Elective C-section due to Tokophobia - experiences? Private or NHS

[Katielouise1995]

I suffer from severe tokophobia (as well as a long history of anxiety and depression) and I have ended up with days long anxiety attacks, not sleeping or eating for days at a time and self-harming, needing to see the crisis team at A&E just at the thought of giving birth.

My partner and I are at the point where we need to make a decision about having children, even if that's gonna be a few years down the line and it has sent me into overdrive.

I need to know if having a planned C-section due to this problem is possible. I 100% understand the risks but the benefit to me is that I a) wouldn't spend 9 months self-harming beforehand and b) might actually have the mental capacity to care for a child afterwards!

Is this even possible on the NHS? NICE guidelines would suggest so but obviously hospitals often cannot implement them in practice due to resources. Is there a chance they could book me in then cancel it due to an emergency elsewhere and then me be unable to have one?

What would happen if I went into premature labour? Could I still have one?

I appreciate I may need to find private care which whilst awful is something I can accept and am prepared for. What are people's experiences with care? Also very important for me to know would be in the event of a premature labour if I couldn't have a C-section, I would need to know for certain that if I need pain relief, whatever level I can have it without a massive fight on my hands and waiting for hours until it's too late for an epidural...I should clarify I have no (well limited!) issue with needing instrumental delivery/emergency C section (obvs)/extra tearing or stitches - strangely those things are all secondary to the thought of being in unimaginable pain for hours with no help if needed. I also understand an epidural means you can still feel the pushing stage and pain there but again, I know I can do anything for say, an hour, just not for hours on end!

Please no judging, I know so many women do this naturally and I admire them so much but I simply cannot, probably the thinking about it is worse but you can't stop your thoughts!

I'm concerned the NHS would say "oh here's some counselling" and on that basis deny me a C-section. I have had a massive amount of counselling in my life already.

Thank you for anyone kind enough to share their experiences, it's massively appreciated!

@Katielouise1995 hi there, fellow tokophobe here 👍

Yes you can have an ELCS on the NHS for tokophobia, but I would advise you to really research everything in advance so that you know what you're dealing with. I know everyone is different, but for me, part of my tokophobia was due to pregnancy too. We delayed trying at all until I was 39 (married for 12 years) because of it so can completely sympathise. I had an ELCS for my first in 2019, and although it actually ended up medically indicated in the end (breech and leaking waters) I was due to speak to a consultant to get an ELCS signed off at the time. I'm now expecting #2 and they didn't hesitate to let me have another caesarean and I got the date around 20 weeks. I totally understand the fear of going into labour in advance of a date - this is on my radar at the moment (although the date is actually 38+2 because they've booked it off scan dates not my known ovulation date so i'm feeling better about that reducing the chance of it happening) and I have (with support from my doula) been getting a care plan put in place to cover that off so that if it does happen it has already been agreed in advance what should happen.

I would recommend reading the Positive Birth Book and Why Caesarean Matters as a start. Once you're expecting I would recommend trying to find a doula to support you (they don't just deal with women who want physiological births with no pain relief!).

There is a bit of a postcode lottery involved, although I'm guessing if you're considering private you're probably close to London? Birthrights charity are another good place to look for support on this as they know the ins and outs of different trusts.

Feel free to drop me a DM if you want to ask me any questions off the thread!

Yes definitely. If you were to consider pregnancy, ask your gp for a referral to your local perinatal mental health team. In my area, they offer preconception appointments for women who have suffered with poor mental health in the past. I found them very reassuring and it also means you'll be on their radar throughout pregnancy.
But in short, you can definitely ask for a c section and will get one. It might be easier if you go into it backed up by mental health professionals. But everyone should be working to ensure you have the best birth for you, which means staying mentally well

I had the exact same thing, minus self harming but it consumed my every thought. Im in Scotland. I was neither here nor there about having a baby but did spend a lot of time watching videos on how people had managed to get a c-section. Two years ago, all of a sudden I realised I actually did want a baby so I was going to have to find some way round this. I knew that literally no matter what, they could have offered me one million pounds and I’d still say no, I was not having a vaginal birth. It was like a physical and mental block on the idea completely and my body was just not for it at all!

I got pregnant then at my booking in appointment thought it was probably a bit soon to mention it so was going to wait until we at least made it to the 12 week scan. Then she said about where I would be giving birth and said she’d aim for it to be in the birthing suite rather than delivery suite at the hospital. I couldn’t listen to it or agree to it so just had to come out with my whole story. She kind of laughed it off and said we’d deal with that later and I’d change my mind (Guess what, I didn’t).

I said the same thing at every appointment right up until 23 weeks where the midwife suggested I do a hypo birthing course. As she wrote down the contact details for the hypnobirthing team to hand me I just couldn’t take anymore and started crying. No one was listening to me. Eventually at this point this midwife took me seriously and referred me for a phone call with the consultant. Eventually got to speak to the consultant, read out my whole sob story, which I’d written down along with another 5 pages of notes on my reasons, NICE guidelines etc. She didn’t disagree with me at all. Just read out the risks, exaggerated them somewhat so I would hopefully change my mind but when I didn’t she said she would book it.

i relaxed for about 10 seconds but then instantly started worrying about going into labour early. By the morning of my c-section I think the fear of having my first ever operation was lessened by my sheer relief at not having gone into labour. I was going to get a baby and I still hadn’t experienced labour! I couldn’t believe it!

The c-section couldn’t have been any easier or more straightforward. Recovery was also fine, I was a bit pathetic the first week then slowly got back to being able to do everything. It is absolutely possible and looking back I should have just been more blunt with the midwives and directly asked for a consultant earlier instead of letting them shrug me off again and again. The consultant didn’t put up a fight at all and was fine with it. I got the impression there weren’t many people like me though with a first baby, I’m sure lots come in looking for one after a bad first birth. I’m now even considering having a second because it went so well 😅 I’m so sure the heightened levels of sheer terror in my body the entire time stopped me from going into labour. One midwife even said early on that my cervix probably just wouldn’t open if they tried to force me to go down that route when I didn’t want to. Good luck, it’s fine!

Yes you can 100% request a c section for tokophobia, but there is always the chance of it being cancelled or delayed or going into labour before the section date. You can request a section if you’re in labour and you’ve already booked a section but they may not be able to accomodate it

Yes. Completely. I had undiagnosed tokophobia for my first birth, which ended in an emergency c-section. It left me with worse tokophobia than before and it took me four years to consider DC2. With DC2 I had a planned c-section. Dear God, I wish someone had told me before about tokophobia and how peaceful, healing and gentle a planned c-section can be. I made sure they knew second time round about my panic attacks related to the birth and they could not have been better. The planned c-section was completely calm, beautiful and joyful. Discuss it with your midwife now. They should also be able to arrange some kind of psychological help. Stay away from standard birth prep classes and meditations and focus on making yourself calm in whatever way works for you. I used yoga meditations for the planned c-section, both during the pregnancy and whilst waiting in the hospital on the morning. They left me for an hour to meditate before taking me to the theatre and I was so relaxed and calm that DD came out with an APGAR of 10, the first time the midwife had recorded one. It is possible to have a beautiful birth with tokophobia but you MUST make sure everyone is aware and be prepared to stamp your feet to get what you need. I changed my consultant for DC2 as I didn’t like the first one, then howled with fear all over the second. It worked, they treated me with kid gloves. Don’t feel you have to hide the fear. Make sure everyone knows, especially if you have specific triggers and be prepared to stand your ground over any little things that help. There are also support groups and forums. Good luck and I promise it’s completely worth it.

Thank you so much for your responses, this is so comforting.

The only thing for me is still the terror of going into premature labour and not having a theatre available so maybe I would pay privately just for that extra security? Not sure how much more secure that would be but you're right, there is just no way with the way I am about this that some counselling would ever get me into a state where I could be calm enough for things to go well with a VB.

At least with private we could have a guaranteed back up plan for premature labour where there is an anaesthetist on standby for an epidural if needed at an early stage, I would never leave it til later even if I was coping just in case I couldn't later on. Obvs could also go wrong but the chances of EVERYTHING failing has to be pretty high right?

In terms of fighting for what I need, luckily I have no issue crying and having panic attacks in front of doctors, has happened enough in my life!

*has to be pretty low

I went into labour before my planned CS with dc2. I had changed my mind though and wanted a vbac. I think they would have been happier just cracking on with the CS as midwife, senior midwife then doctor all checked I definitely wanted to vbac and then still not convinced they asked DP.
good luck with getting a CS.

ELCS are a hard slog to get here. You have to really push for your rights. I had ELCS for my first due to a complicated pregnancy, under another NHS trust, but when I came to have my second in my home trust, they tried to force me to VBAC, to the point they cancelled my ELCS while I was in the waiting room waiting for my pre op. I ended up being induced, but it didn't work so still had to have my cesarean, as originally planned, the next day. They told me an emergency had came in but there were 3 fully staffed antenatal theaters available plus an emergency theater (the anaesthetist told me the next day, he was shocked at my treatment).
So basically they stressed me out at 42 weeks pregnant for no reason other than to try and force me to VBAC.

If you want to know which trust, pm me.

You should be allowed an ELCS. That should always be an option just for maternal choice alone and you have very valid reasons.

I've had both and totally preferred the CS so I don't blame you at all. I actually had an ELCS booked for my second and went in to labour at 36 weeks and had a precipitous labour meaning we didn't make it to the section in time - although they did agree and were preparing theatre for me, it was just that we didn't have the time to wait for it to be cleaned as the labour progressed too quickly.
The chances of both an early and fast labour are quite slim but it could happen so prepare yourself that things don't always go to plan. But in my experience I had no objections at all from the medical teams. It was just my stupid body having its own ideas.

In relation to the private vs nhs thing I would be tempted to stay with nhs even though they can be short staffed etc. I watched this is going to hurt and it’s put me off ever going private for something as big as a csection. Its based on real life I think. It’s kind of like a fur coat no knickers set up, private hospitals look fancy on the surface, there’s more staff per patient but if something major goes wrong they don’t physically have the capacity to do much about it. They don’t always have all the blood on standby the nhs does and if it’s an emergency situation the nhs has so many more experts who can instantly be on hand. On this is going to hurt the woman pays to go private and ends up in an ambulance heading to the nhs hospital when everything has gone wrong. I think some are joined to big nhs hospitals though so that might be your best bet?

my consultant assured me if I went early they would do it. The only thing she added in to that which scared me a bit was that if I went pre 37 weeks she would recommend I push the baby out as they can’t clear the fluid from their lungs. I decided if I went pre 37 weeks it wouldn’t be great news anyway so I just wouldn’t think about that possibility and told myself it wouldn’t happen 🙈

Yes I was looking at ones linked to NHS hospitals, and to be honest (and I know this is weird!) I don't care if something goes wrong provided I have anaesthetic!! Everything else I can deal with.

Thank you so much for sharing your experience, it's so kind and wonderful of people to do that, especially when it's clearly such a traumatic thing for all of us looking at this topic!

Oh and I don't know if this information is relevant to anyone else, but I have read the book This is going to Hurt and it was written in 2010 ish. The regulations since then have changed massively and I believe at least things have changed but of course would do a very large amount of research!

The thing I'd look into OP is the cost of a private C-section which I think would be prohibitive for a lot of people. From other threads on here it sounds like the birth alone would set you back 8-12K, which is a lot. I would hope you can choose a C-section on the NHS, but private costs are worth researching.

If you are near the big central London teaching hospitals (UCLH/St Thomas), it’s straightforward to ask for and be granted a c-section delivery.

I had one recently and NHS care was fantastic. I’ve had lots and lots of private care due to infertility & honestly couldn’t fault our experience, particularly the amazing anaesthetists and theatre nurses. Postnatal care is rubbish (but bearable). I’m glad we saved the £20-30k a private c-section would have set us back.

UCLH (where I had mine) has two theatres for c-sections - one for emergencies and one for planned.

To give you an idea of the process, I was given my date 2 weeks ahead (booked at 25 weeks ish), told to arrive at 7am, and was handed my baby at 10.30am. I was told repeatedly if I went into early labour, to come in & they’d do the ELCS.

Do you mind if I ask which hospital this was? I'm in Essex so close enough to London to access private hospitals there and I can confidently save the amount necessary.

How could they guarantee they could have still done it if you went onto premature labour? Even if there are 2 theatres (planned and emergency) they could both be full still....

Not sure if much practical help on some of the specifics you're asking for, but my experience so far (34 weeks, first child) in requesting an elective CS:
My NHS trust has been totally supportive from the start. First community midwife booking in appointment I decided be candid about my anxiety and history of depression. I think this was very useful even though I didn't mention the CS until following appointment, the anxiety etx was taken seriously and not handwaved away (even though the mental health midwife team didn't think my situation warranted extra care from their team, which I understand as I have chosen not to take medication, and am not under psychiatric care)
I was very nervous at my initial 20(ish) week requested consultant appointment, but the lovely midwife who checked BP etc over first really calmed me saying something like "it's your body and your baby, we're here to support you". Had to fight back the tears at that point as I had been so anxious and prepped for a fight. The consultant was great too, when I put my points across she said what I was saying made sense (a relief, thought I might be given the -your body is designed to do this/you're not special- crap) and she had to talk me through the risks but I felt very respected and heard.

She asked me to have a think about the possibility of already being in labour on arrival which I hadn't thought about. She said have a think about what you would like to do in that instance. She did say something like early labour still fine to do CS but if very advanced I might be advised otherwise at the time for the safety of the baby etc.

I have my 34 week confirmation appointment tomorrow to book the CS in.

Have you checked the Birthrights website to see if your local hosp is supportive? See the map here
www.birthrights.org.uk/campaigns-research/maternal-request-caesarean/
Mine was a green, if yours is too your experience may be as smooth as mine has been with various options discussed with you for the "what ifs" on the day.

Would I be able to ask what the "what if" answers were - i.e. to premature labour/theatre not being available.

At that point I would need it guaranteed that I could at least have an epidural, and wouldn't need to wait hours at home working myself up into a panic until I got to 5 minutes apart or whatever it is...that is the worst nightmare scenario though

I have en elcs booked for the 8th September. My first pregnancy 22 years ago ended up with an emcs, went through hours of labour and then baby in distress so was rushed in for an emergency. This time round I just thought I'd give birth without needing a c section but the consultant actually said a planned c section would be best for me and explained the risks etc. I had an appointment recently and said I want elcs and I wasn't even questioned just ok then no problem and booked me in. My baby is breech at the moment still though so it's worked out best. She told me if I go into early labour then I can still have c section unless I'm too far dilated then she said would have to try giving birth without a section, I think this is if baby isn't still breech though then may need emergency one. Absolutely petrified but it's scary anyway you give birth. Hope you get what you want.

@Katielouise1995
So I just had my 34 week appointment to confirm it all today. Their answers to some of my "what ifs":

What if I go into labour early? Still fine to do a CS there and then at e.g. 2/3 cm dilated. If I arrive 8/9cm they wouldn't advise it although they did reluctantly say it is still my choice, just not as safe for either mother or baby (in this instance I would definitely defer to their advice). However, he said as a first time mother, the chances of you arriving at hospital when you're already 8/9 cm is really small - presumably because first time mothers are more likely to go to hosp earlier on in labour when they start feeling contractions, whereas women who'd given birth before might leave it longer and also physiologically it is likely to be a quicker process from zero to baby than for first time mothers.

What if the theatre isn't available on the day or EMCs etc? They told me the hospital has 2 theatres, one specifically for EMCs and one for planned, so they work separately in tandem as I understand. They also told me the likelihood of the booked time and date getting delayed on the day is very small because of this. I actually booked the day on their booking calendar with them this morning and went for a day that had a completely clear schedule, so I'm first on the list and therefore even less likely to get delayed.

Was there anything else that you wanted to know? Much of the rest of the conversation was to do with being aware of the risks short and long term (i.e. subsequent pregnancies).

There was no question of being sent back home or anything like that if I did go in with labour pains btw, they would just do the CS there and then (can't remember if he said it would then be classed as an Emergency one but basically there wouldn't be any change of the agreed plan unless it would be dangerous to proceed).

Thank you!

Yes one more thing. - so if you went into early,l labour, how could they still manage to fit you in? As there could be an emergency and someone already in the planned one? I know that is just a luck thing...could they slow down labour in any way (provided it's not ridiculously dangerous) to give you a chance to hang on for a theatre to be free?

I had a planned c-section with DC 2 after a difficult birth with DC1, so slightly different circumstances.
The hospital (PA in Harlow) had two maternity operating theatres, and two teams, one who did the planned list of up to 3 c-sections a day and the other who did the emergency ones. I was told if labour started then call and go in, they would assess me then do it as an ‘emergency’ if needed.
Contractions did start the morning of the c-section but very sporadic. I was asked to wait for my planned slot as I was second on the list and was fine, but I’m sure you could request to be first on the list given your anxiety.
The first case the day my son was born was medically complex, under general anaesthetic and was still done in about 2 hours, for my very straightforward c-section it was probably an hour? And most of that is them sewing you back up again! So even if theatres are in use, chances are you wouldn’t have to wait long.

Oh my god this is so reassuring thank you so much!!! I'm also in Mid Essex, Harlow isn't the closest but these things usually seem to go in trusts.