Strangest fear- Help?

[WantsToBeAMan]

I've posted before about my preference for a cesarian. I don't plan on having children for the next 10 years or so ( I am 23 ).
I have the strongest fear that by that time cesarians at maternal request will be banned:( I already know I'm crazy so there is no need to tell me.
I was in therapy, but I cannot afford it any longer so I keep having these awful panic attacks.I read that thread here about postnatal injuries and I had my worst panic attack in 6 months.

I am so scared:( I don't ever want to have to give birth vaginally.

Does anyone here think that elective cesarians will be banned in ten years?

Hello again OP -

Which country are you in, can I ask? You will be able to get some help on the NHS for your anxiety problems, which seem to be extreme and disabling.

No one can answer your question. No one knows what will happen in 10 years' time. You can't predict what life will bring you. I had a planned CS for tokophobia (phobia of childbirth) recently - it was great, but I'm not sure that's here or there for you.

I am very sympathetic to your phobia, obviously, as a fellow sufferer. But you're asking a question no one can answer. I think it would be a good idea for you to try and do something about your anxiety levels (which doesn't necessarily mean tackling your phobia directly, btw), with professional help. Like I say, in the UK it doesn't have to cost. If you are having severe panic attacks, you will be able to get a referral from a GP.

QTPie's suggestion is admirably practical. It really might make you feel a little more in control if you started to save, even a tiny bit, now - but in all honesty, no one can answer YES or NO to your question - and I don't know that it would help you if they could.

Good luck.

@ QT Pie
Thanks:) Your advice makes a lot of sense. I will start a special nest egg for whenever I require a cesarian.

@ Fruity bread

Thank you again. I'm sorry you went through what I am going through, but I am also happy to hear that I am not alone.
The reason I asked is because I view the right to choose a cesarian as an important part of women's rights. I would hate to see them being 'banned'. I respect all birth options- home births, water births, hospital births with epidurals, and cesarians. I wish the medical community would respect our choices as much.

What is it about childbirth that you are so afraid of?

I was terrified when expecting my DS, I dont handle pain well and was so so frightened of having an episiotomy or tearing, but you know its not as bad as you think, even though I was induced (which is more painful than a normal labour) I coped. The labour didn't go exactly how i'd wanted but I didn't have any birth injuries/episiotomy and it wasn't as painful as i'd expected, I was up and in the shower 1 hour after the birth and felt on top of the world. People will always tell you there gory stories, you have to let them wash over you. I think of birth in that same way as my needle phobia, its always the thought of it rather than the actual procedure thats worse.

You also have to appreciate that a CS is major abdominal surgery, which will be painful and can go wrong as well, you will be limited afterwards and wont be able to look after DC by yourself, it will be stressful and you will be permanently scarred. A lady on my ward had had one, she couldn't get up when her DS cried and had great difficultly in feeding him, she spent most of the time in tears and had limited pain relief/support (that could just be the NHS though).

That said, if I was to have another DC I would still be scared of giving birth again and would probably go private just so I could have the labour/support/pain relief I want.

Hey WantsToBeAMan fancy starting a club on here for Tocophobes Anonymous and trying to get proper awareness of what it actually is and what the current situation is regarding Elective C-sections?

I'm in a very similar situation, but I'm 34. So time is running out for me. I'm swaying toward not having children presently because the options I feel I currently have are so limited.

I've been doing a lot of research on the subject and I'm very frustrated with the lack of understanding and clarity displayed by the media, medics and public at large. As a result I'm considering trying to put together something of a guide to try and address that and create a proper debate about the subject, and help people in the same boat. At the moment its a bit of a garbled mess though, but its getting there. Unfortunately, as you can see from the length this post, I could talk for hours on the subject and its important to try and get it all condensed into easy and understandable reading.

Firstly, I have some GOOD news for you. Whilst various NHS Trusts are busy banning Maternal Requests, NICE is realising there is a massive problem here and that there are a number of women for whom the system is failing.

Next month they are set to publish their new guidelines about maternal requests. The draft is VERY good news for me and you. It states the following:

"36. When a woman requests a CS because she has anxiety about childbirth, offer referral to a healthcare professional with expertise in providing perinatal mental health support to help her address her anxiety in a supportive manner.
38. For all women requesting a CS, if after discussion and offer of support (including perinatal mental health support for women with anxiety about childbirth), a vaginal birth is still not an acceptable option, offer a planned CS.
39. An obstetrician has the right to decline a woman?s request for a CS. If this happens, they should refer the woman to an NHS obstetrician in the same unit who will carry out the CS."

We'll need to want until next month to see if it makes the final guidelines. Obviously what NICE is saying is very different to these trusts, though and unfortunately (as shown by what trusts are doing with regard to IVF) it is not binding. What it does show though is what the trusts are doing is not in keeping with medical recommendations.

The new NICE guidelines also question the argument these Trusts are making about cost being a reason for the ban. They point out that the figures are based purely on a vaginal births without problems verses an elective c-section. The reality is somewhat more complicated - it does not take into account complications (both long and short term) nor potential counselling costs. (Nor does it take into consideration litigation costs which currently account for 60% of NHS litigation payouts...)

My feeling that this banning has more to do with cultural pressures than actual costs. It has no consideration whatsoever for mental health issues and the fact that by 'banning' material requests what they are doing is causing distress to the likes of you and me and forcing us to consider going private because there is such a lack of awareness of the fact that mental health issues can be legitimate reasons for NEEDING an elective. The real issue that a lack of awareness of tocophobia as a mental health concern means that women just are feeling abandoned and not taken seriously. The whole "too posh to posh" thing drives women into themselves, and prevents them from being able to talk about it or persue the help they need within the NHS framework. Its also not helped by a widely variance in diagnosis across the country - some women are getting diagnosed and granted a c-section others can't get that and are left in limbo, because of a lack of clarity with the current NICE rules. This is precisely what the NICE guidelines are trying to eliminate.

The bitterest irony is there is no actual quality data, in this country, that asks women themselves why they are choosing to have a maternal request c-section. The policy is being driven by an assumption that its to do with lifestyle and women being somehow wimps from the tabloid press. Anecdotes and sensationalism rather than scientific study. It isn't trying to find out these reasons and address them at source. My suspicion that rather than being down to lifestyle, a significantly higher number of women are choosing to go private and have major abdominal surgery because they have considerable, genuine and legitimate fears which they do not feel they get the support for within the NHS. It is worth pointing out that tocophobia is considered a symptom of pre-natal depression in certain cases and the way it is being treated is nothing short of contemptable. It neglects that there are certain groups of women who are particularly vulnerable who seem prone to suffering from tocophobia. These include women with previous anxiety/depression issues, who have been sexually abused or raped or have suffered a traumatic birth experience previously (and may have PTSD or PND as a result).

Not trying to scare you here, but studies are starting to show that women who are diagnosed with tocophobia have a significantly higher instance of intervention (instrumental or emergency c-section) even after counselling, than women with 'normal' levels of fear. Women who request c-sections and are denied it and forced to have vaginal births also appear to have higher levels of PTSD, PND and issues bonding with their children. Which again throws a huge spanner in the works of the cost debate.

More research shows that women who request maternal c-sections and get one, have the highest rates of birth experience satisfaction and comparatively low rates of PTSD and PND. (Mainly because women who go down the route of vaginal birth can end up with unwanted c-sections).

We really need to get greater awareness for fear in pregnancy and childbirth on the map, as they have both psychical implications and mental health issues. We need to completely change the cultural attitudes the press are spewing out and discredit the "too posh to push" thing, and show up how the NHS is failing women on this score, in order to help women get the help and support they desperately need rather than them feeling utterly worthless, alone and inferior as women.

I do not believe for one second that women, choose to have abdominal surgery over a natural birth lightly and I do not feel they think it is an easy option. It is far from simply being about avoiding the pain of labour. Reasons for fear widely hugely, from the perfectly rational to the questionable - however the very definition of "phobia" is that it doesn't have to be proportional for the fear to be real and all consuming.

Whats even worse, in this whole debate, is a lot of the drive to reduce c-section rates is based on two reports from WHO and their recommendation of 10 - 15% rates a few years ago (which they have now rescinded), both of which have been hugely questioned and widely discredited due to flaws in the studies, especially in terms of how they relate to the UK. It hasn't stopped this being jumped on by pro-natural birth groups though and has put huge political pressure on the NHS to reduce rates. Maternal request c-sections are therefore easy picking - there isn't public support for them. WHO now say that any women who needs a c-section should get one, and that we shouldn't go to targets.

Its all a question of defining who "NEEDS" a c-section then...

MORE QUALITY RESEARCH. LESS JUDGMENT. MORE AWARENESS.

I'm hoping that in 10 years time, the landscape will have changed for the better. Frankly I believe in choice in childbirth being crucial. I support the right to homebirths as much as I support the right to maternal request c-sections. I think this is about treating women as individuals with different needs. Strangely if we can understand and help women with fear better, there is the potential to reduce rates of emergency c-sections and instrumental invention which carry the highest risks. This isn't about encouraging electives - its about actually working out how mind and body work together for the best outcomes for ALL women regardless of their preferences. And actually if we do this, I think there may well be a cost benefit at the end of it too...

There is hope out there WantsToBeAMan.

The nest egg idea is a good one.

Bear in mind that as others have said a lot could change in 10 years. At your age I detested the idea of childbirth and pregnancy so much I even looked into sterilisation. I never wanted kids. Ever. I was completely sure I would never have them. I even ended relationships because the men wanted kids and I never did. I stayed of that midset throughout my 20s. I started changing my view around 30 but was still scared of pregnancy and childbirth.

I am now 35, ttc (unsuccessfully so far) and would like any birth I am eventually lucky enough to have to be as natural as possible, possibly at home. Having seen close friends have CSs and the subsequent recovery, I personally really wouldn't want one. Mind you, I think my fear of hospitals might be overriding my fear of birth!

I am not you and everyone is different, but I am just making the point that I am a very different person with very different views to the person I was at 23. There is no harm in preparing a nest egg so you can be confident that you have the money to buy what you need if you still feel the same, but bear in mind you are likely to change. Think what you felt about politics/boys/the world at large at 13 and compare that to now. 10 years is a long time.

Hopefully in 10 years a way teleport them out will have been invented [hopeful]

Excellent post quietlyafraid. As a tokophobe with a history of depression and sexual abuse, I'm well aware of how ignorant and downright hostile some people can be about this phobia. As I've said before - unless you're the kind of person who tells someone clinically depressed that 'we all get a bit down in the dumps so snap out of it', don't tell a tokophobe that 'we all get a bit nervous'.

I feel lucky that I was given a CS on the NHS - wonderful experience, 2 day hospital stay, great recovery. BF-ed successfully, DS never had a drop of formula. For me personally, it was a godsend. For the NHS, I was damn cheap compared to some of my friends who had VBs with interventions, long hospital stays, recurrent infections and subsequent physio and corrective surgery. Not to mention debriefs and counselling.

So little understanding about this condition. It just gets used as a stick to beat women with.

Fruitybread, I've been arguing the case that the majority of maternal requests are due to fear rather than lifestyle choices but I can't find any evidence to back it up. We desparetly need a study to activity record exactly why women are choosing electives so we can actually tackle the problem - regardless of whether you are pro or anti maternal requests. The "too posh to push" thing is dominating policy making and thats just WRONG.

Anyway, today I noticed this thread:
www.mumsnet.com/Talk/childbirth/1047205-How-to-record-birth-phobia-on-the-ELCS-booking-system

You've got TWO women on it, saying that they got an elective on the NHS due to tocophobia and yet it is being recorded as "social" or "maternal request" rather than "mental health". Why the hell is this being done? It massively influences figures and when someone comes along and looks at them, its looking like these women don't have a real reason for an elective. It makes me very angry as it means the data out there is hugely flawed and doesn't give a real picture of what is actually happening. It just all panders back to people who believe in the mythically vain and selfish woman who had a c-section to fit in with her schedule which doesn't seem to fit with any of the posts I'm reading on various forums detailing real women's experiences.

It does seem to show my thinking has some merit to it and that vulnerable women are suffering as a result. How on earth can we these kind of mental health issues on the same level as post natal depression? No one should be asking the same old "Please help! Can I have an elective csection on the NHS. I'm desparate" types of post on a forum! The information and awareness should be out there in the healthcare system and in public knowledge. And yet its not and they seem to be alarmingly common.

Next month if those NICE guidelines do make the final cut I can see a lot of newspaper articles and posts on forums about it being terrible and how women should pay themselves. I'm thinking of trying to get a plan of action ahead of that, and maybe writing to newspapers about things. I'm not sure. I need ideas! It just seems it would be an ideal opportunity to get something "out there" at least. I don't really know where to begin but it does seem to be a massive issue that need tackling.

Just found and read the Select Committee Fourth Report on health from 2003.
www.publications.parliament.uk/pa/cm200203/cmselect/cmhealth/464/46406.htm

Well worth a read, if you are interested in the tocophobia debate... and shows a distinct lack of progress on the issues it raises 8 years ago. NHS bans seem to be a massive step backwards if you read the whole thing. Points 80 onwards particularly relevant. 86 is the one I find most telling (need to read that study!):

"86. According to the Centre for Family Research at the University of Cambridge, the RCOG and many others who provided written evidence for our inquiry, pregnant women want more information on the risks and benefits of caesarean section and wish to be involved in the decision-making process.[100] A survey carried out between 1999 and 2002 by the Centre for Family Research at the University found that that maternal requests for caesareans were made mainly because of fears about the health of mother or baby.[101] In their most extreme form, these fears constituted a phobia of giving birth (tokophobia), and a small number of seriously traumatised women may need surgery in order to avoid severe psychological problems.[102]"

And NHS Trusts are banning maternal requests. Hmmm.... I find it shocking... I can not see how these Trusts can argue that they are not failing women.

I'm not sure if there is a more recent report. Will be interesting to find out and if there is, what it actually says...

Really peeved after reading this.

quietlyafraid, my CS was recorded as 'maternal request' on my notes. This surprised me at the time - a psychiatrist in the perinatal mental health team wrote a letter to the Head MW and consultant, outlining my mental health background, diagnosing extreme tokophobia, and recommending me for a CS.

Why that's recorded simply as 'maternal request' I don't know. It didn't help MW's attitudes towards me, that's for sure.

PS QTpie, I struggled to get pregnant after years of fearing birth and dreading an accidental pregnancy. I was in my late 30s - I was terrified of birth, terrified I had missed my chance of having a family. Awful position to be in.

"The former should be supported, but I can see arguments for the NHS not supporting the latter."

The indications seem to be that they don't actually exist or if they do they exist in extraordinarily small numbers though. Far lower than what the statistics are suggesting.

There are documented cases of women who aren't given the support and diagnosis they need terminating their pregnancies. This is something we need to be keeping in mind. Do we air on the side of caution or are we strict in how we define "mental health" cases? If there is little difference in the risks of elective v vaginal births and the numbers of women are actually very small, should we really be putting so much weight in cutting these procedures? What does it actually achieve other than cause a great deal more anxiety in the process? Remembering the cost debate is null and void as far as NICE are concerned.

What exactly is the ethical argument against allowing maternal requests at this point? Surely the ethical argument goes the other direction.

"It didn't help MW's attitudes towards me, that's for sure."

My fears revolve around medical situations in general, not just pregnancy and childbirth so the idea of a few days in hospital with a bunch of unsympathetic midwives with a chip on their shoulder about electives is a big issue for me. Its just another thing in a very long list that worries me and pushes me towards the private option that I simply can't afford and the impossible logistics of private maternity facilities being so London based. Hence I'm heading in the no children direction with no idea of how I can come to terms with this. I'm not infertile and its not that I just don't want children.

I just feel that whoever is making these policies is utterly clueless about the impact they are having.

The crux of the issue is that the care needs of women with tokophobia are not being recognised or catered for in a consistent way across the NHS.

This is the real issue as far as I'm concerned, and it would be easy to address without a huge increase in spending, other than on staffing, which we need anyway. The protocols for providing appropriate care for women with MH problems are all in place - they are just not being consistently adhered to.

The wider cs vs vb debate is an unhelpful distraction I think.

Quietly - the research comparing outcomes for vb and cs is currently comparing ecs outcomes where women are having care from a large team of experienced experts, with the outcomes of planned vb's where a large proportion of women are not even having 1 to 1 care from one midwife, something which is known to have an impact on emcs rates.
It also needs to be acknowledged that current comparisons don't take into account the increase in dangerous complications in subsequent pregnancies and birth.

I suspect if you compared outcomes for planned c/s with planned vb where women are receiving optimal care you would get a very different picture. Also if you compare outcomes for repeat c/s with repeat v/b.

I think the point I'm trying to make is that comparing outcomes for 1st c/s (a generally very safe op) with vb outcomes for first time mums, whose labours are particularly challenging compare to multiparous women, and who are quite likely to be receiving sub optimal care, well it's hard to make a useful comparison of risk.

Firstly, I'm sorry that you are so anxious about this, and I do understand your fear as I didn't think I'd ever be able to give birth "naturally"! But, 10 years is a long time and do you think it's possible that your fears might subside over the years, especially if you see friends and relatives having good experiences? I'm just trying to say please don't worry about what might or might not happen so far in the future. It's impossible to tell what will happen with the health service, and it might be worth starting to save money if you really think you'll need it, but once you are pregnant do you think it's possible that your hormones will "kick in" and you'll feel more confident?

shagmundfreud, very good and fair point about the multiparous women and research. That DEFINITELY does need to be looked at. Again it goes back to what I said about needing quality research.

That said, I'm not sure you are going to get too many women with primary tocophobia having hoards of children. It would be interesting to research the age of pregnant women who suffer from primary tocophobia to see if they are tending to delay pregnancy. I wouldn't be surprised if it was a trend (which could be unhelpfully add to the "too posh to push" preconceptions too with middle class women tending to have children later in life).

Women with secondary tocophobia is slightly different as it does depend on how many children they already have and the births they have already had.

The whole issue as you say, is about putting fear as an issue onto the map so women can get the appropriate treatment and support when they know the appropriate information. We aren't at that point. But blanket bans by trusts on the basis of a tabloid phrase and popular feeling, isn't the solution to the problem. This really needs highlighting. Women shouldn't be being denied on cost or myth basis. Risk is the only ethical argument I can see here and its bogged down in politics.

If we can't understand whats going on in the first place, how the hell can anything be changed for the better?

"The wider cs vs vb debate is an unhelpful distraction I think"

Actually, I disagree. After reading back and coming back to thread I feel I need to point out a couple of very crucial things to me.

Access to an elective is fundamental to me. This is where I start sounding crazy, but I think I need to get across why it is important.

Firstly, homebirths do seem to carry extra risks - but these are supported both politically and through various birth groups. There isn't the same moral panic about them even though the ethical risk debate is still there.

Secondly, c-sections are seen as bad and therefore must be banned at all costs if there is any way this can be done - which ineventably means you can't get away from the subject. It is important that the arguement is made to break any misconceptions if they exist. Its a way of fighting back against cultural preferences and myths.

Thirdly, from my point of view an elective is a lifeline to my state of mind. Banning them sends out a bad message. Its a safety blanket to fears and it is important from day 1 I have the knowledge that if I really want one I can get one. This is where fear comes in and the fight or flight response kicks in. If I feel I can not get one immediately or fear I may be denied one later, my reaction is to flee and avoid the situation (and potentially get a termination). Which is distressing in itself. This might not be the case for other women, but it certainly is the state of mind, I'm in. I wouldn't take well to hostile reactions.

The OP put it brilliantly in another post she made:
"I can pay for it myself if insurance doesn't cover the cesarian, but what if the doctor refuses to do it? Or what if the doctor tricks me into believing that it will be a cesarian and then doesn't give me one?"

Having the confidence in the system allowing you a c-section if you really want one, is very important to me. Having a system that suggests I might not get one, sends out a very difference message. With the current uncertainity of things, it is definitely influencing how I feel.

(Btw, I am liking this thread as its raising a few questions - for me and against me. Not enough questions are being asked by the press...)

Surely the NHS should be trying to help women with this phobia????

(If they want help, that is)

CBT? Therapy? Counselling?

IME having babies on the NHS is fine (have had 2 myself), its providing decent aftercare that they cant afford and that is the terrifying part

@Quietlyafraid

I am so very glad there are people who think like you.I would love to start a tocophobia support thread:)
You have made extremely valid arguments in your posts.

I would also like to point out, that it is not just women with promary or secondary tocophobia who are asking for cesarians. There are some who genuinely feel that a cesarian is a better option as a birthing choice.

Unfortunately, they face the ire of the "natural is best" brigade and they are often called selfish and misinformed, even though that is not the case.

I wish there was a tocophobia support group:( I find myself really wanting to interact with others who are going through what I am.

@Becaroooo
I don't really have anything against the NHS. I do however feel that due to a shortage of staff and funds there is a complete lack of choices on the NHS.

Secondly, I have also heard of the poor post natal care on the NHS. I often wonder if women would be needing extensive post natal care if the birth was handled properly in the first place. This will bring us back to the fact that there aren't enough midwives, doctors etc. and the drive to reduce cesarians is putting some women at risk. This increases post natal complications, because so many women end up with incontinence, prolapse,etc. and require reconstructive surgery. Had the some of those women ( the ones with larger babies or narrow pelvises or other complications) been given the cesarians they required, or had women had births which were better handled there would be less of those post natal complications.

From what I'm reading, and I'm still in the process of trying to work out exactly how they handle it, it seems they screen for fear in Sweden and take the whole thing a lot more seriously out there. That's where a lot of the studies on fear are coming from at the moment. They are looking for ways to help and treat women. I need to do a bit more research on the subject and find out exactly what they are doing.

At the moment I'm feeling like a letter to the Health Secretary and Shadow Health Secretary might be in order, purely to address the issue of how women having c-sections for mental health reasons are being recorded as "maternal request" and how this is influencing policy and public perceptions. We need them to be recorded more accurately and in a similar way across the country. Preferably as mental health requests. It would mean that in the future data can be studied better. This was recommended in the 2003 Select Committee Fourth Report on Health and doesn't seem to be being done.

I am so happy I have found this thread. I have such an acute, paralysing fear of pregnancy and childbirth that I am going to ridiculous measures to avoid it and I am still panicking about being pregnant every month.

I am 27 and have felt like this since I was 20, after I fell pregnant despite using contraception and had a termination. I think I have always been terrified of childbirth but on a subconscious level. It never bothered me before because I knew if it did come to it and I fell pregnant accidentally, I could have an abortion. However, after I had the abortion (despite never regretting it) I knew I couldn't do that again. So the fear set in. The absolute terror of falling pregnant.

I have been in a stable, loving relationship for nearly ten years with the same partner. I go through waves of fear; some weeks are bad but not terrible, some are crippling. I have a coil in, use condoms and make my partner withdraw before he ejaculates (he is very good about this and never ejaculates inside of me), yet some months I cannot take the fear that I will be pregnant and go and get the morning after pill. I did this on Friday, and because I have already had it about four times this year, I had to lie to the pharmacist. I also make sure that I go to a different chemist each time so that it's not logged on their system.

I know that this is bad for my body and I know it's getting out of hand, so I've booked an appointment with the doctor to discuss it. Up until now I've put it off because I'm terrified he will just dismiss it and I'll be left to cope with this all alone.

My partner is starting to talk about children now and my friends have begun to have children. To be honest, I really don't know if I want any or not because every time I think about it I am just gripped by fear and thoughts of pregnancy and childbirth attack me. I can't get past it.

I know that the only way I could have children is by c-section, and even then I'm not sure I could do it because I would still have to go through pregnancy, which I am terrified of, and also because I would be petrified of going into labour early, before my scheduled date for c-section, and having to give birth naturally.

I have no idea how my doctor will respond to me. I have booked an appointment with a male doctor because sometimes I think women can be worse, especially women who have gone through it themselves and coped fine.

I agree with what someone said on this thread earlier: that the worst thing you can say to a person with tokophobia is that everyone gets nervous, or that everyone goes through fear. People who say that simply DO NOT UNDERSTAND. It is far, far worse than normal fear. It is crippling and terrifying and I genuinely think I would rather die than have to give birth vaginally.