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Action on Postpartum Psychosis

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Delayed / Late Onset Post-Partum Psychosis

Emilyr123 profile image

Trigger warning: section, separation from child, self-harm

Hi 👋🏻

My first time posting, I've just discovered this forum which is a bit gutting for me, wish I'd known about it sooner.

During my 2019 pregnancy I was flagged as at risk for PP due to a family history of my mum experiencing it. Following the birth of my little girl I was very fortunate to not get PP and I thought I was in the clear; I had no idea there was still an underlying risk. Fast forward to a year ago when my girl was 18 months old and I dramatically reduced breastfeeding. Within a couple of weeks I became very ill with (what was eventually diagnosed as) delayed PP and it was compounded by having recall of repressed memories of childhood trauma which I think really created a perfect storm. I spent a total of 3 months hospitalised and sectioned.

I'm gratefully recovered now but am deeply traumatised by everything that happened. While I was ill I took an overdose that could've been fatal and regularly tried to ligate as well as other self harm. For the first month of being hospitalised I had injections administered to me while restrained as I refused medication. A lot of other awful things happened that I could just spend hours recounting. After having not been apart from my little girl for a day in her life, to begin with I didn't see her for 2 weeks and then just for hourly visits a couple of times a week as the hospital was quite far from my home. At the time I was completely out of it so it didn't really affect me but now I deeply grieve this time we were separated from each other.

I look back now with so much sadness and confusion and I'm still trying to make sense of it all. So many why's I feel like I'll never have the answer to. I've felt really alone in this, I've never spoken to another mum who's had PP before apart from my own and she's not very good at opening up, I'm sure from her own trauma. From a psychosis POV I'm completely recovered now, the symptoms dissipated after about 5 months, followed by depression and severe anxiety for a few months. Now on the whole I'm completely back to myself but I have PTSD from it all. I have weekly therapy sessions which do help but feel like it's going to be a long journey to acceptance and peace.

I guess I'm just reaching out to connect and also see if anyone else experienced delayed / late onset PP or after stopping breastfeeding? I've not been able to find much from reading up on it, mainly some discussions of PPD after weaning. I never knew it was a risk and it just completely took me and my family by surprise. We're still healing from it but I'm so thankful to still be here and to be well again.

I'm currently 37 weeks pregnant with my second baby which has actually turned out to be a blessing and I'll probably make another post with some questions about that.

Thanks if you made reading it this far 🙂

Emily x

14 Replies
EmiMum profile image
EmiMumVolunteer

Hi Emily123,

Welcome to the forum and congratulations on your pregnancy. I am so sorry you experienced late onset pp followed by depression and anxiety. It is a really traumatic illness.

I had pp in 2018 following the birth of my eldest daughter, in my case it was within a few days of the birth, but I know of other mums on this forum for whom it also happened after they stopped breastfeeding. I am sorry that experiencing pp so late meant you could not be with your baby in hospital. It must hurt a lot to look back to those days. I am very sorry you had to go through that.

Your post resonated with me as my mum also experienced postpartum psychosis with her first baby. The causes of pp are varied and it is sometimes described as the perfect storm, hormonal shifts, genetics, underlying mental health conditions, lack of sleep all seem to be common patterns.

I went on to have a second baby in October last year, luckily with no recurence of pp. Are you under a perinatal mental health team at the moment? Is pp figuring prominently in your notes, so that everyone who will care for you is informed? You mention you would like to post about this separately, do let us know if you have any questions.

You are most certainly not alone in this, there are plenty of brave pp mums in this forum who have gone through similar experiences. Do take good care, hope that you are able to rest as it is difficult so late in pregnancy. Will be thinking of you

Emilyr123 profile image
Emilyr123 in reply to EmiMum

Thank you so much for your response ❤It's reassuring to hear it's happened to others to at least not feel so alone in it.

I'm sorry for what you went through with your first but so happy for you that it didn't reoccur with your second. Gives me hope that it's not just a given that it will happen again!

I do have perinatal support and under the Early Intervention Team care too. A care plan has been made that states my birth preferences/PTSD triggers and the PP history. So that all reassures me, that there's a safety net there if it's needed. Just feeling nervous about it all of course, birth is unpredictable at the best of times!

Thank you again 🙂

EmiMum profile image
EmiMumVolunteer in reply to Emilyr123

Hi Emilyr123,

I am glad to hear that you are well supported by the perinatal and early intervention teams. A good birth plan made a lot of difference for me. Mine was not a particularly long one, but it had a lot of thinking and chats with different people behind it, which meant that I was truly happy with the choices I made on it.

Something to keep in mind that my perinatal team was very good to point out was that there is an increased risk of both pp and pnd with a previous episode of pp. I had moderate depression in December last year, 2 months postpartum. I took antidepressants and had therapy and within a few months I was feeling better. I did not need to be hospitalised for it and having been warned both me and my husband were on the look out for early warning signs, so I reached out for help very quickly.

I wish you all the best for your birth, you sound so well prepared, it is understandable to be nervous as so many things feel out of our hands, but in my own experience I found the second birth a healing experience. Take good care, will be thinking lots about you

Emilyr123 profile image
Emilyr123 in reply to EmiMum

Thanks for this. You're right that having the conversations with different professionals is a big part of it and just planning for various scenarios etc.

It's hard to contemplate getting ill again but I know it's for the best to be prepared.

I have the same hope that this will be a healing experience for me, especially as I'm planning a home birth 🙏🏻

Thank you ❤

Hi Emilyr123

I'm so glad you have found us and have written so openly about what you have been through. I'm so sorry you have been through such an awful traumatic time. I'm so glad you have come through it, and are feeling better, but I'm not surprised that you have been struggling with the memories and trauma of what happened. That's great you've been having weekly therapy.

I'm Ellie, I'm one of APP's national peer support coordinators. I had postpartum psychosis in 2011 after the birth of my son.

I'm not sure if you live in the UK? I presume you may do? As Emimum says, I hope you are being supported in your pregnancy? if you are in the UK there should be a perinatal mental health team in your area who are supporting you? if not you should ask your midwife or doctor about it?

I also wanted to make sure that you knew about our other peer support, other than this forum. We can link you with someone for one to one peer support, via email, phone or video call, or in person if you live nearby to each other. For example we could link you with someone who has experience of having a baby after experiencing psychosis. We also have some regional peer support groups in some areas of the country. There's information on our web page here:

app-network.org/peer-support/

I'm so glad you've found us. Do know you can write whenever you need to here,

Take care,

Ellie

Thanks so much for your response ❤I do live in the UK and have good support from my local perinatal team and EIT thankfully.

I didn't know about your peer support network, thank you so much for telling me about it. I'm definitely going to look into it 🙏🏻

Ellie_at_APP profile image
Ellie_at_APPPartner in reply to Emilyr123

Hi Emilyr123, I'm so glad you had support from a perinatal team , and EIT team.

I'm glad you've found us, and can take a look at all the peer support we offer, no pressure with any of it of course :) I mainly wrote here on the forum when I first found APP!

Ellie X

Hi Emily, I wrote a response but phone crashed - screen grabs attached!

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Part 2

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Thank you for your response ❤I'm sorry to hear you too have had PP, thank you for sharing your story. It's the first time I've heard of other people getting it months down the line and helps me to not feel like it was something wrong with me.

I'm sorry that you also went through the experience of being separated from your children. I feel like only people who have been an inpatient in a psychiatric hospital can fully appreciate what it truly feels like. My family and friends are so supportive and empathetic but I just feel like they won't ever understand the trauma of that experience. It makes me feel like an island.

Thank you for giving me perspective on the journey in the long run, it encourages me that the healing continues and me and my family will find a way to incorporate it into our story x

Hello lovely! I experienced delayed pp pscyhosis when my baby was ten months old AND then some illness when stopping breastfeeding and got my period a few months ago.

I can relate to you with the trauma after experiencing such a horrific illness. I promise it eventually dilutes until it doesn’t swallow you completely. I would obsess all day long about how to prevent it for about a year after until I finally stopped obsessing and had to finally let my self off it wasn’t something I did. Easier said than done. It was like another illness all over again experiencing the fear that it could happen again. But it does get better and I can’t believe I can actually say that now to someone else! I never could have imagined I would stop living in constant fear about it.

I’m so sorry you experienced such trauma and separated from your child. That really is so sad for you to reflect on. It’s ok to feel that sadness for your lost time. Acknowledge it and give your self a hug 💖 you have this time now together for the rest of your lives, I know it doesn’t make up for it, I felt the sadness for not being able to look after my kids too, but I’ve been so well for the most part these past two years since illness I feel really happy that I can be this well mum for them now, you know? Each day at a time xx Feel free to chat anytime. We have been through similar experiences and I haven’t met anyone else either who had the same as me xx

Thanks so much for your reply ❤ It made me feel quite emotional as I've felt pretty alone having gone through it so late, it's made me feel like an imposter or that there's something wrong with me for it to have been so delayed.

I'm sorry for what you've been through, I empathise so much. So true what you've said about the fear of reoccurance. That the fear can consume you if you let it, it's no wonder when you think what we've been through. With being due to have my second baby soon it's one of the biggest things I'm fighting, just trying to be at peace with myself that all I can do is look after myself and what will be will be. Very hard though!

Thank you for such lovely words. Being kind to myself is definitely still a work in progress but it encourages me to hear what a good place you're in now; makes me feel it can be possible for me too xxx

I get what you mean about feeling like an imposter! Before having had psychosis I heard maternal mental illness can happen anywhere up to a year, but once I had it the doctors didn’t jump to say it was post partum specifically. Although, I know it was given a lot was to do with my baby/ kids. Definitely more common to happen in those early weeks which is for sure hard to always relate to other sufferers. I haven’t met anyone else who had it delayed or after stopping breastfeeding either! There’s not much out there on it either as you say. I spoke to a lactation consultant and she asked her colleagues if they had any info and she couldn’t come back with an awful lot because it’s quite niche.

Gosh I can’t even imagine how you’re feeling being pregnant worrying about it all. One thing they say is that you’ve been through it before so you know how to catch those early symptoms and get the right help asap. There’s a good chance it won’t happen again either and you could get on meds early to prevent it being a big illness like previously. There’s lots of info in this site about second pregnancies which I’m sure would be helpful to you.

You are a strong survivor and you will be in a good place again. These things take time, I know it’s horrible having to wait to feel like your self 100% xx

Also, did you stop breastfeeding dramatically or slowly? Mine was dramatically so they think that’s what could have made it happen too. All those hormones at once. Perhaps weaning slowly would help next time xx

It's the delay in prognosis which is tough as well isn't it? I remember even in the thick of it having times of clarity and thinking, what on earth has happened to me? It's a relief in the aftermath at least to get answers and while I'm not medically trained you realise you know yourself best and what's normal for you and can make connections between events that doctors perhaps wouldn't see.

Interesting that you spoke to a lactation consultant and they didn't find much out there either. I can imagine it's happened to many other women out there and they've never gotten that prognosis which is sad as they've perhaps not got the right support/answers.

Thanks for the encouragement, I've been having a look at the guides. Feel like I'm as mentally prepared as I can be if there's such a thing in this kind of situation. Yeah I weaned quite dramatically too. I went from on demand nursing to literally overnight going to just a couple of feeds in the daytime (my little one had been particularly nursing/soothing through the night and I ironically just couldn't cope with the disrupted sleep anymore). It's a really good point. Definitely going to be very careful this time around breastfeeding and get specialist support when the time comes for weaning xxx

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