Amy has a grade 2 cystocele (prolapse of the bladder into the vagina) and rectocele (prolapse of the rectum into the vagina). Her cystocele was diagnosed in March 2020; about five months after giving birth, she went for a smear test and was told she might have a “very mild” prolapse, but within a few hours, it was a “very apparent severe prolapse”. Amy was also diagnosed with a rectocele six weeks later. The main symptoms are discomfort, heaviness, and feeling that something is dropping into the vagina. She hasn’t experienced urinary incontinence. Amy also has perineal descent, and a mild uterine prolapse (when the uterus slips down into the vagina).
Amy has Ehler Danlos syndrome (EDS) which affects her connective tissues. She has since learnt that a smear test can trigger prolapse in people with EDS: “it certainly would have sped things up, [but] it probably would have happened anyway”. Amy now also knows of various treatment and medical management options available in pregnancy, birth and postnatally which might have helped, but were not offered to her. Amy had asked her midwives if there was anything related to her EDS that was important to know but was “fobbed off”.
After developing a sudden prolapse, Amy contacted her local urogynaecology team directly. She had a telephone call with a physiotherapist and was told to do pelvic floor exercises. She then had a face-to-face physiotherapy appointment but was told that she was doing the exercises fine and discharged, which she thinks was “exceptionally rubbish”. Amy then saw a urogynaecologist, but he seemed distracted, didn’t examine her correctly, and said she should, “Hang on in there for 15 years and then have a hysterectomy,” which shocked Amy. She was supposed to have a follow-up appointment with the clinician, but it was cancelled three times – at which point, she sought out a private urogynaecologist who specialised in prolapse in patients with EDS.
In terms of treatment, Amy had a ring pessary fitted by a nurse at her GP practice but found it wouldn’t hold because of her perineal descent. She then had a cube pessary fitted by the urogynaecology team but struggled to get hold of them when she had a problem with it. Amy ended up making an appointment with a private physiotherapist, where she learnt how to put the cube pessary in and out herself. She was worried though about suction and possible damage to the supporting tissues and has since been using a Gehrung pessary.
Amy has privately seen an urogynaecologist, physiotherapist, osteopath, and a practitioner of myofascial release (a type of physical therapy) – all of whom had extensive knowledge and/or were willing to learn more, looked at “my whole body”, and really listened. However, the “financial cost is quite substantial really, ‘cos I’m not a huge earner”. She also saw a private counsellor but stopped because of the cost. Amy feels she has “no financial security anymore”, especially because she anticipates needing future surgeries which she would prefer to have privately. For example, Amy has been advised about the risks of prolapse surgery for people with EDS and that synthetic material (rather than natural tissue) would be necessary: “I go from thinking ‘yeah, I’d have it’ to ‘no, I wouldn’t’ …day to day”.
The impact of Amy’s prolapses have been devastating for her: “I can’t be the ‘run around, busy, active, carrying loads of stuff, playing loads of games’ person that I was”. Though she has “adapted”, it is upsetting “to realise it could’ve been prevented” and that “I’ve got a lot of my life left to live [yet] I’m almost at the last resort” with treatments. Amy and her partner would like to have another baby; she knows that pregnancy might make her prolapses worse but feels this is inevitable anyway so “I might as well just have something nice”. She has researched how to prepare and support her body, including core strength, before and during pregnancy, and plans to seek specialist advice about birth options.
Amy would like medical departments to be more joined up, so that pregnant women with additional conditions get better information and support. Much of Amy’s information has come from online research and support groups, as well as from private clinicians, which she thinks highlights that NHS healthcare services are not meeting the needs of patients like her.
Amy has Ehler Danlos syndrome (EDS), a condition which causes very flexible joints and stretchy or fragile tissue, and thinks that a cervical smear test about five months after giving birth contributed to her organ prolapse.
Amy has Ehler Danlos syndrome (EDS), a condition which causes very flexible joints and stretchy or fragile tissue, and thinks that a cervical smear test about five months after giving birth contributed to her organ prolapse.
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In terms of triggers, I was told by the gynae nurse who I saw at the hospital that it was a combination of my, I have Ehlers Danlos syndrome and hypermobility, and I was told it was a combination of that and a traumatic birth. I lost a lot of blood during birth, I tore quite badly, internally, not externally. But they said it was a combination of that and then the connective tissue basically weakening over time.
And then in February, so fast forwarding a little bit, but I saw another urogynae, but I told him about the smear test, and he said he’d seen it before, where women get prolapses after smears, who are, who have connective tissue disorders. He specialised in people with connective tissue disorders and he said the problem is with you-, when you have a smear, people, they try very hard to do it like straight and everything, but sometimes if they go off at a bit of an angle, or they stretch too far, there can be a problem. Not for most women, but if you have a connective tissue problem, it can basically you’re overstretched, and then if you’re likely, if you at that point you’re susceptible to a prolapse then it might happen. What you should be do is told to go away and like sit-, lie down basically and do loads of pelvic floor exercises. But obviously I didn’t do that, after the smear test, I think I went for like a seven-mile walk, you know [laugh]. I went for a stroll and then that was exactly the opposite of what I should have done. And I didn’t do any pelvic floor exercises or anything. So he said that was likely a trigger. Or it certainly would have sped things up, it probably would have happened anyway, but that would have, you know, got me there faster.
Amy’s partner has taken on more household and childcare tasks, which she thinks he finds “a bit of a struggle”.
Amy’s partner has taken on more household and childcare tasks, which she thinks he finds “a bit of a struggle”.
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Obviously my partner has to do more as well, so he has to carry my-, cos I live on, we live on the top flat, so he has to carry my son up and down the stairs and stuff, and help, like if we go out the house, I need help getting out, I can’t get out of the house. I can get back in, cos he can walk up the stairs, but we can’t get out. And I can’t get out-, I can’t, the pushchair, I can’t get the pushchair out and, you know, I can’t, I need somebody to like constantly do things for me. And I think my partner finds that a bit of a struggle. ‘Cos he has to do stuff, but I can’t do it. And it’s like, no, there’s no way ‘round it, it’s just how it is. And I think it’s, I think my partner just feels sad for me really. I think that’s, I don’t think it’s caused a rift or anything, it’s just like he feels sad for me.
Amy, who has prolapse, was advised not to lift anything heavy. This impacts on everyday decisions, like what to pack in her bag, and bigger things like the type of mum she can be.
Amy, who has prolapse, was advised not to lift anything heavy. This impacts on everyday decisions, like what to pack in her bag, and bigger things like the type of mum she can be.
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To be told immediately, “Well you need to stop breastfeeding, and you can’t pick up, don’t pick up your son,” that you can’t pick him up. “Or sit with him, play with him on your lap.” And you can’t carry anything either, like, in the end I had to speak to work because I can’t pick up anything, so it’s been, and not being able to really, or even to go to, if I go into the shops I have to really seriously think about what like, if I want to take a bottle of water in my bag, that means I can’t carry something else. You know, it’s really, there’s a lot of consideration. And it’s, and I can’t get like, I can’t really run around. I can’t jump up and down. You know, I can’t go crazy, I can’t do a lot of things. I can’t like and how I see my future of being, I was very active, and I still, I do a lot of walking now, but I can’t be the ‘run around, busy, active, carrying loads of stuff, playing loads of games person that I was, because it’s just, the long-term consequences of a small trip up are too big.
Amy’s feelings on treatment options, including surgery, vary from “day-to-day”.
Amy’s feelings on treatment options, including surgery, vary from “day-to-day”.
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So, I don’t, basically I don’t know [if I want surgery]. I go from thinking ‘Yeah, I’d have it’ to ‘No, I wouldn’t’, but then that depends on how I feel at the time. I had a really bad cough a few weeks ago, and I’d got myself where I actually felt pretty good physically, and then it, like although my prolapse was graded 2 yesterday, it’s like it was almost all the, rectocele was like a 1-2 and now it’s almost a 2-3, like it got a lot worse. And then I felt quite bad. Like I hadn’t worn a pessary for a while and I’d been feeling really good, and now I can’t imagine not wearing a pessary. And so that changes how you feel about it day-to-day.
Amy saw an “unsympathetic” and unhelpful urogynaecologist. She asked to see someone else next time, but this didn’t happen. At the second appointment she felt that the specialist lacked knowledge about pessaries.
Amy saw an “unsympathetic” and unhelpful urogynaecologist. She asked to see someone else next time, but this didn’t happen. At the second appointment she felt that the specialist lacked knowledge about pessaries.
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I don’t think he checked me standing up, or on my side, ‘cos on your side is a good way to check. I think he just checked me on my back. He I mean he basically, he said to me, “Oh what you want to do is hang on in there for 15 years, and then have a hysterectomy.” And he actually said, “Hang on in there,” said, “Hang on in there for 15 years and then have a hysterectomy.” And I don’t even have a uterine prolapse. You know. I don’t even, in fact, and he didn’t like give any explanation, he was like, “Look, that’s the best thing for you to do.” And that’s, that’s the bit that stuck with me. I did ask about having Ehlers Danlos-, Danlos, or being hypermobile and he said he didn’t really know much about that.
And I remember, I also, I’d been thinking about doing, going back to doing like more Pilates and stuff there, and I remember he said he didn’t, he couldn’t advise on that either. He didn’t know anything about that. I think I actually contacted the physio again after that, and I might have asked her, and I think she said to me, she said that that would be fine so I did get her feedback on that. But I just thought he was a complete arse to be honest [laughs]. He was just very, I mean this is, I was sitting there telling him this has destroyed my life, and he was very unsympathetic.
[At the follow up appointment], I went in and it was bloody [urogynaecologist name], it was a waste of time. Like he just asked me questions. He asked me questions about my pessary. And he was like, “Oh I think I got more out of this than you did today.” And I was like well yeah, I took the morning off work to come and I was expecting to see the female urogynae, and I ended up seeing him and he just made some notes about my pessary, which was, might help other people, which is a good thing but it didn’t help me [laughs].
