I’ve always said, the part of my chronic illness I’m thankful for is the fact that while there is nearly always pain…it chops and changes regularly.

A sore shoulder, a painful hand, a bruise-like ache in my jaw…it’s there for a day or two and then it makes way for something else.

But the nature of actual chronic pain…is that it’s relentless and you can’t escape it.

For months I’ve had an ache in my abdomen on the right side. I’ve thought it was endometriosis, my inflamed fallopian tubes… before they were removed, perhaps ovarian cysts…or maybe one of the many fibroids that decorate my insides.

We still can’t pinpoint the culprit and the pain has increased making it so hard to function.

The pain is deep and heavy, pushing into my back and down my leg. The heat pack is on high rotation between the microwave and my tummy.

I’m choking down panadeine two tabs at a time with 30g of codeine. It makes me light headed, drowsy and lacking clarity. This makes it hard for me to think, to make decisions, to talk to clients and team mates. I catch myself making mistakes. I make an 82 year old spell her name for me three times because I can’t make sense of the letters.

I’m trying to think up arguments for a psych essay and read academic articles for evidence but my eyes feel so heavy.

But the alternative is unrelenting, undeniable, unreasonable, unbelievable pain that makes me move around constantly…annoying my husband as we try to sleep. It makes me cry to my manager two weeks in a row because it’s beaten my strength and resilience down. I don’t feel I can handle normal challenges because I’m fighting the pain…or the codeine fog constantly.

I desperately want to escape. Some nights…more than I should… a bottle of wine whisks me away from my pain. On the nights I face the pain sober, I find myself scared of it. I can’t see a way out. What if it never stops? How could I possibly live with this pain forever? How can I stop it? I start to panic.

When the pain killers kick in and I find sleep… this is my only true escape and I relish it.

I’ll keep trying to find the answer and the solution because there is no other option.. this painful existence is no option.

And my heatpack needs heating again…

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Stages of Flare

November 19, 2020

I’m having a flare this week. It’s been a bad one…and worse…it included symptoms I don’t usually experience. On Monday afternoon on my way home from work my neck felt achy, like my glands were up and it hurt to swallow. By after dinner that night I felt so heavy that I knew a flare was making its way toward me.

I set my alarm for 7am instead of 5.40am – accepting that I would not exercise in the morning, even though I still lay my gear out … just in case.

But by morning I could barely lift my head off the pillow, it was really painful to swallow, my legs felt like I’d run a marathon and I just wanted to keep sleeping. So I called in sick and proceeded to watch seven episodes of Sex and the City – back to back – in bed. Only getting up to get more water or for a toilet break.

In the afternoon I thought I might have turned a corner – but I thought it was strange as I’d had no chills or sweats yet. Around 6pm – these kicked in. While my temperature doesn’t really seem to change I’ll swing between a chill so deep I put on socks and trackies, a dressing gown and a doona on and still lie there teeth chattering. About half an hour passes and I start peeling off my layers, I put the fan on high and lie naked in a pool of sweat. I fade to sleep and then wake – who knows how long later – to the chill back with a vengeance.

So I take another day off, this time I make it out of bed and onto the lounge where I watch tacky Netflix movies and doze in and out of sleep. I crave Minties when I’m unwell and I finish off the packet my husband brought me home yesterday.

I take a bath with epsom salts, pretending they’ll help my aching muscles. And I cry a little bit, because worse than anything is the absolute malaise. I just feel so sick. I can’t see past it, I feel alone, I can’t do anything. I feel very, very sorry for myself.

This time round I have been having sensitivity to light which has led to headaches, which is unusual for my MCTD flares. I also managed to vomit…but I put that down to taking too strong a pain killer on an empty stomach…woops.

About 6pm on the second day, I think maybe I’m turning a corner and I’ll be ok for work the next day. But I still drag my heavy self to bed and know that only time will tell.

In the morning – I am a lot better. It still hurts to swallow, my thighs still hurt and the sunshine poking through is killing me but I’m a lot better than yesterday so I tell myself if I can get up and get to work…then I’m well enough to get up and get to work.

The problem is, in my job I’m meant to speak to people all day and I could barely string a sentence together with my mind so heavy with fog. So I lasted about an hour and a half…and then headed home.

But now..now I really think I’ve turned a corner. It doesn’t hurt to swallow, I’m a comfortable temperature and I’ve started noticing the mess around the house. I think ‘I’ll just pick these socks up, and empty the dishwasher…oh and give this table a wipe down, and maybe just fold this washing.’ This is when I enter the stage of recovery.

In the coming days I will feel euphoric. I will feel like I can take on anything and will want to exercise hard and take on the world. I look forward to that stage.

But for now, I’ve left the washing where it is, I’m about to pick up my book again and lie down on the lounge….because I have a few more hours at least until I’m in full recovery stage.

Rollercoaster

October 17, 2020

It’s no secret that infertility is a wild rollercoaster. These words are used so often I feel they lose their meaning. You have the rollercoaster of the actual treatment, the medication, the injections etc. You have the ups and downs of hope that comes with every cycle, the belief that this might be the one that creates our baby – and then the crash of disappointment when only one line shows on the pregnancy test.

But it’s more than that. I can not believe how much my thoughts, my opinions, my beliefs change from month to month. And I mean, real, true belief. In our last cycle of IVF – which was just an embryo transfer, I let myself believe, with every part of me, that this was the one. We’d waited long enough, I’d done enough work with lifestyle changes and acupuncture – this embryo was going to implant. This….was going to be our baby. And I was excited. More excited than I had been in a year.

And when it didn’t work – an experience that was just so familiar and all I have ever known – I switched into self-protective mode. I decided that this is it, I will not have a baby, I will not be a mum and I need a Plan B that excites me and gives me hope for a life without a family.

And so I applied to university – Bachelor of Social Work, Honours. It will be full time, four years and I will embark on a new career and new direction. I was so excited. My hubby was on board and it was the plan I needed to start thinking….actually…I don’t even want kids. I love our life. I love our relationship and our dogs. I love wine on the weekend, I love sleep, I love life not being dictated by small beings. I love watching what I want on the TV and my only responsibilities being the house and the dogs.

I don’t even want kids. Fuck em’.

Except, that in my heart, I do.

So D and I decided we’d get a second opinion. Our doctor had told us that most people would fall in three transfers and if not…definitely most in 5. There are always those who will keep going but essentially, it didn’t look good for us.

We could have stopped there but we really felt we needed one more doctor to tell us the same to believe it.

So we chose a doctor who had been spoken of so highly on local Facebook IVF pages. A woman whose empathy was outstanding, this was something we had lacked in our last doctor.

So we met with her and she was …beautiful. It felt comfortable and relatable and more importantly she raised some concerns over treatments and made recommendations for going forward.

At this stage I won’t go into detail as we’re in the thick of it but what I will say is she pushed me to go back to my rheumatologist and ask for a review of my MCTD meds.

Even though I have spoken to my rheumatologist about my meds before, I went back again and he, being an incredible person, got me in within 48 hours on a Zoom call (thankyou COVID) and we had an honest chat about what my options are. He said he’d taken to the Rheumatology department at St Vincent’s Hospital and no one had better recommendations than the prednisolone that I am already on.

 But that doesn’t stop my rheumy. He spent hours researching my situation, multiple failed implantations with MCTD and he found research from all around the world with medications that might make a difference. He sent these reports and a letter of recommendation to my new IVF doctor and they are going to work together to see what is best for me.

In my excitement I forwarded the information to my acupuncturist. A woman who has supported me in the last year more than I ever knew I needed, or was possible. I thought acupuncture was sticking needles in the right points in the body, I had no understanding of the emotional support, the non-judgemental advice and suggestions of someone who honestly only wants the best for me. Who wants me to take home a baby.

I was excited to feel so supported by my rheumy, my IVF doctor and my acupuncturist.

And she replied to me ‘Looks like you have your team’.

It looks like I do. A team of professionals who are not only good at what they do, but are wonderful people and I feel so, so lucky to have them in my corner….and in my life.

I don’t know what’s ahead. What’s next? I’ll strap into the rollercoaster and keep on riding.

I didn’t know if I’d write this post one day. Of course, I didn’t want to write this post, I didn’t want to be here, but now I am and I feel I should keep with tradition and keep you guys posted. It’s been four years since we started trying for a family and still, no pregnancies at all.

So, this time last year, I was a mess. We were in the thick of IVF, we’d done an egg collection and I think a couple of transfers. After our last transfer we then went on two holidays and I really hit rock bottom. I just, could not think what life would be without a family and I could not understand the point in life without kids.  It was at this moment I knew I had to dig myself out and try to find purpose in life without a baby.

So, I started writing, a lot, I started seeing a counsellor, I joined a local theatre group, I threw myself into Aqua Aerobics and we took a break from IVF.

The idea was just to take a few months off. When we decided to start again, I didn’t ovulate properly and they cancelled the cycle – but at the same time our beautiful dog Biscuit needed two very expensive surgeries on her legs and as our dogs are our babies – there was no option, we had to focus on her. But it meant no money left for anything else. And a difficult six months focused on Biscuit.

We decided once she was through it and we had saved enough money again – we went to try our 5th embryo transfer – but of course – COVID-19 hit and all fertility treatments were cancelled.

I suppose the biggest roller-coaster this last year has been that I could not see life without kids, to becoming ok and discovering who I am now with other loves and interests, to having enough strength to keep trying for a family but actually having so little hope that I could not ever imagine actually ever having a baby but not being ready to give up.

Then I decided to try acupuncture. And I am loving it, the holistic approach my acupuncturist takes, the consideration to my feelings and thoughts and the renewed hope it has provided me.

I’m still considering the future without kids, thinking about what my next career move will be, considering study and finding excitement in things that are not baby related.

While I still desperately want to be a mum and we haven’t given up in our actions – my thoughts and beliefs have moved on and I’m excited about my next stage without kids too.

It’s a weird place to be and I’m sure plenty of people will be dying to tell me not to give up and keep trying and it will happen but….who knows. And guess what? Some people don’t get babies and we need to be ok with that.

I want to see more representation of those women who wanted so badly…. And tried so relentlessly…. And worked so hard…. And gave everything…. And then had to discover a new life path as a childless woman in a society where this is not the norm.

The reality is that I’m still in limbo and totally lost.

Maybe by 5 years TTC I will no longer be TTC and will have a new path in life.

 

 

10 years sick.

October 19, 2019

In October 2009 I woke up one morning, sick. My shoulder ached, my fingers were swollen and the next day my other shoulder ached. What happened next was a rapid down-hill run where my body stopped working as it should and left me in constant – but ever-changing pain. A couple of months later I was diagnosed with Mixed Connective Tissue Disease (MCTD). I was 26 years old.

Now, 10 years later, I’m still sick. But that’s the nature of a chronic illness.

Upon reflection – wow – I have come a long way. So much of falling sick comes with uncertainty. I stopped knowing my body or understanding my limits. I had to learn what I could or couldn’t do anymore and I had to set myself new limits.

In the spirit of keeping this post positive – I want to highlight some things I thought I couldn’t do because of MCTD but then I went ahead and did them.

Exercise

One of the biggest heartbreaks of MCTD for me was having to stop playing basketball. With joint and muscle pain I just can’t jump, shoot, throw and sprint the way I could. Every now and then I try but it is just too much for my body to handle. For a long time I thought that meant I couldn’t do anything more than some light walking. One day my friend encouraged me to join her at the gym. We went on the treadmills together, getting faster and faster. With her support I realised that I could do that and maybe I could try other things in the gym.

Today, I regularly go to the gym, do weights, cardio, Pilates, Aqua aerobics and aqua cycling. Every now and then I push myself to try something new – like Body Attack or yoga, and I’m reminded of my limits but for every activity I can’t do, there are others I can.

One of my biggest thrills was finding that I can jump on a tennis court and hit a ball. Not well, but that’s not MCTD’s fault! I never thought I’d be able to play tennis but for some reason, my body allows that.

Overseas travel

Travel was such a big part of my early twenties after living in the UK for a couple of years. When I started getting MCTD symptoms I had actually just booked a flight to Ireland and was planning on moving there for a year. When I fell sick I had to cancel those plans as I just didn’t feel I could live on the other side of the world, with no support system. It took a lot for me to build the confidence up to travel again. My first trip was to New Zealand with my mum and it was a constant battle in my mind of whether my body could handle the walking or activities of each day.

But as years passed, I got a job in travel public relations and the opportunity to travel was on the table – and I desperately wanted it. My first trip was to Papua New Guinea – not exactly easing into a comfortable destination. I was going to remote villages with no medical system at all and hosting a group of journalists while I was at it!

Before I left, I had to get a range of vaccinations and I’m not sure which one it was but it caused me to have a MASSIVE flare that pushed me into fever, shakes and deep, deep aches. But once that passed I was on my way and the trip was a success. I followed that trip with others to PNG, Vanuatu, Malaysia, Japan, America and Europe. I’m always travelling with that extra baggage that is MCTD – but as long as I can still travel, I don’t care.

Be in a relationship

I was single when I fell sick. I had been single for six years already and getting MCTD felt like a massive hurdle to finding a partner. At what point did I let a date know that I was chronically ill? That I need to rest more than others and that it does limit the physical activities I can do? With some guys it was clear – they were ultra active and wanted to spend every date out doing things and I literally could not keep up. Others acted like it was fine but it was still in the back of my mind that they may not want to have to nurse a partner from time to time.

When my husband and I went on our first date – we were already friends and he had read my blog so he was aware of what I had gone through and what I do go through. He brought it up on the date and asked questions. It was a relief to know that he knew, it was not a dark secret I was going to have to reveal and he was fine from the word go.

Now that’s not to say that MCTD is not an annoying third wheel in our relationship and I know he must get sick of me letting him know that my fingers are really swollen today, or I can’t lift my arms up so can he please help me put my bra on, or just letting him know that I feel like absolute crap and hoping for a bit of sympathy. It must get annoying. But it’s been seven years we’ve been together and I know he took the ‘in sickness and in health’ part of our vows seriously. And for that, I’m thankful.

***

So 10 years. Here’s to another 10. Or you know…a cure would be nice too 😉

Three years.

June 30, 2019

I have so many words, tumbling around my head as I try to process that it’s been three years of trying for a baby. Three sometimes doesn’t sound like that much but when I think back to where I was three years ago, where friends were, what we were all doing, it feels like a lifetime of this overwhelming, overbearing, all-consuming nightmare.

When I think of the friends who are now having their second babies when we started trying before them, or friends who were single when we started trying who are now having children – those are the moments when you realise how much time has passed while we endure this.

I could delve into the last three years, the ins and outs, the fertility treatments, the diagnosis of endometriosis, fibroids, polyps, hypothyroidism, the surgeries, the IVF, the anxiety, the grief…oh my goodness…the grief but right now I need to step out from this and share something I have learned.

I’ve been thrown a huge life lesson during these three years and I think it’s an important one.

People can change their views dramatically.

How you feel about something, no matter how passionately, when circumstances change – sometimes you’re forced to change your view, to adapt. It is honestly the only way to survive when life throws you situations that you did not want or expect. You can drown in your sorrow – or drown your sorrows – and I have done both many times over recent years but then I am pulled out of the pit by my husband, our dogs, my dearest friends and loving family. But sometimes, I’m the only one who can pull myself out.

When we started trying for a baby – back in 2016 I spoke to my rheumatologist about it, I was so positive, so sure it would happen for us. He told me to try for six months, then get some tests done, maybe start some fertility treatment and if no luck after 12 months, start IVF. We really didn’t know how MCTD was going to impact my fertility. We still don’t know if it’s related.

I told him ‘oh, it’s not going to come to that! I’m not going to need IVF’. But I was wrong.

There was a time when IVF seemed so drastic, something that other people do but not me. And then slowly I adjusted my thinking around this and realised that yes, IVF is for me, for us and I thought it WILL be the answer. We will get our baby through IVF.

When my first IVF cycle got cancelled before even egg retrieval and so followed a year of surgeries and treatments I was shocked into the realisation that IVF is not a guarantee. It is not. We think that if we can’t get pregnant, we can do IVF and that will be that. If you’re too old, if there is male fertility issues, if you have problems like endo etc – IVF will do the trick.

You hear about the successes of IVF but I’ve never heard about the women in this day and age who don’t get to take their dream babies home. I just thought that with patience and perseverance (and money) in Australia in 2019 that you get your baby. Processing that this is not the case is shattering.

And so facing the fact that endometriosis and my age (almost 36) has led to less eggs and low quality had me pondering alternatives that previously I was vehemently opposed to.

I started thinking about adoption. I met with Barnadoes to learn what is involved and to try and find a different message because all we seem to hear in Australia is how impossible it is to adopt, how long the wait is and how few adoptions take place. I started adjust my mindset to what our family would look like with children that aren’t biologically ours. This was an idea I previously could not consider, it just seemed so far removed from our lives and the lives of anyone we know.

I started to get excited by the option and the fact that it would mean an end to this exhausting fertility treatment. But, I’m not the only person who gets to make this decision and my other half is not ready to give up on biological children.

Another concept that I was dead against was egg donation. To me, the idea that I would carry my husband’s baby made with someone else’s egg did not make me happy. I imagined watching this child grow and seeing parts of my husband’s genetics shining through but none of mine. I was also concerned about putting my body through the unknown impact of pregnancy (we still don’t know what MCTD will be like during my pregnancy) for a baby that is not even mine. It made me angry and jealous. I was so absolutely against this idea that we never really considered it. Then one night, over a glass of red with my close girlfriends, one of them said to me – you’d still be carrying the baby and your body and lifestyle would still have an impact on it and you’d bond with it (or something like that, we’d had a lot of red wine, it may not have been so articulate) – and I sat with that thought for about a week. Then, like a switch had been flicked, I thought – I could do a donor egg. I would be ok with that! It was a liberating realisation.

As hubby and I processed the fact that we may not have kids we started to figure out what that would look like for us. We started fantasising about the idea of moving overseas together (ignoring the logistical issues of our beautiful dogs and visa requirements) we daydreamed about Spain and Ireland, Fiji, New Zealand, the USA and even the idea of moving to the Outback or somewhere for an adventure in Australia where we can take the dogs. A spark was forming and for the first time in a long, long time, we saw life beyond children.

So, three years in and we have no idea what is ahead of us. We haven’t given up on IVF yet but we have a few options up our sleeves and we’re excited about the future. We have TWO holidays planned – coz who needs money right? And we have each other.

I don’t know if I’ll be writing a Four Years post a year from now but I’m ok with that. I’m adapting, opening my mind and accepting the things I cannot change. Well, I am today anyway.

Content. Happy. Grateful.

February 15, 2019

I know it’s been a really long time since I’ve written. 2018 was hard, really hard. My last post was following my second laparoscopy. In the following months I continued to have pains and heavy bleeding for much longer than the recovery time should have been. I was on Letrozole to help me ovulate but every cycle was just a mess so I contacted my fertility doctor who ordered a scan. This time it was a fibroid and a polyp and she referred to me to another doctor who said I needed ANOTHER surgery. Apparently this is totally separate to the endometriosis and the endo surgeon wouldn’t have gone into this area to deal with this.

While another surgery seemed over the top – three in one year – We knew we didn’t have a chance of having a baby if we didn’t get it seen to. So a couple of weeks before Christmas, I had another surgery and began another recovery period.

As we moved into 2019 I felt…great. Amazing. And it’s the 15 February and that feeling hasn’t left. My health is better than it’s been in a long time. I’m working much closer to home in a less stressful, very rewarding job, I’m exercising regularly and our little fur family gives Dane and I joy every day.

I’m in a good place. What will be will be but I know this year is going to be so much better than last.

People often ask me if I’m in pain all the time. I’m not sure how to answer that. I will take check of my body and think, actually yes, my swollen fingers are a bit sore, my jaw does feel bruised, my teeth are aching today – yes I have pain.

However it’s often not pain as you might imagine. It’s not agony, it’s not constant – for me pain usually changes or moves after a day or two and even if it is a moment of agony (my friends know the times when I involuntarily scream out from a jolt of pain somewhere in my body) but a couple of deep breaths and that pain is gone and I carry on as if nothing has happened.

What MCTD is, is annoying. I’m not sure if it’s the fact that we’re in the middle of winter but I wake up and my body really aches. You know the heavy feeling you get when you have the flu? The real flu, not a cold. When it’s hard to lift your head or your limbs? That’s really annoying. I sit up in bed and physically have to move my legs out of bed with my hands. To reach to a high cupboard I use my other hand to hold my arm up to grab what I need.

I want to make a cup of tea and my Raynaud’s Phenomenon is playing up so the fingers on one hand are white and numb and won’t do what I want while the other hand is stinging red and purple. Everything is too cold – especially the milk from the fridge and I can only hold it for a few seconds before putting it down and rubbing my hands together. It’s ANNOYING!

You make adjustments to the way you do things to work around the illness and this becomes normal for you but when you stop and think about it you realise just how strange it is. Ah #MCTDLife. Such fun.

“Where’s Doctor XX?”

“Think he’s gone to dinner.”

This is the first thing I remember hearing when I woke from my second laparoscopy for my newly diagnosed endometriosis. Such a simple conversation, but it sent me into a spin. If someone was going to dinner, I knew my surgery had been a lot longer than we’d expected. I knew it meant that they had to call in the bowel surgeon and that it was worse that we’d predicted.

In the blur of the anesthesia I realised that this could very well mean that I was going to have a colostomy bag. I considered looking down to see if I could see any evidence of one but part of me wanted to stay ignorant for a while. Then – within seconds, something clicked in my brain. I thought…

“Ok, if I’ve got a bag, how will I deal with this? How can I be ok with this?” These were not dramatic thoughts – this was me – seconds after awakening from surgery, looking for the tools and the strength to deal with another blow.

I think of this now, and I am amazed that, that is where my mind went immediately. A coping mechanism I’m sure but one I’m glad to have access to.

Seconds after this (and I’ll admit, my timing might be completely off) the searing pain of the surgery hit me and I forgot all about bags and whether the operation had been a success and all I could do is writhe and moan loudly in pain. I tried to breathe through it; I remember rubbing my right hand back and forth on the bed focusing on the repetitive movement to take my mind off the pain. I was near screaming. They asked me how bad it was on the scale of one to ten. Knowing I always keep 10 for the potential of pain in childbirth I told the nurse ‘Nine, nine…it’s a nine’.

I was given the first of many pain killers to come and when I was in some sort of control my bowel surgeon appeared at my side. He told me it was more extensive than they thought, they’d (my two surgeons) debated back and forth what to do and in the end they had decided for him to remove the endo on various sections of my large intestine and reconnect the pieces.

“Do I have a bag?” I asked.

“No, you don’t,” he replied.

I was taken to the hospital ward where I woke every 15 minutes in severe pain – pushing my pain relief button, hoping to get some sort of rest. The pain had now moved to my back and I couldn’t find comfort in my hospital bed.

The next morning my endometriosis doctor visited and explained the surgery had been four hours – long and hard and he was proud as punch to tell me, he got it all. It had been deep in the bowel, on my appendix – which would have led to acute appendicitis if it had been left, my ovaries, my uterus, my pancreas…I can’t remember where else.

But now my tubes, my ovaries and uterus are all clear. This is the news I wanted more than anything.

He managed to do this major surgery through key holes – I now sport six delightful holes in my abdomen but he tells me that most doctors attempting this would have cut me from top to bottom – so I’m thankful.

I spent five nights in hospital, looked after so well by the nurses. I was shocked by my inability to do the slightest actions like sitting independently, walking, showering and I told myself to be strong and get on with it – but the tears fell.

I told the nurses it wasn’t the pain, I was overwhelmed and humiliated. I wanted them to know the real me – the confident, independent, positive woman with a sense of humour. But in that moment I just needed them to take the weight of my body – and the weight of my world to make it a little easier to carry. And they did.

I’m now 10 days post operation. I’m back home and today is the first day I’ve felt semi-normal. I know because I want to write, I want to think of the future and plan, I want to do laundry. Until now I’ve laid in bed with my book, my Netflix and my dogs, with all my strength going to mending my body and not caring too much about the world outside or life ahead.

I am so lucky to have my husband, who is doing everything for us right now – on top of being the only bread winner, he is cooking, cleaning, exercising the dogs and massaging my legs and feet when I ask.

Hubby and I are excited. We have hope, we have a reason and not only might this lead to the family we’ve been dreaming of for years, but maybe it might just help my other pain and symptoms; my exhaustion, my constant inflammation. I know I have MCTD and that’s unlikely to go away – but maybe, just maybe life will look a little brighter here on out.

Heading back to bed now – that Netflix won’t watch itself.

 

I’m sitting gingerly while I type this, trying not to move too much, conscious of the two small bandaged spots on my stomach from Friday’s key hole surgery. Through those little key holes, my doctor discovered Stage 4 Endometriosis.

I’ve just sat here after writing that, not sure where to go from here. So much has happened since I last wrote.
1) The thyroid medication to help my hypothyroidism worked and we got the green light to do IVF
2) I started the Synarel nasal spray and then Gonal F injections – which really were not that bad at all
3) I went in for my first scan to check the follicles were growing and looking good. I told myself to have no expectations. If we were super lucky we might be ready to do egg pick up, or they might not be quite ready and we might have to do a few more days of shots or this cycle might get cancelled
4) I had lots of follicles – I couldn’t believe it! But then I remembered I’d been told I have polycystic ovaries so that should not have been a surprise. The follicles were not growing fast enough and weren’t big enough – and they spotted endometrial polyps which needed to be removed as they can affect implantation
5) My cycle was cancelled
6) I drank a bottle of wine
7) I saw my fertility doctor and she said I needed a hysteroscopy to remove the polyps and we decided together while I was under the general anesthetic that I would get a laparoscopy to check for and hopefully treat any endometriosis if I had it.

Only in the last couple of months have I had some period pain but my cycles have been normal forever so I didn’t really expect to have endo, even though friends had told me that you can have bad endo (stage 4) and not have any symptoms – or have stage 1 and have agonising pain. A laparoscopy is the ONLY way to discover if you have endometriosis and I wasn’t keen to randomly have surgery just in case – but now I was ‘going under’ anyway – I thought let’s do it! And a dilatation and curettage (D&C) (an operation to scrape away the womb lining) and hell – another flush of the tubes, that I’d already had, (very, very painfully about a year ago) and my tubes had been clear.

This time however, my left tube is blocked and I have endo on my bladder, bowel and my ovaries are stuck to my uterus – or something. I was pretty out of it when it was explained to me.

Usually this is a day surgery but because I’m steroid dependent and have MCTD…as well as a mild cold, I had to stay over night for monitoring.

Oh – I forgot to mention – before we discovered that I needed this surgery – I’d quit my job. My job that has been a key part of my personality for the last seven years. I’d decided to stop commuting the 4.5 hour round trip to Sydney and wanted to de-stress as much as possible. So I finished up work earlier than expected and had this surgery.

The endo was too bad to be dealt with by my doctor – so now I wait to get in to see an endo specialist in Sydney for another surgery to remove it.

I’ve been told endometriosis is very common for people with MCTD – in some ways it’s refreshing to have something so common. That’s weird I know.

So – I have no idea what the path ahead looks like now. I’m kind of excited by that and I am enjoying taking the time to rest and recover and ponder my future. Not ponder too long- we still need money – but ponder none the less. A baby feels further away than ever. I don’t think it will happen this year. But I’m not giving up hope yet. I just have to keep getting up.

That’s what it feels like. I feel like I keep getting punched and I fall over. And for a moment I lie on the mat and cry and think – ‘I can’t get up’ but then I draw strength from somewhere and I stand up again – swing a few punches myself in a flurry of anger, frustration and hope and wait to be taken down again.

This path is so long and you can’t ever have expectations. Ever. So I’m strapping on my gloves, and as soon as this pain in my stomach eases – I’ll start swinging again.