The Lowdown on Pelvic Pain - Episode Transcript

Helen

Hi, I'm Helen, and this is Why Mums Don't Jump: busting taboos about leaks and lumps after childbirth. All the stuff that happens to your pelvic floor that no one ever talks about - incontinence prolapse, pelvic pain. Problems that affect millions of women, one-in-three! I'm one of them. I have a prolapse. My pelvic organs fell out of place after the birth of my second child. And if you had told me back then that I would be speaking about this stuff out loud, I would have told you to give your head a wobble.

Hello, welcome back. The book is out. Why Mums Don't Jump: Ending the Pelvic Floor Taboo has been released into the world and I'm so proud and not a little overwhelmed by the whole thing. It's been a busy and amazing week. And in amongst the celebration and promotion, the absolute best, best thing has been to hear from complete strangers who have somehow managed to read it already and then said some lovely things about it. Because obviously they're not under any obligation to do that, which means it's true, which just makes it all completely worthwhile. A little insight into my thought process there.

Seriously though, thank you for that. And this is a little plea to anyone else who reads the book and likes it, please leave a review on Amazon because it will help others to find it.

Today's episode then: ever since I started talking about pelvic floors, I have struggled to find language that is accurate and that I think people can relate to and understand. This is the struggle when you try to have conversations that are rarely ever had, right? So I use pelvic for problems as an umbrella term. You might also hear me say dysfunction. And then within that we've talked a fair bit about incontinence and prolapse, but we've never really explored what we mean by pelvic pain. So this is that episode. And it's a complex picture, but if anyone can help us to begin to get our heads around it, it is Virginia Rivers Bulkeley, a specialist pelvic health physiotherapist and an expert in postnatal pelvic floor dysfunction and persistent pelvic pain. I caught up with her a couple of weeks ago and asked her to give us a sense of what we might mean when we use the term, 'pelvic pain'?

Virginia

In the context we're talking about today, I'm describing it as 'persistent pelvic pain', which is really pain that...rather than coming for a period of couple of weeks and then disappears, this is persisting pain, which means it's lasted for more than three months, anywhere really below your tummy button all the way down to your buttock creases.

And it moves, in fact, even beyond that nasty episiotomy pain that you might have in those early weeks, where you can see the tissue healing...if you've...some people will have episiotomy cuts during their delivery, some women may have tears to that area of the perineum graded as a grade 1,2,3,4. You and I can probably both relate!

Helen

Yes

Virginia

...so the idea that in those first few weeks there'll be swelling, there'll be discomfort, you'll be maybe looking in the mirror if you're brave enough to see the healing. And that early period of pain we can directly correlate with what we can see and what we can feel. And what we'd expect through normal healing processes is it should trend towards getting more comfortable - swelling passing, bruising, passing, a little bit of sensitivity left which gradually improves.

Unfortunately, some women - whether it be something specific like an episiotomy cut, or a recurrent thrush, or a recurrent urinary tract infection, or perhaps endometriosis - may have something that starts off as an initial trigger for the nervous system. And instead of passing with initial healing, the pain actually persists. And that's where we unfortunately can meet women who've had vulval pain, bladder pain, sexual pain for years, rather than those early weeks or months where they might be able to associate with a particular mechanism or event.

Helen

Okay, so let me just check that I understand. So in giving birth...or perhaps just carrying a baby - not necessarily having a vaginal delivery - something can be triggered. Whether that's through an injury, or like you say an episiotomy, a cut - that for most people, or for many people, will just heal like any other injury will heal over time, but for some people that trigger sets off something else in the nerves that continues?

Virginia

And you're right to ask because actually this is an evolving area of our understanding. Pain science used to be quite simplified. We had these diagrams of...you know, you bang your toes, a nerve pathway takes that message up to your brain and your brain registers the pain and tells you that you've stumped your toe. Unfortunately, our understanding is still growing in this area. But what current researchers believe, and what relates in clinic, is that it is a whole body experience now, pain. We know there are changes in the nervous system, but we know that muscles then respond to threat differently, our whole body responds differently to how we might feel in stressful or emotional situations.

And this is why you'll often hear people now talking...beyond just the tissue we might examine as a physiotherapist, to talking about a holistic whole person approach to something we'll often now call the pain experience, when you have persisting pain. Because we know it's not just one tissue that's responsible. It's the whole you. And that's why even though I'll often call myself a pelvic health physiotherapist, we really try and make sure that we treat you as an individual and understand the whole woman in front of us and not just the bladder, bowel or vaginal systems because it's more complex than that.

Perhaps some women with endometriosis will tell us about a cyclical pattern. But then there are some other women who will say actually, my vulval pain from my episiotomy which hurts when I'm sitting, will be worse if I've had a really bad day at work, or while I'm having a conversation with a difficult coworker. I'll feel that tension underneath and I'll actually feel that as my jaw tightens and my shoulder tightens, perhaps my pelvic floor tightens too.

And the pelvic floor muscles have been shown to have a really strong threat response. Some people will relate it to the anatomy a bit like a dog tucking its tail underneath itself. That actually where those pelvic floor muscles attach to your coccyx, the remnant of our tailbone, it's a similar mechanism. And some Americans have done a study a while ago now, but they put electronic devices all over people's bodies and showed them very unpleasant movies. And the muscles that responded most quickly and most significantly to unpleasant stimulus that they were watching, or scary or nasty visuals, were around the jaw, around the abdomen, and around your pelvic floor.

Helen

Gosh, that's so interesting, isn't it? And it's just something so few people know anything about. I barely knew what my pelvic floor was before it wasn't working as it should be. Can you describe...I don't know if it's possible because probably there are large variations in this...but how does it feel? What does pelvic pain feel like and what is it that's actually hurting?

Virginia

Great question. So I am very fortunate that I have not myself got lived experience of persisting pelvic pain. So I will borrow the words from the wonderful women that I work with, if that's alright. And it's so so variable. Some women will have very diffuse symptoms the whole way across their lower abdomen. Some women it'll be across the vulva, sometimes it'll feel internal, but it often depends on what exactly is that they're describing. Unfortunately, women with bladder pain where they have pain as the bladder fills, they will often say that when it's severe it feels like a stretching, a ripping, a really heightened focused feeling right at the front of their abdomen, behind their pubic bone. Whereas sometimes with the vulval pain around underneath, women will sometimes describe a stretching, angry, raw, sensitive pain, compared to a sharp or stabbing pain inside if they're looking at penetrative sexual pain.

So it can be really varied unfortunately, as it could be for back pain or pain anywhere else. But really what we would say about any of these things is if you've got a symptom that's persisting and causing you worry, you are absolutely right to talk to somebody about it. And we're hoping that with better and better education, GPs will support women investigating their symptoms or referring on to then other teams that see this all day, every day so that hopefully we can support women experiencing this.

Helen

What impact does all this have on women's lives? Because obviously you treat women day in and day out...and I've got a fair idea because people message and tell me how it's affecting their lives. But I mean, it's significant isn't it?

Virginia

It absolutely is. And we know it's about one in four women that can be affected by this kind of persistent pain to some degree. And we know that it can be hugely impactful. Whether it stops you being able to fully go to work as you'd want to, fully involved in recreational activities that bring you physical and mental health benefits, family life, relationships. So the whole person can be affected as well as if we break it down to - if you have pain in your bladder, you may be more likely to struggle with urgency, frequency, getting up in the night to go to the loo, symptoms that feel like a persistent urinary tract infection. Women who might have then the sexual dysfunction which can either affect them if they're in a partnership right now or then the fear of a partnership later on. So we know that it can affect the particular structures that we think about anatomically. But the most significant thing to me is how it affects each woman as a whole, how it affects their confidence, their enjoyment of everything else. And I think one of the pain doctors I used to work with put it beautifully when he said that - I won't use the words he used - but he said 'Not only is pain rubbish, but it stops you doing all the things you love. And missing out on that is one of the most significant things for our physical and mental health.'

Helen

Yes, and it seems like it's such an enigma as well, because at least, I mean, certainly for me when I talk about things like incontinence, I think people generally have a grasp of that. You kind of know what that is and what that might mean. Or even if I talk about prolapse, once somebody actually knows what pelvic organ prolapse is, I guess you can sort of visualise it a bit and you can have some sense of what it is. But yeah, pelvic pain, it's just really hard, I think, maybe for people to grasp. And I imagine, if you're someone who's going through it, hard even for you to articulate or understand what's happening to you or even whether you're just imagining it or all of those kind of things, which you do hear.

Virginia

I've had lots of women say that they almost wish they...just wearing a back support would help, because they think friends, family, partners, employers might have a better understanding of what they're going through if it was something visible and tangible in the same way as if someone had a cast on their arm or something like that. And I think culturally, I hope it's improving, but I hear again and again, and you probably do too, about women who have had these really painful periods all their lives. And because we don't talk about what might be normal, think that actually it could be normal to miss school every month, to not go to work a few days every month because they are so overcome by pain that stops them being able to carry out their daily activities. And that, of course, then alters our mindset of, is this a woman's thing that we just have to manage? And it's absolutely not. But if we come from a culture where, as teens, this is what might be suggested, it's understandable then, when it often takes - well we know for endometriosis, it can take six, seven years for women to make it through the healthcare system towards a diagnosis. And that would definitely be reflected in the women that we see in our pelvic pain clinics - that it's often a really long journey.

Helen

Yeah. And it's just this idea, isn't it, that as a woman, we're kind of programmed to just put up with pain as if it is just part and parcel of who we are. And trying to change that perception in ourselves as well as the world around us is....yeah, that's quite a mission, isn't it? Can you describe what is going on with the pelvic floor when these pain signals are going off? Or what has broken within the pelvic floor, or how does it relate to the pelvic floor?

Virginia

In good news, I definitely wouldn't use the word 'broken'. Okay, so this is a great and beautifully complex question and potentially the same with an answer.

So there are absolutely still some unknowns. So normally, what we will do is we will meet a woman, find out exactly about her journey - because that in itself will give us some clues - actually the history, the background, the journey to date will give us lots of information. Whether it tells us about that lifelong recollection of pelvic pain associated with periods, or always struggling to put tampons in, or whether it was since delivery and they've had an episiotomy or a repair and there's been something specific that they can relate it to. So a little bit of detective work from that background, first of all, because you know your body and your health best, so drawing out your experiences, your worries, your thoughts is super important.

And then when we think about the workings within the pelvis as a whole, we know that there's a lot more cross talk or communication between the systems of the pelvis, often more so than other parts of the body. It's quite common that if you have a sciatica type pain down your leg, you would have a stripe of pain, which fits a little map that we have, that says, 'Well, actually, this nerve comes out of your back at this level and it looks a bit like a rope travelling down the leg and we can kind of track it.' Similarly, if I bang my elbow here, it goes down to this finger here. And that kind of makes sense anatomically. Because the organs of the pelvis share nerves that come out of many levels of the lower back, it ends up almost cobwebby within the pelvis. And it's designed like that because it gives us many advantages. However, there are some, potentially could be called 'disadvantages'. One of them is that pain is often not very localised. It's not uncommon if you have period type pain that rather than pinpointing two centimetres to the side of your belly button, like you would if it was on your hand or your foot, people often use their whole hand. It's common for women I'll meet that they'll use a whole hand across their tummy here or around their back there, similarly to labour pains. Because the nerve is crisscrossed within the pelvis. So it feels a little bit confusing with our brain receives it. So it means that actually it's then quite common for cross talk within the pelvis.

So if we think about women who have IBS and bowel difficulties, it's actually very common for an overlap between a lot of different pelvic conditions. So it's very well associated now in the literature that women with the vulvadynia pains underneath may well present with the bladder pains, the bladder pains may well present with the sexual pains, because of this cross talk amongst the organs of the pelvis. And that's how women...maybe with endometriosis pain, which might start off as cyclical, linking with their periods, then can have kind of a knock on effect. Where they might say, yeah, my abdominal pain and my opening my bowel pain is worse during my cycle, but now I've been left with this irritable bladder where I also get bladder pain, or I also get pain on sex even when it's not my period. Because of this cross talk between the organs and this kind of secondary sensitivity that we call it.

Helen

Ah there's just so much to it, isn't there?! And we hear a lot on the podcast...people who have a diagnosis, or an understanding, or whatever the word is that they have a 'hypertonic pelvic floor', is a term that I've used and heard. An overactive pelvic floor, where my understanding is that the muscles are just too tight, they're always on, they can't switch off...and that in itself can cause pain, as well as other symptoms like incontinence. Where does that fit into what you've just described there?

Virginia

And the fact that you used a couple of different terms there is actually the same as all of us. So the International Continence Society who give us terminology documents, they talk about increased tone of the pelvic floor muscles. But essentially what it's talking about is that all of our muscles, to some degree, all of our skeletal muscles, have a degree of resting tone. So even when you're relaxed there will be a little bit of tension in the muscles. And if we think about the pelvic floor, that little bit of tension is great. It supports your pelvic organs, it helps maintain your continence and it provides support for the base of your pelvis. But what we want from any muscle, any skeletal muscle that's useful to us, is full function. And if I use my hand, because it's easier than my pelvic floor, we would want our hand and finger muscles to be able to lengthen fully so that I can open my hand, pick up my cup of tea, and then shorten and contract so I can grip my cup, so that I can have my cup of tea. So in relation to the pelvic floor, we want that nice resting tone to give us that support. We want to be able to squeeze it further, if you're about to cough or sneeze and you want a little bit of extra support, but you also want to be able to relax back down to that resting tone and then actually fully relax the muscles so that you can pass urine, pass a stool, sexual function and relaxation. Now, when we talk about increased tone, we're talking about normally increased tone at rest. So that would be, for example, on an examination, if we were doing an internal examination, or having a little look from the outside, we might notice increased tone of those muscles. Now, of course, some of that might be because they're in a clinic setting with someone they don't know, and they know they're having a vaginal exam.

Helen

Yes, it's a little tense situation.

Virginia

Yes. And in the same way I might see their jaw tightening and their chest tightening. So once you've taken your time to allow for those kinds of things, making sure the woman's well supported and happy to proceed, one of the things that's of interest to us with increased tone is the relationship that might have with the local circulation, if the muscle is not moving well, the local nerves, the local sensitivity. And we don't say that increased tone causes pain or vice versa because there isn't enough data to show us that really, really strong causal link. But there is a correlation.

So if we look at one of the largest systematic reviews that's just happened, which was an American researcher in Australia, he's just done an enormous review looking at all the research done to date, looking at pelvic floor tone across the different pelvic floor complaints, found that the strongest correlation was increased tone with the pain conditions.

Helen

Okay.

Virginia

So we know that sometimes we'll find it in higher level athletes who have global increased tone everywhere. Occasionally it will cause stress incontinence, even in people who've not had children. But really the strongest correlation we have is between an overactive or increased tone in the pelvic floor and people with pain. And that might be vulval pain on the outside, like a vulvadynia. That could be the bladder pain syndrome, sometimes called interstitial cystitis. It could be painful sex if we're thinking about dyspareunia, or painful bowel opening.

And what we want to look at is we really, really don't want to give out extra diagnoses, really. Labels...we have to think about words that harm as well as words that heal. And we'll all have had friends who've gone to different appointments and come out and said, oh, my God, it's even worse than I thought, I've now got eight things, not two. So the way I try and see it is it's part of the picture. It's one of our findings that actually, we've got a toolkit to help with, so let's help with it.

Helen

So what kind of treatments are available? And how hopeful can people feel that it will actually make a difference?

Virginia

So the good news is that there is increasing support for women experiencing persistent pelvic pain. Across the NHS and the private sector I think services are improving, collaboration is improving. Because often it takes a village. It's very common for me to talk to a woman and put arrangements in place for her to be under a pain informed gynaecologist, a pain doctor, a pain physio, a pelvic health physio, working together, sometimes with psychosexual counselling added, as well. So it often is a village around a woman so that we can each add our expertise and tools to help them get where they want to go.

And that's often the first part of treatment, is listening, hearing the woman's story, but also knowing what's most meaningful. Because actually, as clinicians, we've all got our own biases and we might get fixated on the bladder, when actually it's her sexual function that's a priority. Or we might focus on the sexual function and she'll say, well, hang on, if I can't even get out of the house to go to work, better focus on that first. So working out where we are, what her goals are, what's meaningful to her.

And then when it comes to the specifics of the pelvic floor, sometimes if women aren't ready to have an examination, or to go straight to pelvic floor treatment, we can do tips and tricks - advice we can give to help bladder urgency and frequency or difficult bowels. So lots of my pelvic health colleagues will routinely give great bladder and bowel advice. And that's a great starting point.

If someone's in a position where we've had an examination or even from a hands off point of view, which is increasingly common if women don't want to travel for their care and they're accessing remote care. It might be that we start off with some kind of little hacks where you can gently introduce some movement to a pelvic floor that might not like moving, without going anywhere near it yourself. Which is often where women start off. Because often we're not that familiar with that part of our body until we have difficulties with it. And women don't know what I'm talking about when I start talking about their pelvic floor. What's great is that there are some hacks, kind of from the outside in.

So we know that because of the way your abdomen works, when your diaphragm goes up and down, when you take nice big breaths, your pelvic floor has to move a little bit to accommodate that. So one of the first things we might do to introduce that kind of brain-muscle connection and a little bit of movement in the pelvic floor, is get a lady to relax in an area where she feels comfortable. She can kind of turn everything off, put aeroplane mode on. Often a really good position for the pelvic floor to relax is actually lying on your back with your feet up on the sofa, or on an armchair. Then your legs are at right angles, because then your hips and your legs can go floppy and relax. And then you can have a go at this belly breathing where you breathe in through your nose with your tummy rising and breathing out with your tummy falling. And it's a little bit like breathing. You might do a meditation or yoga or Pilates because it's called diaphragmatic breathing, getting that movement of the diaphragm. And that's one of our first hacks, because you often can't consciously move your pelvic floor if you're struggling in that area already. But using a little bit of movement from the diaphragm gets us there.

So we might start off with some breathing techniques. We might then add kind of relaxation postures. We might then add some gentle stretches. We might then actually get women to use a bit of imagery because if we palpate the lady at the same time as giving her cues to help with pelvic...

Helen

What's palpate? What do you mean?

Virginia

Oh, great question. Stop me. So basically, if we're in clinic with a patient, you can actually practise evaluating the effect of some of the pelvic floor relaxation strategies by examining the woman with your finger on the pelvic floor to then feel any movement there. And that's something I'll often encourage women to do themselves as much as they feel comfortable. I can kind of orientate them as to where I want them to put a finger or a thumb. And then I can say, can you feel a little tightening and can you feel it letting go? So that we can gradually build up whether they're comfortable with moving towards actually some specific muscle techniques where actually maybe we'll do a little bit of light touch desensitisation work with women with pain on the outside of their vulvas, using different textures, different contact types and we can build that up internally as well, on the pelvic floor muscles themselves.

Helen

So when we talk about palpate it's basically touching to different degrees...and manipulating physically. Yeah.

Virginia

So palpate means touch. And you're exactly right to ask me because I should just say touch. I think it's because we're all a bit cautious of saying about touching people's vulvas. You want to stay in a professional context!

Helen

Yeah, fair enough!

Virginia

So, with consent, a professional examination!

Helen

Yeah. And what's the success rate with this? Because it's so complicated, and as you say, there are so many different elements to it. What are the chances that the treatments actually...fix is probably not the right word...improve things?

Virginia

Yeah. So we can have really good outcomes. So I think one of the things to bear in mind is that when people talk about persistent pain of any nature, it is more complex. Some evidence suggests that the more widespread your pain is, the more difficult it might be to see a significant improvement. But what we often find is that particularly when it's focused to function, if it's bladder function, sexual function, bowel function, the change and the improvement in those areas can be quite significant.

The important thing is...change is possible, positive change is possible. And that if we get to a point where you're quite a bit improved but then hit a plateau, we can work with that too.

Helen

And if someone's listening to this now, and they are experiencing pelvic pain, and obviously I'm going to say probably go to your GP, but is there some language you can use with the GP or something you can do to help advocate for yourself and get yourself to a clinic like yours?

Virginia

Yeah, so I think you're absolutely right that GP is a great first point of call. Get to know your GP practice. There may well be a GP with a special interest in women's health. That's increasingly the case, and it might be well worth asking to see them. And I'm a great fan of making a little list, so that actually, when you get there, you don't kind of get distracted and overwhelmed and miss the kind of key points you want to raise.

Because the main things you'd want to draw their attention to is the fact that this is ongoing. This is not a new onset thing. You want to tell them how long it's gone on for, and hopefully by listening to podcasts like yourself, using the language of saying it's on the outside, it's my vulva, my vulva still hurts, and then telling them how that impacts you. So you could say, do you know what? I had this pain in my vulva. It's been going on now for a good couple of years. People have checked me for thrush, but there was nothing there. But now I can't sit. Now it feels difficult to wear tight trousers. It's really affecting my sexual function and I want to look into this more. Is there somewhere you think I could go?

They would normally offer you an examination to have a little look, because obviously we don't want you waiting to see any other services if there is a cream that could help it. But yeah, using the language of how long it's been going on for, where you feel it, how it impacts you, and that you're at a stage where you would like this looked into further. And actually using that, I think, is really empowering to getting referred on.

Helen

Yeah, I feel like having the right language when you get your seven and a half minutes, or whatever it is, in the consultation room. Just having the right words is really going to help you so much to get to where you need to be and speed up what is always, unfortunately, a really long process to get the help you need.

There is so much to talk about and there's no way we can cover everything. But I just I guess just to finish...is there anything - I don't know if this is a hard question or not - but is there, like, one thing that you wish ordinary women would know about pelvic pain?

Virginia

So I would say, and I know this is repetition of some of your other speakers and some of your other women's lived experience, but is to know that these symptoms are common but not normal. So it's common - you're not alone - but it's not something we should just have to put up with.

I am a mum of boys, so I may not have this conversation repeatedly, but I would love there to be education about pelvic floor health and menstrual health, and I would love it to be for boys and girls, school age children, so that it is part of our conversation from school age onwards. So that in the same way as if there was something funny with my foot and I'd go and say, do you know what? There's something just not quite right. I'm not sure exactly what it is, but I feel like someone must know what it is, so I'll go and see somebody.

So I would say to women, although there's lots of work that we're going to hopefully do on your behalf to educate girls and women upwards, I would say, remember that...trust your gut, you're not alone. If there's something that's been persisting that gives you bother, come and get help.

Helen

Yeah. No, I mean, I just think you can't say that enough because it's just so true. And once you know that, you know you're not alone, you know that there are options and there is treatment available, then that can give you hope and then who knows where you can get to after that? So, thank you so much. You explain things so clearly. You are gifted in clear explanation. That is a true gift. So thank you very much.

Virginia

Well, I apologise for going off sideways occasionally. There'll be some colleagues who listen who are like, there she is again!

Helen

So, after we recorded this episode, Virginia came to the book launch in London and I can confirm that she is as lovely in real life as she sounds. I will link to Virginia's social media in the show notes and also include some useful resources on pelvic pain that she has sent my way. As ever, please be aware that I am not a health professional, so please don't take any of what you hear as medical advice. Do seek out your own support.

I'll be back next week and in the meantime, please buy the book. It's Mother's Day next week, in case you're looking for a gift. Just saying. And thanks to everyone who has done so much to spread the word already. Telling friends, spamming WhatsApp groups, posting on social media, writing reviews - it's all massively helpful. To find out more, you can find me on social @whymumsdontjump or online at whymumsdontjump.com. Bye for now.