Episode 176 Pelvic Girdle Pain (PGP) - a chat with Sarah

Join me as I talk with Sarah Fishburn,  who shares her deeply personal journey through three pregnancies plagued by pelvic girdle pain (PGP). Sarah opens up about how the lack of adequate information and support during her experiences inspired her to create the Pelvic Partnership, an organization dedicated to educating and empowering women suffering from PGP. Together, we dissect the often misunderstood mechanics behind pelvic pain and emphasize the critical importance of early treatment and challenging common misconceptions.

 Our discussion critiques the standard medical advice of using support belts and physiotherapy, advocating for thorough hands-on assessments and treatments. Sarah shares insights on the effectiveness of a comprehensive approach that includes muscle release and psychological support to address the mechanical dysfunctions of the pelvis for effective long-term pain management.

Discover the challenges many face when accessing manual therapy and sports physio within the NHS, and why patient advocacy is more crucial than ever. We provide practical advice on finding reputable private physiotherapists and discuss funding options for those who can’t afford private treatment. Finally, we address the profound impact of PGP on daily life, its psychological and social ramifications, and the vital need for a holistic approach to postnatal care. Sarah's story of resilience and advocacy serves as a powerful reminder that with the right support, women can reclaim their lives from the grips of pelvic pain.

Want to know more?
https://pelvicpartnership.org.uk/
https://www.youtube.com/watch?v=ruongqOgNkg
https://pelvicpartnership.org.uk/wp-content/uploads/2023/05/PGP-Toolkit-V6.pdf
https://pelvicpartnership.org.uk/healthcare-professionals/
https://pelvicpartnership.org.uk/pelvic-partnership-wins-prize/
https://www.sciencedirect.com/science/article/abs/pii/S0266613813000107?via%3Dihub

Thank you all for listening, My name is Florence Wilcock I am an NHS doctor working as an obstetrician, specialising in the care of both mother and baby during pregnancy and birth. If you have enjoyed my podcast please do continue to subscribe, rate, review and recommend my podcast on your podcast provider.
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Chapters

• 0:00 Understanding Pelvic Girdle Pain
• 13:14 Mechanical Treatment for Pelvic Pain
• 22:49 Accessing Manual Therapy
• 30:58 Addressing Impact of Pelvic Girdle Pain
• 46:20 Empowering Birth Experiences and Pelvic Health
• 51:15 Empowering Women With Pelvic Pain
• 1:03:52 Supporting the OBS Pod

Transcript

Florence: 0:00

Hello, my name's Florence. Welcome to the OBSPod. I'm an NHS obstetrician hoping to share some thoughts and experiences about my working life. Perhaps you enjoy Call the Midwife. Maybe birth fascinates you, or you're simply curious about what exactly an obstetrician is. You might be pregnant and preparing for birth. Perhaps you work in maternity and want to know what makes your obstetric colleagues tick, or you want some fresh ideas and inspiration. Whichever of these is the case and, for that matter, anyone else that's interested, the OBS pod is for you. Episode 176 Pelvic girdle pain a chat with Sarah. Sarah, Welcome. I am absolutely delighted today to have a guest, Sarah Fishburn, and she is the chair of the Pelvic Partnership that she has really pioneered through the Pelvic Partnership in trying to educate and support women and also help educate professionals. Sarah, welcome to the OBS pod.

Sarah: 1:35

It's lovely to have you here and perhaps you could just briefly tell us a little bit about yourself before we get stuck in briefly tell us a little bit about yourself before we get stuck in, okay, well, thank you so much for inviting me to be part of this. I'm really delighted to be here. Yes, I chaired the Pelvic Partnership, as you said, and that came about as a result of having three pregnancies, each with PGP, and really struggling to find information, being told, told you know, the goalposts basically kept moving. When I was pregnant, I was told it was normal aches and pains, it was my hormones, nothing could be done. And then, when I'd had my baby, I was told it would take two weeks, six weeks, three months, six months a year to get better.

Sarah: 2:22

And when I was a year postnatal, I remember having a conversation with my GP who told me, when I'd had the baby and couldn't walk and was in a lot of pain, that I was going to get better in two weeks.

Sarah: 2:37

She said, oh, maybe you're just one of those women who doesn't get better.

Sarah: 2:41

And that was a real light bulb moment for me because I thought, hang on a minute, you're the same person and this is a GP who'd known me for a number of years You're the same person who told me a year ago that it was going to be better in two weeks, and now you're saying I'm never going to be able to walk normally again and that that's okay. And so I'd sort of met quite a lot of women along the way who were in a similar position. You know, we were all struggling to walk and we were all just being told it was normal. We were all trying to live a normal life, and it's really difficult when you go to a toddler group and you can't sit on the floor and you can't chase your baby around, and so I didn't go to toddler groups because it was just too painful. So it was. It was through meeting other women and and having that kind of joint experience although all our conditions were slightly different that the pelvic partnership started.

Florence: 3:38

Wow, that's, I can imagine, really shocking as a young woman having a baby, suddenly your mobility changing so radically and then not being expected to recover. I definitely think when we were emailing in the run up to this episode, I was thinking, yeah, there have definitely been times in my career when I've told people, yeah, it's going to get better once you have the baby and it's hormonal and I definitely see women that really struggle. So I'm hoping this episode is going to be really useful for people. Tell us a little bit what is pelvic girdle pain?

Sarah: 4:25

So it's a fairly straightforward condition. It affects the joints of your pelvis. So you've got the symphysis pubis at the front and then two sacroiliac joints at the back of the pelvis which attach onto your sacrum and normally they all move just a little bit to allow you to walk, climb stairs, turn over, turn over a bed, do all those normal day to day things. And what happens with PGP is that one of the joints often one of the sacroiliac joints at the back gets a bit stuck, stops moving normally, and that has a knock on effect on the other two joints because they're having to compensate. So they move a little bit more and they get irritated and painful. Often it's the symphysis pubis at the front that hurts first because it's a smaller, less stable joint and whereas the sacroiliac joints at the back are big, solid joints with lots and lots of ligaments across them. So the consequence of that is it hurts and it gets more and more irritated the more you walk on it and then all your muscles start to join in because they're trying to keep you up against gravity, because you're trying to function. You're trying to do all the things that the lovely pregnancy magazines say you should do. You should be blooming in pregnancy, you should be exercising, you should be doing this, that and the other and you can't but but you're trying really hard to do it. So it just kind of carries on and on.

Sarah: 5:46

And at any stage in that cycle if somebody refers you to get somebody to have a proper look at your pelvis, work out which of the joints isn't working properly and treat it, you can break into that cycle and start to improve. So one of the pelvic partnerships key messages is don't just put up with it, go and ask for treatment as soon as you start to get symptoms, really because it's really treatable. It's really treatable at any stage in pregnancy and we talked about random numbers earlier on. You know the two weeks, six weeks thing. Often people will say oh well, you can't get it in the first trimester, or you can't get it in the first trimester, or you can't get it in the second trimester, or you can't get it in the third trimester. It's too early, too late.

Florence: 6:30

If anybody ever says to somebody that it's too something or other to treat, I always suggest we'll go and get a second opinion then, because they probably just don't feel confident in treating it and so it's definitely worth asking, asking for some help elsewhere yeah, I was looking at your website, the pelvic partnership website, and it really struck me that one of the resources you have on the website is a little leaflet on how to go and talk to your doctor or midwife, and it's so practical and sensible.

Florence: 7:12

But it also kind of gave me a real heart sink feeling that women have got to use certain language or really advocate so strongly to be heard, and I found that quite difficult as a health professional. But I can see it's necessary because, yes, when a woman comes, perhaps in the first or second trimester, I think as health professionals we can sometimes feel a little bit helpless in knowing, yeah, how, how can we get this treated? How can we best support the woman for the remainder of that pregnancy and and beyond? So did you produce that leaflet as a response, because people were really struggling to be heard?

Sarah: 8:11

absolutely yes, and one of the things I do for the public partnership is answer the telephone helpline. So I talk with a number of women. It's actually reduced at the moment because we've got now got facebook and instagram and lots of other things and other members of the team do that. So I tend to do the phone calls because I'm comfortable with that and so many women will talk about their experience and they'll say you know, and I've told my gp and they don't understand, my midwife doesn't understand, and so we talk through.

Sarah: 8:43

I really what I've just talked about now and then a bit about treatment, which we can come on to. But they say that one of the most useful things is actually having it validated, that it does exist, it's not just in their head, and that it's okay to go and ask for another opinion and it's okay to go and say, actually I really can't walk, I really have got a problem, this is pain, this is not just something that that I'm imagining and I need your help to get treatment. And please listen, and and I think one of the things that they find helpful from talking on the helpline is is that kind of validation and list, talking to somebody who's actually had an experience of PGP and we're not all the same, you know, we all have slightly different symptoms, but we do understand what it's like not being heard and being in pain for a long time and just not being not being understood.

Florence: 9:42

Um so yeah, yeah, I can definitely see it fitting with that slight pattern of women's problems that don't get listened to. You know, I, as you're talking then I was thinking a little bit about the episode I've done on hyperemesis and that kind of slightly old-fashioned thing of well, if you just made a bit more effort, pulled yourself together or whatever, you'd deal with this. This is a normal pregnancy symptom and yet I see women come to clinic, on crutches maybe, and really struggling, and there'd be no other point in life.

Sarah: 10:27

or when someone came to see you and they were, they'd lost their mobility so radically that you'd be ignoring it no, absolutely yeah, or just telling them that you know, I remember in my second pregnancy I was about 20 weeks and I needed crutches and the midwife said, oh, it can't be PGP because that doesn't happen till the third trimester. And well, yeah, but I can't walk, so I don't care what you call it, but actually, yeah, it is PGP. Yes, and another one was I was part of the pelvic partnership. I was part of the Maternity Service Liaison Committee so what's now? Maternity Voices Partnership for a long time and met a retired GP and I was on crutches and pregnant and he said, oh, what have you done to yourself? And I said, oh, I've got pelvic girdle pain. He said, well, if you girls will get pregnant and I was I was so angry I just had to walk away.

Sarah: 11:29

I just didn't have the words to to with that, so it. And when you're already, you know, pregnant, in pain, vulnerable, it's really hard to say what a ridiculous thing to have said, which is what I wanted to say. I just couldn't, I couldn't say it and I, you know I'm well, I've changed a lot. My personality has changed through having PGP. I used to be quite quiet and retiring and I'm still not terribly extrovert, I think.

Florence: 12:02

but it has made me a lot more confident to speak up for other people and say, actually that's not an acceptable thing to say yeah yeah yes, so one of the things that we say to women in clinic a lot is we talk to them about hormonal changes and the fact that their joints are just softening and loosening a little bit and that's partly kind of preparation for for giving birth. But the way we've just discussed things, the hormones are not the issue. Do you want to say anything about hormones and what is and isn't true about hormones?

Sarah: 12:47

yes, I mean, as you say, women. I would say 99.9% of women are told oh, it's all your hormones and that that's why they're told it'll get better as soon as you've had the baby, because your hormones will change then. But actually, if it was your hormones, no hands on treatment would work, because you know hands on treatment doesn't treat a hormonal problem, does it Hormonal imbalance? And? But there is, there is a subtle hormonal change and, as you say, you know your joints do change during pregnancy. But what? The theory is that?

Sarah: 13:24

What that does is it shows up an underlying imbalance in your joints. So you know, if you've had an old injury that you've functioned really well with, you know you might have injured your back at some point and you functioned fine when you weren't pregnant, and then you've got that slight hormonal change and it just shows up and irritates that underlying problem. So the thing you have to sort out is the underlying joint problem, not the hormones. But it also comes back postnatally. So often, when women's periods restart, they'll say oh, you know, I'll have a terrible week. My PGB is so much worse. Now my periods have come back and again it's that subtle hormonal change and it's just a really clear sign to go and get somebody to have a look at the mechanics of your pelvis and that will.

Florence: 14:14

That will generally sort it out that's really clear, that it's kind of unmasking that slightly existing issue yeah that's true of some other things in pregnancy, like you know. If I think about, I know it's different, but if you think about gestational diabetes, or hypertension. It's that little window that the pregnancy changes are just giving that glimpse into. This is a potential future or this is a potential issue that pregnancy is just unbalancing.

Sarah: 14:51

So that makes sense thinking about it like that yeah, that, yeah, it does.

Sarah: 14:56

and and the same with breastfeeding. You know, often women are told oh well, you know, as soon as you stop breastfeeding it'll go away. And it it doesn't, it doesn't make any difference. And again, there was a Scandinavian study where they looked at a lot of women I can't remember 46,000 springs to mind, but I might be making that up but a lot of women who'd breastfed or formula fed, and they found that women who breastfed got better, faster than those who formula fed. Again, I suspect there's a mechanical reason for that. I suspect it's because if you're formula feeding, you're having to go to the fridge, you're having to make up formula, all those kind of things. That's quite difficult if you're on crutches or struggling with a baby, whereas if you're breastfeeding, you tend to be with your baby and and so feeding is easier is not the right word, is it? But once you've got into breastfeeding, um, it's, the baby is is more accessible than than formula in the fridge in the middle of the night. Um, so, yeah, position is the main, the main thing. Um, for for feeding. And yeah, don't let anybody tell you that it's because you're breastfeeding that you're, that you're still having pain, but it is a really common myth that's really important to to bust, bust that myth, then yes, definitely yeah, it's

Florence: 16:25

yeah so if I think about my medical training, it's probably wayfully inadequate in this area. We would probably say, get a support belt and refer to physio. But physio may be, may be helpful. They may or may not be equipped to deal with it. So I think there's been a shortage of of women's health physios and maybe some of the women I would send would be sent to a class. Maybe they'd be given some basic exercises. So if you take that as maybe the standard kind of response people are getting at the moment, what would you be hoping they would get?

Sarah: 17:22

I think that is absolutely a standard response if you did a kind of straw poll across the country and it's sort of gone back to where it was when I had my babies, which is, you know, my eldest is now 25. So I've been doing this a long time and we went through a phase where people started to listen a bit more. There was lots of hands-on treatment starting to to take place and I, along with a couple of physio colleagues, I ran some courses around the country so we trained about 400 physios over 10 year period in in hands-on manual treatment and that's impressive. It was really good, it was really powerful to be able to do that because you could actually have an impact. And you know that they're still. You know I still hear from some of them.

Sarah: 18:13

You know they're still out there treating people and getting them better and the basic treatment is to have a really good look at at the pelvis, pelvic joints. So get somebody to undress down to their underwear so they can actually see and feel the pelvic joints and then feel what happens when they stand on one leg, stand on the other leg, feel the sacroiliac joints at the back of the pelvis, whether one side's a bit stuck or whether they're moving equally. Get them to lean forward and do the same. You know, feel whether the joints are moving equally. Sit on the edge of the bed with your thumbs on the back of the pelvis and again feel whether it's moving equally. And then check, lying on their back, check on the, the levels of the symphysis pubis. So you're not looking for pain because the symphysis pubis is likely to be tender, but you're looking to see whether one side's slightly forward or back or up or down. Okay, and from that you get the kind of 3d idea of what the pelvis is actually doing and then they'll work out what joints not functioning properly and treat it. So it's not a long or complex thing to do. It's really a kind of looking at the, at the pelvis as a whole, as a, a mechanical structure, and treating that.

Sarah: 19:27

And often you know if people have had it for a while, they've got tight muscles and so on as well. Those will need releasing as well. If they've had pain for a really long time, they're likely to have, you know, some psychological impact from that, from being in pain for a long time. So that may need treatment as well. But the, the kind of fundamental hands-on treatment is kind of key to getting you back on your feet. And what I say to women on the helpline is you know, once you've had the physio should do the assessment, explain to you what's wrong, what, what they found on the assessment, explain what they're going to do, do it and you should walk out feeling different. So maybe you've got less pain, maybe you can walk better hopefully both. But you should feel a change within each session and so that's what a kind of manual therapy you know, if you're, if you're getting a really good manual therapy treatment should look like and that is providable in an NHS setting.

Sarah: 20:28

What's happened in the last few years with COVID is that there's been a lot less face-to-face physio treatment in the NHS. The private practitioners returned to treatment a lot faster, so they were able to see people face to face, and a lot of the NHS physio is still sheets of exercises, telephone advice, that kind of thing. So it's really variable what people are getting. That's had a huge impact on women, because if you can pay for it, you can therefore get treatment in, because if you can pay for it, you can therefore get treatment, and if you can't, you're in a really sticky place because you can't you know you can't access the, the manual therapy.

Sarah: 21:13

And just just going back to what something you said about women's health physio, it doesn't have to be women's health physio. So the physio who treated me was a private physio in the end because they had tried NHS physios and not improved because I was just getting exercises and advice. Like I say, this is 25 years ago, but the physio I saw was a rugby physio so she was used to treating mashed up pelvises and biomechanical problems. So often a sports injury physio is a really good person to go and see because they've got that kind of hands-on, mechanical mindset really to treating it that's really interesting.

Florence: 21:56

I I think one of the things I've learned already today, kind of preparing for this chat, was the idea that after every session you should feel some difference, some change, I mean that's. That's feels almost like magic to me when I when.

Florence: 22:19

So something so simple and yet seemingly so unobtainable, because I think of the women I see in pain for weeks and months or, like you've described, years, and yet even from a single session with the right person, with the knowledge, it could make a difference. That's astounding, really. I'm also interested in what you said about sports physio, actually, because I think there's a lot within the NHS that almost we don't understand our own bodies or we don't have the capacity to do that. I had a bad back quite a few years ago now and because I am a doctor, I looked up the NICE guidance and I saw that the only thing there was any evidence for really was Pilates, and so I took myself off to Pilates and I've had to pay for it, but I don't have a bad back anymore you know, because I do Pilates regularly and I've got the muscle strength and the realignment and everything.

Florence: 23:35

So I can really see how doing the right thing could make a big difference. Make a big difference. So you mentioned it's kind of a bit patchy, so you should be able to get this on the NHS but you might not be able to. What when you kind of look at your people using your helpline or website and so on? You you did a little survey what sort of proportion of people are able to access proper manual treatment on the nhs?

Sarah: 24:12

yes, you mentioned our survey, so this this was done last year, so it's a sort of it's a post-COVID survey, and 86% of respondents weren't offered manual therapy on the NHS. The previous year it was 80%.

Florence: 24:33

Sorry, 80% 86% didn't get it, didn't get it no. But, only 14% are actually getting it on the NHS.

Sarah: 24:43

Yeah, wow.

Florence: 24:47

That's really depressing.

Sarah: 24:49

It is, and it's really difficult when I'm talking to women on the helpline saying you know you can get better, can you pay?

Sarah: 24:59

So you know, I always say go back to your NHS physio, go back to your GP, start there, because if they don't know that there's a need, if it's not registered, then the NHS is never going to improve yes some people are just so desperate, you know they've already been around the houses for months and they say actually I just haven't got the energy to do that, I'm going to go straight to to a private physio and if you are going to go private, how do you decide who's a kind of reputable OK or someone that's going to have the right skills?

Sarah: 25:44

Yeah, I mean there are various ways of finding somebody. So there is a website called Physio First where all private physios have to be registered and you can look up there somebody who does sports injuries and manual therapy, and you know, you can enter your postcode and and find somebody. We do have a list of recommended practitioners so on our website. So that's people who've been recommended by at least two other women and they've got them from. You know, crutches, crutches to significantly better. So not just, oh yes, they were really nice to me. It's quite hard to weed that out because you know we've got lots of people who would like to be on our recommended practitioners list, but actually we're quite fussy about who we let on but we don't check them directly. So it's not not a list of people we validated, it's just that's that.

Sarah: 26:42

Other women have have said that this person was really good and really, I think, having quite high expectations. So you know, if you see somebody and they say, oh yes, it's going to be at least six months before you see any improvement, then that's, that's a no-no for me. That would be a complete red flag. And if you've seen somebody for two or three sessions and you don't really feel that you're making much improvement, having that really grown-up conversation, say, look, we don't seem to be getting anywhere very fast. Do you know why that is? Or would it be helpful to look at this with a colleague so that we can and anybody who's good will be confident enough to bring their colleague in and say, look, I'm really stuck with this and I mean I'm sure you'd do that as a doctor.

Sarah: 27:31

You would discuss it with a colleague and say, what do you think? And it's a sign of really good practice. It's not a sign of lack of competence, it's a sign of really good practice. It's not a sign of lack of competence. So it's having having high expectations really of the clinician, whether you're paying for them or not. Actually, you know, even if, even if you're getting free treatment on the NHS, if you're not getting any better and you've been seeing them for six months, this is your life that's passing by. Yes, yes, I think, having having those conversations and and asking so. So why are we not improving what? What's the problem?

Florence: 28:07

yes, I think that's a very good point. I think certainly you're absolutely right. As a doctor, I get other opinions and you know my colleagues do as well. We're kind of oh I've got this tricky situation, what would you do? Or I don't know about this. Can you help me? So definitely that's a strength. I I would agree with you. And if women can't afford it, can they? Can they get funding from anywhere?

Sarah: 28:35

there is a, an organization, it's a charity called Frederick Andrew Charitable Trust, fact, and they do fund some treatments for people who can't afford it. But you know, it's a small, it's a small organisation, so they don't have unlimited funds. But if people are in dire straits we do know of a few people who have managed to access funding through that. But often people ask family and friends and and you know, ask for for support to to get treatment. And particularly if you're seeing somebody really good, it may not be that expensive. You may only need sort of three or four treatments to get significantly better. So it shouldn't be that you're going to have to spend your life savings on this. And also, if you know, if you're in in the situation I was in, you know, 14 months postnatally I couldn't have gone back to work. But if I'd been able to get back to work and and then earn money, you know it kind of pays itself back. It's that kind of sometimes that sort of investment. But you know, everybody's in very individual positions, aren't they? And some people just can't afford it and therefore I think going back to the NHS and saying this isn't working you know, I've not had treatment, I'm not any better. This isn't working. You know, I've not had treatment. I'm not any better.

Sarah: 30:02

Please don't just fog me off with a pain clinic, or what's happening at the moment is a lot of women are being told, as I was 25 years ago oh, this is all, it's all in your head. You know, it's because you're depressed and overweight and not exercising enough. Well, I was depressed because I was in pain. I was overweight because I couldn't exercise and I wasn't depressed because I was in pain. I was overweight because I couldn't exercise and I wasn't exercising because I was in pain and depressed. You know, it was very much a kind of three or a multi multifaceted problem and once the pain was reduced, because I and then I could walk, my life was transformed. You know, it really is transformative getting getting treatment that that reduces your pain yes, I can.

Florence: 30:45

I can hear that and that sort of brings me to the next thing we were planning to talk about, which is stories of of people and the the impact. I think really trying to get people to understand the impact that PGP has on people's lives. So we've talked quite a bit about the physical symptoms in terms of pain and limited mobility, but and you've just touched slightly there on psychological aspects, but also looking after other kids, work, et cetera. So I don't know if you wanted to share any particular thoughts about what people are telling you about the impact it's having on them and their lives of telling you about the impact it's having on on them and their lives.

Sarah: 31:45

Yeah, I think it's something that, during a discussion on on the helpline, often people go through sort of their symptoms and and then we talk about treatment and and so on, and then they can often get quite tearful and say, you know, this just has taken over my life, because anything I do hurts, whether I'm standing, sitting, lying, because your pelvis is at the center of your body, isn't it? So you know, if you're sitting down, your trunk is sitting on your pelvis and if you try to move a leg or even an arm, you know everything is linked into your pelvis. If it hurts, it therefore affects everything you do, and you know that does have an effect on looking after your own children. Or, you know, going out to work. People will say they've managed to negotiate a parking space near the office door so that they can get into work and you just think, gosh, that just shouldn't be that hard to do it. You know, if you've got an employee who's on crutches, you would think it. It should be, as an employer, an obvious thing to do to to work out how you're going to get them to work uncomfortable but but just just thinking about some of the stories that that people tell me about treatment and and recovery, that one of the ones that really sticks in my mind, which I mentioned to you, is a woman in her 70s who'd had pain in her pelvis since she had her, her baby in her 30s and she'd split up from her partner.

Sarah: 33:25

She'd only ever had the one baby and she just had quite a tricky life managing around this and it just gradually got worse and worse to the point where she was pretty much housebound, taking morphine and just vomiting with the pain because it was so severe, and the GP was saying oh, you know, there's nothing more we could do, you just have to live with this.

Sarah: 33:47

And I think we'd done an article on in a magazine or something and she that she'd read and she thought that sounds just like me, even though I had my baby 40 years ago, and so we talked through exactly the same things about how the pelvis works and what treatment involves. And so she went off and found an osteopath who treated her and she wrote to us a few weeks later and said she'd had, I think, three or four sessions of osteopathy and it had just been transformative. She didn't need morphine, she'd come off all the pain relief and she'd gone horse riding. And you know, just to just to know that it made that much difference is enormous. And that's just from a few sessions of treatment and she could have had such a different life.

Florence: 34:38

That's such a powerful story and I agree I was just thinking, oh, all those wasted years of pain. I mean that's just devastating, but so incredible that getting the effective, right treatment could make such a difference. I mean I've just been flicking through some of the. So you sent me a copy of the survey and some of the comments people are making about, you know, just being told to kind of put up with it or being unable to walk even five steps impact on their well-being, their ability to exercise and their mental health. I mean it's just everything, isn't it?

Florence: 35:26

it's so debilitating and and so so sad that we're not managing to effectively treat and respond to this and particularly when it's so treatable.

Sarah: 35:39

Yes, and and that's why the pelvic partnership exists, because we're, you know, we've got a fantastic committee of volunteers and trustees who've all had pgp and all feel absolutely passionately that this should not be happening to anybody else, that this, this is treatable. It's treatable early in pregnancy. Why are we just letting women experience this when they and and the impact it's having on the rest of their lives and society as a whole of having women disabled in this way, and it doesn't make any sense and it doesn't make any sense.

Florence: 36:25

Something I was thinking about was a little bit about labor care, because sometimes when we see a woman with pgp, we get kind of instructions about trying to avoid lithotomy position, for example, or something about the angle at which she can or can't move her hips and legs and not going beyond that you know.

Florence: 36:55

However, many degrees and I want to, you know, work with that and do the right thing. And obviously sometimes in labor that can be easy. You can maybe use water or you can be on your side if you're having epidural. But there are some situations in which I find it really difficult because actually I do need to think about lithotomy position. Maybe there's been a bad tear that I need to repair or there's a need for an assistive vaginal birth, and I find that really quite challenging to know how to kind of fit what I might need to do to help one aspect of that woman's care alongside the need to try and support and not exacerbate her, her PGP symptoms and problems. So I don't know if there's any kind of wisdom you could share about that yeah, I don't know about wisdom, but I can give you some ideas.

Sarah: 38:06

So, like you say, water can be fantastic with PGP, because it just means you can move. So I had my second baby at a hospital water birth and my third at a home water birth, which was just fantastic were being able to move. You know, I could change position just by pulling on my arms, I could roll over and things like that, rather than on land. I was, yeah, beached whale, didn't describe it and and I do very long pregnancies as well. So I did 42 weeks for each of my pregnancies, so I was quite big by the time my babies decided they were going to turn up. But things like lithotomy it's. It is really important and I think you know you're halfway there, actually thinking about what am I going to do here, because you can be really careful with the pelvis, can't you? You can. I mean, the key things are keeping the legs symmetrical, so you know if you're lifting both legs up at the same time so that they're in a symmetrical position, having them up for as short a time as possible and just really thinking about. Do you know, thinking before before the woman goes into labor, actually what? What are the options going to be if you do need assisted delivery and have those conversations in advance, not when you get to a difficult um decision. But you know, I remember one woman fairly early on in pelvic partnership days and she had a two inch pain-free gap but she managed to give birth. She said it was fantastic lying on her side with somebody supporting her top leg and and she managed to give birth like that without aggravating it, and she said it was transformative because it just didn't give her all that aggravation and exacerbation that she had had in her previous births. For this birth it made a difference. And then the the other thing to consider that you know I've heard some obstetricians saying it is possible is if you're doing the forceps or volunteers doing it inside lying so that you're not actually going into lithotomy um to do that.

Sarah: 40:32

I remember going into into the hospital. One of the reasons I decided not to have a hospital birth for my third. I went in and with my second and you know I was on crutches and struggling a bit and I had planned water birth and my birth options were water birth or, if that, if anything was going, slightly pear shaped cesarean. I wasn't going to do anything between, because I had an awful forceps first time round where nobody looked after my legs, and it really made my pelvis much worse. Nobody looked after my legs and it really made my pelvis much worse. So the midwife wanted me to lie on my back on the bed and I said well, I can't, because as soon as I lie on my back on the bed I know my sacroiliac joints will shift and I don't lie on my back anywhere else. So no, I can't.

Sarah: 41:23

And so she was quite cross about it and I said you know, if you want to examine me, you can do it lying on my side. So sort of huffed and puffed and did. And then she said now we need to do a CTG for 20 minutes. And I said well, I don't, I don't want a CTG. You know, I've written that in my birth plan. I'd like intermittent auscultation. All is well, as far as we know. So I don't think I need it. And she said oh well, I'll have to do intermittent auscultation for 20 minutes. And you can't do that. And I said I don't think you do, do you? So she huffed and puffed again, went off to see my consultant who was upstairs. I don't know what the consultant said, but five minutes later the pool was running.

Sarah: 42:05

I had a different midwife. He was quite happy to do it. You know, it's just that listening, supportive, not saying. This is what our protocol is. So you've got to follow it, even though we've had these discussions ad nauseum during your pregnancy. Yeah, so sorry, that was another ramble, but I think it's the the thing about listening and which you know clearly you're doing, if you're even thinking what are we going to do with the lithotomy position. It's, it's listening and thinking and thinking about how can we do it and how can we make sure that mechanics work here yes yeah yeah, no, I don't think you're rambling at all.

Florence: 42:46

I think it's really valuable. I think that sort of. Also, I do get women coming and saying this is so un much choice and women have a cesarean for so many different reasons. But I do worry that I'm kind of adding insult to injury so I, I will never, I'll never not give someone a cesarean if they feel that's the right thing for them, obviously, but I do worry. Oh, I'm adding a surgical intervention and a surgical operative recovery to a woman who's already got a debilitating problem.

Sarah: 43:41

Am I just multiplying the difficulty in the postnatal period for her yeah so I do find that quite difficult to kind of help her think through and balance up yeah, and I don't think there's a right or wrong answer, because I think, yeah, the women I talk to, the, the ones who, who do better, the ones who've actually made a choice and been supported in that choice. So, whether they want a vaginal birth, and that's supported, or they want a cesarean birth, and that's supported, they, they do okay. It's the ones who want a vaginal birth but are told no, you have to have a cesarean. And they then have symptoms afterwards and they say, well, I told you so if I'd had a vagina, you know if I'd, or whichever way around. It is, and there was a study done in in Scandinavia, probably about 10 years ago now, where they looked at recovery post-cesarean and found that you recovered slightly more slowly after cesarean. But it was a cohort study, so it was just following people through, it wasn't randomizing. So I suspect it was probably people with more severe symptoms who were having cesareans. Therefore, you might expect them to recover more slowly. But that's the only, that's the only research I've seen on it and I think. I think choice is really important, I know.

Sarah: 45:07

For again, for my second, I was absolutely panicked. I'd planned the pregnancy, but I was really panicked about how I was going to get this baby out when I was eight weeks pregnant because the first, my first birth had been so awful. So I changed hospital, changed consultant, and the consultant said, yeah, absolutely fine, you know, I think probably along your lines. Florence said, you know, we'll support whatever you'd like to do. And so I was booked in for my cesarean when I was eight weeks pregnant, and that just allowed my headspace to free up and think, ok, that's, that's great, that's what I'm going to do. And then I carried on having physio all the way through and I gradually, you know, stayed on my feet and even though I needed crutches and I wasn't super mobile, I, you know, I wasn't in pain all the time. It was, it was manageable.

Sarah: 46:00

And when I got to about 20-25 weeks, I started thinking, oh well, maybe I could have that water birth that I really wanted, and so started and said you know, do you to her, do you think that's magic? No, no, you do what you like, but you know, if you change your mind either way. And so that was how I ended up having that water birth. And then, third time around, she was really supportive of the home birth and just said you know, absolutely, obviously, by this stage I knew that. I knew in my head that I could give birth and so I didn't.

Sarah: 46:35

And the hospital experience hadn't you know there'd been a lot of saying, no, I don't want this, no, I don't want that. Could you leave me alone, please, um? Whereas at home I could have a midwife on you and, um, she was quite happy to, to support what I needed. So the the second birth was empowering, but the the third birth was really kind of almost a healing type of experience. That that actually I felt really listened to and supported and it was. It was complete, completely different, and I didn't feel the need by then. I didn't feel the need to have any more babies to prove I could do it.

Florence: 47:14

I'd achieved that, yeah yeah, I think that's the key, isn't it? It's the being alongside someone, listening to, supporting and understanding, isn't it? And?

Sarah: 47:27

I mean, it's like like everything really we.

Florence: 47:31

If we get that right, then actually some of the kind of nuts and bolts and medical stuff isn't the important stuff.

Florence: 47:40

It's it's the listening to and acknowledging and all the soft stuff. Isn't it that's that's so crucial to how people come through it or, yeah, and come out of it, so obviously after you've given birth? We're encouraging women to perhaps think about a pelvic floor and doing pelvic floor exercises in the postnatal period particularly, but also during pregnancy. Does the pelvic floor muscles and perhaps birth injuries to the pelvic floor, does that play into pelvic girdle pain and have have an impact?

Sarah: 48:22

do you find yes, it can have quite an impact because the pelvic floor attaches onto the sacrum at the back and the symphysis pubis at the front, so it's kind of another part of the muscles surrounding the pelvis.

Sarah: 48:38

So, particularly if you've had an episiotomy or a tear, you can end up with some tight scar tissue in that area which can then lead to a tight area in that side of your pelvic floor and that then often women are told you know, do lots of tightening exercises, lift up your pelvic floor, lift and let go, and all that, and that can just exacerbate it, so they end up with a really, really tight bit on one side and the other side just sort of think, oh well, that side's doing all the hard work, so I'll just stop, and so they've still got the continence problems or the pain or whatever, despite doing all those exercises.

Sarah: 49:23

And also because it's holding on to the, the symphysis and the sacrum, it also, even if you've had your pelvis aligned, realigned it can sometimes then pull it back out of alignment and aggravate your your pelvic girdle pain problems as well. So, finding a physio and these are much more available on the nhs a pelvic floor physio who will treat an overactive pelvic floor and they'll do some internal work to release tight areas and show you how to how to do that and often give you some releasing type exercises and that then allows that area to to kind of release and become more balanced with the the other side and then your pelvis works and your pelvic floor works as a whole again together that makes a lot of sense.

Florence: 50:17

But again, you're educating me because I have had women come and tell me oh no, my physio told me I've, I've got to relax bits of my pelvic floor. Yeah, and I must admit I was a little bit confused because that's completely the opposite to everything I've been taught historically in my training. Yeah, so, but now you've explained it like that beautifully, I can see. Yes, it's that misalignment and tight bits yeah that need releasing to balance everything yeah, yes, that makes sense.

Sarah: 50:51

It's like any bits of the body, though. It all has to work symmetrically to work properly, doesn't it? And and if you've only got one half of it working, the other side either becomes floppy or very tight. But it, you know, they have to both be, have normal tone and normal activity to be able to work as a whole yes, yeah, and you're right that is becoming more available.

Florence: 51:15

On the NHS, definitely because there's been quite a lot of focus in the maternity transformation program and then the long-term NHS plan on pelvic floor health for women after childbirth.

Sarah: 51:32

So definitely something people can go away and and access some help with yeah, and the the long-term plan does also include PGP, but only in a very small way. So we're trying to just raise awareness that actually it is in there and it should be part of any pelvic health service. But but in a way pelvic floor treatment is much easier to to kind of administer, it's much clearer and you've got a cohort of women's health physios who have the skills to do it already. So it's much easier to focus on that than expand out and treat pgp, and that's why we try and encourage people to not just think about it as a women's health problem but think about it as a musculoskeletal problem. So if you've got a good musculoskeletal physio and they should be able to help, but not with your pelvic floor yes just to be clear, you might need.

Florence: 52:31

You might need two physios yes, you may well do yeah, yes yeah, two physios and some talking therapy.

Sarah: 52:38

You may need all of those, if you know, if you've had pain for a long time, you may need all of that. Yeah, and I think that's probably what we're trying to do with the pelvic partnership is trying to move people into that space where they feel actually I can ask for the thing that I want or the thing that I need. And it's okay to ask, and also, I'm not the only one in this position. There are lots of other women out there like me, and so it's having that tribe almost of of people who understand and and who will support. And I always say the end of my calls you know, do come back if you, if you want to discuss it anymore. And I have some repeat callers, particularly people who've had it for a while, who call about every six months saying you know, I've hit a bit of a roadblock and we kind of reset and discuss what their options are and and move on. But generally people don't need to come back that often that once they've got that kind of, actually I could do this and the information's all there.

Sarah: 53:42

Yeah, we touched on.

Sarah: 53:43

We touched on the kind of psychological impact as well and there is a kind of grieving process and we talked about the woman in her 70s who had treatment but had had the impact of PGP throughout her life, and I think it also has a massive impact, you know, if you're during a pregnancy and you're not able to be like the other mums and you're not able to be like the glossy magazines say you should be, and you know, I often get women talking to me about sort of three, four months postnatally and they say you know, I can't do any of these things and I can't push the pram and I, you know, I can't take my baby out and show him off, and and I think there is a sense of grief and and loss from not being able to do all the all those things.

Sarah: 54:36

Yeah, I think I think it spreads across a huge number of areas of their lives. But I think it's really important firstly to to get treatment, but also to get psychological support to help with that, because it's really important to acknowledge the loss that they're experiencing as well into potentially whether or not they're going to have more children in the future or how?

Sarah: 55:10

they approach another pregnancy because they're still carrying all that with them yes, yeah, yeah, and I have a lot of those conversations as well, with women saying I really want another baby but I can't bear the thought of it. And we talk about treatment a lot and also about some people are told oh well, you know, it might not happen this time. I think that's really unfair to say to somebody, because it's much more likely to happen than not, particularly if you've not had good treatment, whereas if you say, well, if you get treatment now and you go into a pregnancy with minimal pain, you're starting from a good point. You've got a good clinician who's going to look after you all the way through the pregnancy. Negotiate that with them.

Sarah: 56:01

You know I negotiated with my physio. I'm thinking about getting pregnant. You're not going anywhere, are you? Because I need you know I need you around for the next nine months and do that planning. And have you got somebody who can help with sort of hands-on stuff with the toddlers and and that kind of thing? But yeah, there's quite a few of us in the pelvic partnership who've had two or three babies and and just that planning is really important and not not being told oh well, it might, it might be okay this time wishful thinking isn't it.

Sarah: 56:38

Well it's? It's sort of fobbing off, isn't it?

Sarah: 56:40

it's it's sort of saying oh well, it's not that important anyway, it's only aches and pains of pregnancy yes yeah, we wrote an essay for the heather tricky prize a couple of years ago and we were joint winners with another woman from pelvic partnership, so there were two pelvic partnership essays in it and that was the kind of what one of the key things really was around the women being fobbed off and gaslit and told it wasn't really happening and it was all in their head and yeah, it just isn't. It's treatable and it's mechanical. Yeah.

Florence: 57:22

I normally end my episode with a zesty bit, a kind of this is the really key thing that we want people to remember from our conversation. I don't know if you have any thoughts on that.

Sarah: 57:41

PGP is treatable. It's never too early, too late, too severe, severe, too mild to you're not, never too old, too fat, too thin to anything. If anybody's saying any of those things to you, you're being fobbed off and do, do ask again and and just keep trying. And if all else fails, get in contact with the pelvic partnership. We're happy to talk you through it. But, yeah, really happy to to support anybody who needs help.

Florence: 58:13

That is definitely my takeaway that this is really treatable. I don't think I'd appreciated how I'd appreciated it was treatable, but not how I'd appreciated it was treatable, but not how I hesitate to say the word easily treatable because it's not easy if you can't access the right NHS care, but if you have the right person, easily treatable yeah yeah, I think.

Sarah: 58:41

I think the only caveat to that is people who are hyper mobile. Where that it may be, may take longer, more complex, but still the same principles apply, that you should never be fobbed off and told nothing can be done. Just thinking about, my background is as a neurophysio originally, and I wasn't able to go back to that because of my pelvis, because of the treatment I didn't get. But there you were often dealing with people with really long-term problems and there was always something that you could do to improve them. And I suppose I just kind of apply that principle in life, that and particularly to PGP, that that even if you've had it a really long time or or you've got really difficult, complex issues just a bit like the the eating an elephant analogy you just do it bit by bit and keep moving it forward and you will get there and some you know, sometimes it takes a while, but it's really worth persevering and getting your life back.

Florence: 59:48

I think that's really good advice, and I think one of the things that makes me so passionate about maternity care and the work that I do is the idea that we're looking after a cohort of people who are giving birth to the next generation.

Florence: 1:00:08

So we're setting the health of the next generation, but also looking after people who are, by definition, usually young and therefore the potential you can have, not only in the pregnancy but in forming good health habits for the rest of their lives and, um, you know, in terms of healthy eating and exercise and smoking and all these other things, and and pelvic and and physical health is the same, the impact you can have is much greater because they've got, hopefully, years and years of longevity in front of them if you can get it right. But then that means if you get it wrong, you're you're kind of dooming them to a really difficult time for a prolonged period. So I think you're right. There's that thing of keep chipping away. There is hope, even if it seems intractable and very difficult. So you're doing phenomenal work.

Sarah: 1:01:14

Thank you. Thank you. I'm really proud of what we do and we do have some really good resources on the website. So we've got a video of what treatment looks like which goes through in a bit more detail.

Florence: 1:01:28

So you know, sometimes being armed with that kind of information and, like you said, the toolkit about how to explain it to you, to a midwife or doctor, who you know just isn't familiar with it and doesn't really understand what, what's needed, can be really helpful yes, I will put a link to the website and some of those resources in the in the show notes of the episode so people can go off and explore it, because I my hope from today's conversation is that we educate a few more midwives, student midwives, obstetricians and also, obviously, pregnant women themselves or postnatal women who are still struggling well. Thank you so so much, sarah, for giving up your time. That has been such a great conversation. There's so much rich information and knowledge and experience there. So, yeah, I'm very grateful to you. Thank, yeah, I'm very grateful to you.

Sarah: 1:02:27

Thank you. Well, I'm really grateful to you for doing it, because I'm hoping that it'll be an opportunity to get the message out there yeah, absolutely, and for lots more women to get really good treatment.

Florence: 1:02:40

I very much hope you found this episode of the OBSPod interesting. If you have, it'd be fantastic fantastic if you could subscribe, rate and review, on whatever platform you find, your podcasts, as well as recommending the OBS pod to anyone you think might find it interesting. There's also tons of episodes to explore in my back catalogue, from clinical topics, my career and journey as an obstetrician and life in the NHS more generally. I'd like to assure women I care for that I take confidentiality very seriously and take great care not to use any patient identifiable information unless I have expressly asked the permission of the person involved on that rare occasion when it's been absolutely necessary.

Florence: 1:03:38

If you found this episode interesting and want to explore the subject a little more deeply, don't forget to take a look at the programme notes, where I've attached some links. If you want to get in touch to suggest topics for future episodes, you can find me at TheObsPod, on Twitter and Instagram and you can email me theobspod at gmailcom. Finally, it's very important to me to keep the OBS pod free and accessible to as many people as possible, but it does cost me a very small amount to keep it going and keep it live on the internet. So if you've enjoyed my episodes and, by chance, you do have a tiny bit to spare. You can now contribute to keep the podcast going and keep it free via my link to buy me a coffee. Don't feel under any obligation, but if you'd like to contribute, you now can. Thank you for listening.