Can you help me

[JosephineFay]

Hello there my name is Jo and I realised recently that I had PP just after my son was born in 2003. I actually had the PP when he was about a year old but there were signs that I might get be having PP shortly after his birth which was very traumatic. I now have a diagnosis of Bipolar but cant get my medical records amended to include the PP or the PTSD associated with birth trauma that I experienced. I'm wondering if anybody will be able to give me some guidance on how I could get my psychiatrists to undersand what PP is and its relation to PTSD and birth trauma. I still have trauma and nightmares about my experience of PP and trauma of the child birth 20 years later.

[Jenny_at_APP Partner]

Hello JosephineFay,

Welcome to the forum where I hope you'll find lots of support.

I'm so sorry to hear you went through such a traumatic time with the birth of your son, both physically and mentally, and that it still affects you so deeply 20 years later.

I wondered if you could share some of APP's information about PP with your psychiatrists - there is a wealth of information and resources on our website that you could perhaps signpost them to or print off.

- Information about PP (including symptoms, what we know about the causes and an FAQs section) - app-network.org/postpartum-...

- Research into PP and previous studies - app-network.org/research-in...

I know that unresolved trauma can have a huge impact for years to come and I do hope you'll be able to access some support to help you with this.

I hope there will be others here who have some relevant experience to share with you as well, around conversations with psychiatrists and trying to get some answers further down the line.

Take good care.

Best wishes,

Jenny

[NaomiAPP]

Hi JosephineFay

I'm so sorry to hear of the trauma you experienced in 2003 after your son was born. PP can be such a scary experience and I'm so sorry to hear that your PTSD and PP has not been acknowledged in your medical records.

At APP our support is here for you at any stage in your recovery journey. If you would like to talk 1-1 about your experiences at any point you can reach the APP peer support team via our website or email [e-mail]

I'm Naomi and I work for APP in campaigning and policy. I had PP when my daughter was born (2005). In the early 2000's PP was known as "puerperal psychosis" and sadly this was a term still unknown to most medical professionals outside of perinatal psychiatry.

I was incredibly fortunate to be diagnosed with PP by a well-informed GP - but the only information available about the condition to my husband at the time were terrible news stories on Google and a well-hidden information leaflet on the Royal College of Psychiatrists website.

Thinking about your question about your medical records I wondered if you have accessed a copy of your medical notes as I know this can be a very triggering and traumatic process? In fact it's something I've not done yet even though I hope to be ready in the future. How are you feeling about the lack of understanding of PP from your psychiatrist?

Diagnosis should definitely ideally be a dialogue between you and your psychiatrist/mental health team. I wondered if you could take some of the information from the APP website on "What is PP?" and have a conversation about why PP being stated in your records is very important to you in understanding your own journey towards recovery.

Unusually, Postpartum Psychosis is still not an 'official' diagnostic label in the DSM (A guidance document for psychiatrists). However, the label of PP is used by perinatal mental health professionals to describe the key symptoms of mania, confusion, rapid change and unusual beliefs (delusions) and hallucinations that can occur.

I'd be very happy to chat more and send you links to useful information if you'd like to be in touch.

Take good care of yourself, coming to terms with what you've experienced is part of a long healing journey. We're all here in the APP community to support you.

Warmly

Naomi

[JosephineFay in reply to NaomiAPP]

Hi Naomi, It has been a horrendous 20 years. I am highly traumatised still and the heavy medication that I am now on for Bipolar means that I have not been able to work for a year. Your story touched me so much and thank you for sharing it with me. I would very much like to stay in touch with you. Should I send you my email or telephone number or do you mean that we should stay in touch on here? I am so shocked to hear that Post Partum Psychosis is not listed on the DSM. This makes it very difficult to be taken seriously by my psychiatrists who I do not find sympathetic to birth trauma at all. They are both female psychiatrists which is even more shocking. I am currently trying to find a private psychiatrist who understands PP or a clinical psychologist or a psychotherapist. I feel that I have 20 years worth of talking that I need but I do not know where to start.

[NaomiAPP in reply to JosephineFay]

Hi JosephineFay Please feel free to send me your email address by contacting app@app-network org and we can arrange a time to chat if you'd like? I've been away with my family this week, so apologies that its been a few days for me to reply - I'm available for a catch up Tues-Thurs next week during school hours.

I'm so glad to read all the supportive and caring replies you've had here in on the APP forum and I hope it is reassuring to know that many of us - including me too - have had gaps in employment, felt isolated at times and can share ways to connect with meaningful work or volunteering even as we navigate the difficulties of poor mental health after PP.

Warmly, Naomi

[JosephineFay in reply to NaomiAPP]

Hi there Naomi, Ellie Ware has my email address for you. Could you kindly contact her. I'll send Ellie a message to do that as the email that you left in your reply was only a partial email. Thanks so so much.

Jo

[NaomiAPP in reply to JosephineFay]

Hi Jo - of course, I'll get in touch with Ellie on Tuesday when I'm next at work. N x

[yougotthis1 Volunteer]

Hi JosephineFay ,

I'm so sorry to hear what you've been through - I too suffered with postpartum psychosis but thankfully this was diagnosed and I had answers. I can't imagine what it must have been like to suffer and not even have this acknowledged.

I had a type of counselling called "Acceptance and Commitment Therapy" and this really helped me to come to terms with what had happened - I wonder if this is something you are able to access through your mental health team? In the meantime, I am glad you have found this forum and hopefully this can be a source of support for you.

As for birth trauma, there is an organisation called the Birth Trauma Association - they might be helpful if you want someone to talk to about your birth trauma - link below;

birthtraumaassociation.org.uk/

Wishing you all the best,

Nicky

[JosephineFay in reply to yougotthis1]

Hi there Nicky,

Thank you for your suggestions I will definitely try that. I have recently found a private psychiatrist and I am hoping as she is also a GP and psychotherapist that she will work with me in a trauma informed way and that she will help me challenge some decisions in the NHS that I have experienced and she would write a new report for me also including a new diagnosis for me. I really appreciate you taking the time to talk to me. I havent been able to really work in 20years. I have a job then I have a relapse and lose the job or feel compelled to leave. I have worked at a few places where the staff have not been very nice to me or I felt that I was being excluded at work and that lack of belonging has meant that I have had long periods of unemployment which also derails my mental health.

Jo

[yougotthis1 Volunteer in reply to JosephineFay]

Hi JosephineFay ,

That sounds like you have already got some good ideas for how to try to access some better help, it really isn't easy especially if you don't feel like you're getting the right support. I haven't been able to work since PP either and it can be really hard to find a truly supportive employer but have found a lot of value and confidence from volunteer work. I find having the ability to step back if I find it too stressful to be really beneficial and it helps get me out of the house and speaking to people.

Take care of yourself, we're all here for you.

Nicky

[JosephineFay in reply to yougotthis1]

Hi Nicky,Can you tell me what type of volunteer work that you do?

Jo

[yougotthis1 Volunteer in reply to JosephineFay]

Hi JosephineFay ,

I volunteer at a "chatty cafe" in my local area, where people can drop in and just have a chat and a cuppa. They run across the country, so there might be one in your local area? Link below;

thechattycafescheme.co.uk/

[SammySeal]

Hi JosephineFay

Pleased to meet you, even if it is due to circumstances we probably both wish were a bit different. So sorry to hear you had such a tough time when you had your son in 2003. I had my first son and my PP experience similarly in the early 2000s, and like you, I didn't know what it was that happened to me until much later. The 'help' at the time was rubbish to say the least. It was only when I was pregnant with my second child in 2013 and reviewing my medical history that what happened was given a name, and I was looked after very well the second time around as a consequence.

Also like you, I still struggle on and off with my mental health, and the bad time around my son's birth troubles me greatly. At the moment my diagnosis is still 'just' anxiety and depression, but in the last couple of weeks, due to a bad blip (so excuse this reply being rambling!), I've been referred for all sorts of talking therapies and there have been mentions again of possible personality disorder or bipolar. Medics want to see how a change in meds and the therapies go to start with. Have you tried talking therapies? I didn't find them much use in the past, but like you, lately, I feel like I've decades of stuff to deal with.

You've had some useful replies about providing APP info to your psychiatrist etc and I can't really add to that. However, I wanted to reply to you to let you know that you're certainly not alone in having had this happen a while back before medics or you really knew what it was, and now dealing with the knock-on effects of that. I do hope you'll find comfort and support through APP, whether it's here on the forum or maybe at the online/in-person 'cafe' sessions they hold. I've been amazed by all the support, and by the people who have lived through PP. You're strong and amazing too, but know it's ok to not always feel that way and that loads of us are here for you.

Sammy x

[JosephineFay]

Hi there Sammy, I'm still highly very traumatised and I'm sorry to hear that they say you may have Bipolar or personality disorder. Are you on medication currently? I'm on some hefty dose of the antipsychotics Haloperidol and have received horrendous side effects on these drugs and extremely poor NHS care over the 20 years. I've not been allowed to access talking therapy as my psychiatrist felt that it wasn't appropriate for me.

Sorry to hear that you've had a bad blip recently I know what that's like. Do you work and are you able to. I feel so over medicated on my meds that I can't function or do very much in the mornings.

I'm very very lonely and feel very isolated not working.

Thank you for reaching out to me you have no idea what that means to me.

[Arabella-]

Hello there,

Good grief you poor thing. I also have bipolar (type 2) and had PP.

I have no ideas but wanted to send a hug 🤗 you’ll get there xxx

[JosephineFay in reply to Arabella-]

Hi Arabella,Thanks for the hug I really appreciate it. Are you on medication currently for the Bipolar and if so how have you found it?

[JosephineFay]

Hi Nicky, thank you for the link. I've checked and we don't have one locally. But I have applied to my local charity shop.

Hope you're having a good Saturday.

Jo

[yougotthis1 Volunteer in reply to JosephineFay]

Ah it’s a shame they don’t have one locally but that sounds like a great idea to join your local charity shop, well done I’m sure they’d be very pleased to have you.

Nicky

[Arabella-]

hey. So, I’m on Olanzapine (total bitch in terms of side effects immediately starting it but if you battle through, you’ll acclimatise) and Sertraline. I previously tried Quetiapine but it knocked me out completely so that’s why I changed.

Don’t give up - and remember you can ask for a second opinion on your mental health from a leading psychiatrist specialising in bipolar at Cardiff University. Google it.

You can be helped. You can lead a normal life again x

[JosephineFay in reply to Arabella-]

Hi Arabella, do you know how and what team at Cardiff University can offer me the second opinion? I'll also put this in another post so the admins can answer. Have googled and couldn't find a contact team.

Jo

[Arabella- in reply to JosephineFay]

Professor Ian Jones

Director/Clinical Professor, National Centre for Mental Health

School of Medicine

[e-mail]

[phone]

Hadyn Ellis Building, Room 3.06, Maindy Road, Cardiff, CF24 4HQ

Overview

Publications

Research

Overview

I am a Professor of Psychiatry at the Division of Psychological Medicine and Clinical Neurosciences at Cardiff University. I am also an Honorary Consultant Psychiatrist in Cardiff and Vale NHS Trust. My research interests relate to bipolar spectrum disorders and in particular the relationship of mood disorders to childbirth. My clinical interest is in the identification and management of women at high risk of severe postpartum episodes.

[Arabella- in reply to Arabella-]

That was on the Cardiff uni website. I would contact him and see if he could help or signpost you to someone else that could x

[JosephineFay in reply to Arabella-]

Thank you so much Arabella have emailed him.

[Arabella- in reply to JosephineFay]

Anytime 😊

Enjoy your Sunday x

[Arabella-]

second opinion perinatal service

The Cardiff University Psychiatry Service (CUPS) offers second opinion or consultation to patients, with the aim of assisting and advising clinicians and their patients in diagnosis and management.

Requests for a second opinion must be made by the doctor in charge of the care of an individual’s mental health (Psychiatrist or GP). It is not possible to accept self-referrals. There is no charge for this service (either to the patient or the referring NHS Trust).

Dr Ian Jones is happy to see women via this service who have experienced postpartum psychosis or bipolar disorder and require advice regarding treatment or planning further pregnancies.

More information can be found by clicking the link below, or by contacting Cheryl Buchanan, Clinic Coordinator, on 029 2068 8321 or [e-mail]

[Arabella-]

that was taken from Bipolar Uk.

They would be a source of help and support too x

[JosephineFay]

Thanks so much Arabella in getting that information for me. Not sure if I've asked you already but are you employed and if not do you suffer from isolation. I haven't worked in a year prior to that since 2015 and not able to find a job because of the gap

[Arabella- in reply to JosephineFay]

Hello sorry just seen this! How are you getting on? Did you contact Ian Jones in the end? I hope you are well.

I’m good thanks, just got a job which starts in January. No, I don’t suffer from isolation as I have made some good local friends and a cracking mental health team. I find this time of year hard but have upped my sertraline (an anti-depressant). Just try to get out of the house and go to play groups and parks and chat to others - so many people out there want to connect. Someone has to be brave and make a comment about the weather to break the ice! You’d be surprised how friendly other people are. I think a lot of people suffer loneliness as mums so be the one to bring light to another. Thinking of you x