Tokophobia and elective c section

[LaraCameron]

Hello everyone!
I have severe primary tokophobia and I was wondering if there are any ladies out there who were allowed an elective cesarean on the NHS on these grounds for the first child. If so, how did you go about it? How easy is it? How did you convince the consultant?
Any tips are welcome.
Thank you !

[Chynah]

I do not have tokophobia but did not want a VB. I managed to get a ELCS on NHS for my first child but it was hard work and I had to change consultant (you are entitled to ask for a second opinion). You need to be persistant and dont let anyone fob you off. There are people on here who did get ELCSs due to tokophobia who can advise re that but I think sometimes they offer counselling. If you want an ELCS though get a referral to a consultant and start asking early as getting it agreed is not a quick process.

[LaraCameron]

Hi Chynah!
Can you please tell me where in the UK you are?
And how long ago was this ? Im asking only because the rules have changed in some areas( like manchester) recently.
How soon did they agree? Ive heard they make you wait until the last week to confirm.....
That would ruin the pregnancy for me:(

[WobblyWidgetOnTheScooper]

Hi, no experience myself but I did meet a lady who had this. She was allowed an ELCS. This was in Bromley (greater London).

She'd had severe depression too, so I'm not sure if that was an extra reason for giving her the ELCS - perhaps they thought a VB - or fears about having one - would trigger depression again.

Sorry that's all I know! Best of luck :)

[PaigeTurner]

I had ELCS for emetophobia with DC1, but also had antenatal depression. I only asked for my C section at 32 weeks, they agreed at 36 weeks without a fight and I had him at 38+3. I had been under the care of the psychiatric consultant, after I self-referred to my local hospital (south London) because my GP was no help. The psych wrote a letter to my obs consultant (actually I was transferred consultants at the last minute by my amazing mental health midwife, as second guy was known to be more sympathetic.)

My advice would be request to speak to a mental health midwife if your hospital has one, or the psych services ASAP.

[fruitybread]

I did. I posted on a thread about this a while back, under another name - it was when I was pregnant, but I think addresses the questions you are asking.

Just a word of caution - have you decided you have severe primary tokophobia, or has a mental health care professional given you a diagnosis? Just that most HCPS from all walks don't generally like patients self diagnosing and then asking for treatment on the basis of that self diagnosis.

As an update to the thread, I had my CS, and it was a great birth. DS was healthy and well, I recovered very quickly (was in good physical nick to start with), and overall, it was a hugely positive experience.

Here is old thread - www.mumsnet.com/Talk/childbirth/954334-Anyone-asked-for-ELCS-for-first-baby

(sorry to cut and paste an old thread, I'm just really pushed for time!)

[fruitybread]

PS just to pick up on what Chynah and PaigeTurner have said -

Broadly speaking, your choices are: - deal solely with a consultant, and rely on yourself to push your case and handle 'negotiations' - or go to the perinatal mental health services, or other psych support, and get help via them.

As you have a phobia, I recommend the latter, very strongly. They can offer you a lot of support you won't get if you 'go it alone'. This ranges from having conversations with consultants on your behalf, to managing your notes so you don't have to have repetitive and distressing conversations with every new MW or HCP you encounter, to arranging meetings with MWs so you don't have to be in sight or sound of women on the labour ward. When you are phobic, you are in a different category to women who want a planned CS for other, physical, reasons (not to dismiss them AT ALL!), or as a matter of personal preference, and it's worth recognising that.

Of course, perinatal mental health care is a lottery, like so much on the NHS. I had a good experience, but that won't be the case for everyone.

There's a bit about counselling on the thread I linked to - it can be useful, it's not a magic wand, it depends very much on the individual, where you are in your pregnancy (if you are pregnant) and what is available to you.

[HandMini]

LaraCameron - how pregnant are you? My experience was that perception (and fear) of birth / decisions on how I wanted things to go changed hugely from the beginning of pregnancy to the end. While it's a good idea to speak to your midwives/doctor early, so there is plenty of time to make a plan, I would like to reassure you that you may find yourself coping with your phobia far better than you think as pregnancy continues. The hormones at work are there to help - have you considered counselling to help with the tokophobia rather than ELCS.

PS I don't think there's anything wrong with going for ELCS (healthwise or otherwise), I'm just suggesting there may be different ways to approach it.

[Stangirl]

I had an NHS ELCS in Kings, London last year. When my Ob asked what kind of birth I wanted I said ELCS and when they asked why, I listed the experiences of the closest dozen or so frineds who had children. All had horrible experiences - 2 nearly died, several are injured for life. My Ob commented that my friends seemed to be particularly unlucky but after giving me a leaflet to read, signed me up for an ELCS there and then. It was written all over my notes (so if I went into labour in advance of my csection date they would cut to the chase) and the date was booked when i was around 32/33 weeks pg. I'm pg again and an ELCS for this one has been written all over my notes since 20 weeks. Whenever any HCP asked why I was/am having an ELCS I just said/say "because I want one" - they sometimes raise an eyebrow but that is all. My attitude has always been one of confidence and certainty.

[LaraCameron]

Thank you everyone!
Actually I have already had counsellling and the diagnosis was made when I was in India for a couple of years. I have no problems visiting an NHS counsellor and getting them to confirm the diagnosis. Its definitely not self -diagnosis. I didnt even know tokophobia existed till the doctor told me I had it!
And Stangirl, I have reasons similar to yours- my whole family has had horrifying births! at least 40 hours of labor, forceps, 4th degree tears, ventouse, rectovaginal fistulae, proplapse, incontinence.
In addition to which I have gynecological conditions as well- sometimes my menstrual cramps are so bad I have to be taken to the emmergency room.
Happened twice in america- hubby thought I was dying or something!
I know all these things have nothing to do with my birth experience but, they certainly add to the fear. My cousin lost her baby during a vaginal delivery because of forceps. So I am petrified to be honest!
and Handmini- Hi! I agree with what you are saying, perceptions can possibly change but Ive had this phobia since age 16( I have no clue why!).
I just dont see it going away:(

[beachcello]

I have primary Tokophobia and I am meeting with my consultant next week to get a date for my ELCS. I have found it amazingly easy to get, so much so that I couldn't quite believe it when the consultant first said 'yes' and had to keep checking my notes to be sure I hadn't dreamed it!

I was careful to choose a hospital with a high CS rate (UHSM, rather than Macclesfield General which is where I should have gone but is all a bit too 'birth centre/midwife led for me). Luckily I had a very sympathetic midwife at UHSM when I went for my booking appointment who made v detailed notes about my mental state regarding birth (she even offered to check through all the free literature and make sure there wasn't anything which would freak me out!). I then asked to see a consultant as I couldn't cope with the pregnancy until the birth issue was resolved. She booked me an appointment with a very understanding consultant who asked 2 questions - are you enjoying your pregnancy - I said no. She then asked what kind of birth I needed so I could enjoy my pregnancy so I said C section and she said fine!

It really was that straightforward. But I had heard many horror stories so was fully prepared to have to seek some sort of mental health referral through my GP, I had printed out what evidence I could find to support my wishes and was prepared to ask to see another consultant if the first one said no.

I hope things are as straight forward for you.

[fruitybread]

beachcello, I'm really glad to hear that. I too was lucky enough to get a fab MW to start with - she also went through pregnancy and BF info to 'vet' it for something likely to trigger a panic attack, as well as being a supportive point of contact to guide me through maternity services at the hospital. (and also turned out to be superb at BF support after birth, so I feel a got a double win with her!).

I know care is very patchy for this phobia, but it's so encouraging to hear another good story.

[LaraCameron]

beachcello, hearing your story makes me think that thats the way it should be!! Mothers should be given a choice.
I have had such a bad case of tokophobia all my life, I almost got my tubes tied at 21. I found a doctor ( was very difficult ), booked the surgery, but my mother convinced me to cancel at the last moment.
I adore kids, but I was all set to adopt. My hubby is very keen on a baby, and when I saw the happiness on his face when I was pregnant, I knew I had to have the baby. This is going to be my first and last though( which is why I dont have to worry about the effect a c section will have on the following pregnancies). Took a lot to just get pregnant this once, will NOT be doing it again, and luckily hubby understands. For the second and third ones we are adopting- Ive always thought thats a great thing to do, tokophobia aside. So Im trying to convince hubby to get a vasectomy after this. ( he's afraid of getting one- can you believe the cheek?! What about me- aren't I afraid?! Men are unbelievable sometimes)
Thats how Ive always wanted it to be - I told myself Id consider having just ONE child, if my husband really wanted it. Id have it by c section ONLY. And adopt more kids. I dont want my baby to grow up alone- I was an only child and it is very lonely.

Its lovely that your midwife was so supportive though- most of them are so into "natural" birth that I want to scream.
My friend's midwife was the strangest. The midwife refused to stitch up a second degree tear saying that it would heal "naturally" and that hundreds of years ago thats what they did. Im honestly not joking. My friend had to create a hue and cry to finally get someone to stich her.

I hear such mixed stories that its not even funny.
Someone I know asked about this at the Princess Anne Hospital, and the midwife said point blank-NO, you CANNOT choose one on the NHS, no matter what the reason. Strangely, I recently saw an episode of One Born Every Minute where a woman coming in for a planned c section said that she had opted for one this time because her life was too hectic and they just didnt want to go through labor. Wonder what the midwife will say to that.

[LaraCameron]

My sincerest apologies- the lady on one born every minute had suffered a stillbirth and that is why she couldnt face another labor- I am deeply sorry as I was mistaken. I started watching the show late, and so probably didnt catch the full reason- what I did hear was misleading. Her reason is more valid than anyone else's. So sorry agian.
The good news is that baby and mum are doing very well. God bless them.

[maxbear]

Laracameron, I'm a midwife and I'm 'into' natural birth, I don't think anyone should be allowed to have a section just because they want to.

However you have a very valid reason, tocophobia is a mental health issue and it can be serious. There are also many women who have suffered from sexual abuse in the past, I believe that these women should be able to have elective sections on the NHS too.

The women that I don't think should be allowed sections on the NHS are the ones who want to have baby on a certain day in order to sort out childcare, or who just don't want to give birth. The majority of these women who don't have a medical condition will realise when fully counselled about it why a section would not always be the best sort of birth for them to have. Those who don't have psychological reasons but still want to have them should pay to go privately.

I doubt very much whether you will have a problem getting one on the NHS, you may need to see a psychiatrist to assess your tocophobia first but it sounds very real from what you have posted so I'm sure that that wouldn't be a problem.

Best Wishes with your pregnancy and birth.

[Sioda]

This is what makes me want to stay far away from midwives! And fortunate that I can afford to. It demeans women who request caesareans to imply that it's either for convenience or 'just because...', it's patronising to women who may have made informed decisions to choose caesarean sections to force them into counselling that they don't need, and it's callous and unethical to force them into a vaginal birth when the counselling fails. It seems to me like midwives' support for women stops where our right to autonomy starts. I don't believe that it's really about cost, or safety, or anything like that. It's about the ideology underneath that amounts to little more than natural is best. Midwives are not 'with women' like me. How ethical is an ideology that's happy to leave poor, non tokophobic women with a choice between autonomy over their own bodies and having a baby?

[LaraCameron]

maxbear Thank you so very much. Reassurance from a professional means a lot to me.
I can assure you my phobia is very real- I have nightmares about childbirth, I shiver and shake, my heart beats a mile a minute. You have no idea how powerless I feel. I am also a victim of abuse- something Ive hidden even from my husband. I would be afraid to bring it up with a doctor as I dont want him to know. He would want me to talk about it and I just cant.

I associate a vaginal delivery with a complete loss of control for some reason.
I couldnt bear it- Id be happier than anyone can imagine if I was given a cesarean- Id be able to become a mom.
That means so much to me.
I always assumed a psychiatrist would just tell me to get counselling and fob me off. But I can see now that I'll probably get a lot more support than I thought!
I was told they make you wait until the very end to confirm?
That would defeat the purpose as it would make my pregnancy hell.
Im only doing this once and I want to try and enjoy it.

[LaraCameron]

sioda I agree with you- women shouldnt have to justify their informed decisions.
What I also feel is that since the NHS has limited resources, and c sections cost much more, those resources are being saved for women who need them.
What can be done is that women who want cesareans due to personal preference should be asked to pay the balance between a normal delivery and cesarean. That is how insurance works as well.
But yes, under no circumstances should a woman be denied a c section- that is not for anyone else to decide. The balance is about 1000 pounds. I think anyone really desiring a c section would pay that much.
Besides, in many countries where there is no public healthcare, people are used to paying for birth- this way one wouldnt have to run to London and pay zillions to go private.
Offer c sections on NHS to women who prefer them, but request them to pay the balance.
It doesnt encroach on patient rights and also ensures the appropriate use of resources.
Had cesareans not cost more I coundnt for the life of me have understood why they are denied.

[beachcello]

LaraCameron - Although when I went for my booking appointment the MW said that birth options aren't usually discussed until after 30 weeks I saw the consultant at about 16 weeks and she agreed the ELCS then. Like you I was a physical and mental mess the whole time so there is no way I would have been able to get through the pregnancy to 30 weeks without having the birth issue resolved. I was not sleeping more than about 2 hours a night and not able to even think about parenthood until I'd seen the consultant. I would set the ball rolling as soon as possible in terms of asking for what you want. I hope you manage to get the support and birth you need.

[Stangirl]

Lara like beachcello, my first appointment with the ob at around 18 weeks guaranteed me an ELCS.

maxbear I'm really pleased that you reassured the OP but I am one of those women who just didn't want to give birth that you so disapprove of. I don't have tokop but am really not keen on pain and am very lazy. Also every MW I met was an imbecile that got everything wrong from health advice to marking up blood samples and I wouldn't trust them to deliver an envelope let alone a baby. My DP thought I was making it up about how poor the MWs were, until he met them - then he was outraged at their crapness. I may have been just unlucky though.

[LaraCameron]

stangirl I do understand what you are saying. Where I am from originally, there is no concept of midwives, and doctors cannot decide what kind of birth a woman should have. That is probably because it is mainly private healthcare. It certainly gives you more empowerment!
However, other than in London there are barely any private hospitals in the UK providing maternity services. I hope all that changes for the better.
Maybe you'll consider having a baby in India- I can personally guarentee it is super- only obstetrician led care and nobody can override your decision of a c section. There is equal support for natural births- my cousin opted to give birth there with no pain relief- not even gas and air and she said the support was wonderful. The best part is that almost all hospitals there have private rooms- you dont even have to specify one most of the times.
Keep in mind Im refering to the big cities and not rural areas.

[maxbear]

I don't totally disapprove of elective sections if a woman really needs one at all. I just don't think they should be done on the NHS.

In many cases sections can lead to many further problems, and serious problems which is why I feel that women should not be allowed them on the NHS. These problems cost lots of money to sort out and that is why I don't feel that we the tax payers should be paying for elective sections.

There is eveidence that women who have sections are less likely to have subsequent pregnancies, this may be due to people who have had difficult births not wanting to go through it again, however it may also be due to infertility which is more likely to occur after a section. Also the more sections a woman has the more likely there are to be problems, not such a problem if you only plan to have one child but it can put subsequent children more at risk. Believe me if this was not the case I would love to advocate a choice between section and normal delivery.

[LaraCameron]

maxbear i understand what you are saying.
But dont you think vaginal deliveries cause problems as well?
Ive heard of so many women who have a rectovaginal fistula, lax vaginal muscles, prolapse, incontinence etc- woulndnt that also cost the NHS money to correct?
Plus so many babies( at least 4 in my family) suffer nerve damage and severe injuries due to forceps etc. Surely that costs the NHS plenty to fix?

What Im really against is doctors insisting on forceps against the mother's wishes when a c section can still be performed. In any case, if forceps dont work, a c section is performed, so by that logic, its never to late for one?
Why do doctors bully women into forceps deliveries just to keep the section rates in the hospital down?
Forceps for me are the biggest nightmare- a fate worse than death truely.
Ive seen how barbaric they can be even when used by the best of doctors.

I pray every day, that I never have to face forceps or ventouse.

I just wish birth choices and birth plans were respected a little more.
I completely respect your opinion on sections and to some extent agree with it, but I like the fact that you wouldnt force it on others. Wish more midwives were like you.
I read an article on the Royal College of Midwives website and it was so demeaning towards women with tokophobia. It sounded like most women who claimed to have it were putting on an act, or were completely crazy and didnt know what was good for them. It clearly seemed to imply that most of these women shouldnt be given cesareans as they will benefit from 'therapy' and not cesareans.
I hope this horrible attitude changes.

[seoladair]

I had a wonderful experience with an NHS section 10 days ago. I really enjoyed the birth, and was up and about that evening. Recovery has been easy, as I expected, in fact even easier than I had expected. Emergency c-section carries far more risks than elective, which is very safe.

I had to argue for it, but it was fine. I never met my consultant, but they arranged 2 meetings for me with senior registrars, where we discussed things in depth. I was very well-prepared - I had articles from the British Medical Journal, print-outs from the Elective Caesarean website, and many articles relating to birth injuries to both mums and babies. I argued that I didn't want forceps, ventouse or emergency caesareans, and that as a high percentage of vaginal births result in these interventions, I would rather have the planned low risk of an elective. I also said that a vaginal delivery is only safer than an elective c-section if there are no problems, and that's impossible to predict.

It was a really fantastic way to give birth, and I am still on a high from the joy of it all! The moment the baby was brought out was so emotional, and my husband and I both wept tears of joy.

Best wishes to all of you.

[Chynah]

maxbear i understand what you are saying.
But dont you think vaginal deliveries cause problems as well?
Ive heard of so many women who have a rectovaginal fistula, lax vaginal muscles, prolapse, incontinence etc- woulndnt that also cost the NHS money to correct?
Plus so many babies( at least 4 in my family) suffer nerve damage and severe injuries due to forceps etc. Surely that costs the NHS plenty to fix?

start talking about tat to a consultant and you will start to get sensible answers - midwives just dont seem to gert it.

[Chynah]

'get it' sorry manykeys missing from keyboard here!