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Tokophobia, have you told your gp?(31 Posts)
Is there anyone on here who has, or thinks they may, tokophobia? I would love to have children but I have a deep fear of childbirth. Every time it was on TV, films or featured in books I would feel hot, sick and shaky. I regularly wake up in the middle of the night and spend hours worrying about it. Over time I have become a little more accustomed to pregnancy and birth by forcing myself to look at images, starting off with mild diagrams and can now look at photos without becoming too uncomfortable, however this has taken me 15 years of hard work. 10 years ago I had an unexpected pregnancy and despite desperately wanting to keep my baby I felt I had no other option but to have an abortion due only to my fear. I did mention my reason at the abortion clinic appointments but they were brushed over by the nurses as "everyone gets scared but you'd be fine" and so with no support I went ahead with the abortion. Something which I regret to this day. I'm now 30 and would really like to start a family, but no matter how hard I try I cannot get over this fear alone. As part of my research I have found some nhs guidelines (nice) which state that if a lady really wants a caesarian section she should be offered support and help, but ultimately it would be her choice. I know some of you will probably feel this is the wrong choice as it's a major operation and carries significant risk. I am fully aware of, and understand this. However it is the only way I can ever envisage being able to mentally cope with pregnancy and birth. I have researched people who have opted to have an nhs caesarian on the Internet and seem to be getting quite mixed stories, including those who have been refused whilst heavily preganat. Has anyone on here been in a similar situation? Were you able to get agreement before you became pregnant? Waiting until already pregnant really isn't an option for me as c section is the only way I could allow a pregnancy to progress and I really don't want another of my babies to suffer being aborted. Was your gp understanding? What about family and friends? The few people I've trusted enough to share this with really haven't understood. How did your partner feel about it? I would really appreciate any answers, feeling really alone at the moment.
Hi op I'm so sorry about what you've been through. It's awful that this was brushed aside by your care providers before the abortion. Yes tokophobia is a real thing and a mental health issue is just as real as a physical health issue in requesting a c section. I have had a c section due to the same thing, even though my phobia does not sound as bad as yours.
Yes my GP was very understanding and it was down to her that I got it approved, although the consultant initially refused the decision was reversed due to the intervention of my GP (agreed at 34 week which is pretty late in the day when you are very stressed about it). I think you should go to your GP before you start trying and explain your situation. I have heard it is possible to get c section agreed in principle before you are pregnant but I've not had first had experience of this. I would recommend writing down some of your reasons if you find it hard to get across or you get emotional when talking about it as i did. They need to understand the full extent of your problem and how much this is affecting you. You will find some people 'get it' and others don't. Personally I have chosen to tell very few friends/family of the reason behind my c section as I did not want their judgement or to have to explain my reasoning. My DH obviously knew and was very supportive as well as a few close friends- a couple of whom have also had c sections approved for maternal request (two of whom are doctors incidentally).
You may be referred to perinatal mental health team for counselling which may or may not be helpful- it may be something you have to go through to get c section approved or you may actually find it helps you.
You will need to show that you have done all your research and are aware of risks of c section. You will find all the stats are based on emergency c section or planned for medical reason ie. Where risks are already increased in most cases. The risks for a mum and baby who are both fit and healthy are decreased, and are mainly those associated with any surgery. Fwiw I found the whole experience brilliant in the end and I couldn't be happier with my decision. It was relaxed, stress free and I recovered very quickly.
Some consultants are more understanding than others. What area are you in and I may have some recommendations?
Good luck op. This should not prevent you having children. Your fear is real and should be taken seriously. A c section is a valid birth choice for someone who is well informed of all options and risks.
Mimiholls, thankyou so much for replying. It has literally just made me cry, it feels such a relief that someone finally understands. So thankyou. I'm in East Sussex.
I'm glad it was helpful. I don't know that area but you should be able to get this approved at any hospital given your situation to be fair. If a certain consultant won't agree to it you can ask to be referred to a different consultant or even a different hospital. I would say visit your GP as first point of call. Please don't be put off if they are not understanding at first- I came across multiple health care professionals before my decision was made and there was a real mixture of very lovely understanding people and others who just didn't understand. Though on the same note I know people who have been approved very quickly. You could ask to see a different GP if you don't get anywhere with yours. Other than that I'm not sure what to suggest until you're actually pregnant. If you were pregnant, your midwife will refer you to supervisor of midwives/ consultant midwife at your hospital (make sure to push for this at your first appointment) and you will have a consultation with them to go through your reasons before being referred to a consultant. I honestly don't think you'd have a problem getting this agreed if they properly understand your situation.
I had a c section with the NHS because of tokophobia. My experience could not have been more positive. i was referred to a consultant at my first midwife appointment (they could tell I was nervous about my appointment and I eventually managed to say why). About one month later I had an appointment with a consultant at the hospital. After 10 mins of discussing my anxieties with his colleague, the main consultant said that he was happy to perform a c section. I was provisionally booked in there and then. So, I had a date for the operation within, I would say, two and a half months of being pregnant. i had to attend the hospital a month or so later to meet with the clinical lead midwife. i was fairly nervous about this appointment as I thought she would try to change my mind. I could not have been more wrong and she was brilliant. she went through the 'pros and cons' of both options. at one point i became upset, when i told her i had not told my mum or sister about having a c section booked, i remember saying how ashamed i felt, as i could not do what women are meant to be able to do. her response was that i have the right to chose what happens to my body and that i should tell them of my decision and not feel ashamed. at 40 weeks exactly, my beautiful baby girl was born via c section, in what was described as a text book birth. the care i received in hospital was brilliant - at no point did i feel i was judged by anyone. i was a new mother who had given birth - just like the other women on the ward. i stayed in hospital for two days and my recovery was swift and without setback. throughout all of this, and even before getting pregnant, my husband was completely supportive and only wanted me and the baby to be happy and healthy. you mention NICE, their guidelines do state that if you want a c section you should have one but they only ask that you make an informed decision, hence my visit to the clinical midwife. the Royal College of Midwives also had some info on elective c sections - google and have a read. If a consultant refuses you have the right to request another appointment with a different consultant and to continue seeing others until you are accepted. How you give birth will not determine how good a mother you will be - don't let anyone make you feel otherwise. Otherwise, finances allowing, consider a private c section. Do not feel ashamed - you want to create a life and love and care for that child. You should be supported to be able to do so. Good luck
Hi op I recently had an elective section due to mild tokophobia and some other health issues
You're not alone
I'm so sorry for what you went through, you were treated dreadfully
Hi - another elective section due in part to tokophobia and also historic sexual abuse. I started worrying about giving birth from about 9 when my mum properly talked to me about it. I was petrified. I can't even use tampons.
When I fell pregnant I was referred and sadly consultant didn't listen despite midwife being supportive. She gave me some leaflets about vaginal birth and sent me packing. I couldn't hold myself together anymore and had a panic attack in the hospital. Needless to say I had a home visit from the head midwife a week later and the consultant agreed straight away based on her recommendation. I just wish I could have got my message across factually and with dignity. I very nearly pissed myself with fear when the consultant brushed me off. I had always told DH I'd have to have an abortion if they wouldn't let me have a section.
DD's birth was as good as it could have been having major surgery.
You are not alone. I posted about this recently and got some brilliant advice. Good luck!
Thankyou to each of you for your replies, it's wonderful to hear some positive 'stories' and I'm truly pleased that all of yours ended in a way that was right for you. Well I've decided that once my doctors surgery reopens-Wednesday I believe-I'm going to brave it and make an appointment. Hopefully if it's on my records then if and when the time does come it'll make things quicker and easier. And if my gp is not understanding then I'll be a blubbering message, but in now worse a situation than I am now. Thankyou and happy need year to all of you x
Or a blubbering mess of course!
Is there anyone on here who has, or thinks they may, tokophobia?
Yes I had. There are a number of women on MN who consider themselves to have primary or secondary tokophobia even if they have not had a formal diagnosis.
As a rule this section of MN is very supportive of women who find themselves in this situation. You are definitely NOT alone. There are a number of posters who regularly post on the subject and try and offer a degree of support by just making the point that it is more common than you think.
The subject is generally still taboo in many places which is part of the problem. MN is NOT one of them.
As part of my research I have found some nhs guidelines (nice) which state that if a lady really wants a caesarian section she should be offered support and help, but ultimately it would be her choice.
The guidelines are a big help but they are still problematic as not all hospitals follow the guidelines. You do not have a 'RIGHT' to an ELCS. It is however, worth pointing out that you do however have a right to healthcare treatment most appropriate to your medical needs. This means if you are diagnosed as having tokophobia you can argue the case that an ELCS is the more appropriate course of action for your medical needs - therefore you have a right to it.
There are a lot of politics to get your head around with the subject if you are determined and really want to have a baby.
I know some of you will probably feel this is the wrong choice as it's a major operation and carries significant risk. I am fully aware of, and understand this. However it is the only way I can ever envisage being able to mentally cope with pregnancy and birth.
STOP RIGHT THERE. You do not have to justify yourself to anyone. Mental health IS health. Would you justify having your leg put in plaster if you broke it? If you wouldn't then don't do it for this. Change your attitude, as you have a genuine issue and a genuine reason to seek medical help and attention. As I said before, there are lots of people in this section of MN who understand this and are supportive (This is not necessarily the case elsewhere on MN, but here there is a good understanding of the issues).
I have researched people who have opted to have an nhs caesarian on the Internet and seem to be getting quite mixed stories, including those who have been refused whilst heavily preganat. Has anyone on here been in a similar situation?
I have been lurking on these threads for at least 8 years now. (Yikes!) NHS policy on ELCS for mental health is extremely patchy and inconsistent. It is a complete postcode lottery really. Some places have very little (or no) mental health support for this, others are much better. One hospital can effectively have a 'blanket ban' in place whilst the next will let you have an ELCS without any problem what so ever. It is not always easy to identify which is which, but it is possible. This can be half the battle.
Were you able to get agreement before you became pregnant?
YES! I did. I went to my GP before becoming pregnancy and was able to be referred to someone who could help (My GP didn't know what to do with me, but I had been able to identity a specialist and she was happy to refer me after I gave her the details).
I was told I could have self referred, direct to a specialist or I could go through the GP (which is what I did). It CAN be difficult to get a referral simply because services are limited, and too far and few between and heavily oversubscribed as a result with priority given (naturally and rightfully) to women who are already pregnant. But you DO still have a genuine reason to get access to these services. Anyone who tells you, you have to be pregnant is NOT right.
Access to appropriate mental health services should be available to all women of childbearing age. Keep this in mind at all times.
Was your gp understanding?
Yes very. Not all are, but awareness of the subject is much better than it was. If they aren't, you may still be able to go through the self-referral route or approach another GP.
What about family and friends? The few people I've trusted enough to share this with really haven't understood.
I think its hard to talk about, especially if you have friends who don't know much about the subject. For me, it took some years, and learning how to talk about it in a way which explained it as a mental health issue rather than being 'too posh to push' or something that you just somehow get over as part of being pregnant. How you frame your situation helps how others respond to you.
There is also no obligation to tell anyone. Its not their business. If you are worried about how others will react you can always say that you have discussed your medical problems with your doctor and you both agree that under the circumstances which are complex, that having an ELCS might be the best option for you and the baby. It makes it difficult for others to stick their oar in then.
However in the end, the majority of my friends all know now, and have been extremely supportive and understanding, especially since a couple have subsequently had difficult births themselves and have struggled with the prospect of having a second baby.
How did your partner feel about it?
With him I'd have been lost. He was brilliant. Having a supportive partner is important and a good ally to have if you do face obstacles to getting the support you need. A supportive partner, who 'gets' it, is your best asset.
In posting this, you may have just taken your first steps forward on a long journey. Please keep in mind this can be a bumping road at times and it takes time to go through the process and find the right way for you. There is no one right way to do this - only the right way for you.
What other people take for granted, is not as straightforward for others. This is NORMAL. Anxiety over childbirth is a spectrum, with normal being both ends of the spectrum for fear and no fear and everything in between. You just happen to be at the more extreme end which means you need more support than the average woman.
Fear of Childbirth is something that has existed, probably as long as women have given birth. There are historical references to it, which are not about the physical risks of giving birth of the past but about the mental aspects of it. Don't let anyone tell you different or give your the crap of 'women having been giving birth for thousands of years' shit. It misses the point that this is 2017 and how health care has progressed and recognises how important mental health is in addition to physical health.
Things have changed a lot since the NICE guidelines were last updated in 2011, and there is a lot less ignorance on the subject but it is still not treated and as well understood as it should be.
There are a number of hospitals that have conducted research into the subject in recent years which had never been done in this country prior to 2011. I know of one that is currently on going at present. So despite the problems the situation is a lot more positive than it has been in the past.
Just keep thinking that this is about your mental health and your need - and right - to have support with that. How you actually give birth in the end is actually secondary to that need. Indeed, with the right support it is not inevitable that you will want an ELCS afterall, as inconceivable as that might sound now. There are women that do change their mind, as they have managed to build a trust with their HCPs to a level where they feel they can have a VB afterall. Having an ELCS agreed in principle ahead of getting pregnant was a safety net and a stepping stone to building that trust.This did not happen to me; but I do recognise that the support my hospital gave me was so good that other women might feel confident enough to change their minds.
As I say, there is no 'right way' to do this. Only your way.
Good luck. I hope it works out for you.
Thanks red tooth brush, for your reply, all of this is really helping, I keep thinking through all of my reasons and I'm going to write them down to take with me, as suggested by yourselves. We'll ago appointment is booked for Friday 13th, not sure that's actually the best omen!!!
Great good luck! Let us know how it goes.
Writing it down is a good start. It helps clarify what you need to tackle one way or another. It means that whoever sees you needs to come up with an answer. Saying they can't help isn't good enough. They need to do something.
You might well get some bumps along the way on this, and things might not go the way you imagine right now so don't take a potential set back as the end of the road.
I had an elective section for my first and now my second (8months pregnant) due to fear of birth/examinations/instruments and not had any issues getting them, it's a completely valid reason! Good luck OP
If you can, do look at your local hospital(s) website. Mine was quite clear that if you requested a c section they considered tokophobia a valid reason. They did want you to see a vbac specialist midwife to discuss your choice. At my first appointment with her she agreed that I could have a c Section.
I have this, albeit not quite as severely. I also have a phobia of needles. I mentioned an elective at booking in, and was able to discuss it with the consultant at 12 weeks who agreed it on the spot as she could see how distresed I was. I do have to see a psychologist, but that's helpful with my phobias anyway.
Thankyou for all of your replies, it really helps so mucj to hear there are others who feel like me, also that you have been able to receive help.
Well I went to my gp his morning. He was pretty sympathetic and said it's something he had heard about back in medical school 20 years ago, but couldn't remember the name of :-) he has suggested I speak to someone, however it's phone consultations, not sure how that will work, sounds pretty impersonal, but I'm going to try it. Said he can't refer me to an obstetrician unless I was actually pregnant and didn't really seem to grasp that this won't happen! Offered me antidepressants too and said I could continue to take these while pregnant. I've declined, I don't feel they would help. Has anyone else been offered/tried medications? He said pregnancy hormones are designed to make you feel different about giving birth. I just don't feel this can be true, or why would so many of us feel this way! So although he was sympathetic, I don't feel he really had the knowledge to understand how I'm feeling.
Hopelessly devoted to gu- thankyou for the advice, I tried looking on my local hospitals website for some information, unfortunately all I could find about elcs 'was what to do the day' info. Then I tried my county's health care trust website, put tokophobia into the search box, came back with no results :-/
I do think it is very likely you will be able to have an NHS c section
It is supported by NICE guidance, and generally doctors will follow their guidance
Depending on your hospital policy, you may be offered it straight away, or have to argue your case
I appreciate that may not be reassuring enough for you to get pregnant
We decided that we would go private if we weren't offered an NHS section - around 12-15k in London - is that an option as a back up?
You could write to the hospital and ask to see their policy for tocophobia or maternal request Caesareans. Try writing to PALS (patient advice and liaison service)
I'm not sure if they will share their internal policies publicly, but it is certainly worth investigating
Obstetricians will generally follow the hospital policy
I hadn't even considered contacting the hospital directly for policies, that's a great idea, thankyou :-)
And no, unfortunately that's about my annual earnings, so wouldn't be something I could afford unless I saved for an extremely long time!
That's good he was sympathetic but yes does not sound like he has the experience in this area. I don't think you'll feel differently just because you're pregnant, I certainly didn't. Could you ask to talk to your community midwife? There is likely one at your GP surgery. She may well have experience of other women who have been in your situation and will work closely with the maternity unit at your hospital so may have better knowledge. Writing to your hospital to ask their policy for tokophobia is also a good idea.
I have the same problem and can only say you are not alone, im 33 and would love to have family but the fear of childbirth accompanies me from a very early age. Fortunately if you attend counselling early in the pregnancy you will be offered a c section, the problem is many women are embarassed to say they are tokophobic and leave it tonthe ladt minute. If you request it in say 8th month the NHS wont manage to fit you in for enough councelling sessions to officially confirm you have a phobia and they may pressurise you to have natural birth. This is why I am planning to request help now, before i am even pregnant. I sometimes wonder if the reason behing my fear of childbirth is the fact that my mum had me via c section and when i used to ask where children come from my mum would point and say from my tummy! when i finally found out that children are born via a womans vagina i was in deepest shock even as a child and I still dont seem to be able to shift it. I can just imagine how ridiculous that sounds. I have only recently at the ago of 33 watched a childbirth on you tube with my husband after he discovered I have never seen live birth, i never wanted to see one the stories were bad enough. Now the time came to start thinking about family i wake up in the middle of the night sweating, I cant remember last time i slept well. It has been constant anxiety for the last 12 months and the pressure is on as my husband would love a baby. I have nearly decided about having a c- section, the only thing that really worries me is the fact that a lot of women complain about migranes for months after c sections. If any of you can advise on the likelyhood of this side effect I would be grateful.
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