Tag Archives: symptoms

The hormone bitch from hell

It’s finally happened.  I’ve turned into the exhausted bloated frazzled dippy hormone bitch from hell.  Y’know, the bad tempered middle aged woman whose husband and kids you pity cos she looks like no-fucking-fun to live with?  Yup that’d be me.

My peri-menopause is somewhere in the outer stratosphere as my ovaries desperately churn out hormones so exhausted their tongues are hanging out.  They feel beaten, like a whipped dog, yet refuse to lie down in the corner and just die.

My day started with period pain.  In fact, my week started with period pain.  It’s been 7 days of cramp riddled hell but no fucking period.  What’s up with THAT?!  Aunt Flo will no doubt arrive at 2am after I’ve gotten up to pee for the 4th time in four hours, passing clots so huge the toilet bowl will look like a blood bath.  Yes my friends, I now have periods which look like a crime scene in which I am the victim.

I have pimples.  It’s like being a teenager all over again but without the taught, lean body and hours of heavy petting.  I can’t believe my 17 year old self had more sex in one year than I’ve had in the last decade.

I’ve lost my car keys.  Again.  I go into the kitchen to look for them. Why am I in the kitchen?  Think woman, think!  Ah, yes, car keys.   Where the fuck did they go?  Hmm, I’m thirsty maybe that’s why I’m in the kitchen.  Oh, car keys!  What the hell are they doing in the fridge?  Er, why am I in the fridge?  Maybe I need to get something out for dinner tonight.

I am evil.  I can hide it until 10am when I need to get my dog into the car.  “Bertie” I call sweetly “time to get in the car baby”.  He ignores me and continues to sniff other dog’s wee on the bush at the corner of our drive.  “C’mon fluffy child, I’m late.”  He cocks his leg and moves a good foot further away.  “Bert” sounding steely, “get in the sodding car.”  He disappears round the corner out of view entirely.  I stomp off down the drive screaming like a banshee “get in the goddamn car you fucking disobedient German fucking Schweinhund!” and unceremoniously help him back up the drive with my foot, at which stage 5 Ramblers walking past my house consider reporting me to the RSPCA.

I set off into town.  I am the only person driving correctly and everyone else is an arsehole imbecile who has obviously never heard of the Highway fucking Code.  What the hell are they doing on the roads in the middle of the morning anyway, don’t they have jobs?!  Idle fuckers.

I go into Sainsburys for a pair of jeans a size bigger than I’ve worn for the past 30 years.  I only have to look at a Ginger Crunch and I’ve gained 3lbs and am so swollen with water you could use me as a beach ball.  I ignore the skinny stretch because lycra and I are no longer friends, and choose the pair with the elastic waistband which look reassuringly comfy.  I need a new bra but they don’t make them big enough.  They don’t even make a tape measure big enough.

I have frown lines between my eyebrows that 100 years of botox couldn’t fix and jowls that look like Schnorbitz.  Only Schnorbitz has more hair.  Wayyyy more hair.  I wonder if Sainsburys sell eyebrow pencils?


On my way home I drive 5 miles past the petrol station before I realize my tank is on red.  I must remember to do a “need petrol” post-it note and stick it on the hall table.  Remember Jak, petrol post-it.  Petrol post-it.  Petrol post-it.  As soon as I’m through the back door I reach for a pen.  Hmmm.  Why did I need a pen?  Was I supposed to be writing something down?

It’s 2pm and I crawl into bed for a nap.  Not a rest, an actual drool-on-the-pillow old fogie’s nap from which I wake bathed in sweat and with armpits which smell like death.  I’d dreamt I was being arrested for some heinous, but unknown, crime like forgetting to pay my council tax bill even though it’s done automatically by direct debit, or stealing invisible plans to the rights of way on the local footpath.  I wonder if my phone is bugged or the government are spying on me through my TV.

I slob under the duvet, chomping like the hungry caterpillar and binge watch 3 hours of Bake Off to combat the anxiety and paranoia.  I prefer Pru to Mary.  Mary was nice and nice people are irritating.  I forget I used to be one.

 

 

 

 

 

 

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Yet another year of Peri

Even though we’re only half-way through 2017 I already have an entire year’s data on my ever changing menstrual cycle.  That’s because my cycles are now regularly shorter than 28 days, so I’m managing to fit in double the amount of periods than I used to.  Lucky me, especially bearing in mind I have endometriosis and adenomyosis and they are excruciating.

When my periods first started to change back in 2012 at the age of 44 and I realized I had probably started peri-menopause, I wanted to know about other women’s experiences.  There were legions of horror stories online, very little about the positive and hardly any actual hard data.  “It’s different for everyone” was a common theme, which is all well and good but I still wanted to know what was physically happening to other women to give me some companionship in my own journey through The Change.

Being as though I didn’t find a single story which tracked progression through peri-menopause I thought I’d track my own, so began compiling data on my menstrual cycle.  I’ve been a regular 27/28 day cycle person my entire life but in 2012 my cycle length started to subtly change and I initially experienced slightly longer cycles than usual.

MC2012

In 2013 things went totally haywire.  As you can see from the chart below I basically had alternating long and short cycles, with a couple of very short cycles (for me at any rate).  I had my first daytime hot flush this year, but only the one, and no other real symptoms.  I did have my hormones tested and they came back as “normal” which isn’t at all unusual in the early stages of peri-menopause.

MC2013

In 2014 my cycles were still abnormal, but not quite as erratic as the year before.  Again, no other symptoms of peri-menopause that I could put my finger on.

MC2014

The start of 2015 saw my cycles even out, only to become erratic again in the second half of the year.  I also saw a couple of symptoms appear – vaginal dryness around my period, which doesn’t half make your ladygarden itch and is well uncomfortable as your undies rub against your bits, and changes in my mood.  I had sudden and inexplicable rages which were absolutely overwhelming.  Having never suffered from PMT I found being so out of control of my emotions really difficult, though thankfully the hooha only usually lasted a day or two around my period.

mc2015

In 2016 I continued to have vaginal dryness and mood changes, but the dreadful rages I felt in 2015 thankfully disappeared.  I did still have a short fuse at certain times in the month but it was nothing I couldn’t control.  I also had some really weepy episodes, usually in the few days before my period started and by the end of the year was starting to feel quite overwhelmed.  As someone who usually has very stable moods this was unusual for me.  I didn’t know how much was down to the perimenopause and how much was down to what was going on in my personal life, ie the situations with my parents and my Mum’s drinking, so decided to see a therapist to help me work through it.  Three months later and I was feeling much calmer, so you really shouldn’t put everything down to your hormones!

mc2016

This year as you can see from the chart below, my periods are becoming even more erratic.  I don’t have a clue when The Curse will arrive, which makes planning difficult.  I am grateful my moods have fairly much evened out and I’m back to feeling more like myself, though I have periods of anxiety for no apparent reason which is fairly common for peri-menopause.  I still haven’t had any hot flushes though my sleep has definitely been affected and there are times I struggle with insomnia.  My migraines around ovulation and menstruation have definitely become worse and can last for days which is crippling.  My energy levels have taken a nosedive and my brain fog some days is dreadful, however this may be due to the fact that I am borderline anaemic and now on supplements for my iron levels rather than being solely down to my hormones.  The biggest two things I’ve noticed this year have been weight gain and painful, itchy breasts which have been checked out via mammogram and are fine.

I’m definitely having symptoms of peri-menopause but they’re so far nowhere near as bad as I was expecting and nothing like the horror stories I’ve read about online.  They can be annoying but are manageable and it helps that I know what’s happening and that it will all eventually pass.  Everything that’s happening to me is normal and to be expected – very few women just stop their periods with no symptoms at all and I’m happy for nature to just take its course.  This all may change as the actual Menopause arrives and I may end up eating my words but so far so good!

A full 5 years into peri-menopause and there is absolutely no sign of Aunt Flo packing her bags.  Due to my endo and adeno my monthly cycles are incredibly painful and debilitating, and I have to say I’ve been ready for some considerable time for the monthly torture stop.  So, periods, if you’re listening I am over you – feel free to leave the building!

The M Word

Last week, Newsnight presenter Kirsty Wark appeared in a documentary on the Menopause.  To be honest it didn’t tell me anything I didn’t already know but it was nice to hear about another woman’s experience because we just don’t talk about it in this country, not even amongst ourselves.  Yet it will happen to every single one of us.  I remember joining my Camera Club and was talking to a woman there in her early 60s.  I was rampantly hormonal that night and got confused so said jokingly “ignore me, I’ve got Menopause brain” and her eyes nearly popped out of her head that I would mention the ‘M’ word in polite conversation.

Historically, women’s hormones have been a taboo subject because we’ve lived in a male dominated world, even though men are currently in a 48% minority here in the UK.  Yes we had a female Prime Minister in the form of Margaret Thatcher but she only rose to power because she acted like a man, which kind’ve defeated the entire purpose of having a woman in charge.  Girls have always been seen as emotional, hysterical creatures simply because we behave differently to men and anyone who shows emotions is still seen as weak and not to be relied upon – then we wonder why mental health issues affect 1 in 3 people :-/

Women are just supposed to get on with their periods.  The adverts on tv tell us if we only use x brand of tampon we’ll be running marathons or climbing mountains, and if we pop a Feminax Ultra we won’t know what pain is.  Thankfully for some women this is the case but for others periods are a form of 4 weekly torture and going about our day business as usual is jut not possible.  This of course intensifies during Menopause yet we’re supposed to act like nothing is happening.  We are, thankfully, now sympathetic to puberty-induced erratic behaviour, door slamming and crying fits, and pregnant women are allowed days off work if they’re unwell, but the Menopause is still ignored and I can’t for the life of me understand why.  It’s the largest bodily change in any woman’s life and can cause absolute havoc.

We aren’t even honest about Menopause amongst ourselves.  When my periods first started to change and I suspected peri-menopause I went to see my (female) GP who said “well it’s a bit early but it only lasts 2 years then it will all be over with” which even I knew was a big fat lie!  Six years on and there is still no sign that my periods are about to stop for good.  The biggest shock of the documentary for me was to hear that at age 61, and ten years after The Change, Kirsty still has Menopause symptoms in particular the fact that she still doesn’t sleep well.  The myth that our periods stop and that’s the end of that may be true for some women, but certainly not for all.  In a phone-in for the documentary a 72 year old woman rang up to say she was still having hot flushes every single day of her life twenty years after her final period and I remember my paternal Grandmother started to sweat profusely following Menopause and didn’t stop ’til the day she died.  My own Mum’s vagina atrophied so much in her mid seventies that she was prescribed oestrogen pessaries and her (female) Gynaecologist joked “women were supposed to die shortly after Menopause, so to be honest we’ve no idea how to treat hormone-induced symptoms in old people!” which tells you everything you need to know about the lack of information given to medical students in respect to older women and the female-related issues they face.

I don’t particularly want to celebrate my Menopause but I have no intention of ignoring it either.  I will bring it up in conversation if I feel the need and people can be as shocked as they like.  I won’t beat myself up, or apologise for, feeling irrational or emotional and will pamper myself when I’m feeling physically crap.  I won’t be hard on myself when I’m fatter at 55 than I was at 45, or joke about needing an afternoon nap.   All this is normal and it’s about time society recognized this huge transition in women’s lives and made allowances.

 

Holes in diagnosis

I was diagnosed with Benign Joint Hypermobility Syndrome in 2010 when I was 43.  I scored 8/9 on the Beighton Score and had other clues such as “mildly” stretchy skin, mildly blue sclera in my eyes, life-long bowel issues, an overcrowded mouth and high roof arch, migraine, heart murmur, mild scoliosis in my spine, congenital spinal stenosis, easy bruising, skin which scars easily, skin which tears easily, a positive Gorlin’s sign (ie being able to touch tongue to nose), chronic fatigue and widespread pain for which no reason could be found. My Consultant said she only diagnosed Ehlers-Danlos Syndrome when there was “significantly stretchy skin” which I don’t accept as correct.  With a family history of the symptoms of EDS (which she didn’t ask about) and my collection of symptoms it was clear I have Ehlers-Danlos Syndrome and whilst I accept I don’t have freakishly stretchy skin, to me my skin involvement is not “mild”.

Photo of stretchy neck skin

Stretchy neck skin

My skin in general is a bone of contention to me.  As well as weird lumps, bumps, moles, pigmentation and scars I’ve had some strange skin on my knees and tops of my feet my entire life, yet when I’ve mentioned it to Doctors in connection with my Ehlers-Danlos it’s just been dismissed.

It doesn’t itch and no matter how much moisturizing cream I’ve ever put on it never looks any different.  According to Doctors it’s not eczema or psoriasis but then they don’t tell me what it is.  Needless to say I don’t ever wear dresses above the knee :-/  To me it points towards Classical EDS but then I’m not an expert so what would I know?

At the time of my Joint Hypermobility diagnosis I’d never sub-luxed or dislocated a joint, didn’t have GERD or a hiatus hernia to my knowledge and had no idea I also had mast cell disease.  However, within 2 years of diagnosis my mast cell disease was potentially life-threatening, I had walking pneumonia from undiagnosed silent reflux (which is now not silent in any way!) and had subluxed 6 joints.  When the Powers That Be say Ehlers-Danlos is not progressive IMHO they have no idea what they’re talking about.

When children and adults under 30 are diagnosed with Joint Hypermobility Syndrome I wonder if they, like me, actually have EDS and it just hasn’t progressed to the stage of meeting the criteria.  Of course, not everyone with JHS has EDS but as no data is kept it’s impossible to know how many younger people’s disease goes on to be re-defined as Ehlers-Danlos.

Another part of my diagnosis which with hindsight was sadly lacking is the fact that I was offered no genetic testing.  I personally think this should be compulsory for all suspected EDS patients, especially if there is a strong family history.  My brother is 6ft 2″, has eyes which slant downwards at the corners, much stretchier skin than me, had ‘growing pains’ in his legs as a child and had to stop a promising professional football career due to knee problems.  He has flat feet and a high roof palate.  As a child he used to ‘pop’ his knuckles and do robotics (a dance craze at the time) because he was hugely flexible.  Now in his early 50s he’s so stiff he can barely move, yet he’s never been ‘ill’ like I am or had any of the bowel issues, pain or fatigue that I do.   He definitely has Marfan’s traits but luckily for him they don’t seem to have affected his life to any extent.  As a child he had chronic bronchitis which was put down to a dust mite allergy (no idea how they worked that out as he was never given skin prick testing) but he apparently grew out of it.  He’s still allergic to dogs and horses though, oh and eggs.  Lots of children have allergies and some kids do grow out of them, but bearing in mind our family history of mast cell disease I do wonder if there is some connection.

My Mum was hugely flexible as a child.  She has soft, stretchy skin which scars and bruises easily.  She has pectus carinartum (aka pigeon chest) which is caused by defective connective tissue which holds the ribs to the breastbone.  She’s had reflux for 30 years and had lost 25% of the bone mass in her pelvis due to osteoporosis by the time she was 54.  She had a collapsed lung for absolutely no reason in her forties which is found in some types of EDS but not usually the hypermobile type, and horrible varicose veins which developed in her twenties.  She’s had 3 fatty tumours removed from her skin and has very wide stretch marks due to pregnancy.  She also has dupuytrens contracture in her hands, which is due to defective collagen.  I can find no data to connect dupuytrens to EDS, but as there is barely any statistical data on EDS to start with it’s not surprising that no-one is looking for a link.  It seems too coincidental to me that someone with EDS has a genetic, un-connected connective tissue disorder of the hands.  She has obvious mast cell disease, though not as severely as me.

Dupuytrens contracture

So my family history seems to be a mix of Marfans traits, Classical EDS traits, possibly vascular EDS traits and Hypermobile EDS traits.  Chuck in MCAD and other inherited diseases (familial essential tremor, dupuyrens contracture, early onset osteoporosis – all through the maternal line) and to me genetic testing should have been carried out.

I don’t know whether at this late stage to push for genetic testing or not.  I’m not sure what it would achieve, however it might help my future disease management if it shows I have classical EDS traits as well as hypermobile.  It would also obviously be beneficial to find out if my Mum’s collapsed lung was connected to her EDS or not and whether unexpected vascular events are something I need to be concerned about.

I get sooooo fed up of being my own Doctor and at having to fight for every blummin thing.  What happened to medical staff looking after me and telling me what I need, instead of the other way round? 😦

ME: the facts

Following on from yesterday’s post, I am a little calmer this morning and thought I’d share a few facts with my readers to balance EDS UK’s appalling article.

1. ME is not a psychological disease.  It is classed by the World Health Organisation as a neurological disorder (Reference 93.3). The UK Department of Health accepts this classification and recognises ME as a neurological condition of unknown origin.

2. It has strict diagnostic criteria.  Admittedly they need to be revised as they are too broad and capture a proportion of people who don’t have ME, as well as those that do, and this problem with diagnosis is something I know the UK ME charities work tirelessly on with the Government.  The Holy Grail of a diagnostic test would end this confusion.

3. If your symptoms eventually turn out to be due to another disease and not ME, it means you have a rubbish doctor who hasn’t done his job properly, not that ME doesn’t exist.

4. You can have other conditions alongside ME.  Just because you have one disease doesn’t mean you can’t develop another, eg Ehlers-Danlos and POTS.

According to Cathy Collier, I don’t have ME and need to look harder for what’s actually causing my symptoms, so I thought I’d take a look back at the all the diseases I’ve had ruled out and see what’s left.  I don’t have:

  • Multiple Sclerosis or other nerve or neurological disorders
  • Peripheral neuropathy or other neuropathies
  • Cancer
  • Thyroid disease
  • Hormone imbalance/disease
  • Blood disorders
  • B12 deficiency
  • Iron deficiency
  • Vitamin D deficiency
  • Coeliac disease
  • Gallbladder disease
  • Liver disease
  • Ovarian disease/PCOD
  • H Pylori infection
  • Stomach ulcers
  • POTS
  • Periodic limb movement disorder
  • Sleep apnea
  • Gastroparesis
  • Osteoporosis
  • Lyme Disease
  • Chlamydia Pneumonae
  • Mycoplasma infection
  • Allergies
  • Epilepsy
  • Autoimmune disorders
  • Arthritis or other inflammatory diseases
  • Mental health disease

So, other causes for my symptoms have been ruled out which is one of the diagnostic criteria for ME.  In addition my illness:

  • Followed an acute infectious event (in my case a tummy bug).
  • Became chronic.
  • Reduced my pre-illness activity to under 50%.
  • Includes the hallmark symptoms of ME, such as post-exertional malaise, delayed fatigue following activity, fatigue unrelieved by rest, sore throat and tender lymph glands indicative of ongoing immune activation (amongst a dozen others).
  • Being treated for my other diseases, eg EDS and MCAD, had no effect on my ME symptoms whatsoever.

Just like the hypermobile form of Ehlers-Danlos, ME is a diagnosis of exclusion, a history indicative of the disease and hallmark symptoms, such as post-exertional malaise and delayed fatigue unrelieved by rest which are almost exclusive to this illness.  ME does exist as an illness in its own right and it’s possible to accurately diagnose it, although to rule out all the other causes for your symptoms can be a long and frustrating process.  However, it took 42 years for my EDS to be diagnosed so long and arduous journeys are not unusual in the chronic and misunderstood disease world.

There has been a two decade long battle to get ME recognised and there is now a huge amount of research pointing towards problems with muscles, nerves and the immune system which refutes absolutely any suggestion that ME is a psychological disorder.  In addition there are many other diseases for which no single, diagnostic test is available (hypermobile EDS for one) yet no-one suggests for one minute they are imaginary or don’t exist.  I can’t believe, in 2015, I’m still having to defend the condition against this sort of ill-informed prejudice.  When is it going to stop?

Bits n Bobs

There’s nothing like starting off a Blog post with an informative, clever and witty title……..or not as the case may be ;-).

I’ve added a new page to the site on My Symptoms so that you can compare yours to mine (you wouldn’t think it was physically possible to have this much wrong with you yet still look like a totally normal functioning human being, some of time at least).  I actually found this page quite hard to write.  I’ve been ill now since 1994 and have had so many symptoms over the past 20 years it’s hard to remember them all, especially as some of them have, for the most part, gone and only come back when I have a relapse (which, thank God, is rare these days).  It’s also been so long since I was healthy I just accept my broken body, and forget that the myriad of symptoms I cope with every day of my life really isn’t normal.  So I’ve no doubt forgotten some issues that are quite important and will keep going back to the page and adding as I remember (I sooooo miss having a properly functioning brain)!

I also forgot to add my ‘dirty elbows’ to my Skin post so have updated that.  Does anyone else have ‘dirty elbows’?  I have no clue what this pigmentation is all about, or why it’s just on my elbows and no-where else!  The skin isn’t dry or hard or rough, just brown for absolutely no reason.  I’m sure it’s nothing at all to worry about (not that I do, worry I mean) but it does look like I can’t be bothered to bathe (which, if I’m honest, I can’t most of the time – it’s exhausting – but that’s not a fact I’d like my elbows to advertise to the entire globe!).

And speaking of skin, I have large chunks of it missing now that summer has (finally!) arrived here in the UK.  I made the fatal mistake of wearing flipflops (which resulted in the skin between my toes being rubbed clean away) and a pair of trainers without socks (which resulted in blisters the size of coins on both my little toes).  Having ‘delicate skin’ sounds feminine and romantic but in practice is a bloody nuisance.  Plus, you can’t wear orthotic insoles with summer shoes, so of course I went over on my ankle several times which is now swollen and a lovely shade of greeny purple.   Someone on the EDS forum posted a link about sandals which contain custom built-in orthotics.  They look just the job, so I’m making an appointment with my Podiatrist to see if I can get a copy of my prescription to have some summer shoes made.  Honestly, this being ill malarkey is soooo expensive and all at a time when you’re skint-a-roony because you’re unable to work as you’re ill :-/

The excitement for the week was receiving my DNA testing kit from America.  The hypermobile type of Ehlers-Danlos Syndrome is the only type for which a gene hasn’t been identified, so a group of patients on the Inspire EDS forum have decided to have their genes tested at their own expense and to pool the results to see if they can come up with any patterns.  I decided to take part (costs about £116 including shipping) as the test provides a mind-blowing array of information including your ancestry (ie African, European, Asian), how Neanderthal you are (probably 90%, the other 10% being ape 😉 ), how well you metabolize drugs (this will be very interesting considering I can’t take drugs of any description), which diseases you genetically carry (I’m looking specifically for Dupuytrens Contracture, Osteoporosis and Essential Tremor as my Mum has all three) and which diseases you are at risk of contracting.  I now have to wait about 2 months for the results (the suspense will kill me because I’m really not the most patient patient in the world!).