Urinary incontinence: why aren’t women talking about it?

Following an article "Are we pelvic floor aware" in June 2016, we at Health+Family were contacted by many readers. So we have revisited the subject, concentrating on treatment options in Ireland

With one in three women affected after childbirth, it’s surprising to find that female incontinence is rarely spoken about.

Incontinence is the involuntary leakage of urine from the bladder and it can be classified as stress incontinence or urge incontinence. Stress incontinence occurs when the woman sneezes, coughs or goes for a walk. Urge incontinence happens when she has a sudden need to urinate. Women can also have mixed incontinence, which is a combination of both. Urinary incontinence is one of three pelvic floor disorders (PFDs) – the other two are faecal incontinence and prolapse.

Stress incontinence is normally mechanical and frequently caused by childbirth, but people who have never had a baby can also be affected. Dr Gerry Agnew is a consultant obstetrician, gynaecologist and urogynaecologist at Holles Street Maternity Hospital. He is also one of only a handful of doctors in Ireland regularly operating on women to treat stress incontinence.

He says that while PFDs are extremely common (20 per cent of women will undergo at least one operation in their lifetime), women are still reluctant to discuss their symptoms with friends and even their doctor.

For Emma Neill, from Dublin, going to her doctor unfortunately did not lead to a satisfactory treatment plan for her. She was 24 when she became pregnant with her first child. Soon after having her son she noticed she would leak urine when running or when she sneezed or coughed.

“I couldn’t go out for a walk without putting a thick incontinence pad on because if I took a step too far, I would leak. I went to the GP and she told me I was too young to do anything about it, I wasn’t finished having my family and I just had to deal with it.

“I was only 24 and she just kept fobbing me off, telling me to do my pelvic floor exercises. I went back and she eventually sent me for physio and it was only then that I realised I was doing my pelvic floor exercises the wrong way. I did several sessions of physio in 2014, a couple of years after I had my son. There was a slight improvement but not enough for me to say, ‘okay now I can go out for a jog’.

“There was one situation that sticks out for me and still traumatises me,” she says. “We went for a walk on Ticknock Hill in Sandyford and by the time I got back to the car, I was soaked to my knees. I thought, I am 26 – this is horrific. I was wearing the thick incontinence pads and had to make sure my T-shirt was long enough to cover it before doing any exercise. Eventually in May 2015 I went back to the GP in tears, thinking I can’t live like this.” The GP then referred Neill to a specialist – Agnew.

She says this was a turning point because she was finally made to feel “normal”.

“He told me I should not have to live my life like this and he could fix it.” In terms of waiting for women to have had all their children before proceeding with the operation, Agnew says he does not agree. “It’s so patronising to say that to a woman and there is no evidence that after you do the procedure that another baby will do damage.”

Surgery

The operation, known as a mid-urethral sling and often called by its brand name, a TVT, is now 20 years old. The procedure takes 15 minutes and sees a piece of suture material placed under the urethra, providing support to the pelvic floor, stopping leakage from the bladder.

“I felt a difference immediately after surgery. I could sneeze and cough straight away and the quality of life is unreal now.” Now heavily pregnant with her second child, she says the sling has held and she is not leaking.

According to Agnew, the subjective cure rate, which is the percentage of women who consider themselves fixed after surgery, is 92 per cent. “That’s incredibly high for any sort of surgery,” he says.

In a Nordic study of 90 women who had the surgery 11½ years before, 90 per cent were objectively cured. The tape was also fully intact after that time lapse.

Stigma

Television and radio presenter Blathnaid Ní Chofaighdid believes there is a continuing stigma around incontinence, with women feeling ashamed to speak about bodily functions.

After having her third baby, she spoke about suffering with urinary incontinence for 20 years before having surgery. After the radio interview, she said some female associates thought it was “mortifying” that she had spoken about it in public.

“There is a massive stigma around this; I think it’s something that’s associated with being unclean.”

She adds that she had no idea there was a procedure that could fix her problem. She says she spent years “crossing her legs” when she needed to sneeze or cough and wore pads all the time.

Agnew says there are a couple of reasons why the surgery is not more widespread and that more referrals aren’t made by GPs. For one, there are not enough consultants specialising in this field. The other is the fact that it is still a relatively new surgery.

“It’s only in the past 15 years that urino-gynaecology has become a sub specialist field. I don’t do any other kind of gynaecology but this. I do pelvic floor repairs all day every day, as well as delivering babies.

“We can’t keep up with (the demand) . . . I do three public gynae clinics a week. There is an 18-month waiting list to get seen in the public clinic and then another year to 18 months to get surgery. I also do private work. There are not enough people specialising in this area.”

He believes that young doctors haven’t realised that there is such a demand for expertise in the area. “The need for pelvic floor surgeons has massively increased. The junior doctors haven’t really copped on to it yet.”

He says in a Melbourne hospital, where he worked previously, they had five consultants who just did pelvic floors.

“One woman in five will have one surgery at least in her lifetime for prolapse or incontinence but it’s probably closer to one in three women who have physio or use pessaries. The medical community did not realise how common this was. This has been going on (for many years) and I often think about out grandmothers’ generation, in Catholic Ireland, with 15 kids.” He also agrees with Ní Chofaigh, that there is still huge stigma and shame around this condition.

Agnew now runs a clinic at St Michael's Hospital in Dún Laoghaire with colorectal surgeon Dr Ann Hanley, called the Pelvic Floor Centre. "We realised that the gynaes were looking after urinary incontinence and prolapse and the colorectal surgeons were looking after faecal incontinence."

At the centre, which they are hoping to get national status for, they deal with both issues at once. He says that women are hearing about this treatment mostly through word of mouth.

“I get most of my referrals from the golf clubs because you treat someone and they go and tell all their friends. Once we got a good treatment for stress incontinence, women started coming out of the woodwork.”

Physio So what part does physio play? Women, for the most part, are well aware of their Kegels and ante-natal classes emphasise pelvic floor exercises during pregnancy.

Women's health physiotherapist Maeve Whelan works regularly with women who have both stress and urge incontinence. She points out that 50 per cent of women do not do their pelvic floor exercises correctly. She explains there can also be an over-activity in the pelvic floor muscle, where the muscle is too tense.

“It doesn’t relax properly, therefore it doesn’t contract properly and it’s not supportive and that’s common to young people as well as older people. You can have this over-activity all your life. There’s the whole concept of giggle incontinence and that’s common to teenagers. It’s a form of stress incontinence. There is nothing structural that is causing that but it can be a muscular tension.

“The interesting point about that is, when people overdo Pilates, bootcamp or training and their pelvic muscles are already too tight, they are making things worse. There is a different type of training needed there. You may have to pull people back from Pilates and suggest breathing and yoga, as well as some postural readjustment.”

In France, Whelan says women are given 10 free physio sessions as a matter of course, straight after birth. Here, physios are under huge pressure and are allowed to provide only for women who are in trouble after childbirth. “They are the women with third-degree tears – they are entitled to repeat appointments but unless they have that they are not entitled to anyone checking their pelvic floor exercises.”

Agnew agrees that pelvic floor exercises, performed during pregnancy, have been proven to help in decreasing the short-term risk of urinary incontinence and are to be encouraged. However, post-delivery, he urges caution.

“Many women would appear to sustain injury to the pelvic floor muscle complex at delivery. If this is true, pelvic floor muscle exercises in the immediate post-delivery period may be harmful. This is based on evidence from sports medicine that the preferred early treatment of muscle injury is rest or immobilisation, with strength training only after initial healing is complete.”

Aside from surgery, other treatment options include oral medication and botox. “If symptoms persist, then oral medications such as anticholinergics or beta agonists would be used,” says Agnew.

“If urgency still persists then a day case procedure where botox is injected into the bladder is extremely effective. This botox treatment would have to be repeated usually on an annual basis, as the effect of the botox wears off over time.”

A sling operation will not treat urge incontinence – this is treated by decreasing aggravating factors such as caffeine or attending a physiotherapist for bladder retraining. Whelan says physiotherapy can be very effective for this.

Read more on irishtimes.com/health