Phoebe

Age at interview: 36
Brief Outline:

Phoebe was in pain and had difficulty walking after having her third baby. She struggled to get her midwife and GP to look into it. Since being diagnosed with a cystocele (prolapse of the bladder into the vagina) and rectocele (prolapse of the rectum into the vagina), she has been seeing a private post-natal physiotherapist.

Background:

Phoebe is an executive assistant, currently on maternity leave. She is married and has three children (aged 6 years, 4 years, and 5 months old). She describes her ethnicity as White British.

Condition: pelvic organ prolapse

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Six weeks after giving birth, Phoebe was experiencing intense pain and heaviness which made it difficult to move and walk. Phoebe asked her midwife and GP but was told that this was a part of the normal healing process, even though she knew the pain “felt different” compared to previous postnatal recoveries. At her six-week post-natal check, Phoebe’s GP did not do an internal examination and seemed more concerned with getting her back on birth control. Phoebe’s pain continued, so she chose to use her private insurance to see a new GP. She found the reaction of a female GP “completely different” and treated her pain with more sympathy. Phoebe was referred to a urogynaecologist and told not to over-exert herself.

Phoebe had a consultation with an urogynaecologist, who she found “rather unprofessional”. Throughout the appointment, he made insulting jokes about her baby and her sex life. He recommended that Phoebe have a hysterectomy and stop breastfeeding. She found both of these suggestions jarring and “massively unhelpful”. During an examination, the urogynaecologist used complex medical terms and would not directly tell Phoebe the grade of her prolapses. Looking back, she is struck that the urogynaecologist failed to mention other treatments she could try before surgery, such as pessaries.

After seeing the urogynaecologist, Phoebe turned to other sources of information. She looked for information online but found that the NHS website didn’t offer enough information. Phoebe felt it was also very “geared” towards post-menopausal women, which made her feel out of place as a young mum. She found other online sites focused mainly on severe prolapse, which was “very frightening”. Phoebe also booked an appointment for women’s health physiotherapy through her medical insurance. The physiotherapist was kind and sympathetic and told Phoebe the grade of her prolapse based on a letter from the consultant. She learnt she had a grade 1 cystocele (prolapse of the bladder into the vagina) and grade 2 rectocele (prolapse of the rectum into the vagina); Phoebe had thought she had very severe prolapses. The physiotherapist did an internal examination and gave Phoebe a round of exercises to tighten her pelvic floor.

Soon after, Phoebe also had a separate appointment with a private practitioner focused on post-natal care. She met with the practitioner, who informed her that she actually had an overactive pelvic floor. The practitioner also suggested that much of Phoebe’s pain and mobility issues were caused by a muscular issue in her hip. Phoebe found she could better manage her symptoms with myofascial massage, breath-work to relax her pelvic floor, and Pilates. Comparing the treatments she’s received from the physiotherapist and postnatal practitioner to the hysterectomy suggested by the urogynaecologist, Phoebe has been “horrified” by the “extremes in the quality of care”. She continues to attend the private postnatal care service; whilst expensive, she feels this has been “the very best of care”.

Having prolapses initially meant that Phoebe found herself struggling with “really basic things” like driving her children to school or playing with her kids. Before seeing more caring healthcare professionals, such as the physiotherapist and post-natal practitioner, Phoebe felt that she was effectively being told “you can’t be the mother” you want to be. She thinks this added to her postnatal depression. Now that she is better able to manage her prolapses, she is glad to be able to “repair” the disruption to her identity and relationships with her children. Phoebe also felt that her relationship with her husband was a bit strained because the thought of being intimate was “frightening” and this concern had been dismissed by her GP.

Phoebe feels “shocked” by the lack of information provided to women about prolapse. Her healthcare professionals hadn’t mentioned it during any of her pregnancies, and she later found out that she had been encouraged to deliver her baby in a way that is known to risk pelvic floor dysfunction. Phoebe now struggles with a “massive distrust of the medical profession” from her experiences of being misdiagnosed and treated disrespectfully. She hopes that healthcare professionals will receive more education on pelvic floor dysfunction in the future, and that they will be respectful of women’s needs and lifestyles. Phoebe encourages women to talk more openly about postnatal issues to reduce the stigma. She also recommends that they advocate for themselves and be careful in how they seek information online.

Phoebe felt that her specialists sometimes spoke about her like a “slab of meat”, and lost sight of explaining things that were unfamiliar to her.

Phoebe felt that her specialists sometimes spoke about her like a “slab of meat”, and lost sight of explaining things that were unfamiliar to her.

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Then he called a nurse to come to be sort of like a a, I don’t know what you’d- a chaperone basically and I’m, I mean when he called her, he stuck his head out and just sort of shouted down to the nurses station, “I’ve got another one for you.” Which I just felt so like a slab of meat. And I know it’s their day-to-day, they must get it all the time but I mean it’s quite, you feel so self-conscious anyway especially postnatally because I was a mess and he, yeah, so he then-, he does an examination, wouldn’t tell me what grade of prolapse I have. Said-, used lots of completely- I’m sure it’s completely correct of medical language but without me understanding what it is. He said things like, you know, using this term lazy and laxi-, lax-, what’s it called when it’s l, my muscles were lax basically but not explaining what that meant in relation to the prolapse. Wouldn’t give me a grade and then he said, ‘Oh we’ll talk about your surgery options.”

 

Phoebe’s physiotherapist had told her about other types of pessaries that are not available on the NHS but can be accessed privately.

Phoebe’s physiotherapist had told her about other types of pessaries that are not available on the NHS but can be accessed privately.

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The only ones that seem to be mentioned in connection with the NHS are ring pessaries and from a little bit of research and also now talking to both physios, they’re not very effective on all sorts of prolapses and depending on what you want to do and then there’s also the question of how that affects your sex life. You’ve just, you know, giving up lifting things, you don’t want to give up everything that makes you, so that was really disappointing. I now have since learnt that if you go private you can, there are various ones you can try and from talking with people I’ve heard absolutely amazing things about them and now you don’t have to wear them all the time, you can choose to wear them for a run, for example, which makes it a bit more liveable with if you’re younger I think and yeah so I feel buoyed that there is that option but again it is something that you would have to do privately because it doesn’t seem that they’re all available on the NHS.