My body is broken.

It’s interesting to visit both a public ob-gyn and then go visit a private one and then draw your conclusions about the health system from there.

I saw a new, private Gyn on Monday.

Honestly, it’s been a while since I walked out of an appointment that was for me, feeling like I had a plan and that I’d been listened to.

To recap, my last appointment in the public system was a bit of a shambles. My periods are very irregular, insanely heavy and very painful, I’ve been trying to get someone to take my claims of suspected endometriosis seriously, and fighting the system every step of the way.

So I went private, just to see if paying for the appointment would help with the whole listening thing.

And oooooh boy did it.

I told him my tales of woe, we talked about EDS a bit – but he knew enough about it that it was a conversation about my specific issues, rather than an educational speech on my part and then we got to the question and answers.

Both my children were conceived within a month of coming off the pill. I’ve never managed a pregnancy on my own – even my brief foray into possible blighted ovum territory had had some help from the pill. I have acne and body hair, lots of cramping etc etc etc.

He thinks it’s very likely that I have Polycystic Ovary Syndrome. We’ll be doing some investigations to see if there is underlying Endometriosis as well, which is likely and he also thinks there is a good chance I have something called Adenomyosis, which is practically undiagnosable at 21, because our medical imaging systems aren’t sensitive enough to detect it in early stages.

Which hey! I’ve always done health problems with style.

Yes?

Heh.

He was lovely. I’ve spent so long battling the system to be taken seriously (7 years for an Ehlers Danlos diagnosis anyone?) that I had really forgotten that when doctors are good, they’re very very good.

So, my uterus. It doesn’t work so well.

I haven’t really talked about it here because SOMEONE is completely against the idea, but Nathan and I had been trying quietly to get pregnant. We had been trying since Isaac was about 5 months old and for anyone not counting, he’s 21.5 months old now.

Almost 17 months.

And nothing.

However, when I told the public system that I’d been having trouble conceiving, they raised their eyebrows at me, looked at my age and the fact that I have 2 children and told me that there was no way, no how that I had fertility issues.

When um, yeah, it’s sort of looking like I probably have some fertility issues.

We’ve since stopped actively trying to get pregnant, Amy’s ASD issues and Isaac’s regression meant that we didn’t really have time to add another baby to the mix. But not actively trying and taking steps to avoid pregnancy are two different things. I still can’t take birth control and a latex allergy puts paid to condoms, so we’ve just been plodding along, waiting to see what happens.

Which incidentally, appears to be nothing.

It’s not surprising really, is it?

So. Bloods have been taken to check for PCOS and I’ll have an ultrasound at my next appointment to check my ovaries (which at last ultrasound, sometime before I conceived Isaac, my ovaries were irregularly shaped and the sonographer asked if I’d been doing IVF, because they were much larger than they should have been) and various other things.

Likely a laproscopy will be scheduled for sometime too, to have a look inside my uterus and see how it looks (I’m putting bets on black, gloomy and with little to no chance of sunshine) and then we’ll move on from there.

And in the meantime, I’ll just try not to panic about how much this is all costing me.

The private doctors might be good, but sheesh, they’re expensive too!

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There are things you don’t want to hear when you go to the doctor.

Like – You have the back of a 60 year old. When Nathan is only 28.

His back is bad. Really bad.

There are arthritic changes, a bulging disc, some compressed discs, bone spurs, narrowing of the nerve canals and degenerative issues.

Never gonna get better kind of bad.

Sure, loads of physio should help in the short term, but as far as I remember, nothing can be done for bones that are arthritic, or bones that are breaking down.

***

I’ve been seeing a Gyno for my insane periods and heavy bleeding/cramps like labour pains. That’s the backstory.

I went to see them yesterday, to follow up on how the trial of a contraceptive pill went.

[paraphrasing, as best I can, because somehow, telling you without the conversation added is too hard]

‘So, how did the pill go?’

‘HA! Badly. Really badly. I came off it early because it was bad.’

‘Bad how?’

‘Mood swings, depression, increased dislocations, etc etc. Bad.’

‘Well, in situations like yours, we really like to try the contraceptive pill.’

‘Yes, but the pill doesn’t agree with me.’

‘I can see. And you seem very against trying it again.’

‘Yes.’

‘So, we’d like to try the Mirena.’

‘No.’

‘Huh? No?’

‘I have anecdotal evidence to tell me that the mirena would be really bad for me’ [he tries to cut in] ‘and YES, I KNOW that the progesterone supposedly doesn’t leave your uterus, but really, my body is so sensitive to progesterone that I don’t want to trial the mirena.’

[he looks very spluttery]

‘We would like to try the mirena. If you don’t want the mirena, then we’re looking at things like gonadatropins and they’ll make you gain lots of facial hair and will deepen your voice and -‘

‘Well I don’t want to trial those either.’

‘If you’d try the Mirena, we wouldn’t have to look at gonadatropins.’

‘I don’t want the Mirena.’

‘Gonadatropins will make you gain a lot of weight… wait, I’m going to consult with my boss.

[A few minutes later, his boss- the doctor I saw last time enters.]

Hi Veronica, so you trialled the pill?’

‘Yes. And it was awful. I stopped it after 3 weeks because I couldn’t cope anymore.’

‘What happened?’

‘My joints fell apart, it felt like I was walking on a wobble board instead of a pelvis, I was angry and sad and it was horrible. So I stopped.’

‘Good, that’s what we discussed. So really, our next option is the Mirena.’

‘I don’t want the Mirena.’

‘It’s really the best option.’

‘I don’t believe it’s the best option for ME. I think it will make my joints worse and YES I KNOW the progesterone won’t leave my uterus, yada yada, I’m not willing to put a coil into my uterus to just see.’

‘We’re really running out of options here, the Mirena…’

‘No. I am opposed to IUD’s on ethical grounds too and really, I don’t think poking my internal organs with metal and making them angry is going to make me feel better on the whole.’

‘Ethical grounds?’

‘Yes. I don’t like how they work.’

‘Do you KNOW how they work?’

‘I know a plain IUD doesn’t prevent ovulation or conception, it just prevents implantation. I know the Mirena with it’s progesterone generally prevents ovulation, and also that it prevents implantation in the event that conception occurs. I don’t want the Mirena, I don’t want something I can’t stop using myself if I get bad. I can’t afford to wait weeks until I can get in here to be seen and fixed and HONESTLY, I’ve been on the wrong side of side effects and statistics for so long, I’m not prepared to mess around with things.’

‘Right. Well then.’

‘Can we try something to help with the cramps and pain instead of trying the mirena? ‘

At this point, I feel like I’ve been fighting the doctors to get ANY sort of health care that doesn’t involve inserting a foreign body into my uterus and leaving it there. Not to mention the absolute shock on their faces that I wouldn’t accept the Mirena as ‘the best possible thing’ [all hail the fucking copper coil] and wouldn’t be badgered into it. Not even with the ‘you’re gonna grow facial hair and get really fat’ scare tactics that the original doctor was using. I mean, fuck.

Eventually, the doctors agree on a course of action, medication wise and send me away with a script.

45 minutes later, I get to read all about the reasons I should not take a drug to help my blood clot.

Like, don’t take the drug if anyone in your immediate family has had a blood clot. Both Mum and Nan have had blood clots.

Don’t take the drug if you have bruising, especially bruising without trauma. Hello fucking EHLERS DANLOS.

Don’t take the drug if you have irregular periods. Um yeah, that’s part of why I’m seeing a Gyno. I’m 21, I’ve had periods since I was 12 and I’ve had 2 kids, my periods should be fucking regular. They aren’t.

I’m just so tired of having to fight the doctors for things that might help. Tired of them not asking questions they should before they prescribe something. Tired of being treated like a disobedient child, for not falling into line and letting them do whatever ‘they think best’.

Tired of feeling like these bandaid fixes don’t do anything towards working out why my body isn’t doing regular periods, why I bleed for 10-12 days each period, why the periods feel like labour pains, and why I’m having hot flushes.

Tired.

I’m booking an appointment with my regular GP to discuss the new tablets before I even think about taking them. Somehow, knowing how my body works and which side of the stats I fall on, I’m a little concerned about taking something to promote blood clotting.

On the upside, there was a Med Student there during the whole appointment and I got ages to talk to her about Ehlers Danlos while the doctors were consulting in the other room. She was lovely and interested to know how EDS presents in normal cases.

So good deed done. Even if I still want to bang my head against the wall.

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AKA Too much information, so uh, walk away now if you’re one of my male readers.

****

Today is day #5 of my period and I’ve bled through 3 pairs of underwear already today. Despite using tampons sized the equivalent of a small nation.

Last night I bled through another 3 pairs of underwear and 2 pairs of pajama bottoms. I was still awake every hour to go to the toilet. Yesterday I bled through a tampon, a full sized maternity pad AND 3 panty liners I’d put on underneath the maternity pad just in case. That was within an hour.

I’d just like to say a giant fuck you to my uterus. Not only is it trying to take over my body with the stabby pain, but it wants to leave it’s mark on everything. At this point I’m scared to cough, just in case I drown.

I’m thinking I need to rename it the Pit of Despair.

Apparently, when you’ve not had a period for oh… 9 months or something, when it happens, it’s like the flood gates open and away goes everything you thought you knew about your body. Hell, this bleeding is heavier than the bleeding I had after pushing a decently sized baby out of my vagina. Only without the ‘grazing’ (I refuse to acknowledge that it’s grazing. Cheese gratering was what it felt like).

We won’t even talk about what happens when I feed Isaac and my uterus uses it as an excuse to clamp down and leave me curled up in a tiny little puddle of pain.

Stupid uterus.

We’re also not talking about my EDS while I’m bleeding. Needless to say I feel sort of like a rag doll. A shaken rag doll.

On the upside, I now have an excuse to buy new underwear. I’ve thrown out nearly a dozen pairs so far.

Heh.

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Physio

by Veronica on December 10, 2008

in Ehlers Danlos Syndrome, My body is broken., Pregnant. Finally.

Right, so Monday I had an appointment first with my midwife and then later that afternoon, with a physiotherapist specialising in pregnancy.

The baby is fine, still measuring quite small, but the midwife is confident that he is healthy, just a little below average. Honestly, as the person who is intending on pushing this baby out through my vagina, smaller than average suits me fine. Amy was ‘smaller than average’ and yet she was a completely healthy weight. I have been told not to expect a baby any bigger than Amy and really, I can deal with that. Healthy is all I care about.

Plus, I have enough clothes in the teeny sizes to not really want a huge baby.

The physio was … interesting. It was meant to be a class, only the other girl booked didn’t show up.

According to the physio, all my pelvic and hip pain stems from the fact that the right side of my pelvis has twisted anterior, while the left side of my pelvis is normal. She realigned my pelvis and then gave me a sex-ay pelvic brace to wear to keep everything in position.

So.

We talked a little about my CFS and the condition of my muscles and joints which are in her words ‘the worst muscles and joints I have ever felt’. Apparently all my joints and the muscles/ligaments holding them together are very weak and not in great condition.

Even better? She doesn’t think that any of this is related to my pregnancy at all, she feels that it is all related to my “CFS” and has been aggravated by my pregnancy.

My CFS was never ‘formally’ diagnosed. It was what my GP told me I had after 2 years of tests and bloods showed nothing conclusive. It was what everything boiled down to when I was still sick and nothing could be found.

I got put in the ‘too hard’ basket.

Chronic Fatigue Syndrome though, generally has disappeared between 2-5 years after the onset. This February I will have been sick for 7 years without any change.

A while ago when Mum blogged about everything, Bendy Girl emailed Mum to ask if I had ever been tested for Ehlers Danlos Syndrome [I hadn’t] because my symptoms sounded very similar to EDS. We never thought that much about it because my joint pain and other issues were always talked about as secondary to my fatigue and nausea.

However, with the Physio having said what she did, it brought EDS back into something that may be a possibility.

I went and did some research into the symptoms of EDS and wouldn’t you believe it, I agree with just about every symptom.

  • skin that bruises or tears easily? Check [I permananently look like Nathan is beating me in my sleep]
  • wounds take a long time to heal? Check – [We won’t talk about the fact that it took me 12 months to heal from the episiotomy I got when Amy was born or that I have to take lots of Vitamin C in order to get anything to heal properly at all]
  • stretchy rubber band like skin? Check [You should see the skin on the back of my hands and elbows stretch. I just thought I was weird!]
  • loose unstable joints causing frequent dislocations [My knees both have dislocated, my left knee spends all it’s time threatening to and my elbows always want to pop out as well]
  • joint problems and pain [Aleve anti-inflammatories used to be my friend, until I got pregnant and couldn’t take them any more.]
  • double jointedness [my wrists, ankles, fingers, shoulders and hips all bend in ways other peoples don’t]

I can do this with my wrist

And this is my foot when I sit on the floor with my legs extended and foot relaxed.

Yes, I curled my toes up, it’s cold here today and I had to take my socks off to photograph. Heh.

I can also do this, but I can’t photograph while I do it, so I stole this photo from Bendy’s site.

At this stage, I’m still speculating and worrying, but coupled with everything else, it seems like it could be a possibility, especially as almost every photo I have seen of EDS causes me to say ‘but I can do that too’.

So, I’m off to my GP Friday to see what he has to say and to get a referral to a specialist who knows about these kind of disorders.

And frankly? The whole thing scares me.

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I Don’t Look Sick

by Veronica on September 22, 2008

in My body is broken., Pregnant. Finally.

So, as I was awake last night vomiting again, I came to a conclusion.

I don’t do pregnancy well. Sure the payoff at the end is OH so worth it (bring on my baby!) but the journey? Not so fun.

And I blame a good portion of my pregnancy woes, not on pregnancy, but on my CFS and how it relates to my pregnancy.

I found out the other day that I’m not immune to Rubella (German Measles. Very dangerous for the baby if I catch it during pregnancy). This set alarm bells ringing in my head, because at last count I had been immunised for rubella 3 times. Once as a toddler, once when I was 12 and then for a final time at 16 – less than 4 years ago.

I knew my immune system was pretty bad, but I hadn’t realised that it was actually non-existent. Makes me wonder that there is something that all the blood tests that have been run (admittedly, prior to being pregnant) have missed.

Surely a disappearing immunity to a disease I was immunised against should raise questions markers for my doctor?

But the thing is, I don’t look sick. I might look tired sometimes, but generally, unless you know me quite well, I don’t look sick. I don’t talk about it outside of immediate family (Mum, Nan and Nathan) much.

When I was barely 13, my hip started to hurt. I couldn’t walk and I felt a little off. Tired and headachey and sick. Xrays showed nothing, blood tests showed nothing conclusive and yet, I was still sick. I couldn’t walk (6 weeks on crutches) and I couldn’t go to school.

My headaches continued, as did the tiredness, even after my hip was better enough to walk on. Funny though, after my hip got better, it was a steady stream of other joints/muscles putting up complaints.

I was so sick and exhausted, that I couldn’t brush my own hair. I needed help getting out of bed and I had NO hope of washing my own hair. I just couldn’t keep my arms above my head long enough to get anything done.

I was nauseous alot of the time and couldn’t eat much without wanting to vomit. I lived on pasta and salad for months. Doctors told Mum that I was ‘faking it’ and ‘anorexic’ because they couldn’t find anything else wrong. God knows I wasn’t either of those things.

It was the most frustrating 2 years of my life, trying to get a diagnosis and treatment.

After nothing was found in my bloods (except one slightly raised infection counter that is STILL raised, but not high enough for them to consider) and nothing was found on a CT, they diagnosed me with CFS, told me to exercise lightly and regularly, watch my diet and go home and cope.

That was almost 7 years ago.

I have been at home, coping, with no better diagnosis than CFS, for 7 years.

I still have days where I can’t eat. I still have the muscle aches and the joint pain and the overwhelming tiredness. Most of the time I can ignore it, but pregnancy aggravates all my symptoms terribly.

It’s silly, little things like stirring soup? Make my arms ache and I have to sit down. I can’t chop vegetables without resting. I can’t stand for long periods of time and I walk a very fine line between eating enough so that I don’t feel sick due to an empty stomach and not eating so much that my body revolts and I lose it all again. I don’t heal very fast or very well.

It’s hard, not that I am sick, because hell, I have been dealing with it for *this* long, I know that I am not going to lose my ability to cope, but because to other people, if I don’t look sick, it isn’t really happening.

That is the problem with auto-immune diseases (yes, CFS is considered an auto-immune disease. It is also only supposed to last 2-5 years before you recover), you don’t look sick. It’s even harder because even if you are visibly sick, it is an invisible illness.

The medical profession is very good at fixing obvious problems. A chest infection; an earache; a broken leg; but if your disease is hidden, you get thrown in the ‘too hard’ basket and left to cope.

The medical roundabout of trying to get a diagnosis is dizzying and frustrating, because of not looking sick.

To other people, I don’t look sick. Hell, sometimes I have a hard time convincing Nathan that I am having a bad day. My headaches don’t go away and something is generally aching at any given moment. But I don’t look sick.

And sometimes, I don’t know whether that is a curse or a blessing.

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