers shoes, they'd work harder to help.
Then I realised that there are doctors, policy-makers, etc. who DO walk miles and miles in endo-sufferers shoes, because there are women in all these positions in the world today, and with the rate of spread that endo has, a lot of them have it.
Think about it: they used to call endo "The Career Woman's Disease."
Aside from that, there a millions more women and girls who have endo than have breast cancer and HIV combined, who are walking day in day out in their own suffering shoes yet are not being moved to do anything about fighting against this most common of female ailments.
What is wrong with us?
Maybe the problem is what is right with us: women are so strong against suffering; so holding on to hope; so often seeing the rainbow mid the rough clouds, so always putting the interests of our loved ones before ourselves that we just don't jump down the throat of some things even when it's killing us.
Time to STOP THAT SH**!!!

In beauty may you walk 😇

Photo by Jhaye-Q: Trinidad & Tobago Kiddies' Carnival 2018; sometimes we need help to "take our broken wings and learn to fly again." But we've got to keep pulling our own weight, too. It's what women do.

If an Endo-Woman for A Mile

THE JOURNAL of a thousand stories begins with a single word.

Unfortunately for endometriosis-sufferers that first word is usually PAIN. However, while pain may be the beginning of your endo journaling journey, it does not have to be the end.

The first word I wrote in my endo diary was, literally, pain. Then the dictionary definition. Then in the top left corner I wrote my name etc. (see pix 3 at bottom).

Why put pain first? Trust me, I did not want to; but it had so absorbed my whole life and it was the thing I most wanted to be rid of, that when I started to chronicle my endo issues it was really all about the pain at first.

If I was the heroine of my saga, pain was the dragon to be vanquished. But how? We learn these things from storytelling, right.

In chronicling my endometriosis, I hoped to gain insight into it, enough to help beat it back. Which is not to say that an endo journal should be all bleak. Like any diary, or tale, it would be full of all that adds up to life: the dread, the glee, the bittersweet.

It did what now?

It is like creating a word-map to see the facts of your endo, with everything dated, maybe even timed, so you will know exactly where you were when.

For instance: every time you try a new pain medication make notes on how it made you feel, its side effects, its effectiveness on a scale of one to ten. Then when you talk with your physician, it will help her help you.

I noticed that every time I was administered a pain shot the first and second time I was hospitalised, I would actually experience more pain after. I took note and described it to one of the young interns ushered in each day. She was able to then figure out that since this medication causes muscle cramps, it was actually wreaking havoc on my uterine muscles. So she changed my pain injection med, and instructed me to always tell this fact to any prescribing doctor afterward.

That's how it can work, big or small. You can record what happens to you every time you have a certain type of seasoning, like msg; or food, like lentils. How you feel after yoga versus high-impact aerobics. Then, looking back, you can actually figure out your approach to that thing.

Be as structured or casual as you want, just be sure to make your notes. I believe in writherapy: that putting something down in words helps, heals.

Pretty wise

Oh, and please, on the days when you feel up to it, have fun and aim for beautiful. Cut pictures and poetry, doodle with crayons, think funny quotes and stickers. That way, when you are going through your journal at the rough times, you'll come across entries you made that, like wind-chimes, can refresh with sudden sweetness.

You'll figure it out, and I'll make suggestions every so often, or your endo-sistuhs in your support group (starting one is a whole other post 😵) can share their ideas among you all.

And speaking of support, remember, there are burgeoning numbers of younger and younger women getting diagnosed with endometriosis, or going undiagnosed. So all these amazing journals, that we manifest now with our empowered selves, can be used to pass on insider information to those who walk in our wake and save them from suffering much of what we did.

How wonderful to know that we can help others by sharing our endometriosis recorded history.

In beauty may you walk

Photo 2: Don't shy away from something beautiful, especially because endometriosis feels so ugly

Photo 3: Inside flap, first word, PAIN

Photo 4: First page entries, after three months of debilitating pain.

Endo Diary of a Bad, Red Woman-disease

WOMEN are doing with endometriosis what they've done for millennia with everything else: they are taking charge, empowering themselves and getting on with the business of working things out.

Yes, all around the globe sistuhs are partnering in diagnosis of and remedies for the disease. We've grown beyond the days when, as patients, we went along with the "It's not that bad" or "That's just natural" line.

For those of you who have asked the major question: Do I have endometriosis? because you are experiencing symptoms in the spectrum, it ... is ...time. (SEE post: Endo, Have We Met? to compare)

Get to stepping and get thee to an ob-gyn!

These come in all shapes and sizes; and some should sign up for the "Physician, heal thyself!" programme, the kind of warped ideas they sling.

Here's to hoping you do NOT meet one of those.

Good doctors who want patients to listen know they have to listen first. They won't be put off by questions about your health issue.

It helps them to help you if you are both in the know. It helps you to help them if you ask pertinent questions.

To that end, here are a few:

What exactly is endometriosis?
What are ways to diagnose? Are there less invasive ways?
What are the effects of endo?
What are the most dangerous aspects of endo?
What are the types or stages? How would you determine the type?
What are the treatment options? Do they depend on what type I have?
What are specifically the medication options?
What may have caused my endo? If it's possibly things I can change (eating habits, drinking, environment) would that help?
How can I treat pain?
How can I treat heavy bleeding? Are there side effects to heavy bleeding?
How would I treat aenemia brought on by blood loss?
What are triggers? Can I identify mine?
What are flare-ups?
What is chocolate blood?

We need to know, least they suffer who come after us.

And you go right ahead and ask anything else that comes to your mind as you talk with your specialist.

Nobody knows you like you, remember that. So only you know your exact fears and concerns. Share and air with your doctor.

In beauty may you walk

ENDOwed With Knowledge

WHO IS at risk for endo? Only whores.

Forgive my irreverence. I'm just echoing the absurd endometriosis extremities I've heard from unknowing people over the years who, kill dem dead, think they're on point with their utterances and can teach the actually initiated something.
Ah, the haughtiness of ignorance.
Who's at risk? Any woman. Any girl. Your mother, your daughter, your friend. Oh, did I mention ... you.
Endometriosis may strike any woman any time in her pre-menopausal life, and many girls and women suffer years before correct diagnosis.

There was a time when endo was referred to as the career-woman's curse, because it was considered to mostly affect women who put off pregnancy to focus on a working lifestyle. This has since long been disproved; and there is actually a prevalence of endo among women who have been pregnant one or more times.

As I live & breathe

This is not to say that lifestyle aspects cannot affect your endo status. Certainly your diet, exercise and nutritional supplements balancing can play a part. However, other issues can account for it presenting in your body: family history, estrogen levels, anatomic issues, exposure to environmental toxins, stress.
My entry into endo came like the proverbial wrecking ball on the first day of school for Form 3. Before that, two years of menstruation had been a breeze, to the point I used to think peers were a bit fakey with all their "Oh, the agony!" during their periods.
I had to miss the first day of school because of the pain, the vomiting, the heavy bleeding. How could I have known how my life was to have altered from that moment?
What caused it to come for me? Most likely severe shift of estrogen production; the stress of a very laboured, dramatic puberty; less running around in childhood games every day and entering into a more sedentary, bookish way of living; my fixation with devouring flour products. All that and more, I'm sure.

Teen Titanic

A study done over five years ago revealed that more than 50 per cent of teen girls who underwent surgery for severe pelvic pain were discovered to have endometriosis.
So there is a fight to make the Human Papillomavirus (HPV) vaccination mandatory to teen girls, even though there is a big association to life sexual decision-making attached to whether it will affect a girl's life or not.
Meanwhile, endo can simply drop upon you where you stand, once you are female and experience a period, but there is no big push to make it mandatory for girls to be effectively educated about lifestyle activities they should adopt, to help empower them to combat what is actually an epidemic.

So is it any wonder that every year more teenage girls are being diagnosed with endo and, like me and millions upon millions of others, having their entire lives changed for ill.

Though there are the means to take care of them, we're letting them sink ... like the Titanic.
The old saying goes, "If you teach a man, you teach a man. But if you teach a woman, you teach a village."
If you suffer under endo, take time to learn how to help yourself, and you will be able to help other women, too, by sharing the knowledge on.

In beauty may you walk

Next post: Scaling Pain: Know your levels
Graphic Illustrations: Endo & (M)any Woman, by Jhaye-Q

High Risk Drama

Why the secret? We all bleed.

CHANCES ARE you have endometriosis, or know a woman who has it. Yet, it’s likely that you’ve never heard of it, or know very little about it. Hence, why endometriosis is referred to as the Hidden Epidemic.

Endo is affecting millions more female lives than breast cancer, yet there are no awareness-raising drives on it in my country. How about yours?
“But breast cancer can threaten you life!” So can endometriosis; in numerous ways.

*Brenda (*all names altered) contracted a uterine infection of the kind that plagues women with endo. The resulting fever sent her body into rigors, her mind into hallucinations, and eventually herself into unconsciousness. She finally came to on the “deathwatch” ward of our general hospital.

*Marsha collapsed on a public street after a cyst on her left ovary ruptured. *Trisha became so anemic she blacked out while driving her car.

*Alicia was hospitalised for severe shock induced by agonising pain. Endo-coping women have seriously considered suicide during delirium brought on by absolute physical torment.
Whether it threatens to kill or not, endo equals anguish and is far too common to remain overlooked, misunderstood and misdiagnosed.

Endo You? Ask Yourself

Pain: the most notable symptom

Is endometriosis still in the dark because of lack of interest? Or is there lack of interest because endo remains relegated to the dark?
The suggestion is that ignorance exists simply because endometriosis is a “newly discovered disease.” Actually, Dr. Von Rokitansky first gave details about endometriosis in 1860.
Part of the problem is women have been conditioned to think that dysmenorrhoea is a naturally occurring result of womanhood. IT IS NOT!

Get insight into your own endo-status, by answering a few questions honestly.

DO YOU:
♛   Experience intense pain during your menstrual cycle?
♛   Have menstrual-like pain at times outside your cycle?
♛   Bleed heavily or excessively during your period?
♛   Bleed between your cycles, or “spot” a very dark fluid (termed “chocolate blood”)?
♛   Suffer unexplained anemia?
♛   Get migraine-like headaches with your ovulation?
♛   Experience unexplained dizziness, nausea, fainting?
♛   Sometimes have difficulty passing urine even when you feel a strong urge to go?
♛   Suffer from unexplained fatigue, yet still have problems sleeping?
♛   Feel a pressure pushing outward on your back, in your uterus and/or sphincter?
♛   Cope with your tummy getting so swollen sometimes you look months pregnant?

If you have responded yes to any even small combination of these listed symptoms there is a high chance you have endometriosis.

Visit your ob-gyn and put the possibility on the table. Talk about it with her/him, and clearly convey that you want to be checked for endometriosis. Do not be averse to getting a second opinion.

In beauty may you walk.

Endo: Have We Met?

I’M NOT sure how to spell Cristiano Ronaldo. Ditto with Manolo Blanix. Well, I can spell endometriosis. Can you? Do you know what it is? Have you even heard of it?

Hordes of women know more about a football player or a designer shoe label than they do about a disease they probably have, might have had for years and continue to suffer under in all sorts of horrid ways, while thinking that they’re experiencing something natural. It's like they've been drowning ... drowning in blood.
I’ve been living with endometriosis since that fateful day at age 13 when I was awakened by the worst physical pain ever experienced in my life thus far. I didn’t know the real cause of this for many years. “Hey, it’s just your period.” Sound familiar? Listen, my story could be your story.
At the heart of her every woman wants to feel safe and good in her skin. Our bodies are not just temples, but our playgrounds, universities, sanctuaries, love-nests, hospitals, the home that moves with us always.

No shelter here

In my country, women have not been encouraged to face endometriosis like persons coping with a chronic disease: armed with information, prepared to make lifestyle changes, open to using complimentary forms of therapy: the way advanced medical fraternities abroad are treating with it.

No, the first line of defence being advocated by too many specialists here is complete removal of the patient’s womb.
The New York Presbyterian Hospital, and others, lists endometriosis as more common than AIDS and cancer among women. It is the most common chronic ailment affecting women and girls today.
Imagine, 176 million females worldwide have been diagnosed with endo, and still many more times that have it, but remain undiagnosed, while the numbers continue to grow. That’s a staggering pandemic.
Now imagine all those women, whatever their age, circumstances or desires, being given as their first, perhaps even their only option, hysterectomy.
And science cleverly created the “little blue pill.” Yea, we’ve “come a long way, baby.”
I’m so heartbroken when I hear otherwise perfectly healthy women, many of them in their twenties, lamenting the loss of their human right to bear a child.

Even women who opt out of motherhood should have the right to make a proper decision about her body based on accurate diagnoses, facts, and "do no harm" choice of solutions.

Gimme shelter

Sisters, it hardly seems that anyone cares to inform us about this disease much less to help us against it. So the endo-coper has to get stepping herself.

There is life past the pain. Learning where and how to access this life means making changes. ABC Endo is going to help you: providing methods applicable to where we are; sometimes with a certain irreverence, always with deep empathy.
I know the problems leeching life from you in your suffering. But I also know that around the world women are making the decision to change their lives and taking back their lives as a result. They are opening to new therapies and attitudes. They are holding on to hope.
Think of your struggle as a game of chess, and yourself as the queen. Chess takes focus, a cool head and imaginative, but well-calculated strategies: all the things that will help you capably meet the challenges of endo.

What’s more, the chess queen is the most powerful piece in the game. That’s what I want each of you to become: your most powerful champion in the battle against endometriosis.

Endo is a real “do or die” situation. We all know there are many ways to die: in body, mind, soul, spirit. Always remember the flip side: there are many ways to live. Take back your life!

In beauty may you walk.

Lady in red dress, swimming: Photo by Engin Akyurt from Pexels

ABC Endo: A Trinbago Survivor's Guide

GATHERING YOU

In beauty may you walk

HAPPY NEW YEAR 2021

Brand New Year You

Arrest distress

Period neglect

In beauty may you walk

Let the Brain Lead the Womb

In beauty may you walk (pun acknowledged)

It's the Little Things That Will

Fit to wear her shoes?

In beauty may you walk 😇

If an Endo-Woman for A Mile

It did what now?

Pretty wise

In beauty may you walk

Endo Diary of a Bad, Red Woman-disease

To that end, here are a few:

In beauty may you walk

ENDOwed With Knowledge

As I live & breathe

Teen Titanic

In beauty may you walk

High Risk Drama

Endo You? Ask Yourself

In beauty may you walk.

Endo: Have We Met?

No shelter here

Gimme shelter

In beauty may you walk.

Endo Women: Agony But Not Defeat

In Knowing We Accept Light and Shadow

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