PP 16 years ago and the menopause

[Overhere]

Can the illness come back when you’re menopausal? I’ve been on mood stabilizer for 16 years but I don’t feel mentally stable.

[Anna_10]

Hi, I always feel like this too. I heard it can come back through high levels of hormone change, such as the menopause? Would be really interested in anyone's thoughts or knowledge on this? Thanks

[ynes2021]

Hi there. So interesting that you pick up on thisI had PP 19 years ago after the birth of my first child.

I have suffered from periods of depression since then but 3 years ago i started experiencing racing thoughts, manic speach, crazy energy levels etc followed by crashing depression lasting months. I have been diagnosed with bipolar bought on by menopausal fluctuating hormones.

[Overhere in reply to ynes2021]

Hi ynes2021, have you seen dr or psychiatrist for diagnosis ?

[ynes2021 in reply to Overhere]

I was eventualy diagnosed by a Phychiatist

[Pikorua Volunteer in reply to ynes2021]

Ynes, hi! This is very interesting how you explain your off-set with BP condition.I thought one either has the disposition of BP, or maybe undiagnosed BP.

As so many always describe that it came out of the blue, PPP...but obviously research indicates otherwise. If I had known about having had always BP, then I could have had received peri-natal support for PPP prevention. Ifs and buts are not useful, as I can not change what has happened, but happy to have had those lived experiences in order to share compassion...

[ynes2021 in reply to Pikorua]

Such wise words. I also feel that this enormous trauma gives us a gift for understanding and a silent inner strength.

[Carmen25]

Yes most definitely. There is increasing evidence of the link between PPP and severe mental illness around the menopause. Current figures suggest 30% of women who have PPP have a very significant mental illness around menopause many of whom have been well in the intervening years.This is exactly what happened to me. PPP after my first child. I was in hospital for 4 months as a result. 17 years later I had another incredibly severe psychotic depression and ended up in hospital for 6 months.

Definitely advise seeing the doctor and talking about the link between the 2

[AndyHenderson Volunteer]

I don't know how much research has been done. It might not be helpful to make too much of individual experiences.

That being said, my wife experienced PP following the birth of each of our two children. The symptoms were identical even down to the recurring phrases she used. She recovered both times to her usual self.

Approaching menopause she had a recurrence. Again the symptoms were identical and, again, the same recurring phrases. She had a number of subsequent episodes all requiring hospitalisation, all the same.

Her last episode was 7 years ago, but she's formally bipolar now which is managed by a number of drugs.

I would say it's worth being aware of the risk of recurrence and discussing it with your partner, family and GP so you can take early action if necessary.

Andy

[Carmen25 in reply to AndyHenderson]

Hi AndyPlease don’t be dismissive of “individual experiences”. It is, after all, the sum of many individual experiences that leads us to research and knowledge.

As an NHS professional with 30 years experience I can say, unequivocally, that the Office of National Statistics figures show that women aged 45-54 have the highest suicide rate among women and that it has been found that in women with a history of PPP, 30% reported an episode of mental illness during peri menopause and that most of these women had been well during the years in between childbirth and menopause.

Note this is 30% and not 100 % so it isn’t affecting everyone. But this is far too an important issue to brush off as “individual experience”. This is an urgent health issue and it is really important that the profile of this is raised and not dismissed

[HelenMW Volunteer in reply to Carmen25]

Thank you so much for the information shared here. I have posted my thoughts above. Kind regards, Helen

[AndyHenderson Volunteer in reply to Carmen25]

I'm not dismissive about individual experiences but anecdotal evidence is just that. I wouldn't want anyone to extrapolate from a few experiences to create an expectation of future problems.

Some women suffer PP with a second child, some don't. I expect that's also the case with menopausal recurrence but I've no clue about the size of the risk.

We need proper research findings to determine that - and I seem to remember a recent survey from APP exploring illness related to menopause.

[Pikorua Volunteer in reply to Carmen25]

Thank you so much Carmen for your response. Wise words chosen as I have had no response from Andy about his comment, because this is exactly how I interpreted his words. x

[ynes2021 in reply to AndyHenderson]

Hi Andy, This is so interesting.

I am amazed that doctors do not have some sort of flag on the system to speed up diagnosis around the menopause. My doctor was totally unaware of the connection which massively slowed down my diagnosis.

I am also trying to find out if the bipolar will dissapear once my hormones settle down.

Have you had any information about this ?

[Carmen25 in reply to ynes2021]

Hi ynes2021I tota

[Carmen25 in reply to ynes2021]

I totally agree with you. It would be helpful if there were a flag on GP records.This is not to “frighten” women who have had PPP. It is to raise awareness of the possibility. And to support doctors to respond quickly if women do experience a recurrence of symptoms in peri menopause. As I have previously said, we are starting to see clear clinical evidence - not anecdotal stories- of the link. Fortunately it is currently thought to be c 30% and not 100%.

But for that 30% it can be a very difficult experience. If women have the opportunity to know this is a possibility then it gives them the chance to prepare. We know the risk of PPP is there with further pregnancies/ births. I was fortunate not to experience PPP with my subsequent children. But I was also fortunate to have a really well worked through care plan with my GP and practice based psychologist. I also had an advanced directive and had a friend who had agreed to be my advocate.

I was lucky not to need these things. But I was very glad to have them in place if the need had arisen.

As I did not know the link between PPP and peri menopause I did not have anything in place. I wish I had. It would have been so much better for me, my three kids and my other loved ones

[guinea1 in reply to Carmen25]

I was told by my social worker of handily that I would get PPP again at menopause.. just like that no explanation this was 1995 so hope thing are a bit more tactful now... I became more terrified as the years went by, having had such a bad experience with mental health professionals and the fear of being locked away again without a baby to protect me... I pushed it away until I broke down with my gp.. and told him my fears.. he has been a rock and has supported me all the way to being able to trust the professionals who could help me and coping with them, I think he possibly saved my life.. we definitely need more research around menopause, plus how the treatment when we are unwell with pp can effect us, if we haven't had sufficient support coming to terms with what happened, my gp never once ask anything about when I was unwell and for obvious reasons I couldn't talk about it.. things were so locked away.

[Pikorua Volunteer in reply to ynes2021]

Hi Ynes,

BP is a chronical mental health condition. Bipolaruk.org has plenty of information. After PPP women are diagnosed with BP1. I figured out that I had a disposition genealogically, but was not aware of it. It all makes more sense now since being diagnosed.

Wishing you well. x

[Pikorua Volunteer in reply to AndyHenderson]

Andy, can you clarify what you mean by "It might not be helpful to make too much of individual experiences"?! I think one just ought to highlight that our biological-chemical make-up is diverse and we react all differently to influential factors on so many levels.

Hope your wife is coping well and has a good support system. I have BP1, too, but manage chronical condition with therapeutic modalities.

[ynes2021 in reply to Pikorua]

Hi Pikorua,Can you share what therapeutic modalities means?

[HelenMW Volunteer]

Hello Overhere and thank you for posting your question. My PP was 34 years ago and I was aware that I might struggle during the menopause. I was perimenopausal quite early and seemed to get through the menopause relatively unscathed. Just lately though I am what I call a bit wobbly. I had a diagnosis of hyperthyroidism and Graves’ disease 2 years ago and the result of my thyroid hormones being unbalanced lead to a dip in my moods. I am on medication for that and liaise with an endocrinologist. I have made an appointment with my GP to specifically get help in a well woman clinic to discuss menopause. I am listening to an audio book by mariella frostrup called cracking the menopause. It’s very helpful and she handles the subject really well. I feel I might benefit from HRT so I am hopeful that might be the answer. In the meantime I am practising mindfulness and CBT . I truly think the current climate has not helped and I plummet when I watch the news what with war and covid!! I will follow these links and conversations and I will keep you posted with regard to how I get on. Good that we can share our concerns and thoughts here. Again thanks for sharing. Kind regards Helen x

[guinea1]

Hi Overhere,I am so glad you have reached out. I had PPP 27years ago, am now 56 and am post menopausal.. when I was unwell with ppp my social worker told me that I would get it again at menopause, just of handily..I thought nothing of it until later years.. and began to get quite scared.. but because of the traumatic experience I had had I was too afraid to speak to anyone as the fear that I would be locked away in a psychiatric hospital again.. things had already started to unravel before I got any premenopausal symptoms.. so when I finally confided in my gp I was really worried and in a state of fear, he would talk to a psychiatrist to see if there was any truths in what I had been told.... I did get really heavy periods, plus aneimea so gp gave me some tablets to lighten them and iron.

We did talk about menopause treatment, but my doctor wanted me to have a mental health assessment as felt something more was going on.. as it had been a very traumatic experience, birth wise and general psychiatric hospital treatment...anyway the check for psychosis and that was ok, thankfully.. but I was diagnosed with PTSD from all those years ago... which I am having treatment for now. I do know there is research going on into menopause and mothers who have past experiences with PPP, It seems to be that there is something in it... with the changes in hormones etc.

I am really glad I spoke to my doctor and told him my fears that I thought I was getting PPP again, as have been able to get help with the past and present, I am on antidepressants, plus having trauma therapy.. I do think there needs to be more awareness and support for mothers who have had PPP and coming up to menopause, maybe a invite from GPS to see how things are or better knowledge, I know this is all new ground for professionals. Awareness I think is the key, though I do think there is still a taboo around PPP , I think they seem afraid they may scare people.. but it so needs to be spoken about in the media, in a gentle way.

I can assure you menopause does get better, the GP is there for you and to listen to your concerns and fears and there is more understanding .. it is a quite tough at times and finding what works for you I think can take a little while depending on symptoms.. I hope this has helped, take care of yourself and be kind to yourself xx

[Overhere in reply to guinea1]

Thank you. My GP prescribed Olanzapine today and referred to crisis mental health team….he said hormones & menopause was a different conversation and appointment..but added « a patch will stop menopause in its tracks ». I’ll see what mental health team say. Any advice on psychiatrists local to Milton Keynes? I’ll look at private support if necessary

[guinea1 in reply to Overhere]

So glad you have support from your gp and been referred, I have a psychoanalytic psychotherapist that treats me as a whole , find it helpful teaching me coping strategies and exploring feeling and emotions about the experience... I have adverse reactions to many antidepressants so we found venlafaxine suited me at a low dose.. we didn't go down HRT route as the trauma symptoms seemed to outweigh the menopause ones, but think they had a big part to play.. I wonder if they will get you into secondary care as have found this really supportive, though still have a journey to go.. but a lot better than things have been

[Overhere in reply to guinea1]

Thank you.

[Pikorua Volunteer]

Hello Overhere,

I am always interested in reading about this topic as I can resonate with it all.

I have had my son in my 40s and suffered greatly from Insomnia after PPP, but in addition anxiety and fear and tons of mind racing created obstacles and managing life throughout the day was extremely difficult for many years after PPP.

I was sectioned in 2010. I was misdiagnosed initially and injected with drugs, but also put into isolation.

I was restraint violently on many occasions as members of hospital staff had no awareness nor education about PPP. I was without my baby for several months and no gynaecological support was given.

I have been on traditional drugs and was weaned of quite quickly. Whether this could have had an effect on my struggles, I do not know, However, I am grateful as I manage my own BP with therapeutic modalities.

I believe maybe a new definition needs to be created as PPP applies generally to a certain time span after the child was born (a few cases late pregnancy/and off set during child birth). Yet, the fluctuation of hormones during peri and meno-pausal stages is a new topic of research and thus, the occurrences of chemical imbalances subsequently could lead to mental health issues (accumulation of case studies are vital for evidence). What do other readers think??? Maybe we could call it meno-PPP

Not only the experience of PPP and my partner not being believed that I was suffering for several weeks. Then, followed by the unreasonable treatment within the mixed gender psychiatric hospital created immense trauma and flash backs for me and PTS kicked in for the both of us at different times of our lives.

If recovery is jeopardised and symptoms throughout recovery being ignored by health professionals, despite all the given indicators such as hormone fluctuation, undiagnosed BP1 and lots more, then of course my case is quite straight forward that it was unavoidable to have ongoing mental health issues. I wonder how many women have experienced negative treatment, unreasonable and unacceptable interventions!!!??? Gosh, am I pleased that we have MBU's available and much better peri natal mental health support including APP, which was just in its founding stages in 2010.

Even though it was in 2010 and provisions in my area were rather poorly in the SW/UK a lot has improved in many areas. Isn't it a pity that so many women had to suffer initially within the health care system and often initiated because of political constraints (finances, not enough research into PPP and mental health issues with the focus of females and their hormones throughout cycle of life.

Take good care and thank you so much for this question.

x

[ynes2021 in reply to Pikorua]

I had a very similar experience with my PPP. I have suffered flash backs to my time in hospital for 19 years and have only now had recognition that i may be suffering from some sort of PTSD when i was diagnosed with Bipolar linked to the menopause last year.

I had next to no support after my hospital stay in a mixed phyciatric ward without my baby and have struggled ever since to make sense of such a traumatic experience

[Pikorua Volunteer in reply to ynes2021]

It would be lovely to have a private chat as I can resonate on so many levels with you. Take care x

[ynes2021 in reply to Pikorua]

I would love a private chat

[Lilly53 Volunteer]

Hi Overhere. Thanks for asking this question, I too am interested in this issue.

Sorry to hear you’re not feeling stable. That must be very unsettling for you. Good to see you’ve spoken to your GP and I hope you are finding some comfort reading people’s experiences or insights on here. Please do keep in touch if you find it helpful.

I’m 43 and experienced my first PP episode 10 years ago with the birth of my first son. I fell ill again after having my second son.

Then last Summer I had some sudden reoccurrence of symptoms. They were nowhere near as severe as previously. But it was very scary and has left me with lots of questions. And the same happened in October. I saw my GP at the time and was sent for blood tests. They showed all was fine (thyroid, iron levels etc). So I was referred to community health…..and am still waiting. Luckily my symptoms got better. But I’ve booked myself a counselling session as I’ve not done that before and just feel I need to talk to someone about the whole thing. It was just really weird.

I wonder are there things you’d like to do which could help you relax etc when times are difficult. I’ve taken up singing in a choir one night a week which I’m really enjoying and feel the benefits all week!

I’ve also recently learned some CBT techniques. It’s really helping change some of my unhelpful thinking patterns/habits and how I feel etc.

Wishing you well xx

[Lizzo30]

My sister had ppp and was dx with bipolar disorder. She was put on all sorts of different drugs over the years yet nothing seemed to help she said she was always on her period when she was manic . when she was around 48 she hadn't been manic for a few years she went to GP bc she wasn't feeling well and GP said she was on the menopause and would she like HRT my sister said yes - sadly HRT was like rocket fuel for my sisters bipolar she went really manic - this was due to the HRT estrogen So HRT can play a big part in menopause psychosis and anyone who has had ppp should be aware so should NHS GP s my sister died at 51 as a consequence of being given HRT

[Ellie_at_APP Partner in reply to Lizzo30]

Dear Lizzo30,

I'm sorry that I didn't reply to this message earlier, I have only just seen it now.

I'm so sorry to hear about your sister, it is very sad to read, and I'm sorry to hear she reacted so badly to HRT which resulted in her death. Thank you so much for sharing your experience. It really does show how important it is that there is more awareness and knowledge needed to supporting women, particularly who have a bipolar diagnosis and are going through menopause.

Do take care, Ellie

[Ellie_at_APP Partner]

Hello to everyone on this thread, it's Ellie here at APP. As we can all see from all the responses, this question of 'are we at increased risk of relapse during menopause?', and of course what kind of treatment and support could be right for me at this time, is something we get asked a lot, and so many of us worry and think about it (I am 45 now myself, and know the peri-menopause is coming soon!). I think as well that women's experiences during menopause generally has been so much more talked about which is so good (there was another Davina McCall documentary this week I think which I must watch!).

I wanted to write here to just signpost to information and links that may be helpful. At APP we are in the process of gathering some information and resources to have a dedicated page on our website on this topic, but for the moment I'll try and give some information we have.

In terms of a concrete question about increased risk of relapse during menopause, basically more research needs to be done, but the current information from our clinical experts is on FAQ webpage which says:

"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. For more information about relapse planning, see page 14 of our Insider Guide on Recovery after PP."

People might find it helpful to read Val's story on our website, of someone who experienced PP, and then a relapse during the peri-menopause:

app-network.org/news-events...

Also, I wanted to signpost people to a second opinion psychiatry service that might be helpful for you, if you're struggling to get specialist psychiatric support and your peri-menopausal. The National Centre for Mental Health offer a specialist second opinion psychiatry service for free, though you need to be referred by your GP or mental health team. Dr Ariana di Florio is the clinician conducting research into this area, and I know is able to advise women with a history of PP, and who are peri-menopausal and want some specialist advice. If you scroll down the webpage here, you will see her name, and some information about her:

ncmh.info/resources/cups/

I really hope these links are useful, do take care all,

Ellie

[Florence21 Action on Postpartum Psyc in reply to Ellie_at_APP]

Hi Ellie and all,

It may be helpful for women concerned about this topic to watch the third webinar in the series ‘Women and Bipolar’ on the Bipolar UK site which summarises the current research situation and offers valuable advice regarding HRT from a specialist GP: bipolaruk.org/blog/women-an...

This area is woefully under-researched but Arianna Di Florio is leading two projects due to start this year so all of us who have had PPs and/or have bipolar should volunteer to help.

Thanks

Clare

[ynes2021 in reply to Florence21]

Do you know how we should go about volunteering ?

[Florence21 Action on Postpartum Psyc in reply to ynes2021]

Hi ynes2021

Arianna’s team will be advertising later in the year and we’ll definitely post it to APP as well as Bipolar UK so look out for them.

Thanks for supporting research 🙂

[Ellie_at_APP Partner in reply to Florence21]

Thank you so much Clare, that's brilliant and so helpful. I'll make sure we add this link to our resources and signpost people to it. X