Surrogate Mothers: I am looking for... - Action on Postpar...

Action on Postpartum Psychosis
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Surrogate Mothers

marieannelee
marieannelee

I am looking for support from anybody who has been a surrogate and suffered from PP.

Please get in touch.

40 Replies
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Lilybeth
LilybethVolunteer

Hello marieannelee

Welcome to the forum. I don't have any experience of surrogacy but did have PP twice many years ago now. Can I ask if you have had such an experience? PP is a very traumatic illness and must be very overwhelming for you, especially if you have given the gift of a child to someone and then hit by PP.

I hope you have support around you? There are APP Insider Guides, "Recovery after Postpartum Psychosis" and also "Postpartum Psychosis : A Guide for Partners" which you might find helpful, the link being app-network.org/what-is-pp/...

We are all here for you ...... there is no one to judge or offend. Please don't suffer in silence as if you do have PP it is possible to be well again with good medical care and support.

Take very good care of yourself.

Hi - thanks for your reply. Due to a misdiagnosis no one can be sure if it was PP. I was told because the baby was not with me it couldn't be. But I was experiencing delusions, hallucinations and believed I was being attacked by my partner. In my head there were voices telling me the only way to protect myself was to jump out of a window or hurt myself. I was told all of this was a Personality Disorder which my family questioned, and after two years the medical professionals are considering whether it was PP. However what it now happening is that the voices have returned with a high degree of anxiety. I also have flashbacks and panic attacks linked with memories of the birth. I have my own two children and have never experienced anything like this before with them. It's all very confusing and overwhelming.....

Sorry to hear you are not well. Are you on medicine to help now? I would say if it happened a few weeks after the birth of your baby it could very well have been pp. I was diagnosed with brief reactive psychosis five years before. The diagnosis doesn't matter there are so many names, and some that are very misunderstood by the public, but to have psychiatric drugs is really important

Hi, I just want to make comment that you do not have to have a baby *with* you to have PP. You were pregnant, you gave birth, and you had all the changes in your body that make you vulnerable to psychosis, whether you have a baby with you or not. I had a mixed episode relapse after a genetic termination at 21 weeks - I have bipolar disorder and have had delusions of "grandeur" when I've been manic before, but after giving birth I had my first full blown psychotic episode. Every psychiatrist that saw me recognised that the birth was the likely trigger, and diagnosed it as PP. The baby was kind of irrelevant in recognising and treating my illness. When somebody does have a baby with them it can make things more difficult because babies disrupt sleep, and mothers may be breastfeeding, and there's a lot of consideration of the baby in choosing adult psych ward vs MBU for example - but the psychosis probably would have still happened even without those other factors. Did that make sense?

I understand completely - I just wish the medical professionals who were dealing with me at the time did. I wonder how common it is for a woman through one reason or another that does not physically have a baby with her after birth gets misdiagnosed with a personality disorder rather than PP??? I might write that as a post and ask how they conquered it. I am still struggling with my NHS Trusts ignorance of this subject. I can remember very clearly bringing this up with them a few months after the birth when I questioned my diagnosis of Personality Disorder and they outrightly refuted the idea.

Mine is based around anxiety too. I find music, breathing excersises and being round people all help at different times to relax. Sometimes just watching a children's video on YouTube helps switch off my brain too

Lilybeth
LilybethVolunteer

Hello marieannelee

Thank you for taking the time to reply. During my two episodes of PP I experienced the awful thoughts and feelings you describe. I was having frightening delusions and hallucinations which didn't make sense to anyone else and so I retreated to my bed. I also heard commanding voices telling me to harm myself and was eventually sectioned, so I really understand how you felt at the time. Until I had the good fortune to find APP and the forum I really thought I was the only one who had been through such an awful living nightmare.

I'm sorry the voices have returned and you have flashbacks and anxiety. I hope the medical professionals are able to help you. I think you did very well to recover the first time without a proper diagnosis. I did relapse and was hospitalised again and there followed an enduring depression.

At the time of both episodes a mix of medication and other interventions helped me to recover. From notes I've read since I didn't recognise myself and it must have been a very worrying time for my family.

I hope you have lots of support around you. It must be very tiring coping with such thoughts and caring for your family.

Take very good care ..... we are all here for you.

Thank you for your comments. Just to be clear the baby I gave birth to was not mine..... I have tried lots of different types of medications but due to the terrible side effects the symptoms got worse. I was voluntarily sectioned as well but that made matters worse as Social Services became involved and my own children were removed from my care for about five months whilst assessments were made about my capabilities as a parent. Thankfully the legal system worked for me in that case and they were returned. But that in itself has proved traumatic. I still feel the judgements made by them led to me feeling guilty for getting ill....

You poor thing. Sending love. You are such an amazing person to do such a life changing thing for someone else. I'm sorry you've had to go through an episode after birth, the body goes through so much in 9 month and after labour. To then have to detatch from a little baby doesn't surprise me you will have a period of mental instability. I'm so glad to hear that after 5 months your family have come back together & I hope all the stronger (I can't imagine how hard it has been for you all) but your back together & you sound like a very lovely mum, so I really hope things go onwards and upwards xxx

Thank you - wish the parents I had the baby for were more like you....

Lilybeth
LilybethVolunteer

Hello marieannlee

It sounds as if you had an awful experience with Social Services taking your own children from you at a very traumatic time. My PP episodes and recovery were a long time ago and never spoken about within the family. So I remember how guilty I felt. Since then and 'meeting' mums on the forum I've realised that it was something that happened which was out of my control and I don't feel guilt or shame any more. For many of us here PP hit 'out of the blue' and we had never had a mental illness so it was a lot to take in at the time.

I've read from my notes that my frightening delusions eventually faded with a change in medication. I think the commanding voices were my main problem as I mentioned earlier. I hope the professionals are able to support you. Please don't feel guilty .... you had no choice. Be proud that you fought for your own children to be returned to you and have given someone the joy of motherhood.

We are all here for you .....

Apart from medical professionals did anyone seek any other support from organisations or professionals for treatment? Is there any other type of therapy or treatment for PP other than medication?

Lilybeth
LilybethVolunteer

Hello marieannelee

I think CBT (Cognitive Behaviour Therapy) has been helpful to some mums here. I had CBT (unrelated to PP) and found it a good way to talk about my worries to a complete stranger who could change my way of thinking about them.

I was very ill following the births of my sons ... not being able to communicate; erratic behaviour; off the planet for a while. Medication on its own did not work so I had a combination of medication and ECT which eventually had the desired effect. I think getting the right balance of medication and treatment is a step forward and I hope your care team continue to support you.

Take care .....

Can I ask what ECT was like?

Lilybeth
LilybethVolunteer

Hello marieannelee

It's hard to explain what it was like as my husband consented to this on my behalf as I was so unwell and not communicating. Also my first sessions of ECT were in the mid-70's in what was then a Victorian asylum so I know surroundings for such treatment have improved now. I do remember coming round from treatments and having a thumping headache! Towards the end of the block of sessions I had, I was more aware and a little apprehensive as I had more of an idea where I was going, but it was an effective treatment in my case.

There's a post on here from Jennifer Moyer, who is a mental health advocate in the US, entitled "Is Electroshock Therapy "ECT" an effective treatment," healthunlocked.com/app-netw..."ect"-an-effective-treatment with replies from women who have had ECT which might be helpful.

Take care.

I received ECT about a month and a half into my inpatient stay for PP (in 2014). They had tried lithium to no effect, had tried very high doses of several antipsychotics with little effect - and I was left with no treatment options besides continuing to try different medication cocktails or ECT. My fiance made the decision for me, as I'd appointed him my guardian if I were ever to not have capacity. So, he made the choice to go through with ECT (I think there may have also been involvement with the guardianship board or a tribunal of some kind?). I am glad that he made that decision because it marked a turning point in my treatment and I started to get better. I had twelve treatments in total. I don't really remember the first few treatments very well. As I became more well (after six treatments, over three weeks) I started to be more aware of what was happening, and I was always really anxious for the day or two before the next treatment, but otherwise it was ok. I'd be taken into a room, a nurse would take my blood pressure/heart rate etc, and she would insert a cannula into my hand. They gave me oral medication (not sure what, I think it was something to stop me vomiting). I'd then go into another room and they'd lay me on a bed, and inject general anaesthetic drugs and suxamethonium (muscle relaxant). I'd wake up later and feel headachey, and had trouble focusing my eyes for a little while. They'd monitor me for a while, then I'd go back to the ward. It was a really good treatment for me.

Can you ask for ECT or does it have to be only under a doctor's recommendation?

I've only really heard of people having ECT on recommendation of a doctor - usually voluntarily, but sometimes not. I think that most doctors would be very hesitant to jump to ECT before trialing other medications like antidepressants, antipsychotics, or mood stabilisers (depending on which condition is being treated, of course). But I am sure if you requested it your doctor could talk you through the risks and benefits of ECT compared with other treatments.

Does ECT help with getting rid of traumatic memories?

I wouldn't think so. As far as I know it doesn't affect memory in that way. I didn't really have any problems with memory personally, only trouble processing things and difficulty making decisions - but maybe that was related to being psychotic :P

I think I have two problems here - the psychosis and the trauma of the surrogacy...when the two collide there are really serious problems....how long does PP last for and does it come back years later without giving birth?

I can understand that completely. PP normally occurs very soon after giving birth (within 6 weeks), but sometimes happens later. It can be considered PP any time in the first year after giving birth. A lot of research points to it possibly being an episode of bipolar disorder, and you'll notice that a lot of people here do get that diagnosis after having PP. Not everyone obviously, but enough. So, lots of people do have a relapse of depression, or mania, or psychotic symptoms, well after recovering. But trauma from birth is a thing too, and some women develop PTSD from difficult experiences during pregnancy or birth (or from PP!) and it's really important to acknowledge that, and have an opportunity to talk about it with somebody who knows your situation and can talk you through what was happening at the time.

PTSD is what I was diagnosed with after I challenged the Personality Disorder, at the same time as the assessment the psychologist stated she believed my episodes of ill health demonstrated classic signs of PP....as yet no treatment...I can't afford private healthcare so still relying on the NHS! In the meantime still struggling- just talking things through with other people who have gone through similar experiences is helping enormously so thank you.

Orea
Orea
in reply to marieannelee

Sorry to hear what a difficult time you've been having. I would echo the comment that it sounds like you may well have been/still are suffering from PTSD as well as the PP. I have not suffered from PTSD myself so I don't know what supports available specific to that from NHS, but ido know you need quite specialist and specific treatment for it, so you are right to continue to question your psychiatrist and community mental health team. Very best of luck, and hope things improve for you soon. X

It's so frustrating isn't it. I was offered ECT too, but decided against it as another woman on my ward was having it and she seemed dazed. But I think it can be successful for many. I waited and waited for over 10 months for Psycological Services to start sessions as my CPN said that was the best. The letter arrived after I moved so frustrating. I too had post traumatic stress. Private therapy is expensive & I couldn't afford it but I would suggest going to your gp, there are many 'means tested' talking therapies where you decide how much you can afford to pay. My biggest regret was not going and getting talking therapy for myself. I wish I had of just done it sooner & just paid. I waited too long and needed to talk when everything happened.

How have you been for the last few weeks?

Hope things are getting easier xxx

Hannah_at_APP
Hannah_at_APPAdministrator

Hi Marieannelee, I'm so srry to hear of the dificulties you have experienced after the surrogacy. I had an epsiode of PP in 2009 and also had a course of ECT -my experiences of it are very similar to how cicerenella described it a little further up here, and I think there may be some responses on the other thread that Lilybeth shared from here.

PP is so hard and I am glad you have found the shared experiences on here helpful. I hope that you can get some further support either through your GP or other health professional shortly. In the meantime, we have all been through the hell of the illness and recovery and are wishing you all the very best. Take care, xx

Does anyone know if I will still be able to have access to a perinatal team through a late diagnosis of psychosis? My psychotic thoughts and voices are all related to the birth and babies.

Hannah_at_APP
Hannah_at_APPAdministrator

Hi marieannelee, services and support vary a lot depending on where you live and what support can be offered. I believe that a perinatal team is for the year after a baby is born however there will likely be variations in this and other specialist support available for psychosis. When I was ill and recovering, I was supported by an Early Intervention in Psychosis team for 3 years until discharged (after being in hospital then a MBU for 3 months). I hope you get some answers soon, we are all thinking of you, take care, xx

I am also worried about saying too much about how I am feeling in case my children are removed again......

Lilybeth
LilybethVolunteer

Hello marieannelee

Just wondering how you are? Has the psychologist who also diagnosed PP offered any treatment for you to help with the voices? You must have great strength to deal with such an illness without treatment. Although I can understand you are wary about saying how you truly feel, I don't think the professionals will be able to find the right mix of treatment that will work for you without a true picture.

Take care. I hope you have support around you.

I am not receiving any treatment at all. I have told numerous professionals about how I feel but they said I should just let the medication take effect. I have stopped taking the medication for many reasons - mainly because it's making me worse- suicidal and also because the voices are telling me not to take any. I am still awaiting a response from the mental health professionals about whether they will make a referral to the second opinion service to see if we can get a proper assessment by a specialist in this field. I have not been allocated a Care Co-ordinator despite being under the care of mental health services for two and a half years....my family have pretty much given up on the NHS so we are managing by ourselves. My partner has given up work to look after me and to ensure the children are not removed. My own two children is what is keeping me going.....

Lilybeth
LilybethVolunteer

Hello marieannelee

Thanks for taking the time to reply. I'm sorry to hear you are not receiving any treatment apart from medication. Your thoughts must be very frightening which I can relate to as mine were similar. I know it's hard to take the medication when it has such effects on you. I tried to reduce the medication (Stelazine) myself, went downhill very quickly and was admitted to general psychiatric care in times of crisis. I told the psychiatrist I had learnt my lesson and would not do that again. Eventually it's recorded that with this medication my delusions and the voices faded with other interventions added. If it is possible, I would try to persevere although you might need to see your GP to advise you about restarting medication.

It's good that you have the support of your partner at home. Perhaps he could contact the mental health team on your behalf to let them know how you are struggling and how much you have been let down? You should be a priority ... not at the back of the queue.

Take very good care ...... you will find great comfort and strength in the love surrounding you from your family. We are all here for you too.

Hannah_at_APP
Hannah_at_APPAdministrator

Hello marieannelee, I'm sorry to hear that you are not getting support. Like Lilybeth, I wondered if your partner could speak for you? I know that we don't like to put on them but equally my husband was amazing when I was ill and I don't know what I'd have done without him.

I would also urge you to take medication or see someone professionally about it if you feel it is not working or having other negative side-effects. I too hated medication and at times refused to take it, but then I was admitted to hospital and things were taken out of my hands. I don't say that to alarm you, but I know with the benefit of hindsight that taking meds was vital for my recovery and I got worse when I refused to take it. It can be such a tricky area, with time to take effect too, but this is something that you deserve support with.

We are all here for you and wishing you well. Please hold on to the thoughts of your family and that can also help you get through this. Take care and stay safe, xx

Lilybeth
LilybethVolunteer

Hello marieannlee, How have your been since your last post? Did the mental health professionals make a referral to the Second Opinion Service for you? It seems so unfair that you haven't been allocated a care co-ordinator after waiting for so long.

I'm glad your partner is looking after you and perhaps he can chase the medical support you should be receiving?

Take good care of yourself ..... we are all here to help if we can.

Firstly can I say a huge thank to all those who have replied and offered support and advice. I am sorry I have not replied to every message. I thought I would update you on the situation I now find myself in with my local NHS Trust and see if it is familiar with anyone. I have tried to obtain a second opinion referral and have experienced severe frustrations about getting agreement from my NHS trust to do this. I have now found out that they don't want to in case the referral poses a challenge to them in terms of having to offer me treatment that they are not commissioned to give. At the moment West Sussex has no perinatal service apart from 1 day a week 'loan' from Brighton and Hove. The service is due to extend in May 2017. Can anyone offer any advice on what steps to next take because not having an official diagnosis is preventing me from getting appropriate professional support right now when I need it?

Lilybeth
LilybethVolunteer

Hello marieannelee

Good to hear from you. I'm sorry to hear you're having such difficulty with NHS protocol. I would have thought they have a duty of care towards you. I'm not sure what the next steps for you would be but I know the APP team will be able to give their good advice.

Does your G.P have a view on your ongoing care? It must be very tiring for you and your family. Take care.

Ellie_at_APP
Ellie_at_APPAdministrator

Hi Marieannelee,

I have to say I'm shocked and frustrated, on your behalf, that that is the CCG's response as there is absolutely no cost for the service, so there should be no reason not to refer you (I know I have said that before). I am also not sure if the perinatal mental health team which will be newly expanded will be able to give much support apart from maybe advise the team supporting you as their funding is to provide support for mum's for up to a year postpartum, or pre-conception and pregnancy support for mum's at risk of severe perinatal mental health.

As Lilybeth suggests, can you go to your GP again, ask them if there is anything they can do, and remind them that they can refer you directly to the second opinion service, and that there is NO COST. You could also try PALS (the Patient Advisory Liaison Service) who may be able to help you liaise with the CCG, and make another request to refer? They could at least advise you?

How are you doing generally? Are you struggling with anxiety and disturbing thoughts still, or has this got a bit better? Are you taking anti psychotic medication? and does it help at all? and I also wondered what official diagnosis you have been given (the most recent one, as I know you said you were misdiagnosed originally). i know that it could potentially be two, with ptsd because of everything you went through. Sorry for all the questions! - no pressure to answer them!

Thinking of you, and hoping that you can somehow get the support you need, it is wrong though that it is being made so difficult.

Take care, Ellie

Lilybeth
LilybethVolunteer

Hello Marieannelee

How are you? Are you any further forward in getting your doctor to help you with an official diagnosis so that you can have proper support? It seems so unfair that you have been through so much with very little professional help. Thankfully your husband and family are a supportive.

Take good care of yourself.

Hidden
Hidden

Hi Marieannelee,

I just wanted to see how you are doing and thank you for posting your story. I want to tell you that it touched me deeply and that in a sense I got some help just by reading what you went through. I got PP after my 1st baby was born and I blamed the lack of sleep mainly because I was the only one taking care of the baby. But, reading your story I think that hormones are more responsible for PP than anything else. I hope you are doing better. Than

marieannelee
marieannelee
in reply to Hidden

HI and thank you for your reply. I agree I definitely think its the hormones but when does it stop?? My hormones are still all over the place three years on mainly due to the excessive amount of hormone therapy I had to endure for the surrogacy. I wonder if this was also the reason for my ill health. I have noticed a pattern that every time I have my period I experience very similar episodes of paranoia, anxiety and really awful depression. It helps to know that by telling my story it helps others though. That is really encouraging.

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