I am new here after coming across APP recently. I was very unwell after having my daughter 3 1/2 years ago, and I have finally come to terms with that fact it was PP. Unfortunately this was missed by many professionals at the time, the midwives on the ward following the birth, the perinatal mental health team and GPs. I was never submitted to hospital and never properly diagnosed. It was lock down so things weren’t running as they should and also made it easier to hide how I was truly feeling as a lot of my paranoia was that my baby was going to be taken from me and there was a plot happening to do so. Because of this I never disclosed a lot of what was going on in my head but there were so many other signs they could have picked up on especially the week after that I was in hospital after the birth. My husband called the perinatal mental health team on numerous occasions begging for help for me and he knew something was truly wrong. I did once end up in A&E as my blood pressure was extremely high after not sleeping for +7 days, but again was fobbed off with diazepam and that I was going to be having a zoom meeting with the perinatal mental health team in 4 days time. At that point I honestly didn’t think I was going to survive till that meeting.
Now 3 1/2 years on I often think about wanting a second child but of course really worry about having PP again. Also the fact that I wasn’t diagnosed makes me wonder what my support would be if I was to get pregnant again. Does anyone know if it’s possible to be diagnosed later down the line? Who i could speak to now about what happened? Whether a plan could be in place for certain meds of anything was to happen again? And even if I make the decision not to have another child I do feel like I want answers to what happened to me in case I ever relapse for any other reason.
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Thank you for your post, I’m sorry you had such a hard time after the birth of your daughter and that things were missed. I also had a baby during lockdown so I can understand how you feel.
I had pp with the birth of my daughter back in 2016 and in 2020 I went on to have a son and I did not get pp.
I used the peer support service on here
Jenny_at_APP or Ellie_at_APP will be able to give you more information on that. I found it really useful when planning and going through my second pregnancy.
I’ll also put some links below on a guide for planning a second pregnancy and a video from tommys and a guide to counselling.
I had preconception counselling to discuss a plan if I did get pregnant with my local perinatal team and when I got pregnant, I was well supported during the pregnancy and post natal period.
Whatever you decide I hope you can get the support you need.
Thank you for your reply and the information you have shared I’ll look into it all with more detail. I think preconception counselling could be really beneficial for me.
Glad your second postpartum was a more positive experience for you, and great that you can support other now after your lived experience.
I'm so sorry to read more details of your experience and how much was missed, especially with your husband desperately trying to get help for you.
You should be able to ask your GP to refer you to your local perinatal mental health team, and a conversation with your GP about your experience might be helpful too. I've certainly spoken to women who were retrospectively diagnosed when planning a further birth and talking through their previous experiences. I know it can be so hard to express our thoughts and what we're going through at the time it's happening, and being unwell during lockdown restrictions must have made things so much more difficult.
I had a consultation with Prof Ian Jones when thinking about a second pregnancy - there wasn't a perinatal mental health team in my area at the time so I accessed his second opinion service in Cardiff. He was the first healthcare professional I'd spoken to in any detail about my experience of PP (I saw a general psychiatrist after being discharged from the MBU, but we never actually talked about what I'd experienced) and that in itself was so so helpful and validating.
The insider guide Rachel has shared contains a lot of helpful information, and if you'd like to have a chat about peer support (and more generally) do get in touch - email app@app-network.org and/or complete our peer support request form (app-network.org/get-help/pe....
I'm sorry you went through this. I partly know how you feel, as I was in the postnatal ward for some time while my baby was in hospital for ill-health. They saw me complain that I wasn't sleeping, they saw me acting erratically. Everyone could tell I was suffering. They sent me breastfeeding consultant after breastfeeding consultant, but not one mental health expert. It was clear to me my health didn't matter. My blood pressure started increasing, and still they did nothing. I even went as far as having a full-blown psychotic episode in the ward; they said it was due to sleep deprivation and sent me home. Worst time of my life. Luckily I was diagnosed eventually and put into a MBU, but things had to escalate a lot for that to happen, and it could have been prevented.
Something needs to be done. Postnatal wards need mental health staff, and they need to be aware of postnatal mental illness and its symptoms.
Get referred to your perinatal mental health team, and make sure you make a plan with them. I am sure they will agree to taking better care of you this time around. Now that you are healthy and know what happened, you can advocate for yourself.
I’m sorry you had to suffer in a similar way whilst in hospital after the birth. I too had a full blown psychotic episode and was like you say acting erratically whilst I was in hospital and it is awful that midwives aren’t trained in spotting it. I was convinced a few of the midwives were plotting to take my daughter from me and one in particular (a senior midwife) her face looked pure evil and I still to this day wonder what her face actually looks like in real life. I had flagged to her that I was worried about my mental health and it took 3 more days for the perinatal mental health team to come to me in hospital and even they didn’t mention possible PP and prescribed me a sleeping pill which didn’t work. I pushed to go home from hospital the next day as I felt like I was being imprisoned and felt so alone and unsafe with my baby (because I hadn’t slept for 6 nights at that point) I also thought I would finally sleep if I got out of there but it still took another 5nights before I could.
I have spoken to my GP now and they have referred me to the perinatal mental health team so hoping it will give me more answers as to what happened.
Hi Travel_free, such excellent news you were referred to a perinatal mental health team. I am so sorry that you suffered through all this without professional support. Hope that you get answers from the team.
it is such a tough journey when illness is not acknowledged by health professionals. My partner had to fight tremendously hard in order to get help for his partner and new born baby.
I suffered for several years until finding APP and appropriate experts to diagnose BP1 after recovering from PPP.
I am so pleased that you find some help and support now. Perinatal mental health has improved since 2010, but there are still too many financial constraints and more awareness raising needs to be done for women/mums with MH issues.
To follow up on my original post I have an appointment tomorrow with my local perinatal mental health service. I am really determined to get a retrospective diagnosis for what happened to me and to get some definitive answers about what help I would be able to get if I ever want to get pregnant again.
Does anyone have any advice to how I should approach the meeting? I don’t think the appointment will be with a psychiatrist, but I want to make sure I cover the right things so I would be able to get another appointment with a psychiatrist that could fully understand what I went through and hopefully confirm that I had PP. I am feeling really anxious about the appointment as this will be the first time I will have truly opened up about everything and it’s going back over everything that happened in the place I had the first episode of psychosis (the hospital my daughter was born). I am also aware it’s the same team that didn’t help in the way I needed at the time so I guess there is a lack of trust and feel like I will be palmed off without answers. I appreciate most in this group will have been diagnosed and treated at the time of having PP so may not be able to give advice on this but thought it was worth asking!
I’m Ellie, I had pp in 2011 after the birth of my son. I don’t have experience of being retrospectively diagnosed I’m afraid.
That’s good you have an appointment tomorrow with the perinatal team, I really hope it goes ok, especially as it sounds like they didn’t support you well when you were poorly.
I would perhaps write down the list of everything that happened, the kinds of thoughts you were having etc, just so you can refer to it in the meeting and perhaps even give it to them at the end?
I also wonder if you can bring your husband with you, so he can give things from his perspective, what he witnessed, and of course some support for you in the meeting? I know this might not be possible.
I really hope it goes ok tomorrow, and importantly that you feel listened to and you can get some support.
That's good news that you have an appointment today to talk things through with your local perinatal mental health service.
Like Ellie has suggested, I find it helps to write things down as my mind tends to go blank when I'm put on the spot and am feeling anxious. I think it's a good idea to take along a bit of a summary (or a few notes to prompt you) of what you experienced - everything Ellie has already said, the kinds of thoughts you were having and any other symptoms you had (I know you said faces looked different), everything that was going on in your head even if you weren't outwardly expressing it at the time, the timeline of what happened when (if you can remember), and what your husband observed too, including the attempts to get help.
I think it's very reasonable to explain the impact the experience has had on you and that you really want to understand what happened and if possible be given a diagnosis so it's on your notes and you have the right support put in place for any future pregnancies. Perhaps it can be approached in two parts - the look back at your experience, and then the look ahead. If a psychiatrist needs to be the one to make a retrospective diagnosis, I'm sure that will then be arranged.
I think it's good to be on the service's radar now, and hopefully moving forward you'll be able to build a relationship and trust with the team.
I hope it goes well today, and that it's not too difficult talking about things. Plan something nice for afterwards if you can, you'll probably feel very emotional and possibly quite drained too so do look after yourself.
thank you Jenny_at_APP and Ellie_at_APP for your replies and advice. That was a great idea writing everything down so when I talked through my experience it was all fresh in my mind.
The meeting was actually with the psychiatrist from the perinatal team which was good, it was the same Dr that I saw via zoom when I wasn’t well over 3 years ago so it was a bit of a surreal feeling talking to him again. He had all the notes from the last time I spoke with him so they were aware of parts of what I went through. I was open and honest about everything in the appointment and he has confirmed I did have PP and has gone through all the support and options that would definitely be put in place if I were to have another baby. I am so relieved to finally have the diagnosis, thank you so much to APP, without finding you and all the knowledge and lived experiences this still would have been eating me up till I had the answers
I'm so happy to read this, I'm really glad the appointment went well. That's great that you spoke to the psychiatrist and he's confirmed the diagnosis of PP, I can imagine the relief of having those answers after all this time. That's also great that he went through the support and options that would be there for you if you were to have another baby.
Well done for being open and honest about everything and I'm glad it helped to write everything down. I hope you can have a restful evening now and do something nice for yourself.
Sending very best wishes, I'm so glad you found APP 💜
Hi I also feel I was misdiagnosed with PP. I had my first daughter in 2018 and when she was 3 months old I started to struggle with sleeping when we were away on holiday and I would just constantly watch her to make sure she was breathing, I wore myself down and one night I had an episode where I thought I was dying and I could sense dead people taking to me, I then thought I was on life support and that they were going to turn it off. Of course all the was made up and it was put down to a panic attack but now looking back at it I think it was a mild case of PP. I wish now I had googled it more and spoke to more professionals but anyway I gave birth to my second daughter in 2023 and straight away I wasn’t right and then 3 days after I had another episode thought dead people where talking to me, thought I was getting a gift from god and more strange thoughts. I was seen my the perinatal team but I still wasn’t diagnosed with PP and it wasn’t to another episode 5 weeks later and I was admitted to hospital that I was diagnosed with PP. I was always worried the second time round that I would fall ill again and we tried to put safeguards in place and part of me wishes I had known about PP but this may have put me off having more kids and I’m so blessed to have a second gorgeous daughter and a sibling for my older daughter. I’m glad you’ve had a diagnosis and if you do decide to have more kids hopefully you get the support and care . Take care.
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