Sharon

Age at interview: 40

Brief Outline:

Sharon manages pelvic organ prolapse and stress incontinence with pelvic health physiotherapy and mindful exercise. She has struggled with feeling listened to by health professionals and has been given conflicting advice that has made it difficult to manage her symptoms.

Background:

Sharon works full time in fundraising and philanthropy who lives with her husband and three-year-old child. Sharon grew up in Canada and now lives in the UK, describing herself as White British.

Conditions: pelvic organ prolapse, stress urinary incontinence

More about me...

Sharon began experiencing stress urinary incontinence following a difficult vaginal delivery which had involved several hours of pushing and an episiotomy (a cut in the area between the vagina and anus, called the perineum, during childbirth). The midwife had advised Sharon to avoid pelvic floor exercises and allow time to heal. At her six week postnatal check, Sharon was taken aback by her GP’s hesitance to examine her scar. Sharon had to “insist” before the GP gave her a “very cursory” external examination. Looking back, Sharon feels that the lack of an in-depth internal examination limited her ability to understand and manage her health.

Sharon first noticed incontinence issues when she returned to running six months post-partum. At first, she had thought that running would strengthen her pelvic floor and resolve the issue. However, her bladder issues continued. When Sharon returned to work, she was alarmed that her incontinence was “affecting work me”. She returned to her GP for advice and was diagnosed with a bladder prolapse. The GP referred Sharon to an NHS pelvic health physiotherapist and the gynaecology department. Sharon had to wait a “very long time” to see a physiotherapist and found the appointment “disappointing” based on the lack of holistic advice. Comparing her experience with the physiotherapy provided for a calf injury, Sharon felt let down that “just because my vagina’s injured, I’m not getting the help I deserve and need”

During the Covid-19 pandemic, Sharon experienced a miscarriage, which she felt caused her pelvic floor to weaken further. Sharon described a feeling of “pressure” and could see that her cervix had descended but was unable to receive medical confirmation of this. Sharon was struggling with day-to-day activities like buying groceries, and was worried that “it’ll have to get worse” before she got any help.

Sharon continued to feel that something wasn’t right and chose to seek private care so that she could get help sooner. The physiotherapist confirmed her suspicion that her uterus had prolapsed and diagnosed her with stage 1 prolapses of the uterus and bladder. Although this was “hard news”, Sharon felt “quite thankful” to have her diagnosis confirmed. Sharon was instructed to avoid prolonged standing and walking, which was “quite a blow”, as this made her fearful of movement.

Sharon paid to see a urogynaecologist, who confirmed the physiotherapist’s diagnoses, but who disagreed with the advice to avoid activity. This time, she was advised to “just get back to life”. Sharon really appreciated that the urogynaecologist examined her while standing and lying down, which gave her a more of a “full picture”. She was also reassured that her back and hip pain was not likely to be related to the prolapse. Leaving the appointment, she felt “much better” and found that her back pain resolved itself as she began to feel more positive.

Sharon sees her pelvic organ prolapse and incontinence issues as a “lifestyle thing” and is determined to “learn to live well” with them. Through the internet, Sharon was able to find online pelvic health physiotherapy programmes which were “wonderful” and “very holistic”. She found success in strengthening the pelvic floor muscles and is also feeling safe to move her body again. At this point, Sharon feels “whole again” and stresses that “things can improve”.

Sharon describes good health as empathetic and holistic: care which takes a person’s lifestyle into consideration. She feels that medical care is “so lacking after you give birth” and is concerned that the system is “failing women and not supporting them enough with postpartum”. She encourages women to see their GP if things feel or look abnormal, and to ask for a second opinion if they do not feel listened to. Sharon previously struggled with being unable to be “the active mum” that she wanted to be. However, she describes how she has overcome this by learning to re-write some of the limiting stories that had been impressed upon her.

Sharon thinks her prolapse was caused by childbirth and lack of support for postpartum rehabilitation and recovery after birth.

I am learning to live well with pelvic organ prolapse now and I have Grade 1 cystocele, rectocele and a uterine prolapse and I believe it was childbirth-related and also just a lack of support for postpartum rehab and recovery. It is funny when I talk to different health professionals, where it seems like a prolapse hot potato when you say it was probably because of these factors for my birth and people are quite quick to say actually it’s the pregnancy and the pressure of pregnancy and you’re an older mum but I think to my mind it’s very directly related to the birth experience I had. So I was, I had a few risk factors that put me more likely for developing prolapse. I was an older mum at 37, I had a larger than average baby but not, not massive. He was eight pounds six ounces so not, not huge and but I did have a very long pushing stage. I had a vaginal delivery. No instruments fortunately but I was on my back in a lithotomy position which wasn’t ideal and I ended up having an episiotomy which was I think necessary given the cascade of interventions I already had but again not ideal so that led to weakness in the pelvic floor.
 

 

Sharon has found a more accepting way of living with prolapse which focuses on healing, rather than fixing, herself.

You know, I’m not gonna be fixed in the sense that I thought I was for when I was first diagnosed I was thinking, ‘I need to be fixed’ and now I’m thinking, ‘I’m not fixed but I feel healed and I feel whole again but that’s’ that’s thanks to finding a more holistic approach which is pelvic health exercises, Kegels, movement, the right kind of movement, strengthening the muscles around my pelvic floor, knowing how to safely move and stand and lift things and squat, not being afraid when I get a cough or a cold, you know, I was told, ‘Don’t get a cough or a cold’ which is terrible advice because we live in the world, we are going to get coughs and colds. I was told, ‘Don’t lift your baby,’ awful advice because you have to lift things and so I know, I have developed the tools and I and I’m stronger now but it’s taken a long time, I’ve cob-, cobbled that together from, from different people I’ve found mainly virtually because and I’ve finally found a really fabulous in-person physio but it’s taken some time.

 

Sharon thinks it’s important to not rush or pressure yourself into doing anything you’re not comfortable with. This doesn’t mean that you have given up forever, instead it’s about saying “not right now”.

So there is that and then as you kind of get better there’s a lot of people saying, you know family might say, “of course, of course you can play tennis or do this activity and you just have to know your boundaries and just say, you know, “Maybe in future but right now I don’t feel, like I’m not gonna do that right now but thanks,” [laughs]. You know, because people I think with any kind of, they don’t really realise it’s a, it’s a kind of a chronic condition you’ll have if you’re not a candidate for surgery. It’s a condition you have to be mindful of, it’s a lifestyle, you know, and you can get back to those activities you love but there might be times when you’re doing rehab and recovery and getting stronger and you don’t wanna get back to things you used to do right now and you probably do have to just keep telling people, “Yeah maybe next season I’ll get back to that but not right now.”

 

Sharon felt she had the “headspace” to see a doctor about her symptoms after returning to work from maternity leave.

I developed urinary incontinence and became aware of it when I started running about six to seven months but I think it was starting to be an issue about four to six months postpartum and it was only when I went back to work that I sought help because I had a few incidents in the office where I stood up and I just had a total loss of lack of bladder control and I think for me at thirteen months postpartum I’d act-, you know, I had some headspace because at work, you know, you, you can go to the loo by yourself, you can make coffee by yourself, you can think about yourself a bit more and I thought, ‘oh I need to go see a doctor about this because it’s affecting, you know, work me.’ So it, it’s probably a common story, it took me far too long to seek help but I, I think if I had had a better conversation at that six-week postpartum check about what to be mindful of and aware of, I would have been better served and probably would have sought help sooner.

 

Sharon requested to be examined standing up, in addition to lying down, to get more information about her prolapses.

I finally did see an NHS gynaecologist, I was examined lying down and I, it was part of a med student clinic so I didn’t mind having, a med student having a go too and the consultant gynaecologist was kind of in the background and when we had the chat after I said, “Oh I forgot to ask to be examined standing up,” and she said, “Oh we used to do that, we used to put women in to all kinds of standing positions and squats while we examine them but we felt it was undignified,” and I was so shocked that she said that but for me it was such a teachable moment because I had this med student in the room and there were, the session was being recorded for med students and I said, “Actually, what I think is undignified is having waited for months and months and months for this appointment and leaving here like I don’t have a full picture of what’s happening in my body?” and for some of us with prolapse, gravity has a big role to play so yes give women the option of being standing. Some of them won’t be comfortable with it but for me, yeah, I do wanna know does my, does my prolapse grade change if I’m examined when I’m lying down versus if I’m examined when I’m standing, that is useful information for me so I don’t feel it’s undignified, and I don’t think a health professional should be using that language. So yeah, I was pretty proud that I said, “Well undignified for who?” [laughs].

 

Sharon felt unsupported by NHS physiotherapy services, so she paid for an online physiotherapy programme.

And because I wasn’t getting any support through the NHS, I finally found some wonderful online programmes run by pelvic health physios that had a very holistic approach that most of them do say, yes Kegels but it’s not just about Kegels and, and you can overdo it with Kegels. I’m lucky I don’t have pelvic pain or tension and they work for me but the thing that has improved was actually doing these programmes and strengthening all of the muscles that surround and support the pelvic floor and stepping away from that fear of movement. Because I remember during Covid getting, finally getting through to my old NHS physio and I’ve said, “I had it, I think I have a uterus prolapse now too,” and she said, “Well let’s talk you through a Kegel, how to do a Kegel over the phone,” and we did that and I already know how to do that and she said, “Well now you should do yoga,” and I just didn’t quite get that like before when I just had a bladder prolapse you said don’t do yoga, now things have got worse, you’re telling me to do yoga and explaining all these poses over the phone. It was just rubbish.
 
So there are some really good courses online and I think at the moment with what NHS women’s health being what it is, you really have to, to go online and invest in one of those programmes or find these physios on Instagram, they do a lot of free videos as well and, and kind of supplement the advice you’re getting yourself from, from the NHS.

 

Although Sharon used to shy away from talking about her prolapses, she now doesn’t mind “dropping the P bomb into conversations”.

In kind of the first year postpartum but I just wanted help and I just didn’t get, understand why would nobody, the health professionals look at my vagina. Why would I say I think someone’s wrong, I couldn’t get help and I just kept thinking if I had tore my calf muscle, if I had ACL knee injury, I would get help so, you know, I didn’t mind having those conversations about prolapse and saying on the, on the phone, you know, “I don’t, I don’t mind if it’s a male or female health practitioner, I just want someone who’s really knowledgeable about women’s health to please look at my vagina.”
 
So early on I got quite used to being like, “This is just so ridiculous.” You know, I personally had lots of conversations with friends about their own rehab with knee injuries, calf muscle injuries, stood in coffee queues hearing all about it so I don’t mind dropping the P bomb into conversations. If someone has said you know, “Wow, you really snapped back from pregnancy,” I say, “Oh thank you, but I actually have a pelvic organ prolapse so I actually haven’t snapped back, you know, but I’m managing it okay,” and that often just leads to really interesting conversations whether it’s men or women.
 
It is a more common issue, you know, you’re not alone, it can feel like you’re really alone and you know, you don’t need to be open about it. It’s your body, it’s up to you, how you feel about it but I think you do need to find ways of letting people know what your needs are now so yeah I felt, I just think it’s another part of my body and I don’t mind, I don’t mind talking about it but I know, I know some women struggle talking about it and it is private, it is personal.
 

 

Sharon feels that she has gained a lot through finding women with shared experiences on Instagram.

But also having friends you can talk to about this stuff does really help and for me, I’ve had a lot, I have friends from ‘prolapse land,’ I call it, which are friends I’ve made through Instagram and, you know, you can set up a private Instagram account and find women who are speaking about it openly and then ask them, ‘What’s worked for you? What do you think of this programme?” because you’re not alone and, and, you know, I think we, there’s a lot we can learn from each other and it’s a shame if we don’t feel we’re able to have these open conversations.

 

Sharon felt “broken” by her prolapse at first, but now feels “whole” again.

We all deserve to live a vibrant active life and to feel lifted. You might feel broken right now, but it is possible to feel whole and to feel heal-, healed again and to minimise your symptoms.
 
You know, my prolapses are the same grade they were when I was first diagnosed when I was feeling really broken, really damaged, really down about it and I found a good healing team, I found a really positive pelvic health and wellness plan I put together for myself and I don’t tend to have those symptoms anymore and I do feel whole again so it is possible.