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Tube disruptions

MagazineAugust 2014 (Vol. 25 Issue 5)Tube disruptions

Sterilization is supposed to be a simple procedure with no side-effects, but after Janine Brockway suffered 36 symptoms, she realized she was just another patient with PTLS, a problem doctors still deny existsAfter having had two children by C-section-and with another on the way-Janine Brockway decided her family was complete, so she sat down with the doctor to discuss sterilization

Tube disruptions

Sterilization is supposed to be a simple procedure with no side-effects, but after Janine Brockway suffered 36 symptoms, she realized she was just another patient with PTLS, a problem doctors still deny exists

After having had two children by C-section-and with another on the way-Janine Brockway decided her family was complete, so she sat down with the doctor to discuss sterilization. The process was simple and safe, she was assured, and used Filshie clips to close her tubes. And best of all, there were no side-effects whatsoever. When she signed the consent form, Janine recalls that, indeed, no side-effects were mentioned.
The procedure was carried out immediately after the birth of her third child, again by C-section. But when she got her baby back to her Maidenhead home, Janine noticed that things were different. She couldn't breastfeed and her 'baby blues' were far worse this time. She suddenly lost a lot of hair and what was left became very brittle, so she tried to counter that by taking hair-growth tablets. Her sex drive disappeared.
Over the next few months, she started to suffer a host of other symptoms-from a bloated stomach, weight gain and a burning sensation in her bladder to mood swings, chronic depression, chronic fatigue, hot flushes and night sweats, poor memory and constipation.
"It never even occurred to me that the sterilization could have anything to do with these health problems, especially as the doctor assured me there were no side-effects," recalls Janine, 40.
Eighteen months later, her views started to change when she met a friend who had suffered similar symptoms after sterilization, but whose health improved after her clips were removed. Janine went to a different hospital, as she had moved home in the meantime, but they refused to remove the clips and told her that her symptoms couldn't be related to the procedure anyway.
By now, Janine had a name for her problem-post-tubal ligation syndrome, or PTLS-and it seemed to be one that many women suffer following sterilization. In fact, 40 side-effects have been listed, and Janine reckoned she'd experienced 36 of them.
Despite the mounting evidence, the doctors refused to believe her. "By this time, I felt stupid, exhausted and frustrated, and it was as if I had been told that my symptoms were all in my head." Janine said. She used alternative remedies, but she knows of many women who resorted to powerful painkillers just to get through the day, although she was still making regular visits to her family doctor for the many symptoms that kept reappearing.
It was only in March this year-nearly four years after she had been sterilized-that Janine heard about a specialist, Mr Clive Pickles, who was routinely carrying out ligation reversals at the BMI Park Hospital in Nottingham. The only problem was cost-as Janine was a single mother with three children. Using credit cards with initial zero-rate interest, she was able to raise the lb4,000 needed for the procedure. "I knew it would be a struggle to pay back the money, but I had reached the stage where I would rather die than carry on suffering."
She suspected the clips had moved to a different part of her body-quite a common problem with Filshie clips, Janine discovered-and she asked the surgeon if she could be given the clips after the reversal as a "memento of my freedom". But when she came round after surgery, Mr Pickles said the reversal had been a success, but he couldn't see any clips anywhere. An X-ray was also unable to detect any clips.
In fact, clips were either not used at all, or her body had expelled them early on. Her tubes had been cut and tied, Mr Pickles confirmed, but at the wrong end. The tubes are usually tied close to the uterus, but Janine's had been tied near the ovaries.
In the US, there are many more surgeons prepared to carry out ligation reversal-and the Chapel Hill Tubal Reversal Center in Raleigh, North Carolina, is one of the most active. In the UK, doctors are still in the main denying that PTLS is even a real problem, despite the many cases among women.
Janine is now dedicated to changing that attitude and to having doctors warn women of the possible side-effects of the procedure. Around 12,000 women undergo ligation in the UK every year, and it's reckoned that up to 150 million have been sterilized around the world; many will experience some PTLS symptoms.
Aside from offering support to other women on Facebook and in chat rooms, Janine has also started a petition to make doctors aware of PTLS and to ensure they inform women of the side-effects before they consent to treatment. She needs 100,000 signatures before it is discussed in Parliament, and she has a long way to go.
If you'd like to sign the petition, you can add your name at the following website: www.petitions24.com/require_doctors_to_inform_women_of_ptls_before_a_tubal_ligation


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