Hayley's Story: Prolapse, Pregnancy and Mindset - 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, and welcome back to episode five of season five and one that I know you're gonna love. It was one of those conversations where I, oh, I do this. I become my own worst enemy because I get really wrapped up in the conversation and then I lose track of time and I record too much. And then when it comes to editing it, I don't want to cut anything out. But then I also don't want to steal too much of your time.!

Anyway, that's just a little insight into the inner workings of my podcast brain process. I guess sometimes that's just how it goes. Which is all to say, it's a good episode. More in a minute.

Season 5 of Why Mums Don't Jump is brought to you by iMEDicare - Pelvic Health Naturally. The team at iMEDicare are passionate about improving quality of life for patients with pelvic health problems, and they supply products that are safe and easy to use as part of your rehab journey. Products like the Efemia bladder support - a reusable vaginal pessary for stress incontinence, helping you to stay active without worrying about leaks. Made from a soft and flexible silicone, Efemia is widely available on NHS prescription as well as through the affiliate shop on the Why Mums Don't Jump website, where you'll also find a discount code. Check it out.

Today's episode, then. Hayley Schoenberg lives with her wife and daughter in Germany, in Hamburg. She's originally from Hull, and she made me smile because when we spoke she kept forgetting the English word for things, even though she says she's only lived there for about eight years and that her German isn't even all that.

Hayley is a dance teacher, she's a burlesque performer, and she's a hypnobirthing teacher. And she told me how she discovered she had prolapse last year, two years after her daughter was born, and just as she was trying for a second baby.

We talk about the impact on her and her family, the challenge of finding the support she needed, about pessaries, fertility treatment and German healthcare. As ever, we are not medical experts, so please don't take this as advice, but do seek out your own support. This is Hayley's story.

Hayley

For me, it actually started two years postpartum. That's when I really noticed something was wrong. I mean, after the birth of my first child, I had a, like, I had an episiotomy. It was a really long birth. It was a traumatic birth. And I took a really long time to be able to, like, walk or even just stand up. But I didn't realise it was my pelvic floor. It was just....my full body was just weak. I was not strong. And so I took, like, a year until I could go back to working again.

Helen

And obviously working for you is dancing. So a really physical thing.

Hayley

Yeah, it's dancing. So, I mean, I would have taken that time off anyways because we're allowed to have that in Germany. Like, we have this, like, a year of support basically, in Germany. So that would have been fine. Like, financially, I could have done it, but I did want to start back a little bit earlier, but I just was really just feeling quite unstable.

So I started back kind of without any foundations of building myself back up again. I just waited until I felt that it was time. But when I did go back onto stage and back to my dance teaching, I did notice some changes. Like, if I was jumping and stuff, like, I would maybe feel a bit unstable. Like, you know, oh, I've got to hold in case I wee myself or something, because, yeah, I just felt not very stable. But I just put it down to, okay, well, I had a baby. It's normal, you know, put a pad on, you're fine. Yes, continue. And then two years went by.

So 2021, I had my daughter. And then we decided then to go for another baby. And going for another baby for us is meaning we have to go through fertility treatment, because obviously we're a lesbian couple. We have a sperm donor. I had to take medication. We was just doing insemination. So we didn't do IVF, we did IUI. But I still had to take the medication and things like this.

Helen

So hormones and things.

Hayley

Yeah, I was on Clomid and I had, like, the trigger shot to release the eggs for ovulation. And we was just so ready to go for another baby because I really wanted to have another baby. And most importantly, I wanted to have another birth as well. Like, I was like, I need to have another birth because the birth of my daughter didn't go the way that I wanted and it was traumatic and I wanted to have, like, that healing experience. And then we went for the first IUI in April last year. So 2023 was our first IUI that we did. And I took the medication in the meantime. I was still teaching my dancing. I actually did a hypnobirthing course around that time. So I was sat for quite a while on the computer, which I don't normally do. Like, I never sit at a computer. And I did notice around that time, just before we started, I started to have, like, tailbone pain, but it would gone to a soft play, like, a couple of weeks before, and I'd gone down a slide and I, like, banged and. And I was thinking to myself, is it bruised? Yeah, but it went on for ages. Like, the pain was just like. It was like a different type of pain. It wasn't a bruise pain, but it was like, my tailbone pain suddenly felt really painful.

And anyways, then I did the sitting down at the laptop doing my hypnobirthing course for a week. I was on the medication for the IUI. We was waiting to find out if we was pregnant or not because we'd done the insemination. And when I took the trigger shots - it's like a hormone that you take to release the eggs - I felt like my body reacted differently to it than it had done with my daughter. It was like everything kind of became really soft and I had a lot of, like, yeah, like, discharge and stuff, you know, like, it was just. My body was reacting differently to it.

And one day I wanted to take my daughter out to the park, but it was a really stressful morning, you know, and they're just being little, like, nothing's going right, nothing's going right. I was stressed. I had this tail bone pain. I had the pain here. Just sat for a week. I was stressed out with the course. I just wanted to get out the house. So I was trying to get my daughter's shoes on, get her in the pram, get her out. And we live in an apartment and all the neighbours come out and they're like, hello? And you're like, I just want to get out. I just want to get out my door.

Helen

Leave me alone. Get me some fresh air, get me some space.

Hayley

So I put her in the pram and we have, like, seven stairs to go down to get out of the apartment. And as I went down the stairs. I was a bit silly because I put her in the pram before I took her down the stairs, which I didn't have to do, but I did. And the pram, like, went to fall down the stairs. So my reaction was, lift up the pram, of course.

Helen

Yeah.

Hayley

Like, just...I didn't want it to fall. And as I did that action, I felt this almighty drop. It was like an instant. And I had about. It felt like five minutes. It was probably 2 seconds of pain. It was like sharp pain. And I...I don't know why, because I've never thought about my pelvic floor in my life. Even as a dancer, I never. Wasn't something we think about. I was like, that's my pelvic floor. Something has just fallen.

And I text my wife, and I said, I think my pelvic floor's just fallen through my ass, I think I said. Because, you know, it was like. It was...I knew instantly, like, this is not good. So we carried on going to the park, and as I'm walking, I'm feeling like there is something not right. There's something between my legs. I was devastated because I just knew that this is not good.

Got back home, told my wife. She said, maybe it's from the medication. We still was waiting to find out if it was pregnant. So I said, okay, let's wait until we find out if we're pregnant or not. And if, once the medication's gone, if the sensation's still there, then I will go to the gynaecologist. And we waited and waited. We wasn't pregnant that cycle, but the sensation was still there. And I just remember feeling like, I really hope this goes away. I need this to go away. I have a daughter -she was two at the time, two years old. I also just stopped breastfeeding as well. The month before the drop happened. So I think there was a lot of hormonal changes going on.

Helen

Yeah.

Hayley

And, yeah, it didn't go away. So I went then to the gynaecologist, who did an examination, and she told me that everything's fine.

Helen

Oh, okay.

Hayley

It's normal.

Helen

Okay.

Hayley

You look fine. You don't have a prolapse. You're just a bit lax. You've got a bit of laxity, like, it's a bit loose, which is absolutely normal. And I said, can I continue with a fertility treatment? Because we want to go again. She said, absolutely. But I came away like, she's not right. She's wrong.

Helen

You know yourself, don't you? You know your own body.

Hayley

She's not right, because how can she tell me it's fine? There's nothing wrong with me - yet when I stand up and I'm walking, I feel like this...like everything's just dropping down. It was just such an uncomfortable feeling. So I knew she was wrong.

So I did some research, and I saw that you should really see a urogynaecologist. So we tried to book in with some, but there was an eight week waiting period. And my wife, she's really good at, like, talking people around things. And she was like, but we're going for another baby. My wife's a dancer. She needs to work and stuff like this. Can you please get us in earlier? So we contacted two different hospitals, and they said, we're going to call you as soon as there is appointment coming. And also throughout all of this, because I had my...the prolapse had just happened, or I don't know if it just happened. Maybe it happened after the birth. I have no idea. It got worse. I still had to go to work. And for me, this was the hardest thing, because obviously, when we found out we wasn't pregnant, I had my period. I then had this new sensation of, something has fallen out of me. My life has changed. But as a performer, I also work as a burlesque performer. So I had to go on stage that weekend and strip, basically, like on stage, because that's the job of being a burlesque performer. But it was just awful because I had to carry my big, heavy suitcases, got my period, got my new body, my new vagina that wasn't me. And I had to go on stage and, like, strip. And it was just.

Helen

I don't know how.

Hayley

I don't know how I did it. I remember just crying backstage, thinking, I cannot do this. But we needed the money because we're going through fertility treatment. You cannot just...we couldn't just stop. And that, again, was like, to me, okay, do we carry on with this? Do I want another baby now? What does this mean? I need to see somebody. But my gynaecologist tells me everything is normal. Just crazy. And then I said, okay, I cannot wait eight weeks. Let's go find somebody else. So then I went to see a urologist.

Helen

Okay. Yeah.

Hayley

And he said that I have a grade one cystocele. So bladder prolapse, grade one. But again, I came away thinking, that can't be a grade one, because the sensation was so big, I couldn't lift my child. I felt like I couldn't lift my child. I couldn't open a door, I couldn't go shopping because I couldn't push a trolley. I couldn't. And all of these visions of just being a mum and, like, dancing with my daughter, lifting her hair up, playing with her, just vanished, like, overnight.

Helen

I think the grades can be so confusing and sometimes really unnecessary. I mean, obviously I'm not a clinician and there are reasons why people use these things, but I know throughout my cycle, my prolapse is totally different all over the place. And people can get fixated on the number when, as you say, it doesn't always correlate to how you're feeling or the symptoms, but, yeah. And I guess in your case, it just makes you feel like. Well, you know, makes you feel insane. Yeah. Am I making this up? I mean. Yeah.

Hayley

Is it in my head? Like, it's so confusing. But we carried on going for the fertility treatment because I said to myself, well, it's happened, I might as well just go on with it and then sort it out. Like, just, what's the point? Because I didn't want to wait. Because I just didn't want to wait. I knew that that's what I really wanted to do. It was mentally challenging, dancing, performing, going through fertility treatment with a prolapse that had just happened. My life had changed. It was just like, what am I doing?

So I saw the urologist. He gave me grade one, and I was like, right. That's not right. And then was my appointment with the urogynecologist. The first one I went to see was horrendous. And she told me that I should stop dancing, I shouldn't do my job anymore, I should take it easy, not lift my daughter. She said I had a grade two cystocele. She said that I had an avulsion completely. And she said that my uterus will maybe not fly out now, but maybe in 50 years it might just fly out.

Helen

Oh, lovely. Thank you so much!

Hayley

Yeah, I was sitting there like, oh, well, thank you. And then she gave me a pessary to try, and I came out and I was like, to my wife, I don't know what that was all about, but that is terrifying. I told her everything. Had a cry. The second IUI, the second fertility treatment we did failed again. I then saw a pelvic floor physio. I found an amazing physio. And I went to go see her, and the first thing she did to me was give me a hug.

Helen

Aw.

Hayley

After this woman had told me, my uterus is gonna fly out, she just came and gave me a hug. She said, that will not...she cannot say that will not happen...but most likely will not happen. Let's have a look. And I'm just crying in the room because I just felt so listened to. And we did an internal check for an hour, lying, standing. We did an ultrasound. She said, you do not have a complete avulsion. It's just overstretched.

Helen

And avulsion. Remind me, this is where the pelvic floor completely separates from the bone, the support structures.

Hayley

Yeah. She said, it's just overstretched. It's not completely off. It's just overstretched.

Helen

I wish you could have seen her first. Sorry. Carry on.

Hayley

Me too! And I was so relieved because I'm like, well, because I wanted the birth, and I didn't know what that meant for birth, you know? She said, yeah, it's grade two, cystocele. We're gonna help you. She gave me some pessaries to try to take home. She tried some there and then. Some of them were really uncomfortable. I got one stuck in me, actually, at home, and I couldn't get it out. And me and my wife, we had like, 2 hours on that. I said, we're gonna have to call the hospital. I don't know how to get it out.

Helen

I've heard this before with people! That's an adventure.

Hayley

Yeah. I said, okay, this is not for me. I cannot get this in and out. But then I found one I really liked. I continued to see her, and at the same time, I had still the other, urogynaecologist to go see.

Helen

Yeah.

Hayley

So I had the appointment, so I thought, I'll just go to it. She confirmed no avulsion, just overstretched. Grade two cystocele.

Helen

Okay.

Hayley

And she just recommended me to see the physio and give me pessaries, but I've already been doing that.

Helen

Yeah.

Hayley

So, yeah, I just then started to manage living, living life with it because I knew that's all I could do. She said, I'm not a candidate for surgery. In her opinion, it's not that bad. Even though for me, it felt like my life was over.

And, you know, you just come to this, you just have these feelings of, like, imagining your future with your children. And I even, like, got to the point at one point where I was like, I cannot. I don't want to be... like, really, really depressed about it. I don't want to be here, kind of thoughts. But I had my child.

And, yeah, it was just really, really, really hard. And nobody understands it. Because I was still performing as well on stage. They're like, well, how can you do that, but feel like that? And you're saying you can't walk very far, but yet you're on stage doing that?

Helen

Yeah, it's really hidden. You look fine. You can do all that. What's the problem?

Hayley

Yeah. And also, like, just going shopping. Like, if I'm. If I'm holding, like, the. What's the English word? The shopping bag. The basket!

Helen

The basket. Shopping basket. Yeah.

Hayley

There was one time I was holding the shopping basket, and it's quite heavy, and this man behind me is telling me to hurry up. And I like, yeah, I look fine, but I cannot...because right now I feel....I turned around and said, my vagina is going to fall on the floor.

Helen

No, you didn't.

Hayley

Yes, I did, because I was so mad. I was like, who you telling? Like, no, I cannot go quicker. Sorry, my vagina is going to fall on the floor.

Helen

I love that.

Hayley

Because you look normal. You look like you don't want sympathy. I didn't want sympathy from people. But it's just so hard for people to understand what you're going through, because some movements, some things, you can do. Yeah, but yet lifting a heavy bag is really hard to do.

Helen

It's really hard to explain to anyone who's not experiencing it all the time.

Hayley

Just having it there constantly - the sensation, it's just mentally...and I came to a point in the end where I said, right, either, I live my life in misery now because this has happened, or I just manage it and move on and just live the best I can. I've got a two year old. I want another baby. Let's do it. And my mindset completely changed. And actually, once my mindset did become more positive and become more, it's okay, I can manage it. Then it started to get a bit easier.

What didn't help, though, was because before my prolapse happened, I'd just done the hypnobirthing course, which was, you know - trust your body. You know, you're made for this kind of thing. I mean, I'm a hypnobirthing teacher now, but I make sure that when I'm teaching, I'm not just telling people, like, your vagina's gonna go back. I'm not doing that. I'm not telling them that, you know, because that's the information that I was given before I had my daughter. I wasn't...I didn't know about prolapse. I think my midwife told me to do my kegels after birth to stop me from peeing myself. But if she would have told me, make sure you protect your pelvic floor because your organs can move...

Helen

Yep.

Hayley

Yeah, that might have made me go...

Helen

Probably would listen to that.

Hayley

Probably would listen to that more!

Helen

Yeah, yeah.

Hayley

But yeah. Telling people that that can happen to be aware. And I make that clear in my classes that I teach, tell people where to go to get maybe a physio appointment before they have a baby to check everything's fine, to see what they need to do.

Helen

Well, did you know that was even a profession that existed? Because I had never heard of it

Hayley

No idea.

Helen

No, exactly.

Hayley

Yeah. No idea.

Helen

Knowledge is power. I mean, we say it a lot on the podcast, but also...credit to you for, you know, going out and finding the support that you needed, because, you know, if you'd just gone to that one urogynaecologist who was just like, you know, your uterus is going to fly out and everything's terrible, give up your job, give up doing everything. Like, you could have just gone to see her and like, you could have followed her advice and where would you be?

Hayley

Well, I wouldn't be pregnant now because I'm 37 weeks right now. I probably wouldn't have done that. You know, I would have not gone for it.

Helen

I don't think we've mentioned that yet. Congratulations, by the way. That is amazing.

Hayley

Thank you.

Helen

And thank you for giving me some of your last peaceful time to speak. No, it'll be fine. It'll be totally peaceful. And how are you feeling about the birth and the recovery afterwards?

Hayley

Well, I would say. I could say...I'm absolutely fine. I should be. Like, I'm thinking so positive about it. Everything's gonna be great. I need to think these thoughts. I did a course this pregnancy to release my fear, because the prolapse is a big thing. And my fear is that it gets worse. And I'm feeling quite positive because I feel like I've been at the place where it was really bad when it very first happened, and it did get better. So I'm just gonna keep telling myself, even if after the birth, it feels really bad, it will get better.

Helen

Yeah. You've done it once, you know what to do, and you're at an advantage this time, because you know a bit about it and how to look after yourself.

B

Yeah.

Helen

So there's every reason why.

B

Yeah, I. And I have my physiotherapist as well, who I'm going to see. She actually gave me a pessary to put in after the birth, which still allows the blood to flow through.

Helen

Oh, right. What's that like? What does that look like?

Hayley

I'll show you it.

Helen

What's it called? Restifem?

Hayley

Restifem. It's like this.

Helen

Oh, whoa. I have never seen anything like that. So it's like a kind of soft, rectangular purple? Yeah. I don't even know. It's squishy. Oh, wow.

Hayley

I didn't like it. I tried it before, but I think after the birth it's going to be good just to support everything. And the ones I actually wear daily are very expensive, but my health insurance pays for them.

Helen

Well, I was going to ask you about this, so, I mean, I guess you've got a bit of a flavour of the UK-NHS kind of side of things and the German side of things. What are the biggest differences that you. That you've noticed? Because generally you have to...it's not private? You could take out a national health insurance and that covers it somehow?

Hayley

Some people can have private insurance and some people don't. So I'm a freelancer, I'm just on, like, the standard health insurance. I pay monthly. Okay, so we all pay monthly at the health insurance. People who have, like, a normal...a normal job, like a contracted job, it gets taken out.

Helen

It's one of your benefits.

Hayley

But me, I have to, like, I have to pay it. And it's quite expensive. For a lot of people, the minimum is like €300.

Helen

Right. A month? Okay.

Hayley

Yeah. So it is quite a lot of money. But the benefit is, I would say, is that we do get seen quite quickly.

Helen

And is your journey all directed via a GP or do you. Do you decide who you might want to see?

Hayley

I decide. So I just go to them and ask for appointments and the pessaries and everything. You just have to pay €10 when I go pick them up and the health insurance pays.

Helen

I mean, when you were saying you might have to wait eight weeks for an appointment, and I was thinking, in the UK at the moment, the waiting list for gynaecology or urogynecology, to see a consultant is immense. I mean, a lot of people are going to be waiting more than a year to do that.

Hayley

It's just insane. And I don't know how they can do that, because this is such an emotional...yeah, you can't. You don't have time. It's not just a physical thing, it's a mental thing. You cannot have people waiting a year when they've got maybe children at home they need to look after as well. And it's just really, I think that's shocking. But we're lucky we do have our gynaecologist. You can just...I can just go at 08:00 and say, can I see you today? And they have some appointments where you can just sit and wait to see her that day.

Helen

Wow, that's amazing. I mean, I'm moving to Germany. Let's all move to Germany.

Hayley

But she didn't...she told me I didn't have a problem.

Helen

So, you know, getting the appointment is one thing. Getting the advice and the support that you need is maybe another. I mean, is there anything...I mean, you get a different perspective after the fact, don't you? But is there anything you wish you would have known when all of this happened to you or advice that you would give to other women who suddenly start feeling like something's not right?

Hayley

Yeah, I wish I would have known prior to having the prolapse that that is something that could happen, so that maybe I might have been able to do some things that prevented it, maybe not, but at least I could have tried. And when it did happen, I think, don't take the first answer, like me. If somebody tells you it's not but you still feel like something's wrong, go and seek out more support. There are so many support groups online as well, like on Instagram, Facebook, groups of other women with prolapses. And just connecting with other people really helped me as well, because you could see positive stories. There are, of course, negative stories, but then you're all in it together. You're not alone.

And also, just for me, it did get better the moment I said, I either choose to live my life crying every day and sad about it, which is also fine. You know, feel the feelings that you need to feel. But do I want to live my life like that? No, I don't. So let's just deal with what we have and go on. And eventually, for me, my personal, it started to get better.

Helen

Told you. You can follow Hayley on Instagram. She's @theschoebergfamily. I'll link it in the show notes, along with some resources about vaginal pessaries. Every time I think I've got a grasp of what's out there when it comes to pessaries, there is something else, isn't there? You've been listening to Why Mums Don't Jump with me, Helen Ledwick. If you enjoyed it, please spread the word. Tell a friend, leave a review. It all helps others to find it. And you know how much I love hearing from you, so get in touch on socials or through my website. Or you can also sign up for emails. I promise not to spam. And don't forget there's a book based on my own experience of prolapse, as well as some of the stories and experts from the podcast. It's called Why Mums Don't Jump. You can find it wherever you buy your books or through my website@whymumsduntjump.com, thanks to everyone who's done that. Bye for now.

Why Mums Don't Jump is sponsored by iMEDicare - Pelvic Health Naturally. IMEDicare provides devices or products for pelvic health that are safe and easy to use, helping you to manage your symptoms while you're on the way to recovery. Products like Lumana activewear - fitness leggings and running shorts that have absorbent underwear built-in, for protection from leaks. Whether that's wee or sweat or period blood or discharge. And the leggings have a phone pocket, which is music to my ears. You can find Lumana via the affiliate shop on the Why Mums Don't Jump website, where you'll also find a discount code. Thanks to the team at iMEDicare.