Read & Write with ME

I live with a brain injury.  It’s not officially called that but I don’t know what else to call it.  My memory is scarily bad, I do daft things like finding my Kindle in the biscuit cupboard with no memory of putting it there, I can’t recognise people if I see them out of context (a friend from Camera Club for example in the supermarket), I struggle to learn new information, to make even simple decisions (like what to have for lunch) or to concentrate.

Since developing M.E. my reading and writing has gone to shit and the more ill or exhausted I am the worse my reading and writing becomes.

I’ve developed a straneg kind of dyslexia.  Again, it’s nt officially called that (it’s not officially called anything becuase I don’t see anyone regarding my ME so it’s never been investigated) but I don’t kno how else to describe it.  I frequently miss letter, or whole words, ot of sentences.  When I read it back to myself the leters and words are there, even when I’ve checked severalt imes.  I’ts only when I go back days later and re-read that I realize entrire words are gone.  My spelling is also affected.  I usually spell-check everyrhing to within an inch of its life but this paragraph i’ve left as it was tyeps, so you can see how jumped (that’s supposed to be jumbled) my writing is.  I’m just thankful I use a cmoputer with spell-check (even if it’s American and can’t fucking spell English😉 ) rather than the written word which no-one eouwl be able ot read.  i’m going back to spell-check for the rest of this post you’ll be pleased to know!

Reading when you have M.E. is tortuous.  My whole life I’ve loved books.  In fact, I’d go so far as to say that reading saved my life as a child.  I could leave my shitty reality behind and escape to other worlds, or read about people whose lives were as shitty as mine so I didn’t feel quite so alone.  M.E. has robbed me of one of my greatest treasures.

When I’m very tired the words on the page start to change colour.  Usually lime green for some strange reason, with a hint of purple thrown in for good measure.  That’s when I know I’ve done too much and need to rest.

Or the letters move about on the page, sometimes swimming animatedly, other times stationary but shifted.  Here’s an interpretation of what I see:

wordsYou can image how challenging blogging is when faced with this kind of brain impairment (I’ve just had 4 fucking attempts at spelling “when” and 3 attempts at spelling “attempts”!).  It’s time consuming and frustrating.  I miss my old brain more than words can say (or spell ;-)).

Research into M.E. doesn’t focus on cognition problems.  We know people with M.E. have “brain symptoms” but they’re often passed off as a minor issue, despite the fact they can be a huge barrier to the world and our ability to exist within it, especially in this computer age where typing and reading the written word are fundamental to survival especially if you’re largely housebound or bedbound.

I just crack on with it, as I crack on with everything else.  Stumbling my way through life in a haze of fog with a brain which feels like it’s fundamentally broken.  Just typing this page has been a monumental effort and I can honestly say my noggin is now hurting, kind’ve pounding and literally on the verge of shutdown.  If I were to try speaking now I’m fairly sure nothing would come out.

My friend Laura has shared some great quotes on her Facebook page this week, so I’m finishing with one which resonated for me, particularly in light of my brain issues:

Weekly roundup

I’m still recovering from last weeks’ hospital shenanigans.  I’ve broken out in really itchy hives and, due to all the histamine, am sleeping badly spending half the night either peeing or bathed in oily sweat.  It’s to be expected but it’s still shit.

However, two good things have happened this week.  I’ve found (yet another) new cleaner after my last one quit after only 2 months as she’s moving out of the county (like she didn’t know that when she took the bloody job) and I’ve also found a mobile dog groomer who will come to the house to clip Bertie.  I’ve been doing it myself but have had to face the fact that my joints are simply too painful now and I can no longer cope.  But I didn’t want to take him to a regular dog groomer, where he’d sit in a cage for hours and be totally stressed out by all the other dogs, so I’ve found someone who will clip him at home:-)

I just want to clarify that my ‘Cure Me!‘ post was about people looking for a cure.  I’m not opposed to trying things which might help some symptoms particularly in the early years of being sick.  My family spent over £20,000 on various treatments for me when I first became ill.  Some helped a little bit, maybe.  Others made me so ill I was hospitalized.  The majority just robbed us of cash and had no effect whatsoever which has also been the experience of 99% of my friends.  My point was that if you think a cure is out there which will give you back your old life you’re sadly in for a disappointment.

We are all at different stages in our chronic illness journey and my blog charts my particular stage.  I felt very differently in the early years.  How I coped 2 years into my illness was very different to 10 years into my illness, which is different again 20 years on when 2 other diseases on top of ME have been added to the mix.  When you’ve been sick for a quarter of a century you too may find yourself wading in an ocean of jaded cynicism ;-)  Middle age has added another dimension too.  Even healthy people start to notice their body falling apart at Menopause and mine often feels like it’s giving up the ghost entirely.   My early-years optimism that my illness would improve is replaced by the stark realization that my future holds nothing but a downhill slide into increasing disability and nothing I can realistically do can stop that.  Illness is a very individual thing and I can only write from my own perspective.

We’ve had our first glimpse of spring sunshine this week, although it’s still not particularly warm.  It was my bezzie mate’s birthday so we headed up the Lakes for lunch and had a gorgeous afternoon.  Well, it was gorgeous until 2 families arrived by the lakeside with half a dozen little children who proceeded to lob stones into the water, squeeling in delighted excitement at the top of their lungs and terrifying the wildlife, which kind’ve spoiled the tranquility.  No offence to all you mums out there but I find loud children really fucking irritating ;-)  Maybe they’d’ve been better off at somewhere like Blackpool, or a children’s play centre, rather than a beautiful, quiet lake where people come to enjoy the scenery, unwind and get away from annoying loud people?  Anyways, here was the view (pre-spoiling by said little people and their even more annoying parents one of whom, in the face of all this beauty, spent the entire time with his back turned to the lake and his ear glued to his phone):

Yes, I know I’m a grumpy old bitch.

Thursday I had a contact lens trial.  I’ve worn distance glasses since I was 30, and last year added reading glasses to my armoury.  As it rains 8 months of the year here in the Lake District having to wear glasses, which become obliterated by water and steam up the second I get back in the house/car, annoys the shit out of me (I seem to’ve spent the whole week annoyed😉 ).  I did try contact lenses several years ago but they didn’t work out.  However, I’m a little better now than I was then so thought I’d give them another bash.

Of course, like all things in my life it was never going to just be easy was it?  One eye is astigmatic and the other eye is not.  Which meant 2 different types of lenses.  Which didn’t work – not only was my distance vision then blurred, I couldn’t read a damn thing either.  So I’m having to have simple distance vision contacts, but still have to wear my glasses for reading.  I start my trial next week and will just have to see (‘scuse the pun) how it goes though I can’t say I’m optimistic.

Yesterday I was ragingly hormonal and, although shattered, I needed to get away from the house and do something different.  So I palmed Bertie off onto my parents and drove to a local Estuary where I had a car picnic then sat for 2 hours in freezing cold winds watching the wading birds.  It’s not everyone’s idea of a good time but I loved it.  If you’d told me in my early twenties I would become a Twitcher I would have said “shoot me now and put me out of my misery!”😉



Cure me!

I’ve written variations on this post over the past couple of years, but it’s always worth repeating for new visitors to my blog.

None of us want to be sick.  I’ve lost virtually my entire adult life to illness and it’s not a path I would ever have chosen.  I was bedridden from 26-36 at a time when my healthy friends were marrying, having children and developing careers.  I’m now 48 and I still spend 17 hours of every day in bed.  I still have no career, no partner of any description let alone a husband, live in increasing poverty and the simple tasks of every day living are a constant struggle.  It’s not much fun.

But in many ways I’m one of the lucky ones.  I developed ME in 1996 and it only took me 6 years to realize that:

  • There is no cure for ME and
  • I would be sick, to varying degrees, forever.

So when I was diagnosed with both EDS and MCAD, neither of which are curable or particularly well treatable either, it wasn’t that much of a big deal.

I have friends who, 20 years on, still can’t come to terms with the fact they are chronically ill with a disease (or diseases) for which there is no cure or really effective treatment.  I can’t image how stressful that must be.  To search for decades for something which doesn’t exist.  To not be able to find peace with your situation.  To constantly be longing for a non-existent future and, by the very nature of that, not living in the present.

That’s not to say you should give up trying things which might help.  One of my friends was bedridden with ME for 15 years before discovering that low dose Naltrexone helped her enormously and she now lives on her own with the help of Carers.  But I look at posts on the ME Association’s Facebook page from newly diagnosed people asking if L-glutamine will stop their pain, or if Lymphatic drainage will cure them and I want to scream “OF COURSE IT WON’T YOU NUMPTY.  IF IT DID NONE OF THE REST OF US WOULD BE SICK!”.  I don’t though, cos they need to come to terms with the fact there is no cure or effective treatment in their own time and in their own way.  It’s really tempting though!

In America in particular, where money buys you anything, my sick friends are often taking 2 dozen pills and potions a day and trying really weird and wacky treatments like hyperbaric oxygen and I just watch the crazyness with an aching heart.  I have friends who tried all that shit 20 years ago and, spoiler alert, they’re still sick and financially destitute to boot.  That would be because ME isn’t a curable disease, particularly if it’s complicated by other diseases as it so often seems to be.

I’m now going to get comments from people who know people who were really ill and are now ‘cured’.  This is why an accurate diagnosis is crucial.  There is no diagnostic test for ME and because of that people get diagnosed with it when they actually have a variety of other diseases.  They then try a gluten-free diet and, voila!, they’re all better.  The fact they obviously didn’t have ME in the first place never crosses their mind – they have the cure for ME and are determined to preach it to the world.  They annoy the shit out of me.  And don’t get me started on people who are cured by eating medjool dates or wheelbarrow loads of kale because they annoy me even more.  Complex neuro-immune diseases are not cured by eating an anti-inflammatory diet any more than they would be cured by 3 pints of a lager and a packet of crisps.  The very idea that diet cures disease is so bonkers I have no clue why the myth still perpetuates.  Actually I do know.  It’s born through desperation and I can understand that, if not embrace it.

I know some people with EDS who have been helped tremendously by physiotherapy or prolotherapy and I’m delighted for them.  I’ll be interested to see how that pans out when they’re 50 and menopausal though – I didn’t sublux a joint til I was 45 and my hormones did a runner.

In respect to Mast Call Activation Disorder the one thing reading Dr Afrin’s book showed me is that none of his patients were ‘cured’.  He helped some and didn’t help others no matter how many drugs he threw at them.  When you don’t know what causes a disease it stands to reason you really don’t know how to treat it, let alone beat it.

Nothing I say, however, will stop some people from chasing the dream of a cure.  In their hearts they know it’s futile but it’s become their reason for being.  Every last ounce of their precious energy each and every day will be spent on 2 dozen forums excitedly chatting to other people trying the same wacky, and pointless, treatments as them ignoring the fact there are no ‘cured’ people on the forum, or anywhere else come to that.  Chasing the cure gives them a goal, a purpose for the day when they have lost their sense of identity and reason for existing in the world.  I get it.  Truly I do.

None of us wanted this life.  But it is what it is and it’s still possible to find purpose, meaning and……dare I say it……joy in amongst the chaos and uncertainty.  For me that’s found in nature, my dog, my photography, helping my Church and my community as a volunteer from my bed, looking in on my 86 yr old next door neighbour who’s just lost her husband, blogging and hopefully helping you all wherever in the world you might be.  Focusing too much on our limitations, our pain, our suffering is unhealthy and we’re already sick enough.

We have to find a new way in this world we didn’t want or choose.  Does that mean I spend my days in a happy-clappy-zen-filled haze?  Don’t be stupid.  I get fed up, depressed, angry, frustrated, tearful, resentful, suicidal and spend a large part of every day bored out of my skull.  But then I did all that in my healthy life too – I had heartache, depression, grief, friendships which disintegrated, cheating boyfriends, money worries, time pressures and trust me when I say that doing the filing hardly filled me with job satisfaction.  It wasn’t all rose-tinted and fabulous, no-one’s life is.

“With all its sham, drudgery and broken dreams, it is still a beautiful world.  Be cheerful. Strive to be happy.”
Max Ehrmann, ‘Desiderata’

Book Review

‘Never Bet Against Occam’: Mast Cell Activation Disease & The Modern Epidemics Of Chronic Illness and Medical Complexity by Lawrence B. Afrin, M.D.

In March 2016 the first ever medical book on Mast Cell Activation Disease was published by world leading American mast cell expert and hematologist/oncologist Dr Afrin.  It’s a weighty tomb, over A5 in size and 400+ pages long though the actual book only takes up the first 200 pages, with the latter half devoted to an extensive medical dictionary.

Although it’s supposedly aimed at patients, with witty titles like ‘Well, we’re in a world of s**t now: gastrointestinal findings in MCAS’ you will struggle to read this book without a good education, basic knowledge of medical jargon and a grounding in mast cell disease.  It is not for the faint hearted or the severely brain fogged!  Having said all that I had some light-bulb moments which I’ll outline below and it was incredibly reassuring to read about my disease from someone who truly gets it.

The book covers every aspect of MCAS, from rashes to thinning hair, lung problems to bladder pain, hormones to blood findings and everything inbetween.  There is an extensive chapter on diagnosis & gene testing, and an even larger chapter on treatment.  Of course, none of the diagnostic tests are available in the UK and neither are many of the treatment options which is frustrating as all hell and the reason I don’t frequent any MCAD forums or groups – hearing about all the testing and treatments American patients receive is just depressing and makes me very despondent.

The book is way too large to cover in detail, but I thought I’d share some of the sections which particularly stood out for me:

  • “Hair (especially on the scalp) often becomes brittle and dry and patients often go through cycles of increased hair thinning and loss”.  See this post regarding my own alopecia.
  • “The nails become brittle and weak and don’t grow normally.  They often acquire longitudinal ridges…..”   See this post, which explains my nail growth problems and weird longitudonal ridges which maybe aren’t so weird after all!
  • “MCAS patients also often cause their dentists fits because of how much dental and peridontal deterioration occurs, even when the patient has always been good about attending to dental hygiene.”  I’m going to print this bit off for my Dentist as he constantly tells me I’m brushing my teeth too hard which is why my gums are receding early, and I keep telling him I do not!
  • “….one of the end effects of mast cell disease’s impact on the immune system is impaired healing”.  Coupled with the delayed healing of Ehlers-Danlos it’s a wonder my wounds knit together at all!
  • “….Fibromyalgia is a diagnosis that MCAS patients have frequently acquired at some point along their diagnostic paths……….random skin biopsies in fibromyalgia patients have been found to harbor roughly ten-fold more mast cells than random skin biopsies from healthy people.  This of course doesn’t come anywhere close to proving that fibromyalgia is a variant of MCAS but it’s nevertheless an interesting observation.”
  • On the subject of diagnosis: “Are there ‘odd’, ‘strange’, ‘weird’, bizarre’, ‘unusual’, ‘mysterious’ symptoms and findings? (….many patients with unrecognized MCAS have long had chart entries incorporating exactly these words).”  When I was having seizure-like episodes and “bizarre” (what I now know to be anaphylactic!) reactions to all drugs my GP told me not to tell any other doctor as they’d think I was mental :-(  So I kept my symptoms quiet for nearly a decade, putting my life at risk in the process.

The book contains a few pages on H-EDS.  Dr Afrin states “here’s the really weird thing about type III EDS: it’s actually not a genetic disease – at least, not as far as decades of research into connective tissue genes and proteins have been able to discover……… might be the case that, for at least some EDS Type III patients, the problem lies not in the normal assembly of allegedly mutated connective tissue proteins into connective tissue that functions abnormally but rather lies – due to aberrant mast cell mediator release – in the abnormal assembly of entirely normal connective tissue proteins into connective tissue that functions abnormally?  I’m going to really stretch the bounds of how far one should anologize by saying this, but I’ll say it anyway: could EDS type III be a ‘connective tissue autism’ in which normal connective tissue proteins are connected in abnormal ways vaguely akin to how in autism normal brain cells are connected in abnormal ways (possibly, in some patients, as a consequence of abnormal mast cell mediator release)?”.

I admit I found  his opinion on H-EDS difficult to read.  I, and many other people, fought a very long (in my case 40 year), frustrating and difficult journey to have our connective tissue disorder recognised and to have the diagnosis questioned is tough.  There is also the pedantic point that there is now no such thing as “type III EDS” it is called EDS-hypermobile type and for another if it’s not genetic how come I inherited mine from my Mum?  He may turn out to be right that H-EDS is a form of Mast Cell Disease rather than a genetic mutation of connective tissue but I know many H-EDS+MCAD sufferers who are having their MCAD treated with little, or no, effect on their EDS which has to raise questions.  Of course, I’ve also heard from supposed H-EDS sufferers who say that treating their MCAD “cured” their hypermobility – my answer to which is that they were possibly misdiagnosed and didn’t have H-EDS to start with (H-EDS is so much more than simply being hypermobile).  The truth is no-one currently knows the origin of H-EDS, though the inheritance factor is undisputed.

In contrast to the section on H-EDs, I found the chapter on genes mirrored my own thoughts on the subject to a T.  “We’ve been hearing for several years now that the era of genomically personalized medicine is almost upon us, a time when…….we will be able to determine anybody’s complete genetic code which – and here’s where we wave our hands in a magic gesture – will tell us all that’s wrong with us now and all that’s likely to go wrong with us.  Yeah, right.  If only……..  A dollop of your saliva….produces pages and pages and pages (of information)… have Mutation code A, which puts your risk for Disease B at Level C….and so on…..You forward this information to your doctor……and he says ‘there’s a lot of stuff here, and the truth is, we really don’t yet know what 99.99% of this stuff truly means and there’s nothing to be done about it at this point anyway’.  And he’s exactly right.”

Amen to that.  There are people on forums on the internet who seem to spend every waking moment of their lives analysing their genetic data.  They’re obsessed.  And for what, exactly?  Having a specific gene mutation does not mean a damn thing and certainly doesn’t determine your risk of developing a particular disease, just like not having a gene mutation doesn’t mean you have a clean bill of health.  My 23andme results said I didn’t flush (wrong), have a tremor (wrong), have migraines (wrong) or have Dupytrens Contracture (which may or may not be wrong, my Mum developed hers in her 60s and her sister and brother in their late fifties, so I’m not yet old enough to know if I’ll develop it too).  No gene has been associated with migraine disorder in any even, so how on earth the company can say you do not have mutations linked to migraine is utter bollocks.  However, there are exceptions to the rule, for example the BRCA gene which increases the likelyhood of female related cancers exponentially.  In mine, and Dr Afrin’s opinion, gene testing is going to become incredibly important to health care in the future, but we’re just not there yet.

Having said all that, there is some interesting information on KIT, thought to be the most important genetic controller of mast cell activity, in Dr Afrin’s book that’s well worth a read.

If you have a good general understanding of medicine, and mast cell disease in particular, I can highly recommend this book.  If you don’t, you may struggle.  Available in hardback from both UK and USA Amazon: UK cost approx £13.


Weekly Roundup

I can honestly say this week has been life-changing.  Having spent the past 4 months thinking this might be my last year on earth to finding out that, actually, all is well has been mind blowing.  I know many women survive ovarian cancer, but when you’re allergic to innocuous little drugs like paracetomol (tylenol) you can guarantee anti-cancer drugs weren’t going to be tolerated and that a cure for me would have been unlikely.  My maternal Aunt died from ovarian cancer 4 years ago – she had an allergic reaction to chemotherapy drugs which, if she could have taken them, would probably have cured her so it’s not like my fears were unfounded.

My MRI scan on Friday went well and only took about 25 minutes.  The staff at the RVI have all been absolutely lovely and the place runs like clock-work.  I can’t tell you the difference this is from my local hospital, where the staff are overworked and stressed and you often face long waits for your appointment which is then rushed.  This was my 7th MRI scan and I still hate them with a vengeance.  I’m not particularly claustrophobic but it does feel like you’re being buried alive and the constant background bang, bang, bang of the machine makes me feel like I’m buried alive in a nuclear reactor (I’ve actually been to a nuclear reactor and the background sound is identical!).  The worst part though is the vibration, which sets my nervous system off, which makes my heart flip flop about in my chest, which then affects my breathing, which then creates adrenalin which makes me want to leap off the table and run.  It’s not a panic attack per se but the effects are the same and I have to concentrate really hard to bring my breathing and heart rate under control and calm everything down.  Twenty minutes in I’m always really tempted to press the panic button.  The only thing which stops me is that the scan needs to be done and, even if I come out of the tunnel at that stage, I’d just have to go back in again.  I’m now just waiting for an appointment to come through the post to see the Anaesthetist who will decide if some kind of hysterectomy surgery is feasible given my mast cell disease.

Even though the news this week was fabulous I’ve still found the whole thing challenging.  4 hours driving a car was tortuous for my back and arms and to have to do the whole journey over again a few days later was agonizing.  It was stressful navigating through a strange city on my own and making sure I arrived for my appointments on time.  Then of course there were the mundane logistics of making sure Bertie was still walked, fed and taken care of and I was fed, not to mention filling the car with fuel and checking the tyres etc. (the car has now developed engine whine and is going to have to go into the garage to be looked at!).   And inbetween all that I’ve interviewed for a new cleaner, still done mine and my parents’ grocery shopping, sent my Dad’s camera off to be mended, bought a birthday prezzie for my best mate and filled in some urgent forms for the Department for Work & Pensions.  I’m on-my-knees exhausted.

Despite my trip to Newcastle on Friday I went out in the evening.  I know!!  It was my Camera Club’s annual Awards Dinner and I was in line to collect 4 trophies, so I got my glad rags on and off I toddled.  I’ve no idea where I found the energy but had an absolutely wonderful night and it was just what I needed to de-stress.  The meal was gorgeous and it was just so fab to act like a normal human being, chatting and having a laugh.  The people at my Camera Club are really nice and it feels like such a safe environment to be a part of.  Here I am in my new frock from Sainsburys supermarket which Mum treated me to at Easter in place of an Egg (apologies for blurring my face, I don’t have photos of myself online to be downloaded by god-knows-who):

We now have a 5 month break from Club and are back in September. I’ll really miss it and miss the company.

Chronic Pelvic Pain

I started my periods aged 11 and they were painful from day one.  Dysmenorrhoea (ie excessively painful periods) is common amongst even the healthy population and suffered by up to 75% of women but it’s even more common in Ehlers-Danlos patients with a suggested 92% of women having painful menses.  When I could take pain killers it wasn’t too much of a problem – a few Feminax or some Mefanemic Acids tablets and it was down to a dull roar and I could carry on my normal life, but when I became allergic to painkillers in my mid thirties it became much harder to live with.

There are various theories as to why having EDS causes excessive period pain but in truth we don’t conclusively know the reason.  With up to 75% of healthy women also having dysmenorrhoea there are factors involved which obviously have nothing to do with EDS and in my mind EDS just complicates an already common problem.

When I hit 40 my EDS got much worse and on top of that my (pre-existing but largely a-symptomatic) Mast Cell Disease went nuts.   About 10 years ago I developed lower, right abdominal pain.  It’s a stinging pain.  It doesn’t come and go, it’s there all the time, but it does get much worse when I ovulate and during my period.  I had investigations and my right ovary looked totally healthy.  Endometriosis was suspected but the only way to know would have been a Laparoscopy and for that I needed a general anaesthetic – no way Pedro, not after I’d already had a reaction to general anaesthetic after having spinal surgery when I was 16, longgggg before my MCAD caused me any drug issues whatsoever.  Gawd knows what would happen now!

Over the last decade my pelvic pain has gotten worse.  Much worse.  Ovulation, whichever side it’s on, can be excruciating.  For 4-5 days before my period I suffer stomach cramps, increased lower back pain and bowel pain (which can get so bad I have to do labour breathing when I poop) and for the 3-4 days of my actual period my entire pelvis and the tops of both thighs feel like they’re on fire.  This often doesn’t settle down until I ovulate, up to 14 days later – I’m not saying it goes, just that it becomes tolerable.  So I’m basically in pain all the time.  A burning pain, which radiates down to my groin and pelvic bone on the right side and goes across my lower abdomen.  And on top of that I have the constant stinging pain on the right-hand side which I always assumed was a problem with my ovary.  It’s not a lot of fun.

The Gynae Consultant on Monday seemed perplexed by my pain.  Both my ovaries look totally healthy.  I’ve obviously had various cysts over the years but they’ve all resolved – many women get monthly ovarian cysts, sometimes quite large, and they don’t cause the constant pain I have.  I may have endometriosis which is notoriously difficult to diagnose, though if there were adhesions sticking any of my organs to each other this would usually be seen on an MRI and my MRI in November was totally normal (other than finding a 5cm right ovarian cyst which has now disappeared).  Pelvic Congestion, where the veins in the pelvic area expand (more common in EDS) would also usually show on MRI and mine all look tickety-boo.

I do have lots of uterine fibroids, both internal and external, and fibroids can be painful.  But from reading various online message boards about fibroids the pain experienced is nothing like the pain I have so I’m doubtful they’re the cause of my issues either.  To think I could go through the trauma of having a hysterectomy and still be left with the pain totally freaks me out.

There is always the niggle in the back of my mind that my pelvic pain is down to my bowel and nothing whatsoever to do with my lady bits.  I get sharp, stinging pains from my stomach to my backside, alongside chronic burning pain which can only be inflammation.  A belly MRI 5 years ago showed a totally healthy GI tract though, from stomach to bum, so again if anything serious were going on surely to goodness something would have shown up.  I’m sure my entire GI tract is chronically inflamed but would that cause the kind of pelvic pain I’m enduring?  I really don’t know.  When I talked to the Gastroenterologist he thought some of my pain could be Gynae related, and when I talked to the Gynae this week she thought some of my pain could be Gastro related!

My worst nightmare is that I undergo the trauma of surgery only for them to open me up and find a totally healthy looking pelvic area.  No endometriosis, no scarring from previous burst ovarian cysts, and no real explanation for my pain.  It could simply be chemical from my MCAD (mast cells leak mediators which cause chronic inflammation and the uterus is packed with mast cell receptors) and, as I struggle to take any of the drugs used to treat Mast Cell Disease, I might just be stuck with it.  Forever.  Somebody shoot me.  Or maybe having my fibroid packed womb out will at least help, if not cure.

Like most issues with my body there just are no easy answers.  You can only do what feels right at the time and, if I do get to have my womb removed I don’t think I’ll regret the decision for a single second, even if the op and post-op period is rough.  Having had dysmenorrhoea for 37 years I’m just over it and the thought of never having another period in my life sounds like heaven.  If my ovaries are healthy I’ll get to keep them which, given my family history of early osteoporosis, would be beneficial and means I can have a more gentle slide into menopause.  I’d also like to keep my cervix, cos I’m not sure how orgasm works without one (and no-one seems to talk about that on the message boards!).  This all might be a mute point though as the Anaesthetist might say surgery is just too risky given my MCAD/drug allergies.

I’m having an MRI scan tomorrow (Friday) which will give a better view of my fibroids then I have to wait for an appointment to see the Anaesthetist who will decide if surgery is an option.  Wish me luck.

p.s. I should have made it clear that I don’t have heavy bleeding with my periods, quite the opposite.  I always thought fibroids caused heavy periods but according to the Consultant if they are on the outside of the womb they have no effect on bleeding.


What a difference a day makes

I don’t quite know where to start.  The past 24 hours has been……I can’t even think of the words to use!

Sunday morning Bertie threw up after his breakfast.  He does have a sensitive tummy and is occasionally sick for no good reason so I didn’t think much of it, particularly as he was fine afterwards and we had a lovely walk down by the river.

He wasn’t himself that afternoon though – a bit quiet and uncomfortable, which I assumed was his back pain playing him up.  Again we had a lovely walk where he ran about like an idiot.  He had his dinner as normal at 4.45pm and I was looking forward to a bath and a very restful night as Monday was my long drive to Newcastle and appointment re my ovarian mass.  Y’know what they say about the best laid plans!

Bert usually sleeps all evening, but Sunday night he was restless and at 8pm he suddenly got up and projectile vomited his entire undigested dinner onto the bedroom floor.  This was followed by panting and an obvious temperature, distressed behaviour, more vomit at 10pm, and 12.15am, and 1am and at 2.15am he puked blood.  I rang the 24 hour vet line in panic who said he’d probably just burst a small blood vessel retching.  While I was on the phone Bert finally seemed to get comfortable and went to sleep, so I didn’t want to rush him to the vets in the middle of the night and decided to just keep my eye on him.  I finally nodded off myself sometime around 4am.

At 6am I was awake again and, although miserable, Bert had stopped being sick and seemed a little brighter.  I, on the other hand, was a complete wreck.  However I had to get up, have breakfast, get dressed, put some lunch up and gather myself together, bundling Bert and my stuff into the car for 8am to drive to my parents where Bert was staying for the day.  I left the vets number, a written history of what had happened and told my folks to ring the vet immediately should he be sick again or they had any concerns.

I barely remember the 2 hour drive across the country because my brain was like scrambled egg.  However, I got to the hospital OK and arrived at my appt dead on time.  The whole thing was incredibly efficient and I was seen within 10 minutes – what a change from my local hospital where I waited nearly an hour and the whole thing seemed chaotic and unco-ordinated.  The staff were lovely and I spent 50 minutes being thoroughly examined.

My local hospital hadn’t sent a single test result through let alone my MRI or Ultrasound findings so Newcastle were totally in the dark.  It’s fucking outrageous and I will be making a formal complaint about it.  So I had to have another vaginal and belly ultrasound which found……..precisely nothing!!!!!  No ovarian cysts, suspicious or otherwise.  I was in complete and utter shock after months of thinking I had cancer.  They think the complex cyst which showed up in February was a hemorrhagic cyst and has simply burst/resolved on its own.

While this is wonderful news I’m still left with a decade of severe pelvic pain and periods so awful they make me pass out.  The Consultant said I did have “lots” of fibroids, one of which looks like a 3cm pedunculated fibroid on the outside of my womb with its own blood supply.  This can become strangulated and be incredibly painful and it has to be said when they pressed on the area of this particular fibroid during the scan I nearly shot through the ceiling.

The Consultant wants me to go back for an MRI scan (I’ll be glowing in the sodding dark next😉 ) and also to see the Anaesthetist to discuss the option of a hysterectomy.  She said only he can decide if surgery with all my drug issues is a viable option.  If not, it looks like I’ll just be living with my god awful pain – kill me now.  I should be able to keep my ovaries though and my cervix and just have my uterus removed, which is the best of all worlds for a natural menopause and my (non-existent) sex life.

I was so exhausted and addled yesterday the fact I don’t have cancer didn’t really sink in.  But this morning I’ve woken so much lighter that, if I had the energy, I’d be doing cartwheels.

Bertie seems much better this morning too.  I’m convinced he picked up a tummy bug when he spent the day at the Vets on Friday for his back x-ray.  I starved him yesterday and this morning fed him a bland meal of freshly cooked salmon and plain mashed potatoes – I’ll just have to see if he keeps it down and if his bloody diarrhoea settles. He seems fine so far and is spark out next to me snoring:-)

So, I may still be facing a major operation but at least there’s no urgency or the prospect of cancer treatment afterwards.  Yippppeeeee!!!!!