Tag Archives: adenomyosis

Peri-menopause penultimate phase

I have become a bit obsessed with my waning hormones so apologies if I’m boring you all rigid but to actively watch your body transition into the unknown is both scary and fascinating.  I think I’ve reached a milestone this month, which I thought I’d be doing cartwheels about, but it hasn’t turned out quite as expected and now rather than being joyful I am sodding terrified.

I’ve skipped my first period, which means it’s the beginning of the end and I am probably in the final twelve months of peri-menopause.  I thought I’d be jumping for joy as I’ve been wanting my horrendously painful endometriosis and adenomyosis filled periods to end since my teens but instead I am flamin’ miserable.  I started with the usual period pain, backache, painful boobs, insomnia and exhaustion on about day 22 of my cycle and after five days of symptoms was more than ready for my period to start so that they’d bugger off, but I am still waiting.   I am now on day 40 of my cycle with no sign of bleeding, but the burning, stinging period/pelvic pain is intense, my breasts are killing me and my back pain so bad I have barely slept for a week now.  WT-actual-Fuck?!!

I’ve read that it’s very common for women to experience period pain but have no bleed while they transition into Menopause, but most say that after a week or so the pain just disappears – sort of like having a phantom period.  But mine is not only not going anywhere it’s getting worse by the day 😦  Surely to God I don’t have to put up with this agony for a whole month until I go through another cycle, or even more terrifying the symptoms won’t stay around forever?!

I feel hugely cheated.  I have looked forward to skipping my first period and knowing that finally, finally my monthly torture is coming to an end, but no.  My body, traitor that it is, has once again made the situation worse not better.  I could weep with the injustice.  Have I not suffered enough?

The only good news is that emotionally I am fine, if understandably fed up.  No sign of PMS (not that I’ve ever suffered much with that anyway thankfully) and no migraines.  I so far also seem to have by-passed a symptom suffered by the vast majority of women in peri-menopause – hot flushes.  I had one back in 2012 sat in a cafe, during which I stripped down to my t-shirt even though it was the middle of January and snowing outside, but other than that nada.  I’ve had night sweats leading up my period for years, but nothing so drastic they’ve kep me awake at night or forced me to change the sheets or anything, for which I am grateful.  I do know, though, that the situation would have been vastly different if I were still eating a diet high in histamines.  I used to flush after every meal and am convinced that if my diet had remained the same hot flushes would have been the order of the day.  So I guess that’s a silver lining, though to be honest I would have preferred the hot flushes over the excruciating ramp up in pelvic and back pain any day of the week.

So I shall see what develops.  The only other time a woman’s body goes through this sort of monumental change is during pregnancy, but at least you kind’ve know what to expect with that.  There are a million books on the subject and each woman’s experience is broadly similar.  Not so with the Menopause where the most advice you get is “every woman is different” which is no sodding use whatsoever and you’re basically just left to white-knuckle it, doubly so if you already have other health problems.  I have absolutely no idea how all this is going to affect my M.E., MCAD or hEDS and even though I thought knew how it was going to pan out with my endo and adeno it turns out I was clueless.  I did find a few books on peri-menopause on Amazon, one of which was written by a man (a man!) which is like the blind talking about sight, while others were written by women who haven’t gone through the menopause themselves which is akin to a childless woman writing about giving birth.

It may be that I am not going to actually skip my period this month it is just monumentally late, in which case it needs to hurry the hell up and put me out of my misery.  I don’t know and it’s not like anyone else knows either.  Watch this space, or look away now, I wish I could!

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.


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.


Some days it’s all just too much

My day began at 7am, which is a lie-in for me as I’m usually awake at 6am.  I slept in because I’d tossed and turned all night, which I usually do if faced with something to do the following day.

I had breakfast, then started printing off information for my Anaesthetic/pre-op assessment appointment this afternoon.  I should probably have done it over the weekend, but to be honest I needed some time off from thinking about my health.  Or doing paperwork.  In fact, from doing much of anything because after the events of last week I’m exhausted.

It took an hour to sort through all my notes, medical and drug history, get it in order and print it all off.  As I was reading it I thought “you’re mental if you think they’re going to operate on you.  Every single drug you’ve tried in the last 15 years you’ve had anaphylaxis to, so the chance of a massive operation going well is a billion:1.  You must be crazy to even be contemplating it – you do know the risk is that you end up bedridden again for the next 10 years because of how it will affect your (very stable) M.E. don’t you?”  I felt weepy before the day had really begun.

At 9am while the dog walker was out with Bertie I got my food together.  I’d decided to eat dinner at lunchtime (at my Parents when I dropped Bert off) and take lunch with me to eat in the car this evening.  I’d cooked the day before, so my dinner was just to reheat at Mums.  I packed a sandwich, cold drink (it was 22C when I set off and the air con still isn’t fixed), flask of tea (it was going to be 12C and raining in Newcastle!) and some sweets for energy.

I got my food, Bertie’s food, paperwork, a pillow, my TENS machine, my iPod and my handbag ready in the hall to pack into the car.  I then put a load of washing in the washing machine and emptied my airing cupboard as I’m having the gas boiler serviced at the crack of dawn tomorrow.

I then rang the Garage as my car was booked in tomorrow afternoon to have the new compressor fitted but I’m having to take Bertie for his MRI scan instead so I needed to reschedule (which I could tell pissed the secretary off no end), then rang the groomer and booked Bert in for a clip this Thursday.

I then got myself dressed, braced and put my TENS pads on and at 10.30am bundled all my gear and the dog into the car.  I then realized someone had parked in my private driveway for the hundreth time to visit the Upholstery business nearby and was blocking me in, despite a 2ft NO PARKING sign.  I stuck my head round the door of the workshop and said “I need my car out please” to be met by a member who staff who literally barked at me “can’t you bloody wait a few minutes?!”.  At which case I barked back “I’m going to the hospital, so no I can’t.  Move the car!”.  I wanted to burst into tears then and there.

I drove the 7 miles to town, filled up with fuel and went to the Deli to collect my yeast free bread order.  I then went to Mums to drop off Bertie and found her upset as my Uncle had been taken into hospital last night with suspected Septicemia (she’s still grieving over suddenly and unexpectedly losing my other Uncle only 2 weeks ago).  I tried to eat something but it was hard getting food past the knot in my stomach.

I set off from Mums at 12.30pm, even though my appointment wasn’t til 3pm.  Afternoons are visiting time at hospitals and the car parks are always full to overflowing so I needed plenty of time to find a space.

I nearly had an accident 10 minutes into my journey, when I was in the middle lane of the motorway overtaking a man in a vintage car, who then simply tried to pull over into my lane with no warning.  I couldn’t go anywhere as there was a BMW zooming up in the 3rd lane doing about 90mph.  So I blared on my horn and the vintage car man swerved back into his own lane.  It didn’t do much for my already frazzled nerves and I wanted to cry even more.

The A69 between Carlisle and Newcastle is 50 miles of mostly single lane road, notorious for accidents as it’s the main link between the north West and the north East of England and always heaving with slow moving lorries who struggle to climb the mountain range.  However, today seemed more congested than usual and we crawled along at between 25 and 30mph, on a road which I usually cruise at 50-60mph, with me getting more and more frustrated and worried that I wouldn’t reach my long awaited appointment on time.  Turned out a man towing a caravan was tootling along at 25mph causing a 10 mile tailback of irate drivers.  We all wanted to fucking strangle him.

As expected, when I finally reached the Hospital the multi-story car park was full.  I’d never used the main car park which is further up the busy main road and had no clue where I was going.  I did get there, only to find it too was full.  And my appt time was getting closer and closer.  Eventually I saw a man jangling his keys and chatting on his mobile phone, so I wound down the window and said “excuse me, are you leaving?”  His reply: “I’m on the goddamn phone you rude bitch!” and he turned his back on me.  “Sorry” I shouted, “it’s just that I’m getting desperate”.  I was that tiny bit nearer to bursting into tears.

I continued to stalk cellphone man and after some faffing he left the car park and I nabbed his space.  After a pit stop at the loo I made it to the rabbit warren that is Main Outpatients on time, then sat for nearly 30 minutes twiddling my thumbs.  I was then sent for an ECG, had my bloods done, my BP taken and my weight recorded.  I then had to go through a very in depth questionnaire with the nurse who looked shell-shocked at all my medical conditions and the 2 page drug reaction sheet I gave her.

I was then sent back to Outpatients where I waited for another 30 minutes to see the Anaesthetist, who was lovely and greeted me with “this will be the shortest consultation in medical history because I’ve just spoken to the Gynaecologist who says you’re having the Mirena Coil and don’t need surgery”.  Am I?  News to me.  I didn’t even see the Gynaecologist when I was there last week.  I saw a bloody trainee who proceeded to tell me that if I could hold out the Menopause would cure my endo and adeno, and failing that a hysterectomy definitely would cure me.  Both of which is complete bollocks.  He needs to go and read the message boards because there are many, many women out there who’ve had total hysterectomies and gone through the menopause and who still have endo pain as it’s oestrogen driven and we continue to produce oestrogen even with no ovaries.

Anyhow, back to today.  I told the Anaesthetist that I wanted a hysterectomy because the Mirena would do nothing for my adhesions which are what feel to me like they cause the most pain, particularly on my right ovary and my bowel.  So bless her she said “well try the coil for 6 months as the Gynae suggests, but in the meantime I’ll contact Dr Seneviratne at St Marys and ask him about surgical and drug options, plus I’ll contact Rheumy regarding your EDS and surgery and your Immunologist about M.E. and surgery.  Oh, and I’ll hand your case over to my colleague who runs a surgical allergy Clinic and who is better equipped to be your Anaesthetist than I am.”

I left hospital at 4.50pm and hit rush hour traffic, which were I live consists of 2 tractors and a bike but is slightly more stressful in the middle of the north’s largest city.  I did make it onto the A69 before the tears started and I cried most of the way home, salty snot mingling with my egg buttie which I ate with one hand while steering with the other (hurrah for automatic cars and cruise control).  It’s now 7.15pm and I’ve just got home.

I’ve had enough now.  Enough with the explaining my diseases.  Enough with the medical appointments.  Enough with the planning every day with military precision.  Enough with explaining that, yes, I know the Mirena coil only emits a tiny amount of hormones but you wouldn’t say to someone with a peanut allergy “oh, it’s only a very tiny piece of peanut and shouldn’t affect you” would you?  There’s a reason I’ve not taken hormones for the past 20 years, not withstanding the fact the last time I tried them I was so depressed after only 3 weeks I literally could not get out of bed.

I can’t do anything about the pain of my EDS.  I can’t do anything about my faulty immune system or my faulty nervous system.  But I can have a hysterectomy and do something about my godawful pelvic pain which I’ve lived with since I was 11 years old.  OK, it might not cure it entirely but anything would be an improvement on living like this.

So, I now have to decide if I’m even going to try the Mirena coil and if I don’t if that will count against me.  Then in 6 months I have to do the whole gynae appt thing all over again.  I don’t know if I’ve got it in me.  I’m too tired.  And despondent.  And fed up of the whole being ill thing.  Some days it’s all just too much.