Was anyone denied a cesarean on the NHS despite having tokophobia?

[LaraCameron]

Hi everyone!
I have had severe tokophobia since I was sixteen. The thing is I have asked a similar question before about whether NHS allows c sections for this reason and I got some positive answers.
What I would like to know is - was anyone denied a cesarean despite mental health issues and a history of abuse like mine?
If so how did you deal with it? What did you do - second opinion, going private etc. I just want to be prepared. If you were denied one, what were the reasons given to you and how hard did you fight back?
I simply cannot even contemplate the idea of a natural delivery- the vulnerability, the whole process will bring back horrible memories. A c section will be hard enough. Even at my age, I have never been for a pap smear, my phobia for being examined is so great. I had to have a breast exam once, and I cried for a week. I have not been able to get over my abuse despite my best efforts. The thing is my hubby doesnt fully know about this.I just dont like to talk about it at all.
Just to let you know, this is our one and only baby- we dont want more. We are adopting one, but then thats it. Also, my family has a history of VERY bad births- proplapse, incontinence, sexual dysfunction, my aunt and cousin both got the much dreaded rectovaginal fistula. So I am PETRIFIED.
I have already undergone therapy ( not in the UK though) and it hasnt helped.
I dont want them to fob me off by saying get therapy, we cant help you.

It will really depend on your hospital, but you should be aware that the Dept of Health is putting huge pressure on hospitals not to allow you to have a c-section, and they will expect you to at least go through some sort of birth clinic before accepting your request. Do you have anything in writing from the clinic you attended out of the country?

I don't know what the best advice is, but I would certainly discuss this with your GP prior to becoming pregnant, possibly asking to see a midwife or even consultant from your preferred hospital to discuss their policies and processes.

Can you financially consider the private route? If at all possible financially, it may be easier for you to go down this route.

I'm currently being put through birth clinics and psychological counselling as my request for a repeat c-section (I had the previous one on medical grounds) was not accepted at 30 weeks when I had expected it to be.

I realise this all sounds really negative, but I think you should consider the possibility that you may need to go private.

Sorry to hear about your phobia, it does sound really strong.

I am 24 weeks pregnant and have been denied a c-section on the NHS. I wouldn't say I have tokophobia, but I did have a really traumatic vaginal birth with my DD 3 years ago, and the trauma gave me really bad mental health problems (never had mental illness before this) and ended up in a mother and baby unit for 3 months.

The consultant was adamant that I should not be allowed an elective c-section. Despite all the trauma I went through. He said that second deliveries are nearly always much easier anyway. I suspected there may be some target-driven reasons behind his decision.

Anyway, I am not fighting the decision, but rather have decided to embrace it. I've enrolled on a hypnobirthing course and aim to do all I can to stay really calm and in control this time round. I have read the hypnobirthing book and so much of it makes sense, I already feel calmer than I did. It may be worth you looking into it? I got the book out the library, so completely free to have a read and see what you think?

I reckon if you make enough fuss you will get one

If they keep saying no, then start speculating about the legal consequences of their decision... guaranteed to get a consultant's attention (I'm married to one, this is his advice)

Hi Lara - I posted on the other thread too, I hope you don't mind.

I do appreciate that you don't want to go for therapy or counselling (or be 'made' to talk about things you don't want to) - it's worth considering that you might have to at least have an appt with a counsellor to say those things.

If you are in an area where the accepted route to get a CS agreed by a consultant on psychological grounds is to get a referral by someone from the perinatal mental health team, it will be quite hard not seeing someone from psych services at some point. That might not be how it works in your particular area, it all varies so much.

I know I asked if you had had an actual diagnosis, and I think you had, but it was outside the UK? Well, it's absolutely worth mentioning that to a GP/MW, but they might need to 're-diagnose' you in terms of their own system.

It all sounds a bit complex, but you can see their POV - if someone walked into a surgery and said they'd been diagnosed with depression in Tonga, they didn't want to see anyone else about it in the UK, so could they just have the antidepressants please, it would put a doctor in a difficult position in terms of responsibility/liability.

As I said before - broadly speaking you have two routes - one is to simply demand a CS, which will mean being asked for all of your reasons for wanting one by a consultant (who isn't a specialist in mental health), arguing your case, being prepared to ask for a second consultant, etc etc. It might work for you - it has for other women here. You would need to be very 'front foot' about it, and hope you didn't run into a consultant who reacted badly to that sort of approach.

Or you could try and get psych services onside to help you. You have a history of mental illness and abuse, I'm gathering - me too. I wasn't forced to talk about anything I didn't want to - I wasn't made to do any form of counselling (I was pregnant and frankly they said they didn't think there was time for anything effective to be scheduled, it would probably make me panic even more). They were able to handle things for me, and it really helped. Things I hadn't thought about, like having a catheter inserted - rather than having a MW on a ward do it, they waited until I had an epidural in and did it with the screen up, so I never knew when it was happening.

All I'm saying is, psychiatric services don't have to be your enemy! - I know I thought 'they'll force me to have counselling/I don't want to discuss past trauma' etc, but none of that happened. It was more the case that they got the measure of my phobia pretty quickly, and then acted to take pressure off me. I wasn't the only person with tokophobia they'd ever seen.

I've seen both threads too and have to say that you do seem incredibly worried about this (that's not a criticism by the way). Are you actually pregnant yet? Or TTC? Have you spoken with your GP or midwife about your concerns? How did they react? It's just that, while we can all be sympathetic, it sounds like what you really need are answers and the only people who can give you those are the people who are (or will be) supporting medically through your pregnancy and birth. I hope you get the answers you want.

jenga079, I think that was a shorter version of what I was trying to say!

Lara, this may be of interest to you - draft guidelines from NICE issued today have clearer information on CS for maternal request (which is your situation) than they had before.

Have a read here - www.nice.org.uk/newsroom/pressreleases/CSectionUpdateConsultation.jsp

The relevant bit is: - " when a woman requests a CS because of a fear of childbirth she should be offered a referral to a healthcare professional with expertise in providing perinatal mental health support to help her address her fears in a supportive manner. If, after providing support, a vaginal birth is still not an acceptable option to the woman, offer a planned CS."

These are draft guidelines - that means they may be subsequently revised after responses, but it's encouraging to see something that is clearer than NICE guidelines previously. They simply said that maternal request was not in itself an indication for a CS, and women should be offered counselling.

Which was all fine except they said nothing beyond that! Such as, what if counselling isn't successful, etc.

(Of course, the problem with ALL NICE guidelines is that they are just guidelines, and hospitals don't have to follow them... but still, it provides a clearer ideal 'carepath' than before).

Hi Lara, I'm having a planneed CS in a couple of weeks because of previous traumatic delivery. I was expecting to be refused on grounds of "2nd deliveries tend to be easier, thre are no medical grounds etc" I was lucky, the consultant I saw was very sympathetic and I did not have to fight my case. I was however adament, I went in with notes about my fears and of what had happened during 1st delivery to back this up. I had wanted a elcs first time round for various resaons but mostly intense fear beyond most women I know and unfortunaltely many fears were founded. I wish I had, had the strength of mind to be as determined to get the birth I wanted 1st time round as I was this time.
I'd suggest that you ask to see another consultant and take notes in with you so that you have a coherent argument and cover all your concerns. Try to also put across the impact that a "natural birth" could have on you. Your fears are real and should be adressed sensitively. Most women don't just want a c section because they think it's the easy option, there are usually genuine reasons and concerns for this. Your birth should be a stressfree as possible and if that means a c section then so be it. A planned c section can be a low risk as a natural delivery. Everyone involved in your delivery should be aiming towards a healthy baby and a healthy mum both physically and mentally and it sounds as if your choice of delivery will greatly enable this. Best of luck xx

fruitybread
Hi again! You must think Im crazy. And I wouldnt argue with you.
I certainly have very severe issues and the thing is Ive tried to have them sorted since I was barely sixteen ( was very young when the abuse and tokophobia started). Ive been treated for clinical depression as well. The worst part is I cant take anti depressants for my mental condition because they make my gynecological conditions worse. I have no problem being diagnosed by a psychiatrist here, I just dont see the point of further therapy-(over ten years of on and off therapy hasnt worked, so Id say these issues are not going away)
But as you are saying they didnt force you to get counselling, then it should be fine.
Ive reached a point where Im sick of trying to fight these issues. And I would have just let them be had this whole pregnancy thing not come up.

Thanks for your patience and support. Thanks for not calling me a demented and booing me out. ( really wouldnt have blamed you- a part of me actually understands how obsessive I am, but Im struggling with this).

schmee
Hi! It is possible to go private financially. Im sure you've made out how paranoid I am, so hubby is willing to pay up to keep me calm ( he's desperate for a baby, Im doing this for him). Even though he doesnt fully understand where I am coming from. In all fairness though I have never fully told him about my childhood trauma.
The only problem is, hubby is being transfered out of London and we dont know where. There is a list of possible places ( we'll know for sure in a month), and none of them seem to have private maternity hospitals.
I could come to London for the section, but if I go into premature labour, I'll have to go to the nearest NHS hospital anyway, which will throw the c section plans out the window. If you were as neurotic as me you'd realize that that is a major problem. I dont know if this means anything, but a lot of babies on mine and hubby's side of the family are preemies, so that is a possiblity.
If we were in London, I wouldnt even bother asking NHS. We are doing this just once anyway and we even have private health insurance which would cover like half of it, so considering my phobia it would be well worth it.
I considered going back home ( my doctor there who knows my history had suggessted a c section herself), but then hubby will miss out on the birth possibly.
And to answer your question, I have a FOLDER of papers about my mental health and gynecological problems- clearly stating that I have tokophobia and severe clinical depression and that I have been in therapy for the same.
Dont know if they carry much weight though. I'll take them along anyway.
Thanks for your help, and I'll shut up about this now.

ohmyfucksy
Hello! You are the one I should be talking to.
Im a bit confused though- I feel uncomfortable threatening a doctor with legal consequences. Dont get me wrong, Id love to do it , I just dont want to tick him off to the point where he doesn't want to help at all!
Some advice on how this can be done tactfully?
How many ways are there of saying "I will sue you" without seriously offending the other person?!
Sorry about the bad sense of humor, but when im nervous I make dumb jokes. Besides for some reason we have the legal right to refuse a cesarean but not to demand one.

Lara, I don't think you're demented! at all, or anything near it. You sound quite like I felt. All very well me being calm etc about it, but I got my CS and had my baby, and it all went so much better than I could have hoped (so be encouraged by that if you can!).

I do think you should be encouraged by the latest CS guidelines from NICE, seriously. What they now say, clearly, is that a women who has a serious fear of vaginal birth and for whom counselling/therapy doesn't achieve enough of a solution will be given a CS.

That's a really big advance on the current guidelines, which simply say women should be offered counselling, and they can ask to see another consultant if they are refused a CS. Now the draft guidelines say a consultant can refuse you BUT they then have to send you to a consultant who WILL carry out a CS.

As someone who has spent a long time picking through these guidlines and how they are used, that's a huge, massive change which should mean that women who desperately want Csections won't be denied them.

After dd1's birth that was taumatic and filled with incompetence by my mw, dh and I went to see a consultant before even ttc #2 (and it took nearly 3 years to even contemplate it). My gp referred us as I really felt that if I had to go through that again and the 10 months it took to recover after the birth, I would rather adopt. The consultant started off by saying that on paper my birth seemed straight forward - dd arrived in 2hrs 5mins, but my notes jumped and missed vital details. I went in quite calm but ended up in tears (I always cry when I think about dd's birth) and dh took over explaining what happened and why we wanted a cs. The consultant seemed to listen to him more and completely changed his tone. He apologised for my birth and said he would want to see me when pg and would prefer me to have a natural birth but if I still felt this firmly nearer the due date then he would do a cs.

I was terrified that he was thinking that once pg I'd change my mind, but we went ahead and I'm now pg. At my 1st appointment with my gp after discovering I'm pg, he told me he'd had a letter that said I was viable for a cs, which was great to hear. I then discovered I'm expecting ID twins so they are more than happy to go ahead with cs.

Can you see a consultant before hand?

fruitybread I went through the guidelines- WoW! You're right this is a huge step forward!!
Sort of like in america- a doctor can refuse but HAS to refer you to someone who will carry out the procedure. The only difference being that there you can ask for one just because you want one. But this is still very positive.

PrincessScrumpy Hi! Sorry to hear about your experience. Its wonderful things have worked out though:) Identical twins- you must be so excited:)

I thought Id have the baby in India actually( we were there for 2 years) and
my doctor there had agreed to one- I had spoken to him well in advance. But now that we are in London, and moving from here as well- it would be hard to speak to anyone before hand. I could get something in writing from my NHS gp here and just carry the notes with me I suppose.

Hi, how did this work out for you? I'm in a similair situation now and any advice you can give would be much appreciated.

User1483291956 hi! I was just sent away from Guys and St Thomass yesterday with a categorical no.

I am now going to go try UCLH while keeping up my appointments at Tommys.

It's a minefield