In February 2013 I spend a very upsetting morning Googling Asherman’s Syndrome on my phone in a hotel room in Yorkshire. It’s not something that I would recommend anyone do to themselves, ever. Yorkshire and hotels are fine, just stay away from Dr Google!
I had been referred back to UCLH for investigations due to my periods becoming very short and light, and I was getting a bit worried that this would lead to implantation problems, and infertility. I had had 3 EPCS and one hysteroscopy, so I wanted to be sure that no damage had been done.
I had been scanned on the Friday and this had revealed that I had an abnormally thin uterine lining (2.2mm, should have been 7mm). Everyone was very reassuring, and I felt that I was in good hands. A further scan had been arranged the following month.
Then I went up on the train to visit relatives for the weekend and stayed in overnight with my sister in a travel lodge. The following morning, I woke up very early and, not wanting to disturb my sister, I started checking stuff out on my phone; what was normal after gyne surgery; how long does it normally take to recover; complications after ERPCs; Asherman’s Syndrome…
Asherman’s Syndrome is a condition caused by gyne surgery and subsequent infection in which scar tissue adhesions grow and fill or block the uterine cavity by basically sticking the sides together. Symptoms include light or absent periods. Worse, one article suggested that the ‘base layer’ could be damaged and the uterine lining would lose the ability to grow. Permanently.
You can imagine that I had self diagnosed myself as incurably infertile by this stage and was beside myself with worry and anxiety.
After having a bit of a word with myself (and a text to tell me that I had used up all of my data allowance on my phone), and a bit of comfort from my sister, I tried to put it out of my mind.
I went back for a follow up scan at UCLH a couple of weeks later (inconclusive) and was booked for another one a couple of weeks later for further comparison. I felt I was in good hands, medically speaking, but I was fast losing hope of being able to conceive.
Then I got pregnant for the third time, and everyone breathed a sign of relief and forgot about the threat of the dreaded Asherman’s Syndrome.
Sadly, baby three was not for this world from the outset, as we would later discover (Turner’s Syndrome; another story for another day). After my referral to St Mary’s, I was scanned and was, again, told that my uterine lining was ‘abnormally thin’. There was also ‘something’ (possibly scar tissue) in there that would need further investigation. Another hysteroscopy was booked for three weeks later. I had gone to that appointment on my own for some reason (there were too many of them, I think my husband was on a course), and I had expected it to be routine, but when they told my that I needed more surgery, I burst into tears. I don’t know what I was expecting, but it wasn’t that. The dreaded Asherman’s was back on the table. The nurses assured me that it was a) only a possibility, and b) treatable, but it wasn’t a diagnosis I wanted to hear.
As it turned out, it wasn’t Asherman’s at all, but a birth defect in the form of a heart shaped uterus. Professor Lesley Regan removed the dividing septum in a straight forward procedure, I was fitted with two coils and given a course of HRT for a month, and I am now (as far as I know) as good as new, uterus wise.
It’s by no means the end of my journey, but it was nothing like as scary as Dr Google would have had me believe. I love information, and do still do research online. But, a lesson has been learned about letting the internet take my imagination and fear to some insane places. For the moment, at least…
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