Still searching for a diagnosis - Action on Postpar...

Action on Postpartum Psychosis

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Still searching for a diagnosis

Learninglion
Learninglion

Hi I'm new here

I wrote one previous post and lots of lovely people replied thank you to everyone who replied. I'm sorry I was too scared to reply to anyones responses.

I've finally been seen by a perinatal psychologist about an episode I had in the third trimester of pregnancy. We didnt know what was wrong with me at the time but about 2 months postpartum a friend of mine who had postpartum psychosis that started in the 3rd trimester, said it sounded like what she had. I spoke to my GP and got referred to the perinatal mental health team. I had a one hour telephone appointment and was told what I had was an acute stress reaction no PPP. I know I met the symptoms of psychosis i am still struggling although the worst of it has passed.

Has anyone not got the correct diagnosis the first time around? I understand it might not be PPP, but I 100% do not agree with the diagnosis of acute stress response, as my symptoms lasted longer than 4 weeks.

I saw on here you can get a second opinion from a dr at Cardiff University. Has anyone gone for that?

13 Replies
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Hi learning lion .it sounds like you have had such a difficult time .I didnt see your first post . I know within the nhs you can ask for a second opinion. I dont know anything about the dr in cardiff though sorry.

I was misdiagnosed and given medication that made me more unwell for many years. I was told I had depression when in fact I have bipolar. It was a struggle to get the diagnosis changed , I found , but I knew my mind better than the doctors (who I would see for 15 minutes once every 6 months) and now I'm on the right medication for me. It took a while to get the right medication even once I'd had the right diagnosis. I would suggest writing out a letter detailing your symptoms to show to the doctor. And do ask for a second opinion .

All the best x

The letter is a good idea. Also you can keep a daily mood diary which will help you and the doctor see what is happening. You can get one one line and print it out, or there are apps available. This really helped me to get my diagnosis.

Thank you, I've started a mood diary via an app xx

I will ask for a second opinion. Thank you to you and all the other kind souls who replied on here xx

Jenny_at_APP
Jenny_at_APPAdministrator

Hi learninglion,

Thank you for posting, I’m sorry to hear you’re struggling around a diagnosis for what you went through.

Reading your first post again were you initially diagnosed with PP but that diagnosis has now been changed? Have you been on / are you on treatment and are still struggling?

I’m not an expert but there are a range of perinatal mental illnesses and diagnoses and a lot of the symptoms can overlap, I’m not sure exactly what is looked for in order to define a diagnosis for an individual but there is information on the APP website that will hopefully help if seeking a second opinion - app-network.org/what-is-pp/

If you’re still struggling and on medication that doesn’t seem to be working etc., seeking a second opinion seems like a good idea. You should be able to request this, there’s some information on the NHS website that might help - nhs.uk/using-the-nhs/nhs-se...

I accessed APP’s second opinion service with Dr Ian Jones when planning a second pregnancy after PP and it was invaluable, there was no local perinatal mental health team to access at the time. The link to information about the service on APP’s website is here - app-network.org/what-is-pp/... - it’s for people living in the UK and a referral needs to be made by the health professional in charge of your mental health care (I wasn’t under a mental health team at the time so my GP referred me).

I hope some of this is helpful and you can get the advice you need.

Best wishes,

Jenny x

Yes I was initially told it was ppp by my GP and then referred to perinatal mental health team who then changed the diagnosis.

Hi-your post struck a chord with me as I suffer from psychosis during pregnancy, although my symptoms kick in within 4 weeks of conception rather the end. they last the full 9 months and then stop as soon as the pregnancy has come to an end. I appreciate that your symptoms were much later. I don’t know your circumstances and I’m not in a position to say whether you had psychosis or not, but I do recognise the difficulty in getting an accurate diagnosis.

I was brushed off by medical professionals and also told I was having a ‘stress reaction‘ to the pregnancy. This didn’t make sense to me as we wanted a baby very much and I was very happy when I discovered I was pregnant-the symptoms started about 2 weeks after I found out I was pregnant and came on suddenly.

I knew that something was very wrong but when you’re not taken seriously, then it makes you doubt yourself-especially in a first pregnancy and when you’ve never had any history of mental illness.

After persisting and finally getting the perinatal team-they weren’t much better. It was only at the end of the pregnancy they actually got involved at all.

In my second pregnancy they finally acknowledged that I’d been let down, but were still trying to fit me into a convenient box-only going as far to say anxiety was the cause. It seems that they aren’t willing to accept that psychosis can happen antenatally, despite the fact I was having severe delusions, hallucinations and suicidal thoughts. At one point the crisis team admitted me to hospital. The symptoms kicked in around the same time and ended as soon as the pregnancy ended.

I also get the same symptoms when taking the fertility drug clomid and the symptoms stop when I stop taking it.

I went to see Professor Jones and he spent 3 hours going through every aspect of my medical and family history. He was very thorough and made sure to check whether there was any hint of mental health issues that could be an underlying cause-but there weren’t any. It was wholly caused by the pregnancy chemicals.

He went through every aspect of my pregnancies and spoke to my husband.

He concluded that it was clear that the chemical changes in pregnancy trigger psychosis in me. It wasn’t stress or depression or anxiety-my symptoms were unequivocally psychosis in nature and directly caused by the pregnancy itself. The antidepressants previously prescribed to me had done nothing to improve the symptoms-in fact taking them with no improvement only fed my delusions. He concluded that antipsychotics should’ve been the treatment.

I have never experienced such pain-being ill that way was a living hell. To be misdiagnosed and therefore not get the right treatment made things even more desperate.

I’m sure there are some fantastic perinatal teams out there, but there is also a need for better understanding of perinatal mental health so that the right questions are asked and assumptions are not made. I appreciate that my situation is rare, but I do also wonder how many other women have suffered in the same way as me, but been misdiagnosed or even taken their own lives without any diagnosis. I came frighteningly close myself-thankfully a friend stopped me.

I would definitely recommend getting further opinions and contacting prof Jones. I would also consider getting preconception advice should you plan another pregnancy. It is easier to speak to people when you are well than when you are ill and to have a care plan in place. But crucial to this is having the correct diagnosis in the first place-whatever that may be.

Thank you so so so much for your reply! It was everything I needed to hear and more. The diagnosis I was given doesnt really fit 100%. I'm so glad to hear someone else fought for a second opinion and got the right diagnosis

Hi learninglion how are you feeling today ? And have you got any further with a 2and opinion?

Ppp diagnosis would involve delusional thinking , did you have delusional thinking ?

Yes I did, but theyve said it was because my body was stuck in fight or flight I was apparently searching for threats where there were none. But it doesnt make sense as I feel theyve overlooked my full mental health history and just looked at this one episode in isolation. Theyve also said that I have had suffered alot of trauma and that my symptoms match that too... I did wean my first child from the breast the week that my episode started, and they said that that hormonal change was the straw that broke the camels back. I dnt know. I'm tempted to just be quiet and accept this diagnosis. But I need to know what is really wrong so I can get well for my babies

Hi , psychosis feels so real and it's strange to think that a simple thing - hormonal imbalance - is the cause of it , I understand that you look back on your experience and want to make sense of it and it seems your gut feeling and eventual diagnosis are at odds and the diagnosis dismisses how you felt which is frustrating , at the end of the day one thing for sure is that hormonal imbalance was the reason for your illness after giving birth progesterone drops dramatically and can cause ppp - it happened to my sister

too much estrogen is excititory and can cause ppp progesterone is inhibitory and moderstes estrogen

you should bear this in mind if you ever take the contraceptive pill or hrt - too much estrogen could be harmful to you and you are better off with progesterone

One positive thing I would like to point out is that at least you didn't go on to develop bipolar disorder like many do including my sister , maybe they thought you didn't have ppp bc you didn't develop bipolar disorder Idk?

What I have learnt is that ppp and bipolar mania are caused by excess estrogen and or dopermine progesterone moderates estrogen and serotonin moderates dopamine

I find looking into the science of it all helps me understand things maybe it can help you too , there is no arguing with factual science but anyone can make a wrong diagnosis

Jocelyn_at_APP
Jocelyn_at_APPAdministrator in reply to lillyofthevalley37

I’ve think that everyone’s personal experience is so different and tends to involve so many different factors unique to each person, rather than just one thing (such as hormonal changes). We think that hormonal / biological changes is certainly one of these factors.

In my personal experience, I would also say that lack of sleep, and birth trauma and possibly an infection from a swab being left in my uterus were the main factors for me.

The information on our website says what we know so far about what causes PP under frequently asked questions: app-network.org/what-is-pp/

There are likely to be many factors that lead to an episode of Postpartum Psychosis. We know that genetic factors are important. You are more likely to have Postpartum Psychosis if a close relative has had it. Changes in hormone levels and disrupted sleep patterns may also be involved. Postpartum Psychosis might be more common in women with thyroid problems or pre-eclampsia, but further research is desperately needed though to understand the complex interaction of biological, psychological and social factors that are involved. For this reason, we are very keen for people to help us with research into PP - click here to find out more - app-network.org/research/

APP’s experts say although hormonal changes may well play a role in PP we need more research to understand this better. Katharina Dalton advocated the use of progesterone therapy for prevention of postpartum mood episodes a number of decades ago, and reported a number of positive case studies. However, there is still a lack of good evidence for it helping and there may in fact be a higher risk of depression in the group treated with progesterone. At present, there is not enough evidence that treatment with oestrogen is beneficial in PP or for maintenance of mood stability after PP. The key clinical guidelines in the UK and around the world (e.g. NICE, SIGN) do not recommend oestrogen in the treatment or prevention of PP. More research in this area would be very helpful.

I hope you manage to get a second opinion and more information.

We're here for you!

Jocelyn

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