IVF false start number two and my latest diagnosis

May 20, 2018

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.

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3 Responses to “IVF false start number two and my latest diagnosis”

  1. jodiebodie said

    I’m sorry that you’re working life has come to an end for the time being but spending 4.5 hours commuting every day is not the best quality of life! I hope you can find something that fits in with your lifestyle better when you are ready and that the de-stressing does wonders for you.

    Our employment roles become so much a part of our identities and I imagine it was a reluctant decision to give up the job you enjoyed (and the remuneration too) but our working lives are not everything, just a fraction of who we are that we continue to bring along with us even when we move on to new things.

    Wishing you a smooth recovery, both physically and emotionally. I too have endometriosis with MCTD. I would not be surprised if they were found to be diffferent manifestations of the same immune issues.

    May you have time to reflect and regroup. I wish you all the best with whatever comes next for you. Imagine what you will be able to do with that time you regain by not commuting so far! Here’s cheers to ‘moving on’ and a supportive hug to say ‘hang in there’!

    Jodie

    • Thanks Jodie. You’re absolutely right about everything and I am taking the time to reflect on what I want out of a job. And I’m enjoying the rest!

      Hope you’re doing well. Xx

      • jodiebodie said

        I’ve had a remarkable run of feeling quite good for some time, thank you, and I am the strongest I’ve been in 10 years but in the last few years it has been hard to work out how many of my gradually worsening symptoms were due to autoimmune illness itself or side effects from the medications! I had been prescribed some medications before a confirmed diagnosis so I decided to wean off most of them to get back to some sort of baseline and start over. Keep it simple if possible.

        Unfortunately, the most disabling symptoms are returning and I feel stuck between a rock and a hard place. My GP has helped me work out which medication regime to follow when I’m ready but I am stuck between two evils – disease progression without meds vs. side effects and med toxicity. Which is worse? I wonder to myself, ‘is my experience of x symptom the disease or is it a lingering effect from the meds and will it subside if I stay off the meds for just a little bit longer?’ I have discovered that some of the symptoms I have experienced are not only known outcomes of the disease but also possible side effects of medication. Trying to guess the cause and judge what is happening in terms of disease activity is doing my head in and I am paralysed to make a decision about when to recommence meds – I so don’t want to be dependent on medication.

        So I am currently in the process of reviewing diaries, letters etc. to work out which symptoms were present before and after different meds to help my detective work. There is always something new to learn with such a complex set of conditions.

        Feel free to contact me if you ever want to chat or email. I tend not to share too much personal detail in public forums but am happy to share with you since we have MCTD & Endo in common. For so long I thought my undiagnosed MCTD symptoms were related to the endometriosis… both can affect any part of the body. Go figure…

        I hope you are having a relatively good day and are recovering well by the time you read this.

        All the best xx

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