I need your help and advice regarding tokophobia

(66 Posts)
WantsToBeFree Thu 02-Aug-12 23:00:38

Hello there!

I'd like to do a full disclosure first: I am 24 years old and I am not pregnant. I am however battling with severe tokophobia since many years now and I would really appreciate some support and advice from anyone who has been through the same.
I am not exaggerating when I say that this phobia has taken over my life. Anything can trigger sudden depression and anxiety attacks- the sight of a small child, babies, pregnant women, married couples.
This is something I rarely admit to even myself, but I have failed my examinations last year because I was experiencing severe anxiety and panic attacks during that time. Unfortunately, I am so embarrassed of this condition that there was no way I could have written to my university about it in order for them to consider mitigating circumstances.

To be clear it is not labour pains that I am frightened of. I have a very high threshold of pain and I am quite sure that if push comes to shove I can handle contractions even without pain relief.
My phobia pertains to the potential after effects of childbirth which I have seen several women close to me suffer from. I am referring to pelvic organ prolapse, incontinence, severe tears, broken tailbones, broken symphysis, pudendal nerve damage, and obstetric fistulas.
I do realise that these conditions are not common and that I may be able to avoid them. However, I have seen how devastating and life altering they can be and I am certain that I will never be strong enough to handle them should they arise. I would want to avoid even a 1% chance of ending up with these conditions and I live in constant fear that I will be forced to deliver vaginally and be part of the unfortunate few who face these horrible problems.
In an effort to overcome my phobia, I have done a lot of research to compare c sections with normal deliveries. While I understand that an uncomplicated normal delivery is probably easiest to recover from, I also know that it cannot be guaranteed. The idea of an emergency c section, a forceps/ventouse delivery or an episiotomy makes me sick with panic.

I know c sections come with risks, and I am familiar with those risks. I just feel that I can emotionally cope better with those risks as opposed to the ones associated with vaginal deliveries.

I feel that I could be comfortable with the idea of having children so as long as a c section was assured.
What haunts me on a daily basis is the fact that this cannot be assured. My lifestyle involves a lot of moving around and I have no way of knowing which country I will deliver in as and when I fall pregnant. This is what worries me continuously because every country has different policies on elective c sections. I have no way of knowing if I will be in a sympathetic environment when I do decide to get pregnant.

It sounds very crazy and messed up I am sure, but I just had to share my feelings with other women out there who may have been through the same.
I was sexually abused as a child and this may also have something to do with my tokophobia.

The logical part of brain tells me that with a valid mental health disorder, I should be able to get a c section but a part of me is constantly terrifiedsad What if they refuse when the time comes? What if I have to live the kind of life I have seen some women leading (with fecal incontinence, uterine prolapse, SPD and in one case even a colostomy)?

If there are any women out there who have been through the same, please get in touch with me. I'd love to know how you managed to get over this awful phobia.

It has now come to a point where I have started disliking childrensadsad I used to love them to bitssad

Flosie1989 Thu 09-Aug-12 21:20:36

I've never heard if this phobia so thank you for sharing and feeling as if you could smile

I'm sorry that you feel this way and im sorry that I can't give you any advice. However, at least you've now heard that there are other ladies in your position and your not alone.

I hope in time you will feel comfortable enough to have a baby and be granted the elcs that you would like.

Flosie1989 Thu 09-Aug-12 21:28:54

I'd also like to add a positive story....

I had my first baby in may this year and had a normal vaginal delivery with just gas and air and no intervention e.g forceps. However I did suffer a 3rd degree tear which lead to me being taken to theatre afterwards to be repaired. If I didn't have the surgery I would have been left faecelly incontinent. I have healed very well and was prescribed strong pain killers and anti biotics which helped a great deal.

3 months down the line I am back to having sex again, using tampons and mobilising freely. I feel no pain at all now smile

My experience has not put me off having another baby vaginally in the future as it felt wonderful (sounds strange I know) There is no evidence to show that I'm more than likely to suffer another 3rd degree tear again it's just pot luck.

I just wanted to say that yes it's not a great thing to happen but I feel the strongest I've ever felt and by far the bravest grin

lovepigeon Thu 09-Aug-12 21:47:44

Whoops just realised I didn't phrase that very well. I meant with regards to VB - not that is is super risky but it is often presented as bad things being so unlikely as not worth worrying about.
Of course ELCS has risks too.

elizaregina Fri 10-Aug-12 11:06:04

No your right love pigeon, its always elc probs that are pushed.
most people with a brain realise that there is a risk to any form of surgery! many thanks

OP - I'm sure it is very upsetting to be called 'too posh to push' but as you're only 24 and not pregnant I don't really see why the issue needs to come up in conversation. I wouldn't have thought it's helpful for you to keep going over the same ground with your friends and be insulted. Just stop discussing it with them.

WantsToBeFree Thu 06-Sep-12 10:16:43

Hello again!

I just need to vent a bit and share a quick update. I've been going for counselling regularly and it hasn't helped in the slightest.

My counsellor is trying to tell me that women with tokophobia can deliver vaginally. I don't deny they can and I'm sure many have. But I know that I can't and I find it annoying and patronising when people think they know what I can and can't do better than me.

How do I tell her that for me it's a c section or nothing? I'm not looking at changing my mind, I just want to get over the constant anxiety and random panic attacks. That's why I went in for counselling.

I'm feeling so frustrated and disheartened right now. This phobia has literally ruined my life.

HmmThinkingAboutIt Thu 06-Sep-12 12:54:37

The question I would ask, is what is it you are trying to get out of the counselling and what is the actual goal of the counselling in the first place?

If you are in the mind set that a c-section is the only thing you will consider and the counselling is designed to only explore the idea of giving birth by VB rather than address the issues around your anxiety I think you have a fairly big sticking point.

From what you have said it does suggest the counsellor isn't making a connection with you and really doesn't understand what you hope to achieve - you have different goals effectively. Its certainly something you should discuss with the counsellor purely from the point of view of establishing what you are both actually trying to achieve from it.

You should be discussing exactly how you feel and how you don't feel the counselling is doing a thing for you, and how you are finding it patronising, not listening to how you feel and it is frustrating you. Precisely because if they don't know that they really can't progress from where you are now in a positive way, and because to be blunt about it, there is a hell of a lot of counsellors out there who have no experience whatsoever of tocophobia and are trying to treat patients. Unless you tell them, what they are doing is crap, they'll keep doing it like that!

WantsToBeFree Thu 06-Sep-12 15:06:14

hmmthinkingaboutit

As I described in my OP, anything related to childbirth can make me anxious and panicky. The preoccupation with this fear is so bad that I find it hard to concentrate on my studies since the smallest of things can trigger a panic attack. I want the counselling to help me deal with this anxiety and block out these triggers or at the very least deal with them better. My aim isn't to get used to the idea of a VB because I will NOT consider a VB. It has to be a c section and of that I am certain.

I've said this to her numerous times but she keeps harming on about the possibility of me not getting a c section. I don't want to even think about that possibility because it makes me want to jump off a cliff.

HmmThinkingAboutIt Thu 06-Sep-12 18:02:38

Have you considered trying a different counsellor. If shes not 'getting' it, then I don't know if you are ever going to get anything out of it.

WantsToBeFree Thu 06-Sep-12 18:30:30

I'm feeling a bit hopeless to be honest. It's hard for me to explain this, but I live in mortal fear of being forced to endure a vaginal delivery.

The thing is, I'm not sure if anybody can even understand what I go through.

HmmThinkingAboutIt Thu 06-Sep-12 18:48:27

The truth is that there is some very poor counselling for tocophobia out there. Even NICE admit they don't know what works and what doesn't. Their recommendations as part of their updated guidance on c-section was that research in this area was urgently needed to assess what DID work.

So I think you need to take that on board and if this is taking over your life this much be prepared to try a couple of alternatives.

Perhaps breaking down into dealing with panic attacks and how to cope with that, rather than the actual problem of your fear of childbirth is the way to go. Deal with the symptoms first then the cause.

I don't know. I don't think anyone has the answer you are looking for at the moment.

WantsToBeFree Thu 06-Sep-12 19:43:30

I keep having thoughts that I know are ridiculous but I don't know how to avoid them.

I keep thinking "What if no doctor agrees to perform a c section?" or "What if my I go into premature labour and they fob me off?" or "What if I am placed too far from London to be able to access private care?" or "What if there are no private hospitals available?" or "What if the guidelines change and c sections by request are outlawed?" .... the list is endless. I want to avoid these thoughts but I find myself frustrated.

wheresmespecs Thu 06-Sep-12 19:47:12

How many counselling sessions have you had OP? What is your counsellor actually called? (I don't mean name, I mean are they a CBT counsellor, etc).

Are they private or NHS? If NHS, you have done very well to get one so quickly. Is this counsellor someone who specialises in tokophobia? They are very rare. Presumably this is not a 'midwife counsellor' as you are not pregnant and are not in the ante-natal care system.

It seems very odd that this councillor is making you focus on having a VB rather than dealing with your anxiety in a more general way. Especially given that they are very unlikely to be directly connected to ObGyn HCPs. I think some more specific details about this counsellor would be helpful OP.

I had an elective caesarian for my 1st DC on the NHS for primary tokophobia so I have a fair bit of experience in this area.

EvenIfYouSeeAPoppy Thu 06-Sep-12 20:08:03

Wants, is this CBT you're having? If so, what the counsellor is possibly trying to do is to encourage you to theoretically confront the object of your greatest fear. It's a standard approach with phobias. It may be, for the counsellor, more about getting you to have that theoretical confrontation here and now than about any future pregnancy and birth you may or may not have.

You may need to tell her very directly that you would like her to treat your anxiety rather than your phobia. Phobias are usually treated with the goal of being able to perform the feared activity (go on the tube, on a plane, cope with cleaning up vomit, etc.) If she is treating you for a phobia, this is likely to be her aim. Perhaps say 'I would like you to see me as an anxiety patient needing techniques to get it under control rather than a phobia patient'.

That said, if you could have that confrontation it might be very beneficial to you - whether or not you go for a CS or VB later on.

Have you spoken about your abuse?

WantsToBeFree Thu 06-Sep-12 20:39:38

EvenifYouSeeAPoppy

Yes, she said we are starting CBT. And you're right she asked me to come up with a hypothetical situation related to childbirth that terrifies me the most and to write about it in detail. That should be easy- my worst nightmare is a forceps/ventouse assisted birth.

I have spoken to her about my abuse and my absolute aversion to intimate medical exams. The sight of stirrups makes me sick to my stomach and gives me panic attacks. I cannot bear to be touched or examined intimately by a HCP.

wheresmespecs

She is a clinical psychologist who specialises in phobia management. And this isn't in the UK- I am temporarily out of the country and I am under the care of a private clinical psychologist.

I have sent you a PM as well with some questions!

wheresmespecs Thu 06-Sep-12 21:28:06

Here is the link to the previous thread OP - www.mumsnet.com/Talk/childbirth/954334-Anyone-asked-for-ELCS-for-first-baby

It has good and bad stories on it - mine was a good one, but the original poster Pixiecake had an awful experience, to warn you.

WantsToBeFree Fri 07-Sep-12 08:11:32

I've realised that the NHS system is too much of a "lottery". Even if they agree to give me a c section, there is too much uncertainty associated with what will happen if I go into labour prematurely. If the consultant on call is opposed to c sections for non medical reasons I may well have to give birth vaginally.

Could someone with experience of private care chime in? Under private care will I be guaranteed a c section even if my waters break early?

thunksheadontable Sun 09-Sep-12 07:24:03

Hey there

I think you need to see a psychiatrist if you are self-diagnosing tokophobia. From what you say, you are avoiding a lot of situations and it is disabling your life. I don't know enough about tokophobia to say that's not tokophobia, but it certainly also sounds a lot like it could be OCD (avoidance is a compulsion). There are a lot of "what if's" and also that fear that you can't be certain, the need for reassurance etc which can be OCD. It also seems to be snowballing so that more and more situations need to be avoided to stop the panic.

I am not saying this is OCD and not tokophobia. At all. I am just saying that it would be valuable to have this looked at professionally, ideally by a specialist perinatal mental health team.

Counselling won't really help with these sorts of fears unless it is cognitive and/or behaviourally based.

The main issue as I see it is that as you are not pregnant now there is absolutely no way of dealing with your fear productively e.g. you can't arrange for an elcs. So all your thinking about it is going nowhere. None of your thoughts will solve your problem; you are spinning yourself into a frenzy trying to apply problem solving strategies to a hypothetical problem. The issue with this is that you can never, ever solve a hypothetical problem the same way you can solve a real one. Seeking reassurance that you will get an elcs won't work, because no one can GUARANTEE it in your current situation as you are not pregnant etc and so at the back of your mind, you will always doubt: what if, what if. This will drive you to seek out stories of people who did get an elcs but even if you read 1000 stories where a woman did get one and 1 where they didn't, your mind will fixate on that.

The thing that is disabling you now is not actually your fear of childbirth per se. It's your worry about your fear of childbirth not being taken seriously and being forced/coerced into having a natural vb. If you were pregnant, you could take steps to ensure that you didn't have a vb if you didn't want it (arranging a cs, going through the process to get one, moving area if you needed to, getting it privately) and close the loop.. but your life now revolves around something you just can't solve or cure right now. That is your core issue from my reading of it. I think your issue right now is what the desire for certainty is doing to your life in the here and now.

thunksheadontable Sun 09-Sep-12 07:30:09

PS imaginal exposure (which is writing the story out) is also used for anxiety, it is not just for phobia. CBT for anxiety involves confronting your fears just as much as it would for a phobia. My fears revolve around my baby dying and I have just had to do this, writing in excruciating detail what it would be like to find his lifeless body. Like you say, it made me want to jump off a cliff when it was first suggested and really, I couldn't approach it until I was on anti-anxiety meds. Even then I needed my dose to be increased when this therapy started...

the thing is, even if you end up getting a cs, you need to deal with these fears so they stop you avoiding real life situations that are only tentatively connected to childbirth and pregnancy e.g. all children, married couples.

Imaginal exposure may never cure your fears around childbirth but you will need to address this hyperextension of your fears anyway if they are affecting your everyday life to the extent they are.

WantsToBeFree Tue 11-Sep-12 16:33:39

thunksheadontable

Firstly, I'd like to clarify that I have been officially diagnosed with tokophobia and extreme anxiety. I haven't self diagnosedsmile

That aside, I think you've really understood my problem! I couldn't have put it better myself if I tried. That's exactly what is happening with me- I seem to fixate on negative stories and spend my time worrying that it will happen to me.

I am petrified of the idea of a vaginal birth and I desperately seek reassurance that I won't ever have to do it. Obviously, nobody can provide that kind of reassurance and therein lies the problem. You are absolutely correct in saying that I am attempting to solve a hypothetical problem which is admittedly a fruitless exercise. The trouble is, I can't seem to break out of this cycle even though I fully realise how pointless and damaging it is.

I have been undergoing therapy for over two months now. I have 4 sessions a week and I am undergoing CBT.
It hasn't helped. At all.

thunksheadontable Thu 13-Sep-12 05:02:59

Are you on any meds? I found I couldn't really engage with therapy until I was on the medication. I did nearly three months of two sessions of CBT and Mindfulness while pregnant and I would have said the same as you - it did almost nothing for me, if anything, all the talk just made it worse! Once I started medication, things began to improve...

I think for therapy to work you have to totally engage with it, heart and mind. I paid lip service to it for ages. I was going in there spinning tales but in reality I was just sitting there critiquing the therapist thinking "you don't get this" and doubting every word that she said. Then I went on the medication and got a new CBT therapist and although again for the first few weeks I only half did the work, eventually I thought ... sod this, I can't and don't want to live like this so I am going to give it everything I have. I diverted ALL time I had been using to look up horror stories/seek reassurance about my fears to learning about OCD, Acceptance and Commitment Therapy (my favourite) and Mindfulness (this helps with thought/action fusion where you believe that your thoughts about a problem are as worthy of attention as a real life problem or are trying to problem solve hypotheticals). It took a few weeks and there are times the compulsion to seek reassurance is still high but I don't do it now because I know it maintains my fear and there will never be a positive outcome to it. At the stage I'm at, I am beginning not to have as much anxiety but it is not a quick fix, it is good days and bad days and my meds have had to be increased again. It is a slog, I have to say... but the days the anxiety is less make me realise it is worth it.

4 sessions a week is a lot! It doesn't really give you any chance to do the work, does it?

WantsToBeFree Wed 19-Sep-12 15:14:24

I failed my degree. I failed it...

And it's all my fault because I couldn't deal with my tokophobia and anxiety.

I used to be so focused, so bright. I had a bright, bright future ahead of me and everyone said so. Now it's ruined.

I'll never be able to explain this to an employer....I'll never get over this...

RalucaV Thu 20-Sep-12 09:49:28

Wants,
I'm bumping it up because others might have some wise words for you.

I really feel for you, but consider that you haven't had good conditions to be able to work on your degree. Having to deal with mental problems is the same as any kind of disease. Would you feel bad for failing because you have been dealing with pneumonia? Not really, right.
I'm sure you will be able to overcome this and get your degree, but you need to be less demanding on yourself at least for a while.

1944girl Thu 20-Sep-12 18:41:53

Take one thing at a time.If you are studying for a degree try and put tokophobia on the ''back burner''.
I know it is hard but if you really want or need your degree that comes first, provided you dont get yourself pregnant during that time of course!.

HmmThinkingAboutIt Fri 21-Sep-12 17:40:06

Tokophobia is more common in women who have anxiety / depression issues to begin with. The two go hand in hand. My gut feeling is you are focussing on the tokophobia when the reality is there is more going on than one simple issue here.

If you've failed your degree because of it, then I would suggest its not just tokophobia which is ruining your life; its definitely providing a focus for your anxieties but I'm not convinced its your only problem and if you keep thinking it is then I don't think you'll find the solutions to your problems.

Honestly, I think you need to get a second opinion. I strongly suspect that actually there is a lot more going on here than just tokophobia.

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