When scientific rigour declines to hold hands with women´s health

Sadie was thrilled to finally hold her new born. It was as warm as the Scandinavian summer gets, and Sadie let herself sink into the joy of maternity as her daughter’s tiny hand wrapped around her finger. Little did she knew about what she was about to endure, “It completely destroyed my life.”

sadie lawler
Sadie Lawler with her daughter, Oslo, Norway.

In her Oslo home, Sadie leaned on the cushions nurturing her baby and wondering when the ache would go away. At first she thought it was the stitches what caused the pounding pain in her pelvis. When she told her midwives about it, they ignored her complaints and Sadie went back home thinking that was it. She just had to wait for the pain to go. But it never did. “I could not sit, stand or walk without pain. The pain was constant. I couldn’t take care of my baby properly”, she tells me.It was time for her six-week postnatal check-up. Sadie’s doctor told her that everything looked ok, nothing to worry about. But nothing was ok for her. She felt as if her pelvic organs were about to escape through her vagina. Urinating was a painful effort that she couldn’t control anymore, and she would feel anxious about emptying her bowels. Sadie stopped going out. “I was in so much pain…I couldn’t take my baby’s stroller out of the car… But also because of the toilets: public toilets were too high and I just couldn’t urinate.” No, Sadie was not ok.

One day she dared to look. She took a mirror and held it between her legs. “I realised something was wrong and I begged my doctor to refer me to the gynaecologist, who also said everything was fine and that it would heal on its own. But I didn’t feel everything was all right, at all, and I also begged him for help.”

Sadie had to beg twice before she was referred to a specialist in physical therapy to check her pelvic floor (PF). However, after being gas-lighted by several midwives, her own doctor and her gynaecologist, she was still to face an even harsher response: “She [the physical therapist] informed me that I had a prolapse and that my symptoms were ‘nothing’. Then she told me: ‘Finish having all your kids and then have surgery’.”

Sadie had POP’s: pelvic organ prolapses, in bladder, vagina and rectum. A pelvic organ prolapse (POP) is the slipping forward, down and/or out of a pelvic organ. Sadie´s down bits were falling.

It is estimated that at least 50% of all women worldwide who give birth end up with POP. In Australia, one out of four women are suffering from POP now, and around 20% of them will undergo surgery to repair it. Pelvic prolapse surgery is the most common inpatient surgery  in women, yet one of three women will prolapse again after going under the knife. To this relative inefficacy adds the last update on mesh, used in the surgical procedure to restore POP. This mesh has been removed from the Australian market and has left behind over 700 women in Australia -and thousands in UK, Canada and the United States- with constant pelvic pain, sexual dysfunction, incontinence and a life of suffering.POP infographic 2 tranparent

These are the numbers Arica looked at when she was referred to an urogynaecologist with a stage 2 POP diagnosis: thousands of women’s life destroyed by a mesh implant. She had just given birth to her third child when she noticed something was wrong: “I had a ‘falling-out’ feeling, and I couldn’t walk more than ten minutes without feeling extreme pain in my pelvis and low back.”

While Sadie was coming to terms with her diagnosis as the Scandinavian winter approached, on the other side of the world, Arica was pondering her options while struggling to keep up with the care of her children in her Australian home. The constant pain deprived Arica of enough strength to play with them. The birth injuries were jeopardising her personal life, even dictating the intimacy with her husband: “I didn’t want to go out, I couldn’t play with my children or be intimate with my husband. I felt depressed, that nothing could help and this was my life from now on.”

The prospect of surgery haunted these women miles apart with a mix of fear and determination: “There must be another solution”, they convinced themselves. And both were about to find it.

“I found out about hypopressives a year postpartum, after having done physical therapy to no avail, still being in great pain. Just two days of practising ‘hypos’, after a year of constant aches, I could walk almost without pain. A few weeks later, all my bothersome symptoms were gone. Now, eight months later, I am asymptomatic”, Sadie tells me.

Arica typed in Google “prolapse alternative to surgery”. “I was doing kegels and I wasn’t improving. I did my own research for alternatives to surgery and found about hypopressives. After three sessions, I could stand and walk for more than ten minutes. Within a couple of weeks, I was able play with my children and help in the garden.”

But, what are hyporessives? Hypopressive is a French word that means low-pressure. The hypopressive technique was created by physiotherapist Marcel Caufriez to aid PF rehabilitation post-partum, helping to release intraabdominal pressure and minimising the ‘push-down’ of the pelvic organs. Piti Pinsach and Tamara Rial further developed this technique that became Low Pressure Fitness (LPF), a holistic approach to pelvic health. LPF is currently the most popular technique used by health and fitness professionals to address PF health in Spain, it is gaining great popularity in Brazil, and PF physiotherapists in Canada are incorporating it in their treatments.

LPF is a non-invasive  holistic exercise program not only for POP prevention and rehabilitation, but also for incontinence, posture re-education, easing breathing patterns, enhancing sexual function and releasing muscular tension. “I feel taller, more agile and mobile. But also, more confident with body movements!” say Shandra and Louise, who approached LPF technique to help with continence but found extra benefits. Maria tried LPF out of curiosity, without further agenda: “I don’t know why, but it feels so good! I want to keep doing it”. Moreover, the three of them agree LPF has boosted their self-confidence.

Paula Campanero and Trista Zinn are LPF representatives in Australia and Canada respectively. When asked to describe what LPF is, they agree that “is a holistic postural and respiratory approach to PF and core exercises.” According to Campanero, kegel exercises are now left in a second place as their effectiveness is limited to strengthening the PF muscles, whilst LPF is a tool that works the complex system involved in PF function by combining whole body stretches, breathing patterns and postural exercises.

Sadie and Arica strongly agree that LPF has been a key component in their healing process. Campanero, a former elite athlete, also recovered from a POP caused by an intensive exercise regime.  It was a POP stage 2 what made Zinn travel to Spain to learn LPF: “After two weeks practising LPF I went from a stage 2 to a stage 1. Around four weeks later, my therapist announced my POP was gone. I told myself, ‘if a percentage of population responds to LPF the way I responded, I need to bring it to Canada’.”

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Trista Zinn, Canada LPF International Coordinator.

Many women around the world are becoming LPF advocates sharing their testimonies in social media and blogs after practising LPF and experiencing great health improvements.  LPF is emerging in many countries as a life saver for the most prevalent women’s health issue: PF dysfunction.

However, the scientific community is less than enthusiastic about what has been called a “a good marketing campaign with no scientific evidence”. This is especially true in Australia, where PF physiotherapists are reluctant to use tools not supported by scientific evidence in their interventions.

Helene Frawley, PF physiotherapist and researcher at Monash University, says that “unless there is good evidence that this [LPF] is effective”, she cannot recommend it. On the other hand, Pilar Martin, physiotherapist and LPF instructor in Perth, challenges this approach stating that there is enough clinical evidence. She also questions “what was first the chicken or the egg? What is first: scientific evidence and then clinical practice, or clinical evidence driving the scientific research to support it?”. In agreement with Campanero, Martin also insists in the differentiation of LPF and the traditional approaches to PF dysfunction: “LPF is functional; kegel exercises are exclusively focused on PF muscles. PF issues are complex and pertain to several body parts working in synergy; LPF is a holistic approach and whole-body recruitment that serves this purpose.”

There is no denial that LPF doesn´t lean on strong scientific evidence, and what is available is contradictory. Notwithstanding, there is an atmosphere of bewilderment among LPF practitioners, who declare the studies carried out to test LPF’s efficiency are not reliable because, in these studies, the technique has not been used properly and relies on researchers “own interpretation of what it [LPF] is, never delivered by someone who actually knows it!”, according to Zinn. This is obvious in a debate about hypopressives that took place on the online version of the British Journal of Sport Medicine (BJSM) a few weeks ago, where the authors recognise that they have interpreted the technique from a manual that doesn´t match the actual LPF technique.

It is relevant to mention that Pinsach, in the last ten years, has been inviting scientist to carry out studies on LPF with LPF trainers to establish a body of evidence. Yet, the little evidence there is, is being gathered without the participation of an expert in the field.

One of the conclusions reached in the BJSM debate is that PF muscle training (namely “kegels”) is cheap, effective and evidence based, as opposed to LPF, which requires a trainer (thus a higher cost) and is not evidence based. So “why add something that has no evidence to already proven therapies?”. This adds to Campanero frustration, who has been three years working hard to promote LPF among Australian physiotherapists, and states the obvious: “Because kegels are boring. Women get bored of doing kegels. My experience is that LPF guarantees adherence to the program. It is also far more complete as it engages the whole body, thus offering further health benefits.”

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Paula Campanero, Australia LPF Coordinator and CoreTone Director, Sydney, Australia.

Campanero tells how, by the time women find her, they are desperate, some of them with depression. They have tried PF muscle training to no avail and fear ending up with their down bits under the surgical knife. “I don´t understand why Australian physiotherapists are not more open to know about LPF. I find confusing that it is rejected so directly. It is a tool they can use: if it works (which I believe it does), good. If it doesn´t, no harm is done. So far, no one has died by standing and breathing, which are the principles of LPF.”

But not all physiotherapist hold the same attitude towards LPF. Annette Beauchamp, a PF physiotherapist in Melbourne, has been open to learn the technique and talks about the handicaps that might present to Australian physiotherapists. “Initially, I thought LPF, as a stand-alone exercise, would not have an ongoing effect for women.  Later on, I could see how the principles could be used during daily activities: while picking up small children, and during exercise. I could not readily find research written in English, or LPF teachers in Australia.” This made difficult for her to discern whether LPF could be something she could abide by using “first principles”. In absence of concrete scientific evidence for a given technique, “first principles” means to rely on scientific basics that can be applied to speculate its efficacy and safety.

Beauchamp’s search led her to Campanero, who instructed her in LPF technique. Beauchamp has since incorporated LPF principles in her clinic and encourages other health professionals to explore it and do some training to learn more about LPF. However, she is not oblivious to the problem that this practice might present to physiotherapists: “Much of physiotherapy relies on teaching an activity, convincing a client to practice it at home, and monitoring their performance and outcome.  Physiotherapy is not usually one of sustained supervised practice.” She recalls an occasion where she used LPF as an intervention for a patient with prolapse, teaching her the technique to practise it at home and expecting the improvement. When the patient came back for a check-up, Beauchamp noticed that her prolapse had gone worse. “I asked her to do the exercises I taught her for me, and realised she were doing them wrong.” In this regard, Beauchamp says that the necessity of constant supervision that LPF requires is problematic in the way physiotherapy is structured, and she presents her concerns about patients’ ability to afford regular appointments, as well as the limitations of public and private insurance to facilitate that consistency.

Nonetheless, the lack of scientific evidence sits there, in front of health professionals, like a concrete wall. Whilst it is understandable that evidence is a requirement for the wellbeing and safety of patients, it is hard to comprehend so much energy spent in discrediting LPF. Moreover, it is noteworthy that the surgical mesh that has devastated so many women worldwide was approved as a treatment for POP over 15 years ago because of its efficacy in the treatment of urinary incontinence. This is an example of what  was described above as “first principle”, and that can be perfectly applied to the LPF technique till evidence is gathered. For women’s health’s sake, it seems only fair to give LPF a chance. As Campanero says, standing and breathing is hardly a risky business. The same cannot be said about mesh implants.

Meanwhile, Sadie and Arica, with a whole army of LPF users and practitioners, do their best to spread the word and let women across the globe know that there is hope. When Sadie is confronted with the reluctance of health professionals to try LPF with their patients based on the lack of scientific evidence, she exclaims in frustration “I am the evidence!”

 

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