Conditions that threaten women’s lives in childbirth & pregnancy

Hysterectomy

For some women, the obstetric emergency they experience during childbirth results in doctors needing to perform a hysterectomy (surgical removal of the womb).

In many cases this surgery is necessary because doctors are unable to stop the bleeding (haemorrhage). In other cases it is done because the womb is the site of infection (e.g., septicaemia/blood poisoning) and antibiotics are not effective.

In this summary we discuss the experiences of women who had a hysterectomy with childbirth.

Preparing for a hysterectomy and why it was needed

Some women were aware before the operation that a hysterectomy was going to be performed and why.

Anna, for example, had septicaemia and doctors explained to her that if the antibiotics they were giving her did not work, they were going to have to move to ‘plan B’: a hysterectomy. She was grateful that she was given some time to prepare herself and her family for the outcome.

Anna was told by doctors that the antibiotics had not controlled her septicaemia and she would need a hysterectomy.

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Age at interview: 22

Sex: Female

Age at diagnosis: 21

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But they said Plan B would be a hysterectomy and yes that did hit me when they said it, but I just thought, right, I want to ring my partner now, tell him, you know, tell him the situation. Just basically make sure everyone’s prepared because it’s not something that’s taken lightly. So I told him and he was really supportive about it and he sort of told me to stop thinking about the negative side and you know, the antibiotics will probably work and you know, everyone was really positive about the antibiotics but I knew, I knew what was going to happen. I didn’t, I just I had a sense, I just knew when they said it that that was what was going to happen.

24th of December, Christmas Eve, they came in and he told me that he was afraid the antibiotics hadn’t worked and they would have to operate. So I begged them to leave my ovaries in. I don’t know what made me think about my ovaries. It wasn’t to do with hormones why they normally would, it was probably just to do with the fact that you know, the eggs, the baby, you know, the fact that they may have taken something, they may have taken that away, but if I have my eggs, I may still have like a chance.

So they, yes, that’s what they said. But I can’t remember them telling me that they were going to me into like, I say like an induced coma, but apparently it’s like, sleep. They put you into like, they don’t call it a coma, because it, it wasn’t a coma but it was like a coma. A medically induced sleep kind of thing. And like [partner] told me that I was told, but at the time, now, I can’t remember being told.

Yes. But it was when they actually said about having a hysterectomy, I was, within the hour I was in surgery. It was like boom gone. It wasn’t really much. There was no discussion about it.

Can you remember them telling you. How was that?

I can remember them yes. [Partner] was there. And my Dad was there. And the, they said, you know, “The antibiotics haven’t worked… unfortunately the antibiotics haven’t worked. We’re going to have to take you down and you’re going to have a hysterectomy.” And my Dad started to cry. And I just looked at him and said, “Go home. I can’t, I can’t deal with this right now.” So that was the last thing I said to my Dad. He did walk out, bless him. And I just basically told [partner] I loved him. Just literally. And then obviously they had to put this needle in, and [partner] left, because he couldn’t… He didn’t leave the hospital, but he left the room, and he said, you know, he wanted to give them space, but I don’t think anyone could watch that. You know, [small laugh]. But no, it was…

So yes, I remember going down to surgery and being frightened, not frightened but frightened that I hadn’t told [partner] I loved him enough. I mean something inside me must have known, because I needed make sure that [partner] knew I loved him, and the boys knew I loved them. So something inside of me knew to make sure that I said it. Because I can remember looking back and, and [partner] being stood with the nurse, and then going in for the operation. Yes.

However, often the nature of the emergency means that hysterectomies are performed to save a woman’s life, without the woman having time to prepare herself. She may not fully take in the full impact of what is happening until hours or days later.

Alison T was very ill with amniotic fluid embolism (AFE), a very rare complication of pregnancy in which amniotic fluid, fetal cells, hair, or other debris enters the mother's blood stream via the placental bed of the womb and triggers an allergic reaction.

Alison T was unaware for several days that a hysterectomy had been performed.

She said that ‘it was the least of everybody’s worries at the time’, but she went back to see the consultants a few months later and they explained the operation to her.

Anna and Karen were told by doctors during the emergency that a hysterectomy was likely.

Alison haemorrhaged (heavy uncontrolled bleeding) after the birth of her son and woke up in intensive care, where she was told she had had a hysterectomy. Doctors explained to her afterwards why it had been necessary.

The consultant who had performed Alison's hysterectomy came to see her several times during her stay in hospital and explained why the operation had been necessary.

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Age at interview: 32

Sex: Female

Age at diagnosis: 30

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So the consultant who performed the hysterectomy did, spoke to me on several occasions actually throughout my stay, about what had, what had happened and why it had happened or not necessarily why it had happened but why, why she’d had to do the hysterectomy and she did come and speak to me on that first day and see, to see how I was, and talk through what had happened. And explained obviously that they, the steps that they’d taken to try and, so that they didn’t have to do the hysterectomy, and why it had been necessary to the hysterectomy in the end as well. So…

Can you remember why it was that they had to do it?

So they said that once they’d delivered my son that my uterus wouldn’t contract. And because it wouldn’t contract, it wouldn’t shut the blood vessels off and therefore I was just bleeding and just wouldn’t stop. And they tried, there are several different techniques that they can try so massaging the uterus, they put a balloon in to try and sort of effectively blow it up and bring it back down again to see if that would naturally contract. They tried, my understanding is like big stitches to try and sew it shut, to try and shut it, so it was slightly stubborn and wouldn’t [laughs] wouldn’t do what it was supposed to do, and they’d given me so much blood and I just, they just said that there came a point where it was obvious that these steps they were taking just weren’t going to work. And so, the only option left really to save my life was to take my, take my uterus away. Because that was the only, the only problem. It was, that that wouldn’t stop bleeding so…

Physical recovery and pain

Women had varying experiences recovering from their hysterectomy. It was a major operation, and they were advised not to lift or drive for 6-8 weeks after their operation.

Mandy and Sarah said it was important to rest and give your body time to recover, to ask questions, and to see your GP for any concerns.

Pain control after a hysterectomy is typically managed with painkillers and women do not generally experience long-term pain after the operation.However, Alison continued to have an ‘odd twinge’ where the drainage tube had been taken out.

Sarah experienced ‘tingly pain’ for a while. Lisa experienced ‘inexplicable shooting pains' and often felt ‘as if something was splitting’ on her insides. She has been to the doctor frequently for reassurance.

Sarah experienced tingly pain after her hysterectomy and explains why she thinks it is important to give yourself time to heal.

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Age at interview: 29

Sex: Female

Age at diagnosis: 24

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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.

Fitness levels varied after their hysterectomy. It is normal for women to feel more tired than usual, which was influenced by how long they had stayed in hospital for and the nature of their obstetric emergency.

Sarah, who was in ICU for 2 days and then had another operation, found it took her a long time to get her strength back.

Karen, who also had an under active thyroid, described the 2 years after her operation as being a ‘rollercoaster’ where ‘I’ve gone from being a very fit person to being not as fit… and I find that very frustrating’.

Alison felt fitter and healthier than before she got pregnant. She said, ‘I think I definitely had a sense of wanting to get my body strong and healthy because I feel…that my body let me down’.

10 months after her hysterectomy she was able to run a half marathon.

Ongoing health issues

Occasionally women can have longer term problems following their emergency.

Sarah had bladder and bowel problems. Alison T still had regular bleeding because the doctors did not remove all the womb.

After her hysterectomy Sarah had frequent bladder problems, and 5 years on she still has bowel problems which will require surgery to fix. She feels it is important to ask doctors if anything doesn't feel normal.

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Age at interview: 29

Sex: Female

Age at diagnosis: 24

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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 bett… its 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, “Is… am 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.

Several women were worried that their hysterectomy would trigger an early menopause.

Alison was told that there was less chance of menopause being triggered because doctors had not removed her ovaries. She was relieved when she did not experience any symptoms of menopause after 10 weeks.

However, Anna was only 21 when she had her hysterectomy and was put on hormone replacement therapy. She was told to look out for hot flushes.

Cara was very worried about menopause kicking in because she knew from an early stage that she wanted to try for a baby through surrogacy.

Cara had a hysterectomy after her first child and was very keen to try surrogacy. She had her ovaries checked regularly to reassure her everything was fine.

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Age at interview: 37

Sex: Female

Age at diagnosis: 29

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No I don’t know. I was very, very paranoid, knowing that I wanted to do surrogacy. I was a bit worried about the necrosis, ovarian necrosis… I’d come across it in my reading. And you know, when you have an emergency hysterectomy and…

…that its quite a tough job as I understand it and I was worried that I would end up losing one or both ovaries and going into early menopause. I was worried obviously about going into early menopause, but also worried about, because I wanted to retain my eggs for surrogacy. So I started to go once a year for testing to check that my eggs and everything’s fine, and I did that each year at a local hospital. And each year I was getting fine readings. So that reassured me. I think I would have felt quite nervous and I think, even though I’d missed a couple of years, I think I’ll probably go back, just for peace of mind to know if I start going into early menopause, although that said, probably eight years later, I’ll probably go into menopause at the time I would normally. But you know, I think you just need the extra reassurance.

Impact on sex life

The impact of hysterectomy on sex life is complex and depends on multiple varying factors, including the type of hysterectomy/surgery done, body image, sexual partner’s performance, communication, and mental, physical, and emotional factors.*

For some women, having a hysterectomy had a big impact on their sex lives.

Lisa felt that sex was ‘rather boring’ after her hysterectomy. She felt that sex had 'lost its purpose because suddenly you sort of think there’s no function, because my down below bits don’t work like they used to so it’s very numb’.

Sarah described how her hysterectomy impacted on her intimate relations with her husband. She felt that nothing was the same anymore.

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Age at interview: 29

Sex: Female

Age at diagnosis: 24

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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.

However not all women felt this way.

Cara felt that her hysterectomy did not have a lasting impact on her sex life and said, ‘I’ve gone on to have a really, really healthy relationship with my new partner and I don’t feel any less a woman’.

Anna described how she rediscovered her sex life in the year after her operation. Although she did not feel as confident in her body sometimes, in some ways, things had changed for the better.

Of note, it is recommended to wait until the scars have healed and vaginal discharge has stopped (normally between 4-6 weeks), and until you feel comfortable with it, before having sex after having a hysterectomy (NHS, 11 October 2022).

Everyone’s experience and needs are different, and with appropriate support systems in place (psychological support, sexual adaptations, and support from sexual partners), most people are able to experience the same or better sexual functioning after a hysterectomy as they did before the surgery. *

Anna described how her sex life has changed since her hysterectomy. In some ways it has changed for the better.

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Age at interview: 22

Sex: Female

Age at diagnosis: 21

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And is your sex life very difficult?

It is and It isn’t. I mean I do need like lubricant now. But it’s so nice I’ve got a partner that understands. That’s what makes it all, all better, you know, because if you’ve got somebody with you that understands and it doesn’t make it into a massive deal it just becomes something that you do. It becomes another sort of act kind of thing, so it doesn’t make any difference, and like the feeling. I got told I might not be able to orgasm, because like the uterus contracts or something, but I’ve never had one that made my uterus contract. When I was pregnant yes, but not like before. So that was sort of something that took me a little while to do by myself. I didn’t want to do it with [partner] I wanted to do it by myself and luckily I did manage to, and I can orgasm and it’s different but it’s not better or worse. It’s just different and that is hard to explain. Like sometimes now I need to be more in the mood for it, so I was kind of, well before, before I had my operation I was quite highly sexed. I would have sex any time, there, just was really interested in sex. But now I’m sort of mellowed out a bit and it takes a bit of time for me to get warmed up and stuff, whereas at one time I could be really, really. But I don’t know why, it’s just sometimes I’m not and other times I can just want it all the time. And that’s hard because when I don’t feel like it, I just think well why? Because I used to. I used to want it all the time. But that is just like, I suppose that’s one of those things that when your hormones are gone, you know, you do just don’t want it sometimes. And that was hard to like accept as well. Because it’s such a change of personality, its, you know, my partner is used to me giving it, come on, let’s have sex, come on. Come on. And then all of a sudden I’m just like, oh I don’t really want it you know. But I can turn it down and it doesn’t bother me. But it’s healthier. It’s not, because it wasn’t like, it wasn’t an obsession before, but it was like, if he didn’t, it was well what’s wrong with me then? Whereas now I’m quite happy being like, “No, that’s fine, we can go to sleep. It doesn’t matter.” And it’s a healthier, more healthy I think then it was. So in a way it did change for the better but… I sometimes, like kind of if I don’t feel confident in my body though. Sometimes that does take its, take its toll. You know, the confidence issues and that does go up and down a lot. Sometimes I feel really confident. Other times, like, sometimes I feel so confident I’m just like, you know, happy to walk around in my underwear or whatever, but other times I just feel a bit like I don’t look great. I don’t feel, I mean he doesn’t care, but it’s how it affects you, you know, and I do have issues sometimes about womanly, how womanly I feel and things like that, because I’ve had two children now, you know, and my body’s not perfect in any way. But it’s just nice that I’ve got somebody that loves me for who I am. You know.

Impact on feelings of womanhood

Several women talked about feeling less of a woman as a result of their hysterectomy.

Rachel went back to work after 4 months and said, ‘I was really battered. I mean my body changed and I lost my uterus and my ability to have children’.

Sarah felt that ‘nothing was the same’ after her hysterectomy. She also mourned the loss of her periods:

‘Not having periods is bizarre, it is just the weirdest thing ever. And [for my daughters to] have no concept of periods because there is not period paraphernalia in our house’.

Lisa felt that

‘I’m the one that’s been left with no womb. I’m the one feeling like half a woman. I don’t feel as feminine as I used to. I don’t feel as confident as I used to. Nowhere near’.

Cara said she didn’t feel less of a woman following her hysterectomy. For her the hardest issue was the loss of her fertility.

Impact on fertility

The impact of a hysterectomy on fertility affects people very differently.

For older women who felt they had completed their family, the hysterectomy did not have a big effect on fertility.

Karen was in her early 40s, and she joked with the doctors that it would save her husband having a vasectomy. Similarily, Alison T, who was also in her early 40s with 5 children, was ‘not bothered in the slightest. I wasn’t upset about that’.

Mandy had a hysterectomy after her first child was born. Although she would probably have liked to have more children, she felt that she had come to terms with only having one.

In some ways, she felt thankful for the hysterectomy because it taken away the anxiety of falling pregnant again and facing another life-threatening emergency in childbirth.

Mandy feels grateful to be alive, without a womb, than dead with one. She sees lots of positives.

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Age at interview: 35

Sex: Female

Age at diagnosis: 28

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You know, sort of, I think the hardest time and it’s probably the same for most mothers as well, is sort of returning to work. I think that’s when I really started to feel, you know, the stress of it all. And you know, we don’t talk about it much now, but probably for the first three or four years it cropped up in conversations. I think that’s good and healthy that it’s not been forgotten. From my point of view, having more children, you know, and I always thought that will be fine. You know and it is fine, you get to milestones I suppose when they go to school and you think ooh may be another one, but I think the health care professionals because they made it so clear at the start you know, I’d rather be here than, you know, as my husband put it, dead with a womb [laughs]. I’d rather be alive without one. So, you know, I do look on it as being very fortunate really. So yes, I know, it’s funny talking about it again after such a long time.

And does the hysterectomy bother you still?

Like I said, I think because it was so clear at the start. So clear. I mean you couldn’t have made it any blunter. I feel you know, there are advantages and disadvantages to it. You know, I personally would have liked a bigger family. But then you look at our lifestyle now, and what we’ve done is we’ve obviously, you know, we knew, we know that we can’t have any more children. But I think in some ways that has shaped where we are now, six years, down, seven years down the line. You know, I’ve gone on to study, which I probably wouldn’t have done, until I thought I’d finished (having) my family. So that you know, that wouldn’t have happened yet for example.

I think from my, from [husband]’s point of view, I think he’s quite happy, because you know, we’ve got ourselves sorted now. The other side of it, and again, we have discussed this before in terms of, you know, if I didn’t have the hysterectomy, say the bracing of the womb all worked, that the womb was fine. We could have another child. The fear of then going through this potentially again. Even though they say that chances of getting it again are reasonably rare apparently. That’s what the consultant told me. I just don’t think emotionally I could have done that. Because not only is it my partner whose then potentially at risk of losing a wife, you know, I’ve got an older child.

So when I look at it that, I sort of almost am thankful that I had the hysterectomy because I’d rather than, because then, you know, the other option would be, you know, if we did get pregnant, would we carry on, or would we have to think about a termination and I just wouldn’t be able to do that. So in some ways there is the silver lining. We don’t have to worry about that, because you know, I’m not going to get pregnant. So we don’t have to come across that, that sort of bridge really. So we were very thankful.

But it’s fine. You know, the family understood, because I did make the time to explain it to them, especially to my Mother, who I think that at the time I was cheated or you know, why did this have to happen? But when I explained it to her she obviously totally understands and is just glad that I’m okay and she obviously saw me in that conditions afterwards. So she wouldn’t to go through that again either.

So on that side again just being very positive about it, and I think we both were day, well from the moment I signed the consent form to be perfectly honest yes, and very lucky because I’ve got nieces and you know, other children around me.

But yes, I can imagine for s

Loss of fertility may also be devastating. Lisa felt that while she could get over the horror of the rest of her experience, she would be living forever with the loss of her fertility.

Lisa feels that the most difficult thing to cope with is that she will never have another baby.

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Age at interview: 36

Sex: Female

Age at diagnosis: 35

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Now that’s the loss that you’re left with. That, I can get over the rest. I can get over the horror of what they did to me. I can get over the labour. I think I pretty much have. I can get over all the instruments and goodness knows what… that’s fine, I can get over that. Having to see the Pampers advert every day with the woman holding a baby and kissing its forehead and seeing a nappy advert, seeing, an insurance add of a man happily carrying his baby out of the, of the bank or whatever and literally, I can feel the pain, I cannot explain. Nobody on earth, unless they’ve been through it knows what that pain is like. Even infertile people, like I say, because there’s always an element of doubt, that it may happen again. I have, that elements gone for me. There’s no way, its ever going happen. I have no womb. And that’s a difficult thing to cope with. It’s impossible to make anybody understand that.

Sarah suggested that having a hysterectomy ‘is a taboo sort of subject’. When people stopped her in the street with her 3 daughters and asked if she was going to have any more, she felt she could never answer honestly.

She said the 'absolute lack of hope' was very difficult, ‘Because when you’ve had a hysterectomy, there’s no way… you even just fantasise about being pregnant… [no] sliver of hope’.

The whole experience of a hysterectomy and not being able to have children has been really traumatic for Sarah and her whole family.

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Age at interview: 29

Sex: Female

Age at diagnosis: 24

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Not being able to have another child has been like the most, the most difficult, difficult thing either, ever. Because [exhales] even for someone who… is 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 ectop… you 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 to… they 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

Anna had two sons and was just 21 when she had her hysterectomy. Although doctors left her ovaries, they failed, so she had no hope of getting pregnant again.

She said, ‘That was so hard. That was my last little chance gone and that broke my heart’.

Cara felt great pain at not being able to have more children, and it affected her relationship with her sister who had her own children.

Cara was devastated not to be able to have more children, and pursued gestational surrogacy. She successfully had twins through IVF with a surrogate in the USA.

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Age at interview: 37

Sex: Female

Age at diagnosis: 29

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So your sister was.. did she have children?

She had one child about a year older than my daughter at the time. And she’s gone to have another child and stuff and I couldn’t really share that with her. You know, she had her pregnancy, she had her child. I don’t even know her birth story, for her second child. I didn’t want to hear it, and she didn’t, she didn’t try and tell it, you know. So yes, you do lose that kind of right passage of being, you know, in that moment, but you know, I tried to tell myself that women had never given birth at all. So you do, you do start looking for people worse off than you, I think that’s a natural thing and you know, I know that obviously have a healthy baby is a real blessing, but there is a saying that was quite common the PPH survivors web site which is “the joy does not diminish the pain. Nor does the pain diminish the joy.” And you know, well meaning people say, “But remember you’ve got a beautiful baby.” And that’s true and you feel joy. But it doesn’t diminish the pain that you feel, not being able to complete your family. But neither does the pain diminish the joy. You can still celebrate and enjoy your child whilst living with the pain of knowing that you can’t go on to have the rest of the family that you wanted.

[Laughs]. Well. I arrived home and literally within two weeks, I’d decided surrogacy the answer. I’m not having it, you know, I always wanted more than one child. Oh look at this, you know, there’s this thing called surrogacy. And there is this amazing thing called gestational surrogacy. Because even though I’d had a hysterectomy I still retained my ovaries. And they were very clear about that. So I’m like okay well I’ve got my own eggs and I can use my partner’s sperm and create our own embryos. We just need somebody to carry them. And voila there’s the baby.

But of course it’s not quite that simple. And it took us the best part of seven years to actually find a route to success and we’re really lucky now, our twin daughters were delivered last year for us, so…

Some women had started healing from the agony of losing their fertility.

When interviewed 14 months after her experience, Anna said that not being able to have another child ‘broke my heart’, but she was starting to accept it and 'could cope'.

She commented, ‘It’s easy to sink, you have to be quite tough on yourself’.

5 years on, Sarah said that not being able to have another child had been traumatic. She advised others to ‘allow yourself to go through the process until you are at a place where you are happy, and it does take a long time’.