Alaina

Age at interview: 42

Brief Outline:

Alaina has struggled with prolapse after multiple pregnancies. She found limited information about the impact of prolapse on her daily activities. Alaina has benefited from physiotherapy and taking a holistic approach to her emotional and physical health.

Background:

Alaina has four children. She was on maternity leave from her work in the healthcare field. Her ethnicity is White-British.

Condition: pelvic organ prolapse

More about me...

Alaina noticed that she was struggling to empty her bowels after the vaginal delivery of her daughter resulted in a third-degree tear. During her recovery, Alaina wasn’t provided with much information on how to heal or the chances of developing pelvic organ prolapse. After giving birth to her second child, she went to see her GP about her lingering bowel problems. Alaina felt “passed off” by her GP based on the lack of guidance. Her GP referred her to a gynaecologist, who recommended pelvic floor exercises and seemed unconcerned.

In the following years, Alaina lived with her bowel problems and “didn’t think too much about it”. After the birth of her third child and the miscarriage of a fourth pregnancy, she refuse to get “fobbed off” and sought care again. Alaina received an internal examination from her GP that identified some laxity of her pelvic organs. The GP referred her to gynaecology and physiotherapy and suggested that Alaina be offered surgery. From the appointment, Alaina sensed that her prolapse was “something quite fixable”.

After her appointment, Alaina felt a “shift around down below”. She looked online for possible explanations and concluded that she likely had a prolapse. Alaina wondered if this would keep her from having more children in the future. At her gynaecology appointment, she was diagnosed with uterine prolapse (when the uterus slips down into or out of the vagina) and a rectocele (prolapse of the rectum into the vagina). The gynaecologist raised the possibility of a vaginal pessary but told Alaina she would not be a candidate for surgery until she finished having children.

Alaina felt additional pelvic shifting shortly later, which her GP diagnosed as a cystocele (prolapse of the bladder into the vagina). Alaina went “kind of down this big spiral” of thinking she had made it worse through activity. Alaina went to see five physiotherapists looking for help, who gave her differing advice. One physiotherapist advised Alaina that her pelvic floor was overly tight and that she should try relaxation exercises. Alaina found that these exercises were helpful with taking away urinary discomfort. During this time, Alaina’s life felt “very, very bleak” as she experienced more severe symptoms and emotional distress.

Alaina found prolapse a “tricky dimension” to family planning and pregnancy. After the diagnosis of her cystocele, Alaina found out that she was pregnant with twins. Alaina worried about the risk of a multiple pregnancy and it worsening her prolapse. A midwife warned that the prolapse would probably get worse and that the baby’s health would be prioritised over hers. Alaina chose to end the pregnancy. She later decided to get pregnant again after considering it “very, very seriously” and consulting a gynaecologist. Alaina felt intense anxiety during the pregnancy and was in a “very dark place”. While she wanted a C-section, she found little support within medical care. Alaina found it concerning how uninformed medical practitioners were about prolapse and had to do her research on minimising the risk for a vaginal delivery. Although Alaina’s vaginal delivery was successful, she feels as though she was “almost consenting” with “half the information missing”.

Throughout her journey with prolapse, Alaina struggled with anxiety towards her body and the possibility of worsening her prolapse. She worried about lifting her child or household items and avoided the forms of exercise she had previously enjoyed.

At points, Alaina was “terrified” of going to the toilet, touching her vagina, or having sex. Alaina’s husband was supportive throughout and helped her avoid “running away with my worries”. He attended some doctor’s appointments with her, which helped keep her from fixating on negative information. Online figures and communities were also “life-changing” for Alaina, as they have allowed her to question the narratives and limitations associated with living with prolapse. She now is more critical towards the “arbitrary” guidelines placed upon women, like not lifting their children.

Currently, Alaina is doing better but still has “dark days” where her symptoms and anxieties flare up. Alaina has “no interest” in knowing the grade of her prolapses at the moment. She has also returned to exercise and is less anxious about lifting things. Alaina tries her best to live with prolapse on her terms but still struggles with feeling “on the edge” of getting worse. She has considered having a pessary inserted so she can run but is uncomfortable with the idea of inserting it and feeling her prolapses. Alaina holds out some hope for a “miracle” surgical procedure or breakthrough. In hindsight, Alaina feels that she has gone through a “humble journey” that has taught her about self-care and self-knowledge.

Alaina also hopes medical professionals will think more holistically about prolapse, including the emotional toll. She values the whole body rehabilitation provided by holistic physiotherapists. She recommends that women with prolapse seek out this type of care. To women living with prolapse, Alaina recommends conducting research and questioning the narratives around limiting one’s lifestyle. She advises finding inspiring social media accounts and avoiding “too much” information.

Alaina found the advice on what to avoid doing when you have prolapse very restrictive in her daily life.

Yeah, so it’s been quite, initially it was quite limiting cause as I said like I googled and I read like the NHS website and it’s like don’t lift heavy, don’t do any high impact exercise. So, my little boy was like, maybe two, nearly three and I just stopped picking him up. I you know like I read stories about people that had had surgery and they were told not to lift a kettle. I would lift a frying pan. I remember one day saying to my husband like, it’s got worse. It’s got worse. I stopped like doing household stuff. I wouldn't take the bins out. I wouldn't lift anything. I stopped running and so I would just, I just basically sat on my sofa and didn't move, really.
 
So, I went from a very physically active person who would not think twice about kind of you know, like lifting her children or lifting a bag of shopping or to being somebody who would kind of google everything. Who would be kind of checking the weight of things. Who would be thinking like a frying pan was too heavy to lift or I shouldn’t lift a kettle or anything like tipping water out of the saucepan so that it was above a certain limit. Should lift the milk out of the fridge, was that too heavy?

 

Alaina had seen a gynaecologist who diagnosed her with a uterine prolapse and rectocele. Months later, she noticed new symptoms and was then also diagnosed with a cystocele.

I came away and even just over that weekend, I like could see something changed again down below and it felt different and so I thought like I had some kind of cyst or something and I went to the GP again and was really tearful and the GP was just very matter of fact, and he was like, “Yes, you’ve got a cystocele as well.” Went kind of down on this big spiral because I thought I must’ve done something to kind of cause that because the gynaecologist hadn’t mentioned that to me at all. And I spoke to the physio that I’d seen like just before the weekend and she said, “Oh yeah, I could feel that.” But she hadn’t told me. And then went just down like a huge kind of spiral really. In the end, I saw about five different physios. Life felt very, very bleak. I suffered like lots of symptoms for quite a while and it was really quite difficult. 

 

Alaina worries about menopause making her prolapse worse. Information online has exposed her both to “horror stories” and stories that are a “beacon of hope”.

So, what does the road ahead with prolapse look like for you?
 
I think it’s all, well, it can kind of look terrifying. So, I kind of like if I Googled just like sometimes as if it’s just gonna get worse. It’s gonna get worse as I go through the menopause. There’s like horror stories of the internet. Imagine me getting worse I feel like kind of like desperately hoping that there’ll be some kind of like miracle, surgical procedure that they’ll suddenly discover or have some kind of breakthrough with that, you know, will kind of put everything back that I never have to think about it again. But however, I guess, you know, other days I think well, I’m seeing people on Instagram that’s been a big kind of like beacon of hope at times, where they’re like, I need to lift ‘cos I need to get strong, ‘cos if I’m going through the menopause or whatever kind of life throws at me, you know, regardless of having a prolapse, I need to live my life. And so, I guess they’re the kind of people that I tend to look towards and think, “yeah, I can do that too”. There’s no reason I shouldn’t be able to.
 

 

Alaina felt that no one had really understood the impact of having a prolapse.

I remember the kind of like bursting into tears in one, kind of one memorable GP appointment and I look back on this now and think, I just wondering if she was just uncomfortable with somebody crying. But she just looked at me like “What’s the problem?” Like so matter of fact as if I was just kind of like a robot in front of her or something and then went onto tell me about how like her pelvic floor was okay because she’d had a baby, but she’d used this machine afterwards with like the guidance of a physio, so she was alright. I was like, I can’t believe you've actually just told me that story. When you've got somebody in front of you crying their eyes out because they feel like their life is over. And I remember saying to her, you know, like I’m thinking about it, I’ve heard that you can have a pessary and she was like, “Well, you know what, I’m not an expert in this area, but no you can’t.” And I was like, “Oh, but it’s—I read this kind of like you know, research or I’ve read this kind of paper” and she was like, “No, no, you can’t” and she kind of proceeded to argue with me and I was thinking, this is just really weird. You know, it’s like you’ve just told me that you don’t know enough about this area, but she didn't offer the kind of like seek any further advice or anything like that or yeah, so I think I found like how healthcare professionals either varied from being really dismissive like I saw somebody else and I was seeing them about something else, but she was a gynaecologist and she, I said, I haven't lifted anything since having this diagnosis and she was like, “Oh god, I’ve seen much worse, it’s fine. Yeah, yeah, quite high up your cervix, don’t worry too much”. Yeah, so I just, I felt they were very dismissive, very like reductionist. Did not look at the whole piece at all. You know, it was just, I felt like a piece of meat on like the table to be honest with you.
 

 

Online research gave Alaina access to people’s views on prolapse around the world which helped her to change her perception of what she could to do with prolapse.

There’s a whole heap of people on the internet that I came across. People that had second children, after like a prolapse diagnosis. You know, I communicated kind of like my private messaging people. There was another person who had a baby who had a prolapse. And to me, the whole thing that I found so important was around me rewriting like the narrative around it. So, I would see people say like, I need a pessary for running. I take it in and out. I’ve used a pessary when I was pregnant. You know, yeah, I had another baby and it got worse and actually my symptoms are all under control still.
 
And so, for me, it was just, it really shifted the narrative around actually you can lift heavy. There’ve been like you know, why are people telling people not to lift when a new mother has to lift a pram and then you start to look at the kind of guidelines and think, yeah, they’re completely arbitrary like what does heavy lifting mean? You know what’s heavy to one person isn’t gonna be heavy to another.
 
Yeah, as I say, they’ve been life-saving for me and probably the biggest help on my kind of journey. So, I would Google prolapse and it always comes up with this lady in Australia, this physio who would be doing like really gentle exercises. You can’t lift. You can’t cycle. You can’t run. You could like, you can cycle, but you can’t stand up on your bike or anything like that.