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

HmmThinkingAboutIt Thu 02-Aug-12 23:22:00

Wantstobefree, its late but I wanted to reply tonight. There are a bunch of women on here who can relate to you and are fairly regular posters. Some have secondary tocophobia. Some have primary tocophobia but have managed to have kids. Some are like me and you and don't. So no you don't sound crazy or messed up. And there is lots of research that also that backs this up - you are more normal than you think. I'm sure one or two of them will pop in and say Hi when they see this thread. There aren't many places that seem to offer much support for tocophobia, but MN does have a few people willing to talk about it and try and help.

I'll reply again in the morning, when I'm less tired and can think a little better.

MrsJohnMurphy Thu 02-Aug-12 23:58:23

I think for your own sake you need to take a bit of control. Getting pregnant is not inevitable, obviously you move around a lot, but if the fear is affecting your life so much you need very good contraception until you are in a position to have the birth you need.

For you it sounds like you would need to be in a liberal country to be able to cope with pg and birth, I don't know what job you have, but you need to arrange this as a precursor to actually getting pg.

I may be wrong, but in this country if you had a phobia, you would be allowed a cs, if you could afford to go private this would be even more certain.

I remember reading a ladies account of a fourth degree tear on the internet when heavily overdue with my first, this scared the life out of me. I did end up an emcs, I honestly had never imagined a small person emerging from my vag, it just seemed impossible to me.

I had no idea of the after effects of birth when pg with my first, at that time nobody seemed to talk about it.

Ariel24 Fri 03-Aug-12 07:21:55

Hi OP, I've just read your post and I couldn't not reply. Everything you have written sounds exactly like me, I have felt every single thing you describe. I have tocophobia and am currently 29 weeks pregnant with my first baby. I don't know how I've been able to get to this point but I have, and I have been very lucky and had a great experience with the NHS so far. I had a brilliant midwife who understood straight away and referred me to a consultant, who on my first app with him when I was 15 weeks pregnant agreed to an ELCS when I'm 39 weeks. I still struggle every day with my phobia and have constant worries about the baby coming early etc but I am trying to get through it. For what it's worth I really couldn't fault the care I have had from the NHS but then I have been lucky as not everyone receives the sympathy that I have. I've also been lucky to have a supportive husband and mum and if it wasn't for them I don't know where I'd be.

Tocophobia really is awful to try and live with, I know exactly how you feel. It leaves you feeling petrified, anxious and depressed. Even though I have been granted the ELCS, I still feel awful and haven't been able to enjoy pregnancy one bit. Sorry if any of what I have written is depressing, I'm just trying to give my experience of it all. Have to say as well, Mumsnet has been great as I've met women with tocophobia who I would never have met in real life, it helps to talk about it here.

You really aren't alone in feeling the way you do, you are not crazy or messed up!

WantsToBeFree Fri 03-Aug-12 08:56:10

I'm so glad to know I'm not alone! Thanks so much to everyone for being so honest and forthcoming.

I think I should mention here that I don't have much support from my family. My mum is great-she's a fabulous mum, but I think she just doesn't get how serious my phobia is. She thinks I'm crazy to worry about something that hasn't even happened yet. She also seems to think its basically quite easy to get a c section if you want it but I disagree strongly. Sometimes when I say my own fears out loud, they sound bizarre to me as well, but I can't help how I feelsad

In my culture, not having children is almost unheard of so I'm working with the assumption that I'll likely end up with a man who wants children. My last boyfriend wasn't understanding at all about my phobia. He just told me to be practical and 'get a grip'. Needless to add, that wasn't helpful at all.

I'm single at the moment and terrified of being in a relationship. I'm convinced that he won't understand my phobia and put pressure on me to have children before I'm ready.

I know that private doctors usually agree to requests for c sections (at least in the UK) but I have no way of knowing if I'll have the requisite funds when they are needed.

Well, the requisite funds are something that you could work on? You're only 24 let's not forget. If having a c-section fund makes you feel more relaxed then start saving for one.

Since you're not TTC I would think about going to the doctor for anti-depressants as well to help you cope day to day.

And remember what you certainly can control - including the country you have your baby in. If you are in a country which doesn't do c-sections under those circumstances you can always (assuming you're British?) move back to the UK to have the baby. That could be challenging, but it's possible and so just decide no matter what the obstacles - that's what you're going to do.

HmmThinkingAboutIt Fri 03-Aug-12 10:04:05

Right, got a bit of time to sit down and answer this properly.

I just went through to find a couple of good old threads from the past that are interesting reading.

Strangest Fear
Please help a crazy woman
Petrified of Birth

I'm sorry to ask this, but I couldn't help but notice but two of these threads were started by a person called "WantsToBeAMan" and I couldn't help but notice the similarity in your username and the fact you'd be the same age. Are you the same person? The reason I ask is not to 'out you' in anyway, but more because it might help others to be able to try and advise you and help you better. Rather than going round and round in circles or just repeating what you've or others have said before. If you are not the same person, then they provide a really good comparison for you to look at and see that you are not alone in the way you are feeling and how it is controlling your life.

I really advise you to write all your fears down, point by point - no matter how trivial - to work out just what your phobia is about and to try and work out where its coming from. Not on here, but privately.

If you are falling exams over this or its affecting your relationships, you have a problem now - not one in the future if you get pregnant. Which again puts a slightly different angle on things.

I think the big thing for you is, if you haven't got this flagged up now with a doctor, is to do so - and to carefully explain the huge extent to which this is controlling you and your life. It sounds very much, like you need some sort of professional support now, not just when you are ready/desparate to have a baby. Its the very best thing you can do to ensure that wherever you happen to be, that your fears will be taken seriously.

In terms of getting an ELCS in this country or abroad on mental health grounds, you might face a battle but equally if you are already displaying such strong anxiety over this and have a documented history of it, then you'd have a strong case for one. Culturally, I think you'd probably actually be ok in most of Europe, the US and ironically a lot of Islamic countries where the preference is for a CS anyway.

I was rather alarmed by a story about Turkey were there is talk of changing the law to reduce the number of ELCS taking place - but was very pleased to read on www.cesareandebate.blogspot.co.uk/ that actually they were intending to put a clause into the law about tocophobia. It surprised me. I find it good to know that tocophobia is gradually starting to be properly recognised as a very real mental health condition that needs medical support in a variety of countries.

Ariel24 Fri 03-Aug-12 10:12:55

WantsToBeFree I'm sorry to hear you haven't got much support right now. My mum kind of knew my feelings about natural birth but nowhere near to the extent of how serious my phobia is. I told her about it properly when I was 4 months pregnant and she was great. It's a very hard conversation to have with anyone, and comments from partner's like 'get a grip' are very unhelpful. Tocophobia is a mental health disorder and unfortunately not a well known one at that. It's very difficult because I don't think any mental health issues are dealt with by society in general and even within the medical profession very well at times (my pov is also based on experiences I have of being treated for depression as a teenager, not just my tocophobia).

I'm really not sure what to suggest for you to do to help right now, as you say you move around a lot and haven't mentioned what the healthcare and dr's are like where you are right now. I can only tell you my experience of healthcare and the NHS in the UK. When I was in the same position as you (i.e. before I became pregnant) I went to see my previous GP in the area I used to live, as the anxiety and upset I was going through was becoming unbearable. He wasn't very helpful or understanding at all, and it was a very upsetting experience. I have been lucky that since becoming pregnant, the dr's, midwife and consultant I have seen where I am now have all been great. Do you feel that going to your dr now would be of help to you? One of the things recommended to me was CBT, not to cure my phobia but to help with my anxiety, so this may be an option for you at the moment?

You also mention about paying privately for a c/s, which I'm sure would not be a problem at all in the UK. It can be very expensive though and I wasn't aware of any hospitals outside of London or Watford where you could pay privately, but if anyone can correct me on this please do! This may not be an issue for you anyway, but although we arent too far from London, it's not close enough for my liking. Are you aware of the NICE guidelines that were updated last year regarding c/s? In theory they mean that women with tocophobia shouldn't be refused a c/s by an NHS consultant, but I don't think it's a guarantee, just a guideline. I don't know if this info is helpful at all to you but I hope it is.

WantsToBeFree Fri 03-Aug-12 13:18:07

HmmthinkingaboutIt, thanks for posting those links! Despite the similarity in usernames and the similar problem, I'm not the same personsmileIt did however help me to know that there have been similar posts on here before.

I will take your advice and write down my fears and hopefully discuss them with a mental health professional sometime soon. I have been to a psychiatrist but I find most of them rather unhelpful. I think they don't quite get why I'd fear a normal, natural process so much.

I don't know if this makes sense but I feel like counselling would help me more if I could be given an assurance that a c section will be performed if I still want it. I know this sounds pessimistic, but I'm just not going to change my mind about the fact that I prefer a c section.

Where I am at the moment, the couple of doctors (obstetricians) I've spoken to so far have been most dismissive about the mere suggestion of a c section on request.

I'd like nothing more than to deliver in London when the time comes, but I'm not sure if that will be possible because my future plans are completely up in the air at this point. I don't know where I'll be in the next 5days let alone 5years. Perhaps I'll feel more centred and settled when the rest of my life is more sorted.

Ariel24, It is very heartening to know that your phobia was taken seriously and that you've been granted a c section. To take what you are saying forward, unfortunately there are no fixed guidelines about CDMR in most countries and even where they do exist they aren't always followed.

Ariel24 Fri 03-Aug-12 14:30:24

OP I think that's great that you are thinking of seeing a mental health prof soon, that's a brave step to take and ultimately I think it's the right decision, as if it's affecting your life so much then you do need some support. I'm sure they would at least be able to help advise you on dealing with your anxiety now, which may not cure your phobia but it hopefully will stop it controlling your life. I also think longtalljosie's suggestion of perhaps starting to save some money will be good as it gives you the financial back up to pay for a c/s, I think that would give you more of a feeling of being in control of things too.

Good luck and hope you get some good support soon.

Ushy Fri 03-Aug-12 16:23:12

Wants good luck and be determined in your choice - you feel instinctively it is right so don't be deterred.

On the point of addressing mental health issues around wanting a c-section, I personally have quite strong feelings about this. smile

I had a vaginal birth that left me in agony, unable to walk, with ongoing health (bowel) problems and PTSD. A subsequent birth was by caesarean section( no-one would have talked me out of it and this was before the NICE guidelines changed). I was given a list of the risks as long as your arm. I pointed out that no-one had told me anything about the risks of perineal trauma before my vaginal birth.

Actually, wants I don't think you have a mental health problem - I just think you are very aware of the potential risks of perineal trauma in a way I was not. Personally I think you are right. You will however, have to play the mental health card because the disgraceful system we have does not willingly support women's informed choice.

However, if you want a c/s wants you go for it. Don't be afraid to kick up a fuss, ring the press, call your MP - stir stir stir. Blog on the Care quality Commisison site about how awful the hospital is in not abiding by NICE guidance - keep on and on and on. Been there, done it, it works.

Actually, with the change in the NICE guidelines you will probably find you are pushing on an open door.

Good luck and remember everyone who makes a stand on this makes it better for other women in the future.

Ushy Fri 03-Aug-12 16:26:10

Wants sorry not at all implying that the affects of tokophobia are not real but that it is the system not you that is the problem

Sorry didn't explain myselfsmile Good luck

WoodlandHills Fri 03-Aug-12 16:30:45

I live in the UK, I was granted c/sections with both DC for tokophobia. My reasons are very similar to yours. I also have a RL friend who would love a baby but she suffers from it too.

Unfortunately it seems that lots of people (both on here and RL) judge negatively when it comes to elcs and don't seem to take tokophobia seriously. too posh to push and other such judgemental bollocks.

But please be assured you are not on your own at all, and please feel free to PM me if you want to chat more as I am not comfortable talking about it in detail on the main boards.

WantsToBeFree Fri 03-Aug-12 18:40:50

Ushy, You don't have to explain yourself I understood how you meant itsmile

In fact I think you may have hit the nail on the head. The issue here is that I prefer the risks of a c section because the potential after effects of a normal birth terrify me. Now if c sections were a readily available and accepted option, there wouldn't really be a cause for concern. What fuels my anxiety is more the possibility of being denied my choice than anything else.

The judgement from random strangers is something I'd just tune out because it doesn't bother me.

I'm so terribly sorry to hear about your first childbirth experience sad I've seen women very close to me suffer from similar conditions and I know how devastating and shattering they can be. It's a right shame that you had to kick up a fuss to get a c section even with a prior traumatic birth that left you with ongoing issues. I can't believe how backward our society can be when it comes to childbirth. We welcome technology in every other sphere of life, but try hard to keep childbirth as primitive as possible.

WantsToBeFree Fri 03-Aug-12 18:43:33

WoodlandHills, I agree with you! I've been called 'too posh to push' so many times! My gosh it's such an awful phrase isn't it? So insensitive and quite vulgar to be honest.

I will definitely PM you soon. Thankssmile

elizaregina Tue 07-Aug-12 10:22:40

Wants

I have been granted an ELC but not neccasrily on mental health grounds. I had a text book fist labour - very short for a first time and had no physical after effects to speak of compared to others. HOwever I found the general pain levels and worry etc and not knowing how long labour will last - how it will end all too much for me. I had homeotherapy massage and all the rest of it - MW amazing as was DH, so really it couldnt have gone better, this is what worried me for the next time round!

My consultant is part of birth trauma association and basically has let me choose what I want with no stress or worries, she told me this at about 20 weeks.
I am keeping an open mind about other modes of delivery but now I have been told I can have an ELc the weight of worry lifted off me has been incredible. Whilst I still worry about going into labour before my date - as all us elc ladies do - I have been able to relax a whole lot more.

I even had a dream about being in the operating theatre last night which has helped me mentally prepare for surgery!

There are consultants out there who will grant you one without a fight, just make sure you take the reigns of your life - when/if you fall pregnant do your research and get yourself into a country that will give you what you want.

For warned is for armed - research and prepare yourself.

If you are living abroad then you may have to return to UK to deliver your child. But this is possible - no one else is in control of your life! You are.

WantsToBeFree Tue 07-Aug-12 11:52:02

I just wanted to post a quick update. I went for my first counselling session yesterday.

The lady seemed nice enough and was understanding.

But I have a confession to make. I am convinced that I cannot ever agree to the idea of a vaginal birth. I'm not seeking therapy to get over the phobia (because I know I can't) I am seeking it to learn how to cope with it and live a normal life. I don't want it taking over my thoughts.

But I sensed that she is trying to get me to get over the fear and get used to the idea of a normal birth. How do I tell her that it's not going to work?

I've even spoken to my obstretician gynecologist about my concerns and she was most dismissive. She told me that childbirth was normal and so were it's risks and lectured me on how I'd get through it just like all other women.

DontmindifIdo Tue 07-Aug-12 12:05:45

Right, you aren't pregnant now, so you can start saving. If you could afford a private c section then you would have the choice 100% and it wouldn't matter if your NHS obstretician thought. I think you strike me as needing that safety net of 'control'. Would it help you if you knew you had the option of buying what you want?

If you could save towards it, you could always tell others it's your retirement fund or your house fund (which it could be if you are able to get an NHS ECS), but then would that help you relax that you have the choice if at that point (20 weeks normally) they said no?

(I think it's about £10k you'd need to save for a private birth in London, not that unrealistic if you said, save £170 a month for the next 5 years)

Many health professionals are dismissive of fears of birth, but then it's 'normal' for them - they 'experience' hundreds of births a year, yet this is a 'one off' for you - it is normal for the human race, but so are many things that I'm scared of.

RalucaV Tue 07-Aug-12 12:08:55

Wants,
I think you have to be honest with her and tell her right away that you have no intention to ever have vaginal birth and that you are seeking counselling because you want to feel better now in your life. Tell her that if she tries to talk to you out of ELCS, she should rather suggest a different counsellor because there is no chance you could ever change your mind about it.

Margerykemp Tue 07-Aug-12 12:17:16

Just save up to have a private c section just in case you can't get one on the nhs, but tvh with a history of sexual abuse I can't see you being refused. When talking to professionals I'd focus in this as the reason rather than the risk of fistulas etc.

WantsToBeFree Tue 07-Aug-12 12:32:51

The idea of a savings fund is really helping me to be positive and feel more in control. It's worth it to shop less and save up for the future grin

RalucaV, I did try to subtly point it out to her that I'm not going to change my mind but since we were out of time I don't think it registered. I'll make it clear at the next appointment. I'm currently not in the UK by the way so this isn't an NHS counsellor.

Conflugenglugen Tue 07-Aug-12 12:52:18

sgb - with you all the way. I am coming to my own realisation that I really don't want to control another person's desires, actions, feelings. Why should anyone be expected to stay with me forever? That is working on the assumption that they shouldn't change, and what they want from life shouldn't change, imo.

Change is inevitable; all relationships end one way or another. I would prefer to enjoy them and value them for what they are, however long they last.

Conflugenglugen Tue 07-Aug-12 12:53:55

oh, crap - sorry!

wrong thread blush

lovepigeon Thu 09-Aug-12 20:59:43

Hi I had similar feelings to you and as the NHS trust that I live in was very anti CS I paid privately to have it done. I needed that control and couldn't bare having to beg unsympathetic HCPs and even then not have a guarantee (eg what if I went into labour early - would they then still give me a CS).

I had heard private CSs in the UK were 10k minimum so looked into having it done abroad but in the end the hospital where my parents live (in West Kent) does private CSs for 6k. I know this is a lot of money but I'm quite minimalist in other ways (for example I rarely drink, buy clothes, £50 wedding dress, don't drive) and had been saving half my salary for a while.

I had a lovely birth - it was really amazing and I loved getting to meet my baby girl. I couldn't belive how easy it all was and pain free also (most painful thing about having a baby for me was the cracked nipples). Not that fear of pain was my reason for having an ELCS - I'm actually really good with pain but like you was terrified of potentially being left very badly torn or incontinent or forceps delivery. I was worried that a vaginal birth might leave me with issues bonding with the baby.

As suggested I think you should save up a CS fund so that you don't have to worry about this. It would be such a shame for this to put you off having children if that is what you want. And then if you didn't have to pay privately to have it there is no harm in having savings.

Also IME male doctors were much less judgemental about my decision - pretty much every female doctor, nurse or midwife made horrible sarcastic comments about my choice whereas the male doctors were really sympathetic and nice.

I'm actually a medical statistician and the likelihood of something bad happening is a lot higher then they would have you believe. The RCOG website itself states that around 8% of women have severe (3rd or 4th degree) tearing:
www.rcog.org.uk/womens-health/clinical-guidance/third-or-fourth-degree-tear-during-childbirth

I'm happy to answer any questions you might have.

elizaregina Thu 09-Aug-12 21:06:59

I'm actually a medical statistician and the likelihood of something bad happening is a lot higher then they would have you believe.

Oooh is this for elc or VB? Thanks for your reassuring post as well!

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