Physiotherapy for urogynaecological conditions
Some of the people we talked to had seen a physiotherapist for treatment for prolapse, urinary incontinence, bladder pain, repeated UTI infections, or chronic pain...
Deciding whether, or when, to have surgery can be difficult. Jeannie, Jenny, Kerry, and others were not enthusiastic about surgery because of the “things that can go wrong”. Eve, Rose and Cynthia do not want surgery at the moment because it would be disruptive in their busy lives, and they knew it might not be successful or there might be complications. Others, like Elly, told us that they wanted surgical repair because they felt that the potential benefits from surgery were worth the risks.
This section covers:
In this section we use the terms:
Pelvic organ prolapse (prolapse) is a condition in which pelvic organs, like the bladder and uterus (sometimes called the womb), move down or slip out of place and may bulge into the vagina.
Urinary incontinence is the unintentional loss of wee/urine. There are other bladder symptoms that do not involve incontinence, such as needing to urinate a lot, getting up at night a lot for a wee, or difficulties emptying the bladder.
UTIs (Urinary Tract Infections) are when bacteria infect the system that stores urine (such as the bladder). There are other types of conditions that can involve bladder irritation and pain, such as interstitial cystitis (also called bladder pain syndrome).
Several of the women that we talked to, including Elisabeth, Sarah, and Jo, had undergone surgical repairs to the front (anterior) or back (posterior) vaginal wall to treat bladder (cystocele) or bowel (rectocele) prolapses. Sarah felt that her anterior repair “wasn’t particularly successful” as it didn’t help her stress incontinence, whereas Georgina was happy with the outcome of her rear wall repair for a rectocele. Amy, who has Ehlers Danlos Syndrome, a condition that makes joints and skin unusually stretchy, worries about choosing the right time for a repair because she has been told that waiting until after menopause might mean the surgery would be less effective.
Vickie, Leeanne, and others had more than one surgical procedure at the same time. Vickie had a perineal repair at the same time as having her “bladder and bowel lifted”. Leeanne had “quite a long operation” which involved anterior, posterior, perineal repairs, TVT surgery (a vaginal mesh implant), and a laparoscopy to investigate endometriosis. A few women, including Gwen, had a repair and a hysterectomy during the same surgery.
It could take a long time to recover from surgery. Vickie said that she would like to have felt more prepared for the emotional impact of surgery. Jo sometimes said she still feels “pressure in my bottom” ten months after her anterior and posterior repair but she now feels really well, “psychologically, emotionally, physically, spiritually”.
A number of women we talked to, including Julie, Mary Y, Elisabeth, and Katy, had undergone Tension-free Vaginal Tape (TVT) or TVT-obturator (TVT-O) procedures. This involves an operation to fit a synthetic mesh ‘tape’ to lift the bladder and treat urinary incontinence, or to hold the pelvic organs in place to treat prolapse. Sarah had been really pleased that she was no longer incontinent following mesh surgery, as this has had such a big impact on her life.
However, while mesh surgery had been a solution for some women, others we talked to, including Sian, Fran, Susan, Carole, and Penny, had experienced complications. Fran and Gwen were unable to pass urine and were sent home with a catheter. Susan, Fran and Gwen recalled being in uncontrollable pain. Carole and Penny vividly remember their wounds bleeding. Penny, and others, experienced urinary urgency after surgery. Julie, Gwen, Katy had post-operative or persistent infections. Sian told us that the mesh surgery had left her “traumatised”.
Sophie, Jackie, and Elisabeth told us that their lives had improved for some time after surgery until the mesh started to ‘erode’. When playing tennis Elisabeth felt pain like “needles” in her groin which became excruciating. After months, or sometimes years, of unexplained symptoms, Julie, Carole, Penny, Mary Y, and others, eventually found out that their mesh had ‘eroded’, causing painful symptoms.
Penny, Julie, Jamie, and others told us that healthcare professionals often had not “believed” that the mesh could be causing their symptoms. Fran felt that no one listened to her concerns or admitted that it might be the mesh.
Jamie, Carole, and others experienced worrying and life-changing symptoms with complications following mesh surgery. Jamie feels she is on a “horrible journey with mesh”. Carole, who has multiple pain and mobility issues following mesh surgery, felt ‘devastated’ as she had only suffered with “minor” urinary leakage before the operation but now thinks she will never “be right again”. Katy and Jackie have been diagnosed with fibromyalgia since their mesh surgery. Katy feels that this diagnosis was just “plucked out of the air” although getting a diagnosis has helped Jackie feel that she is not “going mad”. Jamie cannot get around without crutches or a wheelchair and has a permanent catheter.
Sian, Sophie, Leeanne, and Elisabeth are waiting for a consultation about having their mesh removed. Some described facing the choice between having the exposed mesh trimmed or covered, partial mesh removal, or full mesh removal. Sophie and Julie said they are worried about facing further surgery.
Jamie feels she made the right decision to have partial mesh removal because she was just having “pain in that one place”. Mary Y worries that full removal is “too much of a risk”. Carole and Katy still have pain and symptoms after part of their mesh was surgically removed, whereas Penny feels that her symptoms have improved “dramatically” since a full removal.
Several, like Sophie and Katy, did not think that they had been told about any other treatment options for their incontinence before surgery. Katy, Mary Y, and others felt that they been “sold” mesh as a ‘gold-standard’ cure. Although Sophie said she had felt “desperate” because of the impact of incontinence on her life, she would not have had surgery if she had been aware of the potential consequences.
Sian, and others, feel angry because they think that the manufacturers of mesh, and the medical profession, had been aware of mesh erosion for some time before they started telling patients. At the time of the interview, a few, like Jamie, expressed surprise that there was not yet a database or register of complications to keep a check on things that are going wrong.
Several women we talked to had, or were considering, a hysterectomy as treatment for their urogynaecological condition. A few, like Elizabeth, Georgina, and Mary Y, had hysterectomies for other reasons, such as painful periods, heavy bleeding, or endometriosis. Jenny described her surgery as a “three-way thing” which included hysterectomy, anterior, and posterior prolapse repair.
A few women, like. Georgina and Julie told us that having a hysterectomy was the best thing they had done. However, Katy, who also suffered pain and had TVT surgery before her hysterectomy, felt that it was the “worst thing I’ve ever done…bar from the TVT” because she had not been aware of the effect that having her ovaries removed would have on hormones, and she still had pain.
Jo, Mary Y and Penny, said they had not felt fully prepared for their womb (uterus) to be “gone”, or, because their ovaries were removed, for menopause to start straight away. Gwen had not realised that her ovaries had been removed until after surgery.
The way that hysterectomy was talked about and presented by surgeons mattered. Phoebe feels that her surgeon had “flippantly mentioned” a hysterectomy and that the decision should never be taken lightly. Carole recalls being told by her surgeon that ‘We’ll whip out your womb” at the same time as her mesh surgery. Rose wondered if surgery is sometimes suggested before options like physiotherapy and pessaries because surgeons “just want to do surgery”.
We spoke to some people who had tried surgical interventions like bladder instillations and urethral dilatations for UTIs and bladder pain, or injections of bulking agents like Botox (botulinum) for urinary incontinence and pelvic floor dysfunction.
Holly and Anita had urethral dilatations, which involve widening the tissue of the urethra. This can be done at the same time as a cystoscopy (when a camera is inserted into the urethra and bladder to identify any visible issues). They both found the procedure unpleasant and painful, though Anita found it was effective at treating her symptoms.
Jo, Melanie, Megan, Chelsea, and others had tried bladder instillations for bladder pain or UTI problems. This involves a liquid being inserted into, and then drained from, the bladder through a catheter. Mehar had decided against trying this treatment because it would involve going to hospital for several hours of appointments every week for two months. Helen told us that instillations did not help her symptoms, while Megan says that “after a few of them” her symptoms improved “a little bit”.
Botox (botulinum) and other bulking agents (a material like collagen) can be injected into the bladder to help with incontinence, or into the pelvic floor muscles. Minnie received Botox injections annually for her urinary incontinence, which she found helped with her symptoms and improved her overall quality of life. The Covid-19 pandemic interrupted her access to treatment, leaving Minnie feeling “really stuck”. Mehar also had Botox injections; they “didn’t help 100%, but they did help 50/50” by relaxing her pelvic floor.
You can read more about experiences of decision-making for treatments, including surgery, here.
Some of the people we talked to had seen a physiotherapist for treatment for prolapse, urinary incontinence, bladder pain, repeated UTI infections, or chronic pain...
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