Getting to Grips with Asherman’s Syndrome

Getting to Grips with Asherman’s Syndrome

A month ago, I left hospital after surgery feeling quite positive despite having a punctured uterus (the hole-in-the-wall) and a stitched-up tummy.  Morphine does wonders to your mental health – I can see the benefits of being a junkie!
I thought I simply had to take the oestrogen tablets (progynoba) that I had been prescribed for six weeks, recover from surgery and then move to IVF early June… Bam!
BUT, what I learnt since leaving hospital is that:
  1. Asherman‘s Syndrome is not a straight-forward condition (in fact, it is quite a rare one so awareness about the condition is low — even among the medical profession)
  2. most women need the same operation several times to clear all the scarring; and
  3. a pregnancy with Asherman‘s can lead to all sorts of complications – including, increased risk of miscarriage and stillbirth because there isn’t enough space in the uterus for the baby to grow.  SCARY SHIT.

Yes, I admit, my main source of information has been the Internet, especially this awesome website maintained by the International Asherman’s Association:

I know that at least 10-15% of my uterus cavity is still covered in scars (or as they are referred to in the medical world:  intrauterine adhesions (IUA)) because the surgeon had to stop the removal of adhesions due to perforating my uterus.  And, more may have been formed since the last op…

You can only properly see adhesions through hysteroscopy – regular ultrasound doesn’t cut it. My follow-up appointment at the hospital in 2 weeks’ time is an ultrasound check-up and then the fertility clinic wants to go ahead with IVF if my lining has regenerated.

The fact that they may not check the scar situation properly pre-IVF troubles me. I don’t want to go ahead and try and get pregnant if the risks of complications are high and my condition isn’t cured.

After many sleepless nights since I became more informed (ignorance really is a bliss!), I took action this week.  My research concluded that there are two (!) real experts on Asherman‘s Syndrome in the UK, referred to as “A-listers” in the Asherman’s world.  I decided I wanted to speak to at least one of them to get a second opinion.  My GP referred me to one of the A-listers and, lo and behold, today I received an appointment for a consultation tomorrow!

Watch this space.






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