Hello all, I have some questions and to keep it short I have been unable to get any answers from my local NHS providers. I would appreciate your personal experiences, information you may have been able to obtain from your specialists, or even recommendations for someone private I could pay to discuss this further. My question is:After having PPP, is it likely that symptoms will come back, or different ones manifest, at other times when hormones change? I am aware of the odds with another pregnancy, but I am thinking more imminently when stopping breastfeeding, and then perimenopause and menopause. Basically trying to prepare for potentially tough times, find out what to expect and if there is anything I can do to prevent/lessen/ease the symptoms when they come up apart from generally looking after my wellbeing.
I appreciate any answers, thank you.
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I hope you're doing ok. Thank you for asking this, I'm sure people will have helpful experiences to share and I wanted to direct you to some information on the APP website which I hope is helpful too.
On our FAQs web page (app-network.org/postpartum-... one of these questions is 'Am I likely to have an episode of psychiatric illness at other times?' - this includes the following:
'Just over half of women with postpartum psychosis will experience an episode of depression, bipolar disorder or related illness at some point in their lifetime. (This estimate includes women with and without experience of mental illness before their PP episode, and so the risk may be lower for women whose PP episode was ‘out of the blue’.)
It has been suggested that some women who experience PP may be vulnerable to relapse at times of major hormonal fluctuation, such as during the perimenopause (the time from the onset of menopausal symptoms, such as hot flushes and irregular periods, until the menopause itself).
A case series review of post-menopausal women with a history of PP found that 30% reported an episode of illness (including depression or mania/psychosis) during the perimenopause. Strikingly, most women who relapsed during the perimenopause had been well during the years in between childbirth and the menopause. Further studies are needed to explore this potential risk period more fully and identify which women might be at risk of perimenopausal relapse. Women, their partners and families should be vigilant for signs of relapse during the perimenopause and seek help from their GP or mental health team should symptoms develop.'
This then links on to further information specifically around PP and the menopause.
For me personally, I've not had any episodes of mental ill health since having PP in 2012, but am aware I'm probably approaching perimenopause and am conscious that this may be a risky time. I think it is wise to think about these things, perhaps have a plan for what to do and who to contact should we start feeling unwell, and generally be conscious of our general health and wellbeing. For example, sleep seems to be something that can be affected when going through perimenopause/menopause, and this is something I'll be keeping a watch for as I'm sure sleep deprivation was a major factor when I experienced PP.
I think just being aware and being alert to any changes in mood is important, and consult with healthcare professionals if you start experiencing symptoms that are concerning to you (and perhaps also discuss with those close to you so they can keep an eye too).
I think it's also important not to get overly anxious, but being aware and informed and looking after ourselves will hopefully go a long way to feeling more reassured.
I had pp then I had a mild- moderate week episode when I stopped breastfeeding. But don’t worry, it wasn’t a severe mental break like pp. I then developed PMDD/ PME and had mild episodes every month around my period. Been struggling for a couple years, changed medication loads and now on olanzapine and sertraline and they are the best meds I’ve been on and my symptoms are massively muted. I know I’m high risk for menopause, but I am strong enough to deal with it now. I also have Bipolar 1 plus many other conditions. Have you had further diagnosis? Xx
Thank you for sharing. I have not, but I am aware that doesn't make me immune to further episodes of poor mental health. I love you saying you are strong enough to manage it now, that's awesome ❤️
Isabella, what is the difference between Bipolar 1 and Bipolar 2. I have a diagnosis of Bipolar but nothing about if it were 1 or 2. You say that you have changed meds loads. How many times and have you ever had insomnia on an antipsychotic. Sorry if I've asked you before.
Thank you so much for asking. Perimenopause is also on my mind. Does anyone know if there are psychiatrists who specialise in this time in the same way you get them for perinatal psychiatry? Thanks!
There is some information on the APP website about menopause which you might find helpful - app-network.org/postpartum-...
I'm not sure about psychiatrists who specialise in this but if anyone is struggling to get specialist psychiatric support and is perimenopausal, the National Centre for Mental Health (NCMH) offers a specialist second opinion psychiatry service for free (you need to be referred by your GP or mental health team). Prof Arianna di Florio is the clinician conducting research into this area, and is able to advise women with a history of PP, and who are perimenopausal and want some specialist advice. If you scroll down the following webpage here, you will see her name, and some information about her: ncmh.info/resources/cups/
Hi Jenny,I jumped on the forum to get some advice about perimenopause, so this thread has been great.
I have an appointment with my GP tomorrow and think it would be wise to get expert advice regarding perimenopause and HRT etc, especially since it's the affect on my mood that are really troubling me.
I'm not under the care of my local CMHT, mainly because they completely failed to assess me properly the last time I tried to access their service but also because I find accessing them really triggering for my PTSD (asking for a new referral is not something I can cope with at the moment).
So my question is, do you know for sure that GPs can make a referral to the Second Opinion Service at Cardiff if a CMHT is not involved? On the website it says that they only accept referrals from Community Mental Health Teams. It doesn't mention GPs.
It’s Ellie from APP here. From what we understand and from hearing from others, they do accept referrals from a GP if you’re not under a mental health team.
I do hope you won’t have any problems getting referred and that it will be helpful
That's great Ellie, thank you for getting back to me so quickly. I have a good GP, so hopefully she'll be ok with referring me. The local mental health team in our area is not good, and hasn't improved in the 16 years since my PP.
That's really good you've got a good GP. Hopefully they will be fine to signpost you.
The CUPS website is probably the best to show her, and ask to be referred to Dr Arianna di Florio, who specialises in fluctations in mood during the menopause. You can read more about her here.
Thanks Ellie,GP appointment went well and she's going to refer me to Dr Florio (I printed out the webpage for her). And we've agreed that with Dr Florio's advice, the GP would be happy to help manage the HRT with me if that's the right pathway.
So we'll see how it goes. I've no idea how long the waiting list is for a consultation with Dr Florio, but at least the ball is rolling now.
Thanks for all the great advice on here. I knew I'd be able to count on you guys to point me in the right direction 😊
I just wanted to say that I was also very scared when I knew our breastfeeding journey was coming to an end . I was worried that possible sleep deprivation when weaning at night will kick in and I knew a lot of mums without any mental health problems that found this time difficult because of the change in theirs hormones etc . Having said that it was a smooth ride in the end I didn’t seem to have any mood changes or sleep deprivation ( I come off the anti psychotic drugs few months before that ). I do worry about hormonal changes due to menopause but I’m trying to remain positive and not let PP to define me in any shape of forms . I try to exercises eat healthy and a balanced life ( as balanced as it can be with a 2 year old ) i hope it helps xx
Being more than 20 years out now from PP, I have gone through all of that and can give you my personal experience. It is true that with subsequent pregnancies you are more at risk for another episode. Hormonal changes do affect many women in varying ways and can certainly affect your mental health, so you’re wise to keep on top of that and be aware of times you might be more vulnerable. There were times before my periods where my mental state felt worse, but knowing I was in that time of the month helped me to not panic over it and just wait a few days for it to resolve.
From the comment you made about breastfeeding I wonder if you are still doing that? When I had PP, it started out as depression and moved more slowly into psychosis over a period of months, rather than suddenly after birth. I was breastfeeding my daughter at that time, and when she stopped at ten months old, that was when I had a complete psychotic breakdown and was hospitalized. Keep in mind that this psychotic break, although it happened when I stopped breastfeeding, occurred BEFORE I was adequately treated, and it sounds like you are past that now.
The good news here is that I have gotten better over the years, not worse. The first couple years were the hardest. As I found medications that were more effective I did improve. I ended up in forced menopause at age 44 when I was diagnosed with breast cancer. Because my tumors were hormone positive, I have had to take anti-estrogen medications ever since. My mood symptoms stabilized quite a bit after that. I’ve not had continuing episodes of psychosis, and the episodes I did have, I now think were withdrawal effects of the medication I was taking as well as symptoms of bipolar disorder.
I do still suffer from the effects of bipolar 2 and anxiety and these are indeed lifelong conditions, therefore have to be managed. I do take medication for these and it is fairly controlled in normal conditions, however recently I’m struggling with some pretty serious physical health issues and that has affected me mentally a great deal. In the past couple years I’ve made a major effort to get active and eat better, and have found that exercise improves my mental health amazingly well. I walk frequently and go to fitness classes where we do strength training and interval cardio. Overall my mood has never been better in my life. I also do still see a therapist for my mental health once every week or two and she helps monitor my condition.
Unfortunately everyone is different and so you can’t really predict what will happen to you in the future. There’s a saying, “Prepare for the worst, but hope for the best.” In my life’s experience I’ve found that preparation is great, but other things often happen that you didn’t even think of.
Feel free to ask any questions you like. I was told that things might improve when I hit menopause and for me that has been true.
Thank you, it is really helpful to know the variety of experiences, exactly as you say to be prepared while I hope for the best. I haven't even considered periods yet, and that's helpful to know. I will remain aware and make sure my support network is, too.
My sister had PPP and went on to be dx with bipolar disorder but her life could've been so different if she'd had access or knew about natural progesterone cream Dr Katherina Dalton discovered that progesterone dropped dramatically after giving birth and caused PPP
NHS used to treat women vulnerable to PPP with the Dalton protocol but NHS recently ditched it
Animals eat placenta after giving birth and this prevents PPP bc the placenta is full of progesterone after giving birth progesterone levels go from extremely high to zero and this is what causes PPP.
From hearing many experiences of postpartum psychosis, 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 are certainly one of these factors.
In my personal experience, I would also say that lack of sleep and genetic factors, as well as horomnal and biological factors, were some of the contributing 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 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.
As a breast cancer survivor I want to add that women should be very careful when using hormone supplementation with estrogen for any reason, as there is evidence these can contribute to breast cancer or female reproductive cancers in some people. Those with a family history or gene positivity should be extremely cautious and work with their physicians before taking any kind of hormonal supplements. Trust me when I say that cancer treatment can be as bad or worse than PP and this is not something you want to play with.
feeling anxcious about what may happen in the future can be quite an obstacle for enjoying the momentum. I have learnt so much since I have been with this forum. Accessing the links given by Jenny is useful and in addition just browsing through the APP website is very informative, but also reading about the topics and reading up on lived experiences.
A lot more research needs to be invested into peri and menopausal symptoms for women, who suffered PPP and/or have been diagnosed with Bipolar 1.
When diagnosed with a mental health issue such as bipolar 1, hormonal fluctuations and a chronical mood disorder requires good coping strategies. I speak from experiences.
If you focus on a healthy and balanced life style, then you are already allowing yourself to built up a cushion of resilience, a toolkit for ups and downs.
Do you eat regularly and healthy?
Have you got time to move your body?
How do you relax your mind and soul?
Which hobbies do you pursue?
Are you open to learn new skills?
What is your sleeping routine like?
Do you have a support network in place?
Are you checking your blood/hormone level/weight regularly?
Can you say NO?
Are you working towards achievable goals?
It is easier to try and live in the momentum! You can not change the past nor can
you foresee the future.
We are all different and our lived experiences are diverse. It takes a while to be able to self reflect subsequently self-care accordingly. One has to tune into own needs and at the same time understand limitations. ☺️
hi there , I had PP in 2015 and relapsed in 2016 and 2020 where I had the psychosis symptoms again . It was a really tough time and after various tests (blood) in 2020 they found I was was going through perimenopause. They seem to think this triggered me and the Dr put me on HRT which has been amazing for 4 years I have been doing well . I got myself a coach , focussed on my wellbeing , kept my stress levels down and did some talks in work sharing my experience. All of this with the anti psychotic medication and HRT is putting me in a good place . I hope this helps
hi According to the stats, women who have experienced PPP are more likely to have further episode at perimenopause but many do not. I had PPP after the birth of my first child. I was then fine for 17 years including following the birth of my twin daughters. Then at perimenopause I had a profound and prolonged episode of psychotic depression which resulted in me being sectioned and in hospital for 6 months. I hadn’t previously known of a potential link and, if I had done, I would have made some contingency plans and an advanced directive. I’m not suggesting this is the right approach for everyone but for me I would have benefited from knowing about my increased risk at perimenopause
Thank you for sharing. It's a good thought to have a contingency plan for worst case scenario, better be ready and not need it than the other way round!
Just out of curiosity (and you don’t have to answer if it’s too personal) but during those 17 years did you have periods of ill mental health or no? Also when perimenopause did hit and when you had your second episode (or rather psychotic depression) - did you notice signs early? Or did it come completely out of the blue like with PP?
Happy to answer - I had experienced some episodes of mild reactive depression in those 17 years but nothing of much significance. When I developed the psychotic depression it was preceded by a couple of months of hypomania in the April/May time. However I had stabilised and felt good, calm and happy in the June/July. In the August the psychotic depression came on very quickly and very strongly - it was very similar to speed of onset of my PPP
Thank you so much for the detailed message. It is good to be aware indeed. Glad to hear you have recovered. So sorry that it happened a second time, especially after 17 years of being quite well. (I’ve had depression once in my life as well but nothing significant; it was short and went away with a short round of antidepressants)
Psychotic depression sounds just as bad as PPP and the rapid onset sounds frightening. I will consider going on at least a mood stabilizer and possibly a low dose antipsychotic if I feel my moods shifting (high or low) at any point in the future.
Once again, happy to hear you’re recovered (even though the 6 month hospital stay sounds dreadful) you are on the other side of that now. And congratulations on having 3 children! That’s amazing 🤩
Thank you so much for sharing more parts of your story.
Great question and I see lots of information has already been provided. I navigated stopping breastfeeding just fine, but I think it helped to be aware of the potential changes that brings... I am navigating menopause and would say my experience is no tougher than others who haven't had PP and possibly eased by an awareness of the need to look after myself, for which I'm grateful. I have to say that preparing for menopause is possibly, in my opinion, every woman's best tool... to go in informed, planning for it really helps navigating it so much. I know I can't cope with pressure as well, I need more time to myself and I have been lucky that life allows me to do this and I really feel it when I don't.
Yoga in particular has helped me enormously to be connected and aware of my mental health and gives me tools to help when I feel myself lower or stressed and there are so many other tools like diet and cold water (honestly turning my shower to cold for a minute at the end of my shower makes all the difference to my day - cold water swimming too). Running has always been a big thing to help me (very slowly I add) and being outside. Keeping a diary (sporadic as it sometimes is) has also helped to spot patterns (eg time of year - autumn I find stressful, I always get a bit stressed feeling like there's lots to do and I must get it done) and menstrual patterns - the natural highs and lows we have as women with a monthly cycle.
Finding out about these ahead of time and what things work for you is invaluable. I can also see how PP and the depression I experienced afterwards has helped me to learn more tools to help myself and to give myself time and care when I need it and helps me to understand myself better and thereby care for myself better.
You ask a good question. One I also thought about having had PP. In 1988.
I am 65 this year and my PP was 35 years ago. I was absolutely fine ending breast feeding. I had two girls without PP and being able to feed them was something I wanted as I had to stop after 5 days when PP became apparent with my first daughter.
I have been through perimenopause and menopause with no recurrence of psychosis. There have been testing times over the years , I have 3 daughters and life can be very unpredictable !! . I know when I experienced PP I had not slept for many days so if I am beginning to feel stress I am very focused on early nights , nice baths and self care which for me includes knitting, colouring and keeping cooking simple. Walking, swimming , watching what I call pleasant films. Nature calms me down and living near to the sea is very uplifting for me. I didn’t try HRT so I can’t comment on that.
The only time I felt mentally unwell was when my thyroid went out of kilter and I did feel unwell then. It was 2020. I had over active thyroid which was brought under control with medication. I requested help specifically with mental health and had some CBT talking therapy. I found this so helpful and to this day I practice it when thoughts and situations become a worry . Once the thyroid levels were balanced I was fine. I feel I am susceptible to hormonal swings!
I think there will be good advice on the forum. If I can help any further do get in touch.
This was incredibly encouraging to read. Thank you so much. I too am hoping for a second child. Had PP last year with no previous mental health issues. (1 bout of depression once after Covid but this was treated very quickly with a short round of antidepressants). I am of course hoping that I’ll never experience this ever again as it was incredibly terrifying. But I’ll prepare for the worst and hope for the best. Thank you for sharing your story. It gives us hope.
I have a book by Katherine dalton and the account of Nancys Tale was the first thing I read and could relate to. She was so kind when I liaised with her but I didn’t actually meet her
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