When I experienced pelvic organ prolapse after giving birth to my daughter in 2019, I had no idea – and neither, seemingly, did my doctors – how much my life was about to change. Every new “surprise” – from not being able to use tampons, to an almost constant cycle of UTIs – felt all the worse for my lack of mental and practical preparation.
This shouldn’t be the case: around a half of all women will have some degree of pelvic organ prolapse in their lifetime. There are four types: vaginal, uterine, bladder and rectal, all of which involve one or more pelvic organs descending into the vagina. Often, it creates an internal bulge, but when it is more progressed it can be externally visible too. Prolapse being so varied – and, crucially, understudied – makes for a great proliferation of potential symptoms which are, in my opinion, generally underplayed in healthcare literature. Living with an organ descending into your vagina is frequently described as “uncomfortable”, as though comparable to wearing a too small pair of jeans. The NHS website describes what can be truly debilitating stress urinary incontinence (SUI) as “problems [with] peeing”. What little information is available on prolapse seems designed to remind you that what you’re experiencingis no big deal!But for many of us, that is far from the case.
My own prolapse wascaused by childbirth, but it can also be brought on by injury,menopause, age, or for simply no (as yet known by medical research) reason at all. You might have none of the symptoms and no idea you even have it; conversely, you might have all of the symptoms and yet struggle to get a diagnosis. Six years on and, while I have a general diagnosis of “pelvic organ prolapse”, I do not knowwhichprolapse I have, to what degree or whether or not I have multiple prolapses. Though I’m far from content with this shocking lack of information about my condition, I – through necessity – focus on what Idoknow, to get through the day. Here is everything I have learned, and everything I wish I had already known about living with pelvic organ prolapse, before I had to.
When I was first diagnosed with prolapse, I didn’t think about the effect it might have on my sex life. But, as it turns out, this is probably the area of my life that’s been most negatively affected. Yes, I have stress urinary incontinence (SUI) – but when is theworsttimeto lose control of your bladder? Yes, I have pain in my vagina – but when is theworsttimeto feel pain in your vagina? At 29, and after a couple of nightmarish attempts at intercourse, I thought I’d never be able to have penetrative sex again; the pain was more than I could bear.
With time, however, I realised that positioning was key. Having sex on my side so that the penis would not penetrate so deeply made a huge difference. Of course, this is no good if you get off on deeper penetration – for this, a friend advises placing a cushion under your bum, to lift your pelvis up and cause your cervix to recede. We both agree that lube is a huge help in encouraging the penis to “find the path of least resistance”. And as for the SUI? I pee beforehand, even if I don’t think I really need to. For others who may be embarrassed about losing control of their bladder, I’d recommend having sex in the bath or lubed up to the nines – both blessedly simple ways to disguise bigger or smaller leaks.
While prolapse shouldn’t affect your period, your periodcanaffect your prolapse. I certainly notice an increased heaviness in my vagina and, in the days before my period arrives, I feel particularly reluctant to overexert myself physically. I now experience cramping more intensely in my vagina, perhaps due to the descent of my uterus, and I have to apply heat pads to my vulva rather than abdomen (over clothing, to prevent the risk of burns). I have found using tampons and Mooncups next to impossible; my prolapse simply squeezes them out almost as soon as I insert them. Returning to pads after a decade of not using them was disheartening for me personally, and I have yet to find a brand of period pants I can get on board with. All of this caused me to turn to the coil – which has, at least, helped to alleviate my physical symptoms. It’s not for everyone, though, and while I did not experience pain with insertion myself, I would recommend anyone concerned about this to ask their healthcare provider to use a local anaesthetic gel or spray (pain relief is not routinely offered for IUD fittings).
These days, it is generally only in the lead-up to my period, or after some particularly physical exertion, that my prolapse affects my mobility – but this was not the case for the first year or two. On the worst days, merely standing up felt like a monumental effort – I’d have to squeeze my pelvic floor muscles as hard as I could to combat the sense that my cervix was going to tumble out of me. Physiotherapists told me I shouldn’t pick up my baby– almost laughably impossible advice for a new parent – which left me questioning every cuddle. Friends who like to run took news of their prolapses particularly hard. One found herself unable to run 10 metres without losing full control of her bladder; incontinence pads were a gamechanger, once she was able to get past the stigma. Another option is a pessary – a small ring inserted into the vagina to help support the organs above it.
A risk that comes with pessary use, however, is the increased chance of vaginal infections. This is due to the pessary potentially introducing bacteria into the vagina, but prolapse in general is likely to increase infections. UTIs are the most common, as the descended organs can prevent the complete emptying of the bladder, or create small leaks and pooling of urine, which is a breeding ground for bacteria. After penetrative sex, residual semen can become trapped in the pockets created by the prolapse, also creating fertile ground for infection. It may seem that the answer to these problems is more rigorous hygiene standards, but introducing harsher products and rougher cleaning habits can actually have an adverse effect on the vaginal ecosystem. I have yet to come up with a better solution than regularly purchasing over-the-counter vaginal self-testing kits and requesting targeted medication from my GP, if needed. This is time consuming and expensive, and I hope that GPs will consider offering free self-testing kits for regularly occurring gynaecological infections in future.
A number of healthcare professionals informed me that if I don’t want my prolapse to get any worse, I should not get pregnant again. Avoiding vaginal birth by having a caesarean section wouldn’t help, in my case, as the pressure put on my pelvic region by carrying another baby could be enough to greatly worsen my symptoms and future outlook. Surgical repair will only be offered to me once I’ve decided not to get pregnant again.
It’s important to note that not all sufferers of prolapse are told that they should not become pregnant: it is judged on a case-by-case basis, and if you are prepared for your prolapse to potentially worsen then, of course, you can always go ahead with it, no matter what you are advised. But having to calculate that risk can be difficult for many. There is growing evidence to suggest that pessary use in pregnancy for those with advanced prolapse can lead to best post-birth outcomes, but more research into this and other interventions is sorely needed in order to provide as much reproductive choice as possible.
When I was first diagnosed with prolapse, I didn’t want to leave my bed. Partly, this was because every step I took felt like it was making things physically, medically, worse. But mostly, it was because of the mental toll that having a prolapse had taken on me. Doctors seemed to barely understand my condition, and shrouded it in euphemisms. I had little idea what the rest of my life was going to look like, and I suddenly – after having a baby – felt entirely alienated from my body and the child I was advised not to pick up. This is, of course, fertile grounds for postnatal depression.
Another demographic affected by pelvic organ prolapse are those experiencing menopause – people who, like those who have just given birth, are subject to vast hormonal fluctuations and are therefore more vulnerable to poor mental health. Understanding the psychological impact that gynaecological conditions can have must begin with understanding a key element of medical misogyny: that women’s health conditions are almost universallyunderstudied, undertreated, and underdiagnosed. Women find themselves experiencingmore pain, and with less likelihood of diagnosis and treatment.
This can feel frustrating, like the system is stacked against us. But it is important to acknowledge just how many people are in the same boat; to campaign for better treatment options, and to work together to destigmatise conditions that are not talked about enough. Sharing my prolapse story with others, and then having so many people share their experiences with me, helped me to shed the shame I had initially felt at my body’s betrayal. Talking about how to achieve better sex, or how to manage my period, gave me a toolkit with which to move forward. We still need meaningful, institutional reform but, for now, I’m grateful not to be too ashamed to wear an incontinence pad if I need to. And nor should you be.
The Stitch-Up: How Medical Misogyny Harms Us All, by Emma Szewczak with Dr Andrzej Harris, is published by Vintage on 29 May (£22). To support the Guardian, order your copy atguardianbookshop.com. Delivery charges may apply.