Action on Postpartum Psychosis
1,998 members1,339 posts

Angry at the way women are treated post partum

I would say that after my experience of PP, my overall feeling is anger that women are suffering and there is not enough awareness or support and that there is a general lack of sufficient post partum support in the UK.

My mum told me about her experience of having me and my brother in the late 70's and early 80's, she stayed for a week in a cottage hospital in a ward with other mums, the babies were taken away at night by the nurses and brought to the mums to feed, she was encouraged to have hot baths and given lots of tea and toast and shown how to breastfeed and bathe us. My experience was a hot tiny room with 4 others mums and crying babies all night, after a difficult forcep delivery, with 15 stitches and a catherter, unable to shower, food so inedible my partner had to bring things in when he was allowed in at all. After 3 days in hospital (2 days being induced and baby heartbeat being checked every 2 hours during the nights and 1 night after delivery) I think I had about 4 hours sleep in total. I was discharged in severe pain, with a tiny baby, even my partner was in tears after the first night desperately trying to feed him with the beaker the nurses had told us to use. I was a complete wreck after this experience and my mental health deteriorated rapidly. I genuinely believe if my care had been better I may not have become so ill.

I wonder if many of the ladies on here had difficult labours or negative experiences of post partum care? I would say that once I was admitted to the MBU my care was amazing, but it was a very difficult journey to get there.

To end on a positive, we are doing very well now and I have a gorgeous naughty 1 year old!

19 Replies
oldestnewest

Hi Annanoosh - congrats on your not-so-tiny-now baby! And thank you for sharing your experience. Your post resonates with me on so many levels.

I had a fairly hideous birth experience, but what has really stayed with me (and what I spend most time discussing at education/ awareness type events) is the 5 nights I spent on postnatal ward. It was horrific. I can’t fault individual midwives, but rather an underfunded and understaffed environment where post-C-section women were really struggling to recover physically. And where sleep (for me at least) was impossible. I already had a huge sleep deficit, from being 2 weeks overdue and then a very long labour prior to the emergency CS, but being on that busy “4 bed bay” with so many different people coming and going- made it 100x worse.

I’m angry that, even having had a psychotic episode in the high dependency unit (the day after the birth, when I was needing blood transfusions etc), I was soon moved to the regular postnatal ward. Looking back with hindsight, I can see that I really should have been in a private side room, with help for the baby at night.

Sometimes I talk about the need for not just SCBU wards but also “Special Care Mum Units” too. The working philosophy in modern maternity care is that, assuming the newborn is physically healthy, then Mum and baby should be kept together at all costs - no matter what physical or psychological health state the Mum is in. With my precious newborn kept with me around the clock, my anxieties and fears became uncontrollable - and of course fed the insomnia and growing paranoia too.

By the time I was discharged home (at my family’s insistence) it was sadly too late to stop the full-blown Postpartum Psychosis. I only got the care I desperately needed - like you - when I got to the MBU. We were so lucky to have made the decision to go back to A&E the next morning (after yet another entirely sleepless night) and from there be admitted. Even with my paranoia, I trusted the MBu staff when they essentially whisked my baby away and started heavily medicating me. It was what I needed, for sure, but perhaps would not have been so inevitable if I had managed to take care of myself better through the birth and that crucial first postnatal week.

Sorry for the long rant!

Great to “meet” you on here. Take lots of care and enjoy every moment with your one year old! (My precious newborn is now a very funny, opinionated and energetic 5 year old!)

Kat xx

2 likes
Reply

Agree with you about post natal complications and lack of awareness of

a new mum's need to rest. The difficult stressful birth and sleep deprivation may not have been the only cause of the incident. You go bipolar with hyperthyroid disease post partum and feel excessively low and tired. Infections and viruses diabetes can set it off but the main cause may be hormone imbalance which used to be treated with progesterone if found to be deficient during pregnancy. As you are a volunteer you are in a position to make this factor in post natal health more aware to health advisors. I cannot understand why post natal medical problems are not treated so women can get rest and support

so they are not fighting for their health as well as looking after a new born.

Great you are a happy mum with a lively sociable five year old - - you can help others.

Reply

Hello Gadgrantgg - thank you for your reply.

I just want to reassure you that I underwent extensive medical checks during my illness - both physical & psychiatric. I can’t think of any stone left unturned: infection markers, ECG, brain scans of various forms, Blood tests of almost every description... if hyperthyroidism was a factor I am confident it would have been picked up by the many doctors involved in my care.

I appreciate your wish to share your experience, but I don’t feel it was a specific factor for me.

Thanks

Kat

Reply

You are lucky to have had all the checks including progesterone levels during pregnancy. Sleep deprivation is the common feature with post natal complications but sometimes febrile illness is not spotted. Glad you recovered quickly and are back to your normal self. Thanks for reply.

Reply

Thanks Gadgrantgg - I definitely wouldn’t describe my recovery as quick, but it was a recovery nonetheless, which is the main thing! The months of illness and the many subsequent months of recovery will probably remain (alongside the actual birth of my son) the defining feature of my adult life...

Kat x

Reply

Think you had an abnormally prolonged complications - these memories may linger but you never know you might have another child in time and all the old memories might be blown away. I know my parents were annoyed when I became pregnant for the second time round after having post partum psychosis but funnily enough I did not experience any mood symptoms but to make sure I had help in the home we employed an au pair. Having help is so important after birth. I had a post natal haemorrhage after my second child - but looking back at family photos no one would see that there was a gap in family life. I went back to work part time

but I don't think my work defined me, nor did having such an unpleasant beginning to our marriage . Think post traumatic stress may be more common than we think and a negative experience like yours is an additional problem to a previous one.

I wish women could have post natal convalescence, if necessary without being rushed away to a mother and baby unit. Not a likely scenario with cuts in the NHS!

You sound like a perfect mum. Gx

Reply

My care after birth was also terrible and I think it sent me into Psychosis. I had not slept the night before I delivered and then not even the whole night or day after. When we told the nurse this she did not seem too concerned. I felt my after care was also not explained to me so I ended up with an infection which lead to lack of sleep again.

Luckily we did manage to get out a day early but what a mess it was. Also a small cramped room with another mom,dad and baby.

Reply

Think many other mums feel they are on a conveyor belt with a rushed time schedule-

all you want is rest and sleep in between bonding. Infections can set off PPP - but as you say all mothers are lumped together . I think the worse thing is you feel marginalised.

It is purely a woman's illness but you feel you have failed. Then the in laws!

Hope you are fine now. GG

Reply

Thanks for the reply GG. It was a terrible time but I am doing a lot better now. I hope you are too.

Reply

Congrats on getting through it all! Its been 4 years for me. I am doing well but I will never get over the shock of how women are treated post partum and then with PPP. I hope for a much better future for others <3

Reply

You are so right! I suffered PP more than 30 years ago, and am sure that it was in large part a consequence of a long sleep-deprived ( and food-deprived) labour in a poor and unsympathetic hospital. I put all my energies into demanding a prompt discharge but by the time I got home I was so stressed and sleep deprived that recovery sleep was impossible and by day 6 I was psychotic.

I went on to give birth to two further babies, at home in a far gentler environment , and had no trace of PP, which went a long way to rebuilding my confidence. I was so fortunate not to need any medical intervention which would have forced me back into hospital.

Reply

Yes I agree that the aftercare leaves a lot to be desired, however I was aware most midwives were trying their best with limited resources.

I demanded a single room and sleeping tablets after 2 days of labour then difficulty sleeping for a further 2nights and they actually took me seriously and moved me into a different ward where there were single rooms. However some midwives were not so great and just dismissed me saying "all new mums are tired and can't sleep" and one woke me up to chastise me that I wasn't with my baby...

I feel the work of APP is so important to raise awareness with health staff but so think there needs to be more investment in NHS for staff to really be able to care for women as well add they can. Not something current government wants to hear...

Hazello

Reply

Hazello you are right, I wouldn’t blame any of the individual midwives but they were so clearly stretched to breaking point. I would like another baby but the thought of going through PP again terrifies me. I think a home birth could be an option, at least with that I would have a midwife with me all the time. Another trauma of my birth was that I was without a midwife from start to 8cm dialation, by that stage I was really panicking.

Reply

Hi Annanoosh, just seeing your reply now. I believe that with your previous experience midwives would be very careful with you around any future babies, they would want to have a clear plan in place to ensure your support, not just around your delivery but also plan around your care afterwards. And there is Prof Jones second opinion service you can use too.

Hazello

Reply

As a matter of interest did you have hormone tests during pregnancy to see if your progesterone was too low? Research by Katherine Dalton has showed that women with a history of premenstrual tension may need progesterone supplements. Post partum psychotic depression may occur after birth or during the perinatal period due to progesterone deficiency. Recommendations have now changed to embrace drugs rather than correct hormone deficiency. Hope you are enjoying life now. G

Reply

Thanks gadgrantgg, it's interesting how treatments evolve isn't it. Progesterone does come up a lot as a topic on the forum. It might be useful to share here some from APP's Experts (researchers and clinicians connected to the charity):

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. There haven’t been any studies examining progesterone and PP specifically.

The key clinical guidelines in the UK and around the world (e.g. NICE, SIGN) do not recommend oestrogen or progesterone in the treatment or prevention of PP. More research in this area would be very helpful."

I too can point to elements of my birth and postnatal care which was far from ideal after my 1st child was born almost 9 years ago now, and I went on to develop PP. I have a second child, who was born 4 years later, and with some good planning and awareness, and supportive health professionals (even though they were not familiar with PP) I did stay well. I hope this provides some further info for you Annanoosh and also those reading and who have shared their experiences. PP whilst a horrible and cruel illness, is still hugely under-researched and treatment can vary by each person's experience. Great to hear about your good care from the MBU and of course your "gorgeous and naughty" 1 year old - I can definitely relate with my 8 & 4 year olds!!

Take care, xx

2 likes
Reply

Though there may not be scientific statistics for post natal depression in Katherina's research, her joint research as an endocrinologist with Dr Raymonde Greene showed that progesterone had physical effects on women predicting toxaemia in pregnancy . As my personal history showed a history of toxaemia during pregnancy, I agree with the old research that progesterone deficiency may affect perinatal care and affect mood with depression after birth. As Katherina Dalton was the first female president of general practice and had written about her research in British Medical Journals, I know work is accredited internationally, and features in Wikipaedia.

I think may be you prefer younger contributors who may follow current guidelines and advice. I do not think mentioning other aspects of health checks which many women are unaware of, is in any way discussing medical treatment. In my day there were no routine checks. I am not sure that things have changed over 50 years as posts still show dissatisfaction with treatment of women with post natal psychosis.

I am sorry if there have been security threats from my posts. I was warned that I was being trolled by health unlocked when I first joined which did frighten me.

If this is the case, I will certainly leave this leave this post partum site, but cannot see info how to delete my membership account.

Reply

I have been meaning to reply to your post for a while, sorry it's taken me a while. I was away for a week in between.

I wanted to respond, and to say that this forum really is for anyone who has been affected personally by postpartum psychosis, no matter how many years ago, and everyone is welcome here. Each person's experience really is valid and accepted and we try to create a safe space for everyone. As someone who had PP 6 years ago, I find it really helpful to share my experience still, and to hear experience of people with a range of experiences, including some many years ago. We are a community for anyone who has experienced PP.

For me, this forum works best when I write from my own personal experience, trying not to judge or 'advise' but just share tips on recovery and walk alongside, the power of shared experience and saying 'me too' is what has helped me the most.

I also wanted to respond re the treatment recommended by Katherina Dalton. We have written this information on other threads, but just to write it also here. APP’s experts say although hormonal changes may well play a role in PP we need more research to understand this better. 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.

Take care, and just to reiterate once again, that you, and anyone who has experienced PP, is really welcome here, it doesn't matter how long ago you had PP. X

2 likes
Reply

I was given a Nexoplan implant in the hours after I gave birth. A doctor came around and started pushing contraception onto myself and other women. To be honest I was in no fit state to decide and just agreed. The idea I was going to be having sex any time soon was slightly laughable given I had a second degree tear, was lactating profusely and hadn't slept for 72 hours! You have to laugh! However, I do wonder now if that could have affected my hormone levels and increased my risk of PP. I had a baby in 2008 and had no PP or contraceptive after. I still have the implant a year on and wonder if I should have it removed? I really wish there was more research as I feel understanding my illness better would really help in my recovery.

Reply

You may also like...