Shaking, I rang the (private) hospital we\u2019d just paid over \u00a33.5k to (in order to skip what would have been another very lengthy waiting list – the actual surgeon was the same one I\u2019d have seen on the NHS). They said it was an admin error, they\u2019d not touched the ovaries, to destroy that discharge form, and they\u2019d post the correct one…<\/p>\n
Fast forward to 3 attempts at IVF. They all failed. Unsurprising, since Barts struggled to get any eggs from the tiny excuses for ovarian tissue I had remaining. I was labelled a Poor Responder<\/span><\/strong><\/a>, diagnosed with premature ovarian failure<\/span><\/strong><\/a> and told to forget any hopes of motherhood. Years later, feeling horrendous, I was finally diagnosed with\u00a0premature menopause<\/span><\/strong><\/a> and put on oral HRT.\u00a0<\/span><\/strong><\/a>(By then these events had destroyed my 15-year relationship and my husband and I eventually divorced.)<\/p>\n Back to last month, alone in that hospital bed. I\u2019m awaiting yet another procedure, (all of which have been related to that very first cell removal almost 2 decades ago). I peek at my notes…which confirm that they did, in fact, perform a bilateral salpingo-oophorectomy.<\/p>\n They took my ovaries. Who removes the ovaries of a 32-year-old trying to conceive?! They got the dates wrong; it was July 2008 not 2009, but there it is.<\/p>\n Evidence.<\/p>\n Did I mention that, despite being in hospital for an operation directly related to my infertility and subsequent sterilisation, and despite the fact that the nurse has just discussed my full medical history and my devastation at being sterile, another nurse has just breezed in sing-songing: “Good news! You’re not pregnant!” Un-frickin-believable. I had no idea the urine sample was for a pregnancy test.<\/p>\n Anyway. I\u2019m now laid up in agony, my body (and mind – this is some headfuck!), contorting in pain.<\/p>\n I should point out that this catalogue of catastrophes has taken place over two decades, several boroughs, two counties (I moved house and areas several times over the years), about five different GPs, several hospitals – both NHS and private. It\u2019s complex, which is why I\u2019ve not pursued it before now.<\/p>\n So, what do I do? Try to accept the hand I\u2019ve been dealt and move on? Or challenge the decisions made by others that have ultimately changed (ruined?!) my life?<\/em><\/p>\n Hmmm. It\u2019s a melon-twister alright. I decide to do a little digging, go on a fact-finding mission…<\/p>\n A week later I\u2019m out of the hospital and feeling better so I contact my GP’s secretary, who arranges an appointment for the following week for me to view my notes. Just long enough to dig out and destroy any evidence<\/em>, I think, sceptically.<\/p>\n Lo and behold, when I rock up at the surgery the mousy receptionist leads me to a dingy little office amongst the rabbit-warren of rooms I never knew existed behind the bright and airy doctor\u2019s office and proclaims: \u201cIt\u2019s not good news, I\u2019m afraid.\u201d<\/p>\n She pulls out a dog-eared file stuffed with scraps of spider-scrawled paper and distinctly unofficial-looking medical notes. The main thing I notice is the rather sparse amount of material. Surely 42 long years on Planet Earth warrants slightly more than a few yellowing file cards and some folded sheets of A4?<\/p>\n Where are all the notes that I photographed at the hospital? I have to confess to copying them to prove that they are missing. Her explanation? That those notes are transcribed from this tatty file, and that someone must have copied them down wrong when describing my procedure as a \u2018bilateral salpingo-oopherectomy.\u2019<\/p>\n \u201cIf you only consented to a bilateral salpingectomy<\/span><\/strong><\/a> then that\u2019s what would have been done,\u201d she says tersely, \u201c…so I\u2019ll just go in and amend the notes accordingly then.” Can they even just do that? Change my medical records?!<\/em><\/p>\n “But surely there\u2019s some record of all the infertility investigations, procedures and operations I\u2019ve endured?\u201d I ask, incredulous. It would appear not. In fact, the only reference she can find in a 10-year period is my GP\u2019s IVF referral letter to St Barts. No consent forms, discharge forms or doctor\u2019s notes. At all. No IVF records. (Luckily I requested copies from Barts at the time and have these safely in my filing cabinet at home.)<\/p>\n I approach the private hospital. Nothing. My records have been destroyed. I\u2019m advised to try the Pathology department<\/span><\/strong><\/a>. Snap. Histology<\/span><\/strong><\/a>? Same again. They say my name is on file but the tissue samples were incorrectly coded with a generic code, so there\u2019s no record of where in the body they were taken from…and no record of where they were sent for storage. They reluctantly give me contact details for the storage facility. Again, nothing. I come up against a brick wall. It\u2019s like I never existed. The invisible woman.<\/p>\n Later, at my hospital follow-up appointment, I ask my current consultant if I have ovaries. \u201cI don\u2019t know,\u201d he says, looking sheepish. \u201cI didn\u2019t look. We were only dealing with the womb…\u201d<\/p>\n Feeling frustrated, I decide it\u2019s a lost cause. And then, I find something. A website called www.tubal.org<\/span><\/strong>. I read about Post Tubal Ligation Syndrome<\/span> <\/strong><\/a>(PTLS). It\u2019s the first I\u2019ve ever heard of this condition, despite the fact I have almost every symptom<\/span> <\/strong><\/a>and have done for over a decade. The IVF doctors did<\/em> mention that even if the ovaries had not been removed, at the very least the blood supply to the ovaries<\/span><\/strong><\/a> must have been accidentally damaged during the tubal procedure. It was said fleetingly, in hushed tones, and never mentioned again. An Old Boys\u2019 Network code of silence, it would seem.<\/p>\n![\"\"](\"https:\/\/i0.wp.com\/lifeabirdseyeview.com\/wp-content\/uploads\/2018\/08\/c86a71cf-6233-4b5a-b6ee-bf98e42a40a6-1.jpg?resize=1138%2C297\")
![\"\"](\"https:\/\/i0.wp.com\/lifeabirdseyeview.com\/wp-content\/uploads\/2018\/08\/img_5185.jpg?resize=819%2C1024\")
![\"\"](\"https:\/\/i0.wp.com\/lifeabirdseyeview.com\/wp-content\/uploads\/2018\/08\/img_6427.jpg?resize=1170%2C877\")