Learning from a chronic, ‘incurable’ condition

Learning from a chronic, ‘incurable’ condition
Living with chronic pain and disease is tough

Don’t feel like reading? Listen to me tell the story.

Sometimes life has a way of teaching us lessons we didn’t know we needed to be taught.  There are a lot of ways it can do this: through our relationships with friends and family, through natural and unnatural disasters, and through our pursuit of professional fulfilment…  For me, some of my biggest lessons have come from my body, which has sent me the gift of a chronic, ‘incurable’ condition to battle for well over half of my life.  

It was in my late 20s when my body started to break down in general.  I was in my first management role after completing my Master of Business Administration (MBA), and to say my boss was challenging is an understatement. I was stressed.

I had the most horrendous reflux, and had to take some nasty drugs to barely kept it under control.  The asthma that first reared its head after I got glandular fever when I was 17, was the worst it had ever been.  I felt like someone was constantly squeezing on my lungs, which was so exhausting I was completely passed out by 9.30pm each night. 

I started getting these debilitating migraine headaches that would put me out for two days each time.  At my special time of the month, I had incredible pain I never knew before. At the same time, I suddenly put on about 15 kgs.  I didn’t have time for this. I went to see doctors, but generally tried to ignore it and get on with my life.

The last straw was when I went to the general practitioner (GP) with a new, exciting rash that appeared around my mouth. He told me it was a stress rash, and gave me a steroid cream.  Really?  Steroid cream??  I was falling apart!  A steroid cream was not going to solve my problems.

Desperate times call for desperate measures

A woman I worked with told me about a GP who specialised in natural therapies.  She would spend over an hour with you on your first session, and then farm you out to the practitioners she worked with who she thought could help. At that time, natural therapies sounded like a bit of a stretch for me, but I was desperate, so I would give anything a try.

The first thing she did, which I now understand a lot of naturopaths do, was a live blood analysis.  She took a small amount of my blood, and put it under a microscope so I could see all of my blood cells.  She showed me what nice, healthy blood cells looked like.  I had some of those.  Then she showed me some images of unhealthy cells and told me what some of them meant.  I had LOTS of those.

She said the aim of our treatment was to clean out all of the weird cells so we were looking at a healthy set of cells.  Huh.  This wasn’t as unscientific as I thought it was going to be.  No GP ever looked at my cells with me like that before.  It made sense.  And this was a nice way we could measure the success of my treatment over time.

Next she tested me for allergies to… pretty much everything by doing a muscle testing technique.  This was a stretch, but she told me I was allergic to… pretty much everything at that time.  That apparently meant an elimination diet was out of the question, because I wouldn’t have been able to eat anything at all. 

She said I had a condition called leaky gut syndrome.  I later found out this was not something GPs recognised or treated.  Essentially it meant my stomach lining was so stretched or depleted, that food particles were escaping into my bloodstream. My immune system then attacked those escapee foreign particles thinking they were disease.  The excess load on my immune system meant everything else could fall apart.

Sweet relief! (for some of it…)

With three months of hippy supplements to strengthen my stomach lining, I was off all of my medication. MOST of those issues cleared up completely, never to return again.  What remained was the weight gain and period pain.  I had polycystic ovarian syndrome (PCOS), a bulky uterus, and uterine fibroids at a minimum, and possibly endometriosis or something more serious.

There is no known cure for any of these things.  You can operate to remove cysts and fibroids, but after much research I saw little point unless trying to conceive, as without any change in your environment or body chemistry, they will just come back.  There are a variety of treatments conventional GPs and alternative therapists will suggest, but before we get into that, let’s have a look at what it is like to live with these glorious ailments.

It is ‘normal’ for healthy women to have some discomfort when they have their period.  They might experience some mild lower back pain, discomfort or mild aching in the abdomen, mood swings, minor weight fluctuations and so on.  These symptoms can often be managed by taking some low level anti-inflammatory and moving on with your life. 

Monthly surrender

The two most significant things for me with my conditions are loss of energy and excruciating, persistent pain.  When I say loss of energy, I don’t mean I get a bit sleepy. I mean it feels like someone has gotten a vacuum cleaner and sucked out my muscles and their ability to do anything.  It is a weird feeling.  Even the most menial of tasks like getting up and walking to the next room are exhausting.  And there is no use fighting it.  Believe me I’ve tried.

One month I was visiting my parents and had purchased a one-week yoga pass just before I got my period.  Wanting to ‘get my monies worth’ out of this pass, I went each day even though I felt terrible.  It extended my period of extreme lethargy and pain from two days to four days, and this was only from spending an hour a day at yoga.

A friend once described to me what it was like to be kicked in the balls.  He said after the initial, eye watering, excruciatingly sharp pain in the groin, it spreads out and aches over your whole abdomen until you think you are going to vomit.  You are completely incapacitated until it goes away.

“Huh.  That is what it feels like when I have my period.  Only it doesn’t go away or lessen in intensity.  I keeps going for at least two days without relief,” I said.

“That is not possible.  There is no way,” he said.

Ball trauma?  I should be so lucky!

I guess for a gentleman who has experienced ball trauma it does sound impossible, doesn’t it?  That that level of pain could go on for so long.  But it does.

I can’t move.  I certainly can’t work.  I often don’t eat because a) I don’t feel like it at all, b) it is too much effort, and c) any expansion on my stomach impacts on my inflamed uterus and ovaries, and increases the pain.  It is not uncommon for me lie in bed in the dark, knock myself out with pain killers, and not eat or see anyone for two days.  Often the pain killers don’t work that well, so I distract myself from the pain by binge-watching some tv show for hours on end to keep my mind off it. 

It can be distressing for those closest to you.  They want to know what they can do.  They can’t do anything.  In fact, the best they can do is leave you alone.  It is just something you have to get through each cycle.  

Other lovely feminine things I had to deal with for the PCOS et al. were skin problems and hair growth on my face. Lovely. Character building.

Down the rabbit hole…

After the eventual relief of all of the other symptoms, outside of the conventional medical system, it was time for me to take control of my health and educate myself.  I bought tonnes of books.  I joined online support groups.  I kept going to see some pretty ‘out there’ practitioners.  Some of the stuff the Energy Healing Practitioner the Holistic GP sent me to did was a major stretch for me, until a few years later when I accidentally stumbled across the science behind it.

The problem was, no one knew that much about it.  And there certainly wasn’t a pill that could make it all better, contrary to what some doctors would have you believe.  Only a mere one in five, or 20 out of 100 women have it, so apparently it is not worth any research funding…

My doctors, hippies, and research all said I should try to get back to the weight I was before I got my PCOS, and that would help with the symptoms.  PCOS is also a precursor to diabetes so the weight issue was likely compounded by insulin resistance.  Insulin is also a hormone, so the general hormonal imbalance was all connected.  Losing weight was not going to be as easy as eating less and exercising more.

More of me to love…

Interestingly, before the doctors told me, I was actually sort of okay with the weight gain.  Sure, we all like being skinny, but I was quite skinny for my height before that.  I recall looking at pictures of the skinner me and thinking how even when I looked like that, I still thought I was fat and ugly. I felt then exactly the way I felt now, so I decided to just ignore that impulse and get on with it.  It is called body dysmorphia and most women suffer from it.  That is, no matter what we look like, we only see ours bodies/looks/face as deeply flawed.  When I was skinny, I would have looked at those same skinny photographs and thought I was huge.  Now I actually was relatively huge and looking back, I could see how silly I was then, so who’s to say I wasn’t being silly now?

I cut out sugar (including fruit and all alcohol), dairy, grains, and anything at all processed.  You can’t really go out to dinner at your friend’s places, or eat out on a diet like that which is not socially convenient.  I wasn’t into public displays of exercise, so I bought a treadmill.  I did the math on a gym membership and worked out that if I bought the treadmill and didn’t use it, I could sell it at the end of the year for half the price and would have been out of pocket the same as a gym membership.  But I did use it.  I stuck to the diet.  For 9 months.  Did I lose weight?  Nope.

Other things that could impact the hormone imbalance were environmental. Plastics like in water bottles and Tupperware containers messed with your estrogen levels.  It also turned out that regular, cosmetics, soaps, household cleaners and so on were FULL of chemicals that were PROVEN to collect on your organs, cause cancer, and/or mess with your hormones.  Essentially trying to cure this thing was a complete lifestyle change.

At that time I had a couple of friends who were a bit older than me with endometriosis who were trying to get pregnant and having a terrible time.  Another friend gave me a book on endometriosis written by a gynaecologist from Adelaide, and I thought it was amazing.  I was moving to Adelaide in a couple of months, so I quickly made an appointment as it was three months wait for a new patient.

Listen to the experts?

The doctor told me the only way I could know if I had endometriosis was to have an operation to go in and look.  The PCOS and fibroids could be detected on an ultrasound, but not the endometriosis.  I was in my late 20s and felt I needed to know if I had it for my decision making around having kids etc… because of what my friends were going through.   I booked in for the operation.

She also convinced me I should take an Intro-Uterine Device (IUD) called the Mirena which would sit in my uterus and secrete synthetic hormones ‘locally’ or just around my uterus to try and deal with my PCOS symptoms.  The contraceptive pill always reacted badly with me, but I figured this woman wrote the book, and the hormones weren’t going through my whole body like the oral pill so it was worth a shot.

Both of those things were a terrible idea.  The operation confirmed that I did indeed have PCOS, fibroids and a bulky uterus, but not endometriosis.  I later found out I could have had a much less invasive magnetic resonance imaging (MRI) which I was never told about.  I kept the Mirena in for three and a half years.  I bled for seven months every day and then I didn’t bleed for the remainder of that time.

No matter what I did, my weight never got below 13 kgs more than my top weight before I got the PCOS, and would go between that and 19kgs more, depending on which way the wind was blowing.  The fluctuating was AWFUL.  I developed a fear of buying skirts, pants, and jeans.  How long until they didn’t fit me anymore?  I had ‘skinny’ clothes and ‘fat’ clothes for depending on which side of the 6 kg spectrum I was sitting on.  I could swing that pendulum one side to another and back again in less than a month.  Then someone introduced me to some elastic wasted varieties that didn’t look like my Grandma bought them, and things started looking up again.

Although I had given up on my strict no sugar, dairy, grain, processed foods, and fun diet, because it didn’t work, I had changed my eating habits forever.  I had cut back significantly on all of these things for good, was following the low glycaemic index (GI) principles, and keeping carbs to a minimum.  I also brought my treadmill down with me.  The partner I moved to Adelaide to be with initially teased me about my diet, but when the weight started falling off him just from the dinners I was cooking, he soon started copying the rest of my diet and slimmed right down.  BASTARD!  Me?  Still no change.

Working with weirdness

I also started a stressful management job with too many issues to even list here.  One of the side effects of the Mirena was hormone surges.  It was really weird.  When it happened, I could feel it in my blood.  For some reason, particularly in my arms.  And they would shake.  I would also feel overly emotional, which if you know me, is not where I like to live.  My job involved back to back meetings, constant trouble shooting, and putting out fires, particularly in the beginning.  When I had these hormonal surges, I would actually say this to my staff.

“Look, if I look at you funny today, it is not you, I am having hormone surges from my treatment so just ignore it.” 

 “Yup.  No worries, thanks for letting us know,” they would usually respond, and we would get on with it. 

We got this new, horrendous CEO.   The organisation had some 900 staff at that time, and because I was managing marketing, graphic design, and printing, I had a lot of young, lovely looking ladies on my team.  When he did his first walk through, he made inappropriate comments to some of them and was a bit touchy, so I knew he was going to be a douchebag.  Mercifully I didn’t have a lot of one on one time with him, but one day I was called to his office to meet about something or other. 

It was unfortunately when I was in the midst of one of my hormonal surges.  I could feel it in my arms, I was shaking a little, and my face was likely quite stony as that was the norm when that happened.  I was going through whatever we needed to discuss when he stopped me.

“Are you afraid of me?  You’re shaking.”

“No!  Sorry.  I have this hormonal condition that makes me shake sometimes.  It is just something I deal with, but really it has nothing to do with you.”

But my shaking wasn’t going to stop, that idiot was already enjoying thinking he had me flustered, and I couldn’t get him back on track.  So goddamn inconvenient.

What they don’t tell you…

I wasn’t told I would bleed every day for seven months before I put the Mirena in, but I was told afterwards that was normal for people with PCOS.  Then apparently not bleeding at all for three years was ‘normal’ too.  Only it isn’t normal, is it?  What was this thing actually doing for me?  Was it curing my PCOS?  Were the cysts still there even though I wasn’t having my traditional painful periods?

I went and had an ultrasound and all of my cysts and growths were very much still there.  I also knew from my earlier research that synthetic hormones had a causal relationship with reproductive cancers.  That is, if you take synthetic hormones like the contraceptive pill, IUDs like the Mirena, or hormone replacement therapies (HRTs) long-term, you will get cancer.  There are multiple studies proving this, and yet if you go any doctor with period pain, this is their go-to solution.  Take cancer causing synthetic hormones for the rest of your now likely much shorter life.

It was time for this IUD to get the hell out of me.  It was not fixing the problem, only masking the symptoms, and putting me at a much greater risk of cancer the longer I had it in me.  So out it came, and soon enough I was back to my monthly, energy sapping pain-fest. 

My partner at the time used to say, “I like it when you are like this because I can just…” and he would poke me in the shoulder or arm as I was lying curled up on the couch, “and you don’t do anything.  It’s so cute!” 

He was used to workaholic career woman (I know how funny this is to those of you who met me later in life, but it was true then!) powering around the place owning stuff, but when I was like that, there was no choice but to stop.

Better than a kick in the balls??

I revealed to the group of friends I was asking what it felt like to be kicked in the balls that my intention was to compare it with chronic period pain.  My friend with endometriosis responded with this:

“So if getting kicked in the balls compares to being stabbed in the stomach repeatedly every minute with a meat cleaver for one to two days until you pass out from the pain, then I have every sympathy for anybody who gets kicked in the balls.”

In my mid 30s that relationship ended, I left Adelaide and started roaming the earth on my own again.  I took time out from trying to cure myself because CLEARLY it wasn’t working. I relaxed and had a good time.  I somehow ended up on the skinnier side of fatty Claire for a bit. 

When I was in India, one of my colleagues, a Parkinson’s sufferer himself, was not happy with my status quo of locking myself in a room for two days without food every month, and dragged me to a diabetes clinic to see one of his doctors.

Time to try new things again

I was in full lethargy pain mode and they put me in one of their rooms with a device that looked like an old Nokia mobile phone.  It apparently emitted a certain frequency from a point I was to keep attached to my belly where my ovaries were.  I lay there for about four hours and it seemed to be actually working.  It definitely took the edge off the pain.  I decided I needed one for myself, paid the $300 for it and I have to say, it was the first thing that really had any major impact.  As a long-time sufferer, and trier of many things, I knew this wasn’t a placebo effect.  This frequency was talking to my ovaries and saying all the right things.

I mentioned earlier how I went to an Energy Healing Practitioner who did all this weird stuff that was a bit of a stretch until I accidentally stumbled on the science behind it a couple of years later…  There is science behind vibrational healing.  I’m not going to go into it in any detail here, but essentially all matter at its core is a vibration.  The atoms in the chair you are sitting on break down into vibrations.  Your skin, your thoughts, your organs, any disease can all be scientifically measured at their vibrational level.  So why can’t they be treated or countered with vibrations?

People asked me why I was wearing that thing even when I wasn’t in pain.  My answer was that although I was only in pain when I had my period, my ovaries and uterus were still messed up the rest of the time, so it could still keep healing then.  It was amazing. 

The only problem was that every time I went outside of India and used it with an adaptor, it would break.  Then I had two.  They would both break.  I would fix it when I was back in India, or even send it with someone who was going to India (it was powered by a mobile phone battery so could not be sent by mail and had to be carried in hand luggage) to get fixed then bring it back.  Unfortunately the way I was in and out of India, I didn’t get enough concentrated time with an unbroken device, but I do believe if it worked continuously over a long period of time, it could have healed me.

Lumps you can’t ignore…

Fast forward to earlier this year in Bali.  I was getting a nice massage when the massage lady stopped at my belly and told me to feel it.  There was an unmistakably huge lump in there that shouldn’t have been there.  Oooooooooooh.  That was not convenient.  I will skip the dramas with travel insurance, hospital shopping, and dodgy gynaecologists, but they told me I had huge fibroids hanging off my uterus.  The largest one was 5.3cm.  That is large.  He also said I probably have endometriosis and possibly cancer. 

That wasn’t a part of my plan…  I was back off to India.  I didn’t have time for cancer or endo.  But I also didn’t trust this dodgy gynaecologist, I knew he couldn’t tell about endometriosis from an ultrasound as this wasn’t my first rodeo, and I knew I could get a proper full physical when I got to India.

In India I decided it was time to have my first MRI.  Have you ever done that?  Wow.  It was SO 2001 Space Odyssey.  You wouldn’t want to be claustrophobic…  I am not, but I know people who will never be able to do that.  The confined space, the lights, the weird sounds that go on and on and on…

The good news was I didn’t have cancer or endometriosis and I didn’t have to run back to Australia immediately for treatment.  WOOHOO!  The bad news was I still had a bunch of huge cysts and fibroids hanging off my organs I would need to deal with.

Take it out!  Really???

“You’re 42 and not planning on having children, why don’t you just take it all out?”

That sounds like nice advice.  Take out the uterus and/or ovaries and never have to worry about painful periods again.  Wouldn’t that be the panacea for all of my problems??

NO!  Doctors love telling women to take out their reproductive organs to solve their period pain issues, and while it is right for a lot of people, it does not come without significant side effects.

One friend of mine got uterine cancer when she was in her 30s and had her uterus taken out.  She was told she shouldn’t expect any major side effects as she was keeping her ovaries.  Within three weeks of the operation she had put on 20 kilograms, started losing her hair, and felt massive hormonal mood swings.  Within a year she went through menopause.  With treatment from a naturopath she managed her moods and stopped the hair loss, but the weight never went away and menopause was there to stay.

Taking out your uterus and/or ovaries is not without SIGNIFICANT side effects, and should not be seen as a ‘simple’ solution to female reproductive issues.  Many women find themselves out of the frying pan and into the fire in terms of symptoms.  Another friend had a full hysterectomy and ended up creating thyroid problems on top of the weight gain, hair loss, and mood swings, and has to take synthetic hormones for the rest of her life.

Find me the next hippy!

No, I knew what I needed to do.  I needed to find the right hippy practitioner.  I needed to find someone who could help me change my body chemistry so it was not creating the conditions for these not so little passengers to grow where they shouldn’t.

COVID19, bless its little cotton socks, sent me back to Australia where a friend suggested I try a hippy hormone supplement designed for women like me.  I have been taking it for three months and am cautiously optimistic it is helping me.  My next step is to have an ultrasound and see if my passengers are shrinking or not.  If they are, WOOHOO!  The supplement is working and I will keep on keeping on!  If they are not, it is back to the drawing board, and I will find something else to try and get my body right.  It won’t be a conventional doctor because I already know too well what they will say.

What has this ‘incurable’ condition taught me?

Firstly, just because I haven’t been able to cure it yet, and conventional medicine does not have a cure, doesn’t mean it can’t be cured. It is exhausting trying and failing a lot, which is why I often take years off, but I will keep trying.

Most people won’t understand. It is particularly tough in the workplace and anywhere in your life where you find ignorant people. Some will see it as a weakness. Screw those people. They will find out eventually…

You really are what you eat and put into yourself.  The large corporations selling you your cosmetics, cleaning products, and food don’t care if they are slowly killing you.  The psychopaths running them probably think it is funny. Your skin is the largest organ in your body so you are kidding yourself if you think what you are putting on it is not getting into your bloodstream.

Get support from people who know what you are going through.  They will also have good advice and stop you from falling into the age old traps that may not be obvious. And it is nice to talk to people who understand.

Many doctors don’t know as much as they think they do and sometimes they lie and/or omit critical facts to get you to do what they want you to do.  Do your own research, and if you have a chronic condition and are not getting relief, don’t be afraid to seek out some hippies.  Get testimonials for your hippies before going to them.  Support groups are good for this. Some of them really are quacks…

Be kind to yourself. If you’ve got to go down for a couple of days, go down for a couple of days. It is what it is. There is no point feeling guilty or trying to do things when ‘computer says no’.

Keep trying. You’re worth it.

The End

** If this brought up anything for you, or you have any questions about my treatments, strategies etc… feel free to email me (Claire@ClaireRWriter.com) or PM me on the various social media platforms below. I have been deliberately vague about that stuff, and although this seems like a long post, it is really the tip of a very deep iceberg, as you will know if you or anyone you know are going through something like this.

Thanks for reading and/or listening.  I hope you enjoyed it.  If you did, please like, comment and share on social media.  I’m on Facebook, Twitter and Linkedin and my handle is @ClaireRWriter.

If you want to work with me, check out my website ClaireRWriter.com and book a meeting.

Until next time!


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