I also at times pushed him away as well, because I didn’t feel like I was a woman anymore, because I didn’t have a, I didn’t have a womb, you know, and that was, that was really, really tough for me, because nothing, nothing felt the same. Nothing was the same. So like the real intimate parts of your relationship as well, you know, that all felt different, after a hysterectomy. In fact it was not the same. And I found it was pointless. It had become, even when you’re not trying for a baby, I think in the back of your mind there’s still that kind of possibility, even if the most careful, even if you’re being the most careful, there’s still that thing in the back of your mind that that’s what that’s for. But I felt that I’d become like, I wasn’t a woman anymore, because I’d lost that, that skill, that kind of, the thing that I was good at, you know. I was good at having babies. I fell pregnant very, very easily, very, very quickly. I had no problems whatsoever in that respect, and I felt like I’d lost, and I was a Mum, that was my job. You know, that had always been my job, and I felt that I’d lost that part, even though I was still being a Mum to my other children, I felt that, and I hadn’t realised it was going to be my last pregnancy, and that changed, that changes your whole mindset. If you don’t know, if you think, oh this is definitely going to be my last one, I think you can possibly savour, you savour each moment a little bit more. But because you didn’t, its, you know, not only did you, is it a shock that that was your last pregnancy, you also then sort of, I’m sorry, you sort of miss out of masses, the things that you’d have really wanted to remember are the things you can’t remember.

Not being able to have another child has been like the most, the most difficult, difficult thing either, ever. Because [exhales] even for someone whois going through IVF, and has trouble conceiving there’s still hope. There’s even if they never get to have another child or a child, there’s always hope, there’s always that little may be it’ll happen, maybe you know. But when you’ve had a hysterectomy, there’s no way. And you just, you, you even fantasise about being pregnant. And I’ve, we counted how I’d never got to have a vaginal birth either, so that for me, has been a major thing, and, I think, I think that in itself is like, just one of those, not having a vaginal birth, is just one of those, itches you never get to scratch. it’s just one of those things you feel you should have done, and you never got to do, and as I say it’s, there’s just no hope, and that’s really absolutely no hope, there’s no hope of my falling pregnant. There’s, you know, there’s nothing, there’s no possible way that I could be pregnant at all, and you know, you think, you know, you kind of like, you convince yourself like for a while, you do become fascinated with being pregnant. I mean when like when you hear about like womb transplants and you know, women having ectopyou know, that would who had an ectopic pregnancy and managed to deliver a baby sort of ectopically. That was, that gives you a slither of hope, and you kind of thing, ohh if that can happen, then may be, you know, but it’s while you’re going through a complete sort of denial thing, and like which, every single month, when you should have your period, it just re enforces the fact that you don’t have a womb, and that is just huge. That, you know not having that, not having a period is bizarre, is just the most weird, weirdest thing ever, and even for like, my children, my girls, have no concept of periods, because there is no period paraphernalia in our house. Most little girls kind of get sort of an idea that there’s something that happens to their mummies once a month, because there is some, there is this paraphernalia or Mum sits down with a hot water bottle. Mum’s got a poorly tummy at the moment, you know, you get that kind of introduction. But to my girls, when they find out it’s going to be a shock, because they’ve never ever known mummy tothey have no recognition or recollection at all of the fact that I’ve ever, had a period.

And you know, that’s traumatic in itself for me, with not having periods. For a long time, and, but now I don’t miss them at all [laughs]. I don’t miss them at all. It means that it’s one thing I don’t have to buy, I don’t have to worry about. I can wear white jeans whenever I want, you know, [laughs] I can go swimming whenever I want. You know, it’s that kind of, you know, it’s a really, the whole experience, the whole experience is really, really traumatic

And as I say not being able to have any more children has just been, because we wanted such a large family so, you know, you do stuff, you do weird stuff though, like get three dogs you know, [laughs] kind of, I know, and I’ve got a Reborn as well, which is like a doll that looks like a baby and that’s quite nice as well. And it’s quite nice if you want to go like, Ah that’s a nice baby You know, and then put it back. And it sounds like completely bizarre and mad, but if that’s, if that’s like, for a while, I think you just have to allow yourself to be a bit bonkers if that makes any sense whatsoever. You have to allow yourself to go through the process until you’re at a place where you’re happy, and that takes, it does take a long t

it’s going back and reading some of my notes. I did do that. I went back and read sort of what time things happened and it’s not so much, it’s getting, it was bits and pieces. I’ve got bits and pieces from kind of like everybody. You know, just when people were like talking to me. But its, it’s really surreal losing time. it’s the most, even though it’s only a short, for me it was a short period of time. But it is really weird going to sleep on a Monday and then waking up on a Wednesday. Having had all this major thing happen to you. But its little bits.

Later on my husband talked to me a bit more about sort of time lines of things. But mostly from, from my notes, from the hospital, you know. But still there’s lots of blanks, you know, because not everybody knows everything. And talking to some of the midwives as well about it its. It wasyou know, it was like the most, like awful thing that could have ever happen to me at the time.

What would you have liked from him?

I would have liked to have had some kind of, or been involved in, I know from hearing through the grape vine that there was some kind of debrief that happened. That that my case was kind of obviously looked into and sort of, they kind of had a look at what had went wrong. And I would have liked to have been involved in that. I would have liked to have had, not even a say I would have just liked to have known what had happened, because I still don’t know to this, to this day, quite what happened. I just kind of know just kind of bits and pieces and that’s what really frustrating is like there’s bits and pieces in my notes, you know, I know that, I know how much blood I lost. I know that I had a few injections of like Oxytocin I think it was to try and get the womb back down. I know I was open for a lot, I know I was in theatre for a long time because of the time I went in, and the time my Dad said I came out. So I know, and I know that another surgeon came in from one operation he was doing and he came in, but that’s only because that’s what bits and pieces. I’ve never had one person sit down with me and say, Okay, so you went in at this time. We started to do this, and then that went wrong. So we did this and then this happened. We did this and this happened. And then finally you had a hysterectomy and we did this That’s never, ever, you know, really been made clear for me. Which again has, I think that hinders part of the healing process because you do think, you know, how the heck happened? You know. So I think that a major sort of thing. I think the fact that I had no information on hysterectomy, that was like a major thing.

There was a massive lot of guilt for him as well, because obviously as the father, as the man, obviously he’s contributed to me being pregnant, so, you know, and he just, he just couldn’t, he just couldn’t cope. He just couldn’t, because everyone was asking how I was, physically. I had a lot of people ask how I was physically. But nobody else really asked how he was. And how he was coping.

And he didn’t cope very well. And people didn’t know how to react to that. That side of things was really, really. Even our GP’s didn’t, they kept kind of, well it was almost very sort of like, oh pull yourself together, you know, it didn’t happen to your wife, and, and, it was a long, long time before we got any support at all.

He was put onto a waiting list, which was about, there was eight months just for an assessment. So during that time, the, the panic disorder just gets more deep seated, and more worse, and so he, he really struggled. He really struggled.

And so what happened, he saw someone after eight months did he?

Yes, he saw, he had an assessment after eight months. They he had, so he went on medication for a while. He had a very, very brief counselling. He had literally six sessions because that’s all that the government sort of says that you’re allowed now. We, we saw a counsellor at the hospital who counselsA the time he counselled people who’d had sort of, more sort of like still born and things like that. Nobody was equipped to kind of deal with this quite unique situation. And it’s just, it’s all theit’s all the toughness of having a new baby. Plus all this other sort of trauma and upset. And we just, I think we are just one of the lucky couples that have stayed together. Which was not, it wasn’t easy [laughs]. You know, we came really, really close to not, not staying together. Which no one would believe, because we’re a very, very close couple. Hence why my husband took it so badly in the first place. Because he just couldn’t imagine his life without me, and it’s just horrendous, and it just impacted us on like, in every single sort of, every single part of our life, because then you know, you’ve got then financial hardship comes in, and then that’s an added worry and that’s an added stress and that’s sort of more on top of you.

There was, there’s literally, you know, barely any sort of support that you could kind of like sort of put your finger on. it’s really, really difficult. And I do think that you know, it comes down to be sort of ill informed.

How long was your husband not able to work for?

He’s never returned to work.

He’s never returned to work?

No.

Okay. What did he do?

He was ahe did care work. So he couldn’t go back to a hospital. So it made that quite hard. And so he, he’s just, he’s just stayed at home, and settled in to being a house husband now, so [laughs].

What would you say, I mean its five years on
Yes.

He’s much better, yes, in the last, I would say in the last six to eight months he is much more like he used to be. I’d say for a good three years he was in a place, and I didn’t ever think that maybe we could ever get out of it. Because, it’s like, if you had, if you were stabbed somewhere and you

I feel that with such a traumatic event, that you know, you’d, I don’t know, you’d expect them to get. That there should be some sort of counsellor or somebody to come in and talk you through sort of some awful experience, you know. Because this was really a complete devastating life changing experience. And it as treated very clinically. But basically I should just be grateful that I’m alive and that’s the end of that. You know, my consultant came in to see me, who was a man, I will point that out. Came in to see me, because thatFriday I was still in HDU on the Friday. I was transferred back to the maternity’s version of HDU on the Saturday. He came in to see me on the Sunday and had said to me. How do I feel about having a hysterectomy And I said, Well I don’t really know yet And he said, Oh well, you know, its better that you’re alive without a womb then to be dead with a womb Which is true, but at the same time it’s a really, you know, loads of people want to say things to you as well afterwards. It was like, you know, oh well, you’ve got three children, so that’s okay. You know, there’s lots of ways peoplebecause it’s because uncomfortable. it’s a really uncomfortable thing for other people. Because you don’tlike you go to a Mum and toddler group, and, you know, you’re the one that’s had a hysterectomy. So no one wants to say anything. Other people feel uncomfortable with the fact that if they’re pregnant, it’s a really, it’s not a very nice place to be for a while, and you feel bad, because you’re just, you do feel quite resentful at the sameThey have reason to be kind of wary, because you do feel, it’s an awful feeling. it’s that, it’s a real, it’s a real empty sort of feeling.

And I was very ill afterwards. I went home very quickly afterwards more on my insistence than anyone else’s. I just didn’t feel that being in the hospital, I wasn’t having any medications or anything, and that I just needed to get home to my daughters husband, and try and get back some normality that I’d already been away for two months.

And it’s a really, it’s just such a taboo sort of subject. And you knowbecause peopleI mean even now, like with all my girls all close together. I mean when they were little because of the age that they were, we had a triple buggy. So they were all in, they all had a little seat, and you know, complete strangers would like, you know, like make comments like, Oh, you know, you’re going to keep going until you have a boy And you know, and it’s really sort of, it’s quite harmless sort of things and I wouldn’t say, Oh no, I’ve had a hysterectomy I’d say, Oh no, threes enough for me And even now, people say, Oh you know, are you going to have any more And I don’t ever say, No. Because I’ve had a hysterectomy I will say, Oh no, I’ve had enough Or, I’ve done my bit for mankind. Three girls is enough to sort of keep the race going And you know, because it’s awful, that, saying that to somebody is just, because it makes, it almost ruins their day, you know, and makes them feel bad. it’s like, to me it’s almost as bad as like the old you know, mistaking someone for being pregnant. Oh when’s it due And it’s like, Oh I’m not pregnant People remember that kind of thing for ever. They will recount the tales to all their friends. Oh do you remember when I said, you know, it was just horrendous And I think that’s similar, it invokes a similar sort of feeling, is to say, Well no, actually, I can’t have any more children I’ve had a hysterectomy. And I had a hysterectomy in a really traumatic way, when I gave birth to my last daughter, you know.

It was like, you know, oh well, you’ve got three children, so that’s okay. You know, there’s lots of ways peoplebecause it’s because uncomfortable. it’s a really uncomfortable thing for other people. Because you don’tlike you go to a Mum and toddler group, and, you know, you’re the one that’s had a hysterectomy. So no one wants to say anything. Other people feel uncomfortable with the fact that if they’re pregnant, it’s a really, it’s not a very nice place to be for a while, and you feel bad, because you’re just, you do feel quite resentful at the sameThey have reason to be kind of wary, because you do feel, it’s an awful feeling. it’s that, it’s a real empty sort of feeling.

When you left hospital, what sort of follow up were you offered or given?

I was givenI had, sisters, I had a district nurse come out, because I had packaging’sand things to change. I was given, my health visitor came out to see me and our family GP came out to see us as well. And our family GP at the time was quite, he’s quite an old school, kind of GP. And he came and did a home visit, and I remember saying, Oh my goodness, you know, I must have nearly died, if he came out. Did a home visit. Do you know what I mean. It was likeother than that it was literally just a six week checkup and then that was it.

At the hospital or the GP?

At the hospital, at the hospital. Yes.

And
Which actually took place in the maternity hospital. So that was just not, that wasn’t very pleasant at all.

Who did you see at that point? Was that your consultant?

The consultant yes.

Okay.

Yes.

And do you feel that he explained to you sufficiently what had happened and kind of helped you?

No.

What would you have liked from him?

I would have liked to have had some kind of, or been involved in, I know from hearing through the grape vine that there was some kind of debrief that happened. That my case was kind of obviously looked into and sort of, they kind of had a look at what had went wrong. And I would have liked to have been involved in that. I would have liked to have had, not even a say I would have just liked to have known what had happened, because I still don’t know to this, to this day, quite what happened. I just kind of know just kind of bits and pieces and that’s what really frustrating is like there’s bits and pieces in my notes, you know, I know that, I know how much blood I lost. I know that I had a few injections of like Oxytocin I think it was to try and get the womb back down. I know I was open for a lot, I know I was in theatre for a long time because of the time I went in, and the time my Dad said I came out. So I know, and I know that another surgeon came in from one operation he was doing and he came in, but that’s only because that’s what bits and pieces. I’ve never had one person sit down with me and say, Okay, so you went in at this time. We started to do this, and then that went wrong. So we did this and then this happened. We did this and this happened. And then finally you had a hysterectomy and we did this That’s never, ever, you know, really been made clear for me. Which again has, I think that hinders part of the healing process because you do think, you know, how the heck happened? You know. So I think that a major sort of thing. I think the fact that I had no information on hysterectomy, that was like a major thing.

Yes. A long, long time yes, yes. I mean the actually [sighs] I mean because afterwards as well, like, you get, like odd kind of when your kind of like nerves are all sort of knitting back together again, you get lots of like sort of like little like pricking sort of pains, like little like elastic bandy kind of, that’s the only way you can kind of sort of describe it. it’s like little elastic bands sort of like pinging, sort of sensation. And that, that can occur for quite a while afterwards a year to eighteen months afterwards where everything’s sort of knitting back together. You give yourself time to heal that’s a really, really massive like. Although like obviously I had the three kids and stuff, is when you’re tired go for a sleep. Remember that you’ve had like major, major surgery. I know like lots of women have hysterectomies nowadays, but it is major, and if you’ve lost it in a traumatic way, you know, it, give yourself a bit, you’ve got to give yourself a bit extra, and if it hurts don’t, don’t do it. If you’re still getting pain when you’re picking things up or you know, it’s not to push yourself too hard as well, or to be too hard on yourself. And just say well, it’s just tough, I can’t, I can’t do(I don’t know) I can’t do the hoovering today, I’m just too tired Or, Its causing me too much, oh, I think it might overdo it You know, because otherwise you set your back, yourself back, so much, because I’ve done, you know, so many times like, I think I’ll do that, then I’ll do that, and I’ll do that, and many, you make it worse for yourself. Because rather than having a rest and then over the next couple of days being able to do everything, you push yourself and then have to take a week off, because you know, you’ve really pulled something, you know, something’s not quite right.

The complications that I’ve had personally is I’ve had lots of bladder problems where my bladder was handled and things like that, so irritable bladder so frequent urination, easily to get like urinary tract infections. The sort of, like during intercourse, it can be, at times quite uncomfortable. You, for me, the worst for me is like the bowel problems that I have, I’ve got a prolapse. My bowels were handled, because I was left open, they, they tried for a long, long time to get the wound to shrink to stop the bleeding and they did try that for a long time. So my bowels were out in the open, I supposed to air for quite a long time. And the more they’re open to the air, they become sticky and the more they’re handled, they become sticky. So you get liked adhesions, where they kind of stick together. So I have a lot of adhesions. And as I say, I’ve got, not the same, before when you can decide, you know, I want to go to the loo, you know, you think oh I’ll go to the loo before I leave the house, you know, you can, but when you’ve got like bowels problems like I’ve got, you know, it’s not the same sort of push as you had before it’s, you have to kind of learn, go back and learn how to go to the loo again which can take sort of a lot of time and a lot of patience and a lot of chopping and changing, but it’s going back, it’s not to be embarrassed. I spent years being embarrassed about it and getting nothing done at all. I’ve had, like nothing done. I’ve kind of suffered in silence and you think oh you know, I don’t want to go in and talk about my bowels or have anyone sort of think about that particular area and stuff. So instead, especially being a young woman, the last thing you want to do is go in and talk about bowel and bladder problems, but I’ve recently gone and, and seen someone and then they’ve referred me back to the gynaes now. So I will go back and sort of have something done. I’m not quite sure what, but they’ll do something to make life bettits not to suffer I think as well. it’s not to try and soldier on, you know, if it doesn’t feel normal, then it’s not normal. If you’re, you know, your body is going to be completely different afterwards that’s what I always believe, but there’s a difference between it not feeling the same as before, and it feeling wrong. There’s something wrong with you, and that’s really important is getting that sorted, is being persistent and going back and asking, just asking is this normal? You know, is it normal now, that you know, because you can feel your bowels closer to the front now, where if you didn’t before, so you can, it sometimes feels like there’s something moving inside you, which is really, really bizarre. Which is a lot of women who have had hysterectomies like this, have this experience. And you know, it’s not being worried to keep going back to the doctors and saying, Isam I normal, is this normal Because you know that if you’ve never experienced it then you don’t know and they can tell you yes or no. And if it’s not then there’s something that can be done to put it right again, you know.

I was in a lot of pain afterwards and there was noWhen I went home there was no information on hysterectomy at all. Especially not from an obstetric point of view, and none of the midwives knew anything about it. Literally a few days after I got home, you don’t, you also don’t have any bleeds the same way as you do after you’ve had a baby. You don’t have any of that. So that was really surreal. You, I was left with an open wound from where like, if you have to have a drain in, you had that.

I didn’t even know how a hysterectomy worked. For all I knew you were just, just the womb was taken out and you were just left kind of open at the top. There was no, for me, it was only literally like, I must have been home a few days, and I had all these black bits come out, and when I, when I like rang up my doctor like, I’ve got black bits You know, and they were like, Oh that’ll be your dissolvable stitches. That hadrdquo; So the top of the vagina sew the two parts of it together so you become like a cul de sac. That’s the only way I can sort of describe it [laughs]. Just like that. Because there’s no way or anywhere to go any more. But, and that was, I didn’t have any idea, and in the end my husband went out and from like a pharmacy, they have like these little books that you can get about allergies or diabetes and there was one on hysterectomy and when he was picking up a prescription for me, he picked that up. And that’s the only way we knew anything about hysterectomy was that way.