Category Archives: Endometriosis Adenomyosis

Normal test results

I’m the healthiest sick person you’ll ever meet.  Despite having Spinal Stenosis, MCAD and EDS from birth, M.E., Histamine Intolerance, Endometriosis and Adenomyosis 98% of all my test results have come back “normal”, at least according to my Doctors.  It will not surprise you that my response to that is “knickers!”.

When I was 11 I was climbing in some outbuildings and fell from the first floor onto the bonnet of a car, after which I developed back pain.  For the next 5 years I went backwards and forwards to the hospital who could find no reason for my symptoms.  X-ray results were “normal” and eventually I was told I was “attention seeking” and needed to see a shrink.  I refused and demanded a second opinion from an Orthopaed at a decent hospital 90 miles away (I was bolshy even at 16 😉 ).  Within 48 hours of being admitted they discovered I had been born with rare congenital spinal stenosis and urgently needed a laminectomy.  The fall wasn’t the cause of my back issue but had just aggravated a pre-existing condition.

This was my first experience that Doctors aren’t Gods and sometimes get it wrong and over the coming years I was to discover that they get it wrong more often than any of us would like.

It’s only in the past 5 years or so that NHS patients in the UK have been given access to their test results.  Historically, GPs would take loads of blood, not even tell you what you were being tested for and the results were sent back to the GP who only ever rang you if something abnormal was discovered.  But a GP’s idea of “normal” results and my idea of “normal” results seem to differ.

As I’ve discussed recently here on my blog, at the tail end of last year I started having symptoms of anaemia so asked my GP to check my iron levels.  They came back 1 point above the very bottom rung of “normal” (normal range 17-160 according to my lab sheet, and my result was 18), so my GP considered that fine.  Only of course it wasn’t fine because I was having symptoms.  I took it upon myself to start some supplements and within a week the pallor, exhaustion and daily dizziness I’d had for months vanished.  But if hadn’t gone to the surgery to request a print-out of my results and seen that my levels were low my GP would have just said everything was “normal”, I wouldn’t have tried the supplements and would have continued to feel like death warmed up.

When I saw Dr Seneviratne for my histamine/creatinine test it was high but within the “normal” range (normal is 34-177 and mine was 140).  However I’d been on a low histamine diet for 4 months at that stage, which one would hope would lower my histamine load and therefore skew the result, plus was symptomatic (at the time of testing my bum was covered in hives).  So thankfully Dr S still diagnosed me with “probable” MCAD because my history fairly conclusively suggested it.  But not all Doctors think like that – they see “normal” test results and rely on those, even when all the evidence is pointing towards there being a problem.

I’ve had severe gynae pain since the day I started my periods and over the years have had various tests and scans all of which were “normal”.  Well, apart from the fact my first ovarian scan showed a 2cm cyst which I was told was cyclical (they know this how?!) and 12 years later my second ovarian scan showed a 5cm cyst.  Turns out I have polysystic ovaries and due to my endo some were blood filled and when they burst caused excruciating pain and adhesions :-/  My first pelvic MRI at my local hospital showed absolutely nothing untoward, yet an MRI at a specialist endo centre six months later showed extensive endometriosis which even I could see on the scan!  So it turned out that the excruciating pain I’d lived with for the better part of 40 years wasn’t “normal” after all and I needed an urgent hysterectomy.

Anyone with Hypermobile Ehlers-Danlos Syndrome will tell you how painful and disabling the condition can be, yet nothing shows up on tests.  Genes and skin are normal, as are scans and x-rays.  Before I suspected hEDS I was told by medical staff that I was just “sensitive to pain” which made me feel like a total loser – little did they know I lived with pain most days that would have a healthy person reaching for the Vicodin and I did it without so much as a murmur, so far from being sensitive to pain the opposite was, in fact, true.

Here’s the thing I wish Doctors took more on board – if a person is having symptoms there is a problem, even if test results look “normal”.  I wish they’d listen more to what we’re telling them, take a full history and trust that we know our bodies better than they do.  What is “normal” for a 6ft 4″, 16 stone, male, thirtysomething rugby player might not be “normal” for a 5Ft, 7stone, teenage girl.

Back pain at the age of 11 is not “normal”.  Gynae pain so severe you’re curled up in the foetal position every month is not “normal”.  Fainting is not “normal”.  Widespread pain is not “normal”.  Seizures are not “normal”.  Fatigue which puts you in bed by 4pm every day is not “normal”.  Collapsing after every meal is not “normal”.  Flushing is not “normal”.  Daily nausea is not “normal”.   I don’t care that all my tests indicated nothing was  wrong, because something clearly was and it wasn’t something trivial to cause that much havoc.

My cynicism towards the medical profession is now legendary – that’s what comes of being fobbed off or 40 years that all is well.  In the end, I had to guess what my diseases were and inform my Doctors, who then did the relevant tests which, surprise!, came back not normal in any way 😉  I trusted my instincts, even though when I was younger I didn’t have enough confidence to challenge my Doctors.  I know there are some people who are hyper-vigilant and obsessive and who think they have some dreaded disease from every little ache, pain and niggle (I’ve met some of them online!) but I know my personality and know that I’m not a drama queen or someone who focuses abnormally on my body (again, the opposite is true and I actually ignore symptoms when I really shouldn’t!).

These days I’ve gained a fair bit of knowledge about my body and I know what’s normal for me and what’s not.  If I’m not happy with a consultation I’ll research the best doctor to see and request a referral even if it’s hundreds of miles away (which is my legal right).  I request a copy of my test results and will push for treatment or further testing if I think it’s needed.  After all, I’m the one who has to live in my body and suffer my symptoms, not my Doctor.

 

Anaemia

I’ve been feeling really washed out the past couple of months and my get up and go has got up and gone.  Both ME and EDS cause “fatigue” but I’ve had both for so long that I know what that exhaustion feels like and my current waffy-ness feels different.  I’ve also been dizzy……a lot.  I do suffer from dizziness as part of my existing conditions, but only for the odd day now and then and it’s usually so severe I can’t get out of bed.  My current dizziness is milder but ever present and each time I turn my head the world tilts slightly on its axis.  Plus I’m not sleeping.  I’ve had insomnia for over 2 decades but again this feels different and I just have a niggle that “summat’s up”.

Of course I am peri-menopausal and fatigue, dizziness and insomnia are simply part of the bag for many women.  But then so is anaemia especially if your periods are heavy, and mine are definitely heavier than they used to be.  There are various types of anaemia, but in menstruating women iron deficiency anaemia is the most common so I made an appointment to see the nurse today to get my bloods checked.

I have just about every risk factor for anaemia going:

1.   Peri-menopause/Menopause

Any menstruating woman can be at risk from anaemia, particularly if she has heavy periods.

2.   Endometriosis

I’m not just bleeding from my uterus every month, I’m also bleeding into my pelvic cavity because I have endometriosis.

3. MCAS

Anaemia is the most common issue affecting red blood cells in MCAS patients.  See Lisa’s excellent post written on this issue over at Mastattack.org

4. Gastritis

Any type of inflammatory stomach or intestinal disorder can cause anaemia, eg. gastritis, ulcers, diverticulitis, crohn’s disease, colitis, coeliac disease, GERD (ie acid reflux).

5. Drugs used to treat GERD

PPIs, H2 blockers and antacids can all interfere with iron absorption and I have been swigging Gaviscon and Rennies recently like they’re going out of fashion on top of taking an H2 antihistamine.

4. Diet

I’ve been pesco-vegetarian for nearly 30 years.  Before getting Histamine Intolerance I was very careful to eat a wide range of high iron vegetarian foods but since getting HIT and having to eat low histamine I’ve had to remove many of these from my diet, eg. spinach, soya beans, kidney beans, dried fruit, cashew nuts.

Diet deserves special mention.  People with ME, EDS, HIT and/or mast cell diseases are often on restricted diets of one kind or another.  Here in the UK we hardly ever get to see a Dietician, so are left to try and work out our food issues alone.  We often don’t have the skills or knowledge to decide if we’re eating enough of the right foods to give us all the vitamins and minerals we need, so it’s really important to have our bloods checked once a year just to make sure we’re not deficient (I was shocked to learn today that I hadn’t had a full blood work up since 2014 despite all the various issues I’ve had in the past year or two!).

I won’t get my results back until early next week, so I’ll keep you posted.  For those of a religious disposition please pray I’m not anaemic and don’t need iron tablets.  My poop is the only thing in my entire digestive tract which is currently normal so the last thing I need is to not be able to go-potty for days on end! 😉

Weekly roundup

I won’t lie, this week has been physically tough.  For two days I literally couldn’t stand upright for the pain in my abdomen, which turned out to mostly be down to the fact I was ovulating (early).  Due to my endometriosis, ovulation has become almost as painful as menstruation so now instead of being tortured once a month, I’m tortured twice.  Yay.

The huge surge in hormones associated with ovulation and menstruation play havoc with both my MCAD and my EDS.  I already have a hiatus hernia which becomes even more slack at these times, allowing acid from my stomach back up into my esophagus totally unchecked.  Histamine and other mast cell mediators respond to the rise in hormones, particularly in my stomach, increasing acid production which, added to the slack sphincter, causes reflux hell.

Add to this a lack of sleep and the emotional impact of huge surges in hormones and it leads to weepiness, grumpiness, anger and generally feeling shite.  I swear if there is re-incarnation I am refusing to ever come back to this plane as a girl.

I had another good session with my counsellor on Tuesday.  She is helping me understand why  my Mum is using alcohol to push me away and knowing the reasons behind that does help me be less angry at her (some of the time!).  In fact, the last few sessions have been so enlightening and helpful I’m not sure I need to keep going for therapy – I’ll make a decision about that next week.

Wednesday night was a competition night and I played a blinder.  We are allowed to enter 3 photos per competition and mine got 3rd, 2nd and 1st place!  It doesn’t get much better than that.  I’ve also been working on another weird image I’m calling ‘At One With Nature’ which I’ve entered into the next competition.  It’s sooo much fun dressing up, although I did get some very strange looks off the Postman when I answered the door to him looking like Morticia Addams 😉  The £8 wig off Ebay also shed like a mangy dog and I’m still finding 2 foot long hairs all over the house:

My dog walker’s daughter was poorly for 2 days this week which meant she couldn’t walk Bertie.  Why do these things happen when a) my scooter was away being fixed and b) I was having such a horrendous week I could barely stand??!  I just had to grit my teeth and walk the furry child myself, which was no fun in the world.  My scooter came back on Thursday and is so far OK, but it’s been OK before only to conk out again – time will tell if it’s actually fixed or not.

Today I’m driving the 45 minutes through to my best mate’s house to spend the afternoon with her.  It’s tiring and makes for a long day especially when I’m feeling rubbish, but at the same time it’s really nice to get away from the house which I rarely do.  I have to take Bertie out first though, then drop him off at my parents’ house for the day, so I’d better get my lazy arse out of bed and get cracking!

 

 

Abdominal pain

I’m starting to get worried about my gut.  Actually, that’s a lie.  I’ve been worried for a while now.  For several months I’ve had chronic abdominal pain.  At first it came and went and, though it was unpleasant, it didn’t bother me too much.  I get all sorts of random symptoms that come and go and they eventually settle down.  Not this time.  The pain, I have to admit to myself, is getting worse.  It’s constant and for 3 months now it’s been waking me up from sleep.  Last night was awful and I am a wreck this morning.

I am in pain from the middle of my oesophagus to my backside.  My back is in spasm from my shoulder blades to my tailbone.  I feel permanently sick and, though I get hungry, I’m full quickly.  The only good news is that my poop is fine, still huge, normal colour, no signs of blood, no constipation or diarrhea and I go nearly every morning after breakfast.  It is, however, about the only thing in my entire digestive tract which appears normal.

I know my oesophagus and stomach are being eroded by acid but when I can’t take H2 antihistamines or PPIs treatment for my chronic GERD is almost impossible.  High dose Gaviscon does help but doesn’t eliminate the problem.

I have so much wrong with me that the abdominal pain could be thirty different things: my MCAD, inflammatory bowel disease such as diverticulitis or colitis, gallbladder issues (my Mum had hers removed in her forties after 10 years of indescribable stomach pain), nerve impingement, hernia in the bowel wall, stomach ulcer……the list is endless.  It could even be a back issue and it’s referred pain or it could be down to my endometriosis adhering to the bowel walls.  Trying to get to the root cause of the pain is going to be a bloody nightmare and treating it with my drug allergy history probably impossible.

Ehlers-Danlos can cause a whole range of gut issues.  MCAD obviously causes gut pain.  Many people with M.E. have gut problems, the reason for which can usually never be found and get put down to “IBS” (a non-diagnosis if ever there was one).  Endometriosis can also affect the stomach and bowel.  It could be all four or totally unrelated and something else entirely – how on earth is the doctor going to know what’s causing what?!

The pain isn’t worse when I eat.  In fact, it’s worse during the night and first thing in the morning when my stomach and bowel are fairly empty, work that one out!  It’s proper getting me down now, especially as it’s affecting my sleep 😦

Please can I not have any comments telling me to cut out dairy or gluten or do a FODMAP diet.  If only my health problems were that simplistic.

I think I’m going to risk taking some antihistamines and see if I can tolerate them.  I started reacting to both H1s and H2s last year so stopped them, but it may be that now I’ve had a break I can tolerate them again (I started reacting to Gaviscon in 2015 but am taking it again fine this year).  If antihistamines help at least I’d know it’s probably my MCAD that’s playing up (I am super itchy atm).  I’m also still trying to pluck up the courage to try a different brand of PPI for my acid but am such a chicken when it comes to trying new meds after having so many awful reactions.

I suppose in some ways I’ve been lucky.  I had no serious gut issues until I was 45 which, considering all my illnesses can cause stomach problems, is fairly miraculous.  I’d better make an appointment to see my GP (for which I may wait 6 to 8 weeks), who will refer me to Gastro at the hospital (for which I may wait 4 to 6 months).  So hopefully I might get to see a Consultant by October!

Weekly roundup

This weekend is the last of my staycation.  I’ve had a lovely 2 weeks resting (in between walking the dog, doing meals, the odd bit of laundry, the dishes and all the other stuff that can’t be ignored) and it’s been heavenly.  Simply heavenly.  Or it would have been if my body had cooperated.

My joints/muscles/ligaments are still very painful and I’m so stiff I can barely move in a morning.  Resting has helped but I think in order for it all to settle down fully I’d need a couple of months off which is never going to happen.  My period was due this week, and I started having period pains on Sunday.  Which got worse and worse until Wednesday evening when I felt like my entire torso was on fire.  The pain was indescribable and resulted in me blacking out at 3am while on the loo with diarrhea.  And my period hadn’t actually started at this stage!  I cannot live like this for another couple of years until Menopause – I think I’d lose my sanity.  So I’m going to have to give some painkillers a go.  I thought I’d ask my GP for a Mefanemic Acid prescription and see if I can tolerate it (paracetomol/tylenol is out, as is asprin and codeine based drugs).  My period has now ended but my entire digestive tract, bowel, hips and pelvis feel like they’ve been in a car crash.

Despite the pain and total lack of sleep I attended another funeral on Friday.  A lovely, kind man from my Camera Club who died very suddenly before Christmas.  I was chatting away to him on the Wednesday, arranging to visit him in the new year to pick his brains about using flash for portraits, he went out with his buddies on the Friday to a regular luncheon club and on the Saturday he was no longer with us.  Seize the day my friends, whatever the day holds.

I had to get an emergency plumber out this week after my patio flooded with water due to a blocked drain.  Luckily I have plumbing insurance, which seems like a waste of my precious cash until events like this happen, when it seems like the best idea I’ve ever had 😉

I had a robust response to my Food Skeptic post.  I fucking dread writing posts about food and if you’ve noticed do very few of them these days.  The reason being that people are very passionate about the subject and, I have to say it, I brace myself for the response.  Instead of reading what I actually write, some people read all sorts into the posts that aren’t there which, as a blogger, I’ve found happens when someone feels strongly about any particular subject.  I understand totally but as the writer it can be stressful.  All I can say is I’ve never bought into the “super foods” theory, or the supplements theory and I’m no more sick than most of my readers.  In fact, I have made a substantial recovery after being bedridden with very severe M.E. for nearly a decade and I didn’t do it using food or supplements while many of my very ill friends who follow all the currently popular dietary advice and spend the gross national product of a small nation on supplements are still very sick indeed.  I can only talk about my own thoughts and experience so that’s what I share with you all.

Y’know the friend who told me I looked like crap in a recent selfie?  Well I got another, un-asked for, email from her this week.  It was bizarre and stated that my photo portrayed a “friend who has endured so much pain and suffering though illness who is now in a dark place of illness having lost that special sparkle and smile and looking so much older than you do in reality”.    Am I in a “dark place of illness” because if I am no-one’s sent me the Memo?  I have an overly-full life, a beautiful home, live in one of the most amazing places on earth, friends, a hobby I love and live with a passion many healthy people fail to achieve.  Even my Counsellor is gobsmacked at how much I squeeze out of life despite my circumstances.  My friend, however, is one of these people who, because I am disabled, talks about me as that “poor woman” and tries to place me in the role of victim, which seriously gets my back up.  For reasons I won’t go into she seems to be depressed and pitying me seems to make her feel better about herself.  Either that, or in her own mind she wants to see me as depressed so that she has some company.  I have no idea why she’s felt the need, three times now, to tell me my picture makes me look “years older than I am” and miserable to boot.  She even said my photo had “made her cry”.  Seriously?!  I’m dressed up in a velvet cape for crying out loud.  It’s art.  I’m using it for my CPAGB distinction and the judges at the Royal Photographic Society don’t much like the types of smiley portrait pictures you see in shop windows.  Here’s the final picture – if I look years older than I am it would make me 60 and if I look this good when I’m 60 I’ll be well chuffed.  In fact, I’ve barely a wrinkle on my face and have skin, even at 50, that my younger friends would kill for.  I don’t give a rat’s ass whether she thinks I look like crap because I have enough self-esteem to know it’s not true.  What I take issue with is her continuing need to tell me I look like crap –  I still can’t work out why a friend would do that.

I shall end on a positive.  My cleaner came back to work this week after being off sick for 2½ months.  Hurrahhhhhhhh!!!!!!!!!  With my current level of health I simply can’t do the housework and it was lovely this week to finally be in a clean house and bed 🙂

Christmas Wishes

I suddenly feel like I’ve been run over by a ten tonne truck, who’s reversed and run over me again just to make sure I’m dead.  I knew it was coming, obviously, because no-one with M.E. can attempt the level of activity I have these past few weeks without consequences.  Living with the consequences though is rubbish.  Thankfully I know that, with rest, my symptoms will lessen which is something that, during the first 15 years of my illness, wouldn’t have happened and for that I am truly grateful.  I think that’s the biggest change for me M.E.-wise – that I can now overdo it and know that I will recover and it won’t take the next six months.

I do need to rest though and that includes my brain, so I’m taking a few weeks off from my blog over the holidays.  But before I go I’d like to take this opportunity to thank you all for faithfully reading all my sad, excited, frustrated, angry, joyful and I hope sometimes informative posts; for taking the time to comment when I know to do so often robs you of precious energy which could be used for other things; for your kind words when I was down or felt like giving up; and for sharing in my journey.  I hope I’ve helped you as much as you have all helped me, and I’m grateful from the bottom of my heart for your friendship and support.

I’d like to leave you with a little Christmas ditty (sung to the tune of Once in Royal David’s City) and my wish for better health for all of us in 2017.  See you in the New Year!

Once in snowy North West England,
Lived a lonely, country girl
Mast cells that were sorely rampant
histamine that made her hurl
Jak she was that poorly child
M-CAD was that illness vile.

Subluxations sent to try her
Joints all wandering out of place
Splints and braces plus her scooter
helped her join the human race
Jak she was that poorly childmistletoe
E.D.S that illness vile

Monthly torture from her cycle
makes her feel that she is cursed
Menopause that drives her crazy
She’s not sure yet which is worse
Jak she was that poorly child
Endo is an illness vile

Nervous system going bonkers
Pins & needles all the time
She would kill to just get tipsy
she’s allergic to the wine
Jak she was that poorly child
POTS doth make an illness vile

She is tired beyond all reason
Half her life is spent in bed
That Hugh Jackman is her Carer
fantasies just in her head
Jak she is that poorly child
M.E. is an illness vile.

Doctors told her she was crazy
symptoms were all in her head
She just hoped they’d catch her illness
or that they would drop down dead
Jak she was that poorly child
Chronic illness truly vile.

Tests which showed she’s really sickly
She had known this all along
Blew a raspberry at the doctors
who all said there’s nothing wrong
Jak she is that poorly child
Proving it though was a trial!

 

merry xmas

Weekly roundup

Even though my holiday finished last Friday I’ve actually had a more relaxing week this week than when I was supposed to be resting, even though not everything has gone to plan.

I thought my leaking loo would just be a washer, but sadly it’s turned out not to be the case.  So, having taken the cistern apart, I decided I couldn’t fix it and have had to claim on my insurance and they’re sending a plumber out on Tuesday morning.

Speaking of insurance, the Adjudicator from the Financial Ombudsman’s office who is dealing with my new PHI complaint rang me on Thursday.  He said he agrees totally that my insurers should not be reducing my money and he’s already contacted them to ask them to explain why they’ve done so.  He’s hopeful they will reply some time this week.  He’s such a nice chap, keeps me fully informed of what’s happening and is obviously on my side – such a huge difference to my last complaint in 2011 which was a total nightmare.  So I’m more hopeful the issue can be resolved quickly and my money re-instated (famous last words!).

I’m still plodding on with my ESA renewal forms.  I have 6 letters from consultants as my “supporting evidence” so if that’s not enough I give up.  I haven’t even started on the actual form yet though, as it’s taken all week to get the medical evidence together and write the bit about “how my illnesses affect me” which runs to 4 typed pages!

I had a bit of a crisis on Tuesday morning.  Bertie woke unable to put any weight on his front leg.  After a bit of deduction I decided he’d sprained/strained his front “knee”, so gave him some Calpol (at a dose recommended by the Vet, he can’t take anti-inflammatories like Metacam as they make him sick), strapped it up with a compression bandage and only gave him short walks for 2 days.  Thankfully it’s much improved and he’s no longer limping.


I’ve lost 4 followers after posting my Scarlet Woman piece.  I expected it, as women don’t like to hear that it’s the man’s fault when he strays.  Women like to blame the Other Woman even if that makes absolutely no sense.  It’s like having your house burgled and being blamed for leaving the door open.  You should be able to leave the sodding door and every window you possess open without some random stranger pinching your stuff.  Burglary is always the burglar’s fault.  Just like infidelity is always the married cheater’s fault, even if the person they strayed with came on to them.

My weekly roundup is a day early this week.  Today (Saturday) I was supposed to be at a wildlife photography workshop.  I can’t normally afford to go on these things, but someone dropped out and I was offered a half-price ticket.   But yesterday The Curse arrived and I started with a dreadful migraine and awful back pain.  I got hardly a wink of sleep last night and still had my migraine this morning although it’s thankfully fading now.  I’ve also had the worst hormone-related back pain I think I’ve ever experienced, with shooting burning nerve pain in my left hip which stabs me every minute or so.  I can’t sit, stand or lie without awful pain so have had to cancel.  Bloody typical.  They’re holding a 2nd workshop tomorrow and have held a place for me, which is really kind, but I have no idea how I’ll feel in the morning so will just have to play it by ear.

As I’ve mentioned in previous blog posts, I’ve tried doing some portrait pictures this year having never photographed people before and not possessing any proper studio lighting or equipment (I don’t even have a proper flash for my camera!). I’ll leave you with ‘Ol’ Blue Eyes’, which I’ve entered in a competition this week – won’t find out if it did any good for some time yet but will keep you posted.