PTLS: Post Tubal LIE-Gation Syndrome

Last month I was in hospital having an operation. I was left to wait until almost 6pm for the procedure, despite it being boiling hot, with no aircon, and I’d been Nil By Mouth since 7am. During that time it was just me, alone in a room, with my notes.

Of course, I read them.

12 years ago, aged 30, I went to the doctor for advice, and potentially assisted conception. (I’d had earlier surgery in my mid-twenties for pre-cancerous cells on my cervix, but had been assured that wouldn’t affect my future fertility. It turned out the doctors were wrong).

Two years later, at 32, I instead found myself being sterilised as per the advice of said doctors. Apparently, my fallopian tubes were damaged and needed to be removed to allow the IVF (they said I needed) a greater chance of success, as they were leaking fluid potentially toxic to embryos – a condition called hydrosalpinx. When I awoke from the procedure I was told that actually, the tubes hadn’t looked that bad after all – the other hospital had been wrong – but they’d removed them anyway. (Sorry, what?!). Upon being discharged from the hospital, the discharge form stated I’d had a ‘bilateral salpingo-oopherectomy.’ I didn’t know what that was (since it had never even been mentioned as a possibility), so I Googled it. They’d removed both my ovaries as well as the tubes?! What the actual…?! I’d never consented to that!

Shaking, I rang the (private) hospital we’d just paid over £3.5k to (in order to skip what would have been another very lengthy waiting list – the actual surgeon was the same one I’d have seen on the NHS). They said it was an admin error, they’d not touched the ovaries, to destroy that discharge form, and they’d post the correct one…

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, diagnosed with premature ovarian failure and told to forget any hopes of motherhood. Years later, feeling horrendous, I was finally diagnosed with premature menopause and put on oral HRT. (By then these events had destroyed my 15-year relationship and my husband and I eventually divorced.)

Back to last month, alone in that hospital bed. I’m 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.

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.

Evidence.

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.

Anyway. I’m now laid up in agony, my body (and mind – this is some headfuck!), contorting in pain.

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’s complex, which is why I’ve not pursued it before now.

So, what do I do? Try to accept the hand I’ve been dealt and move on? Or challenge the decisions made by others that have ultimately changed (ruined?!) my life?

Hmmm. It’s a melon-twister alright. I decide to do a little digging, go on a fact-finding mission…

A week later I’m 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, I think, sceptically.

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’s office and proclaims: “It’s not good news, I’m afraid.”

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?

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 ‘bilateral salpingo-oopherectomy.’

“If you only consented to a bilateral salpingectomy then that’s what would have been done,” she says tersely, “…so I’ll just go in and amend the notes accordingly then.” Can they even just do that? Change my medical records?!

“But surely there’s some record of all the infertility investigations, procedures and operations I’ve endured?” I ask, incredulous. It would appear not. In fact, the only reference she can find in a 10-year period is my GP’s IVF referral letter to St Barts. No consent forms, discharge forms or doctor’s 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.)

I approach the private hospital. Nothing. My records have been destroyed. I’m advised to try the Pathology department. Snap. Histology? Same again. They say my name is on file but the tissue samples were incorrectly coded with a generic code, so there’s 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’s like I never existed. The invisible woman.

Later, at my hospital follow-up appointment, I ask my current consultant if I have ovaries. “I don’t know,” he says, looking sheepish. “I didn’t look. We were only dealing with the womb…”

Feeling frustrated, I decide it’s a lost cause. And then, I find something. A website called www.tubal.org. I read about Post Tubal Ligation Syndrome (PTLS). It’s the first I’ve ever heard of this condition, despite the fact I have almost every symptom and have done for over a decade. The IVF doctors did mention that even if the ovaries had not been removed, at the very least the blood supply to the ovaries must have been accidentally damaged during the tubal procedure. It was said fleetingly, in hushed tones, and never mentioned again. An Old Boys’ Network code of silence, it would seem.

And suddenly it all makes sense: the tube removal, the failed IVF, the POF (premature ovarian failure), surgical menopause, the denial by doctors that it’s related to my surgeries, being prescribed many, many different versions of HRT, the ‘lost’ medical records, the cover-up. And now the need for a further hysteroscopy procedure to remove polyps and my womb lining, the need to insert a coil: the second form of sterilisation to now being inflicted on an already-infertile woman…this time to try and regulate my shot hormones.

I have PTLS.

And I’m not going to let this go.

This is going to sound crazy, but hear me out. I’ve since found out that:

– there is a global policy which has been in place since 1976 to control the population by sterilising 1 in 4 women. The most famous example of this is China’s One Child Policy. This target is being hit…and surpassed.

– Worldwide, doctors are actively “selling” sterilisation (tube removal/ligation) as a means of population control without disclosing the myriad associated health risks.

– when the blood supply to the ovaries is damaged (which I thought was rare and I was unlucky, but actually happens in at least half of cases), the result is ovarian failure aka surgical menopause. The ovaries do not have to be removed to be rendered useless. The result is ‘female castration.’

– health risks of this include heart disease, stroke, premature death, dementia, osteoporosis – the list goes on. Most women with premature ovarian failure (menopause under the age of 40) do not reach their 80th birthday.

– there is a Code Of Silence (COS) in the medical profession about this since the above policy protects the profession from legal action. I am encountering this now: being told my notes have been destroyed etc.

– you will not get hormone testing/diagnosis of PTLS (Post Tubal Ligation Syndrome) since to diagnose it would be to admit liability. You will not find the risk of PTLS (and the serious long-term health implications) on any pre-surgery consent form.

Ladies: we have to take a stand against this! Are you a woman who has been sterilised (aka tubal ligation/bilateral salpingectomy), as a precursor to IVF (like me), or for birth control? Or do you know someone who has? Have you/they suffered Post Tubal Ligation Syndrome as a result?

I am determined not to let other women suffer as I have as a result of misinformation. I went to my GP asking for help to start a family. I was left infertile, sterilised and in premature menopause, my life expectancy reduced and with a whole host of associated health problems. I have signed the petition for clarity on the consent form, joined the Coalition For Post Tubal Women (CPTW) and intend to expose this and fight. If you too are a victim of this doctor-caused dis-ease, please get in touch.

Sam x