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help with tokophobia in London

(20 Posts)
imelda7184 Thu 27-Nov-14 15:06:16

Is there anyone out there who can help me? I have major issues. Severe. I am nearly 38. I am running out of time. We want to try but I can't. I cannot do this alone and I cannot ignore this any longer. Is there anyone here who has had treatment in London? Where? With who? Did it help? Where you taken seriously? Or laughed at and told "you'll forget the experience once the baby is in your arms"? The pregancy - that alien thing in you is just the start of it. How do you get your head round that? Letaone the horrors at the end.

I'm not intrested in hokum / alternative therapys or lectures that I'll "breathe through it". If that's the best that can be offered then I suppose any thought of a child of my own is shot.

What I am really reaching out for is someone out there, a woman like me who was where I am now. Are you there? Do you exist? Did you come through on the other side? Are you still sane? Did you sort yourself out to get to the point where you could have a child?

And if so - how did you get there? I'd love to hear from you.

Peaceloveandbiscuits Thu 27-Nov-14 15:46:20

I don't have tokophobia, but I haven't enjoyed being pregnant, and the thought of having something growing and moving around inside me has been difficult to feel comfortable with. The hormones at the beginning also sent my MH issues into overdrive. Are you currently medicated for your anxiety? If not then I think that's your first port of call. Good luck.

HennaFlare Thu 27-Nov-14 16:00:23

Yes. An accidental pregnancy took things out of my hands. I was terrified. Cried every time I was asked when was due, cried through the baby shower my friends threw to try and support me. It was bad. I was very ill when pregnant and had an elective section because I was a mess. PND after the birth. But 6 months on, I felt so powerful to have got through the whole thing I did it again by choice! And again. After 3 sections I can't have any more. I'd be lying if I said I wasn't frightened the 3rd time but it was "normal" fear. The first one was not. However, my fear levels didn't alter the reality. Which was that we made it. I don't think I could have laboured tho. The section was very controlled and regimented. I hope you find the support you need. I would have never known or believed that I could manage a pregnancy and section. I don't know what would have happened if we hadnt been careless!!

imelda7184 Thu 27-Nov-14 16:02:31

Firstly and I do mean this - thank you for posting.

To answer your question, no I'm not (on medication). Up to this point only husband and a very select couple of girlfriends are aware of my issues.

Plus I am sh*t scared of diagnosis and ending up on horrific medication that completely makes things worse. Or being sectioned. I'm not convinced that popping pills is the answer. I'd really rather talk to someone and (god this sounds harsh) a woman at that. What would a man know about pregnancy and childbirth?

LeaveMyVagAlone Thu 27-Nov-14 17:07:50

Hello OP! I'm due to give birth in January and have tokophobia. I have a first appointment about ittomorrow.

My fears are around vaginal exams, loss of control of the situation, being forced into an iinstrumental birth and consequently suffering injury and becoming mentally ill as a result.

I'm planning to request a c section.

RedToothBrush Sat 29-Nov-14 15:35:40

Not in London, but have been down this road. I was treated with the best empathy and care possible. I never took medication. I was taken seriously and understood. Ironically it was a male midwife who was my best advocate, so don't be too dismissive of men. I found that he was great because he had been forced to listen to women because he was a man, so he took fear very seriously.

I found a hospital near where I live - it wasn't the closest hospital - which seemed to have experience dealing with similar cases. I found out they had by pure luck (interview someone did in newspaper); its generally not easy to find out this information. What you can find out is how much peri-natal mental health support they have. No all hospitals have a dedicated team, so choosing a hospital which has a dedicated team is half the battle as you are far more likely to come across staff with expertise in the area.

I also got my local GP on board. At first she was clueless and didn't know what to do with me as there are no care pathways for women in this situation. However she was supportive and said if I could find out where help was, she would support me. It was her who got me referred to this hospital.

At my referral I saw a male midwife who understood the issue and took me seriously. He recognised my issues and said that under the circumstances he felt I had a clinical need for an ELCS due to severe anxiety. This is BEFORE I started TTC. It was a huge weight off my shoulders.

I fell pregnant very quickly after this, and as assured everything went very well during my pregnancy. I was given extra ante-natal appointments with the peri-natal support team which was more about talking about how I was feeling and trying to help me feel comfortable with the situation. It also helped build up trust with the hospital which was invaluable in breaking the cycle of mistrust I had which went beyond my fear of giving birth.

However I do need to stress this. One of the reasons I was happy at the hospital I was, was because they supported women rather than were pro-ELCS. I was aware that many women in similar situations that they work with, even up choosing to have a VB because the support and the trust they received made them feel very differently about it all. Even though I did have an ELCS, I do feel that this was the key to my success and that some women would be better off changing their minds. There was no pressure at all on me during the process; it was all about what was right for me as an individual.

I think breaking your fear apart into lots of different bits makes it much easier to deal with and cope too. Writing everything down - and I mean everything - including your fears over being sectioned etc. It helps you to understand it, express it and discuss it with others. You need to be mindful that your anxieties over this may be part of a bigger issue in your life that isn't going to begin and end with having a baby, so 'just' having an ELCS may not be the solution you need. Some sort of counselling or support is appropriate and you should accept something for that reason.

I understand I managed to access the services I needed relatively easily and it can be very difficult to do so, with the emphasis being on you to find it to a large degree, but they do exist even if they aren't as widespread as they should be and women in this situation are often treated badly and misunderstood. However I did want to stress that its possible and that it can be a positive thing. You just have to take the plunge and start looking for the help you need and as soon as you can if you are already 38. I think in some ways that one of the scariest steps there is to take. Once you do, you won't look back.

My son is 3 months old now. He is wonderful. It can be done.

imelda7184 Tue 02-Dec-14 09:14:43

To RedToothBrush - my god thank you for your response.

I'm very very wary of seeking help - its mad but I have a huge fear of just being seen as a nut and taken away by "the men in the white van".

But your experience seems very positive and your comment that your "GP was clueless" made me laugh out loud as that's exactly what I thought would happen if I rocked into my local GP and asked for help.

There's a huge swathe of issues tied up with this fear of pain, fear of pain not being taken seriously (ie asking for relief and being refused / mocked etc) along with the idea of being examined, violated with instruments, cut / stitched etc. The idea of having things happen to me without my consent. Even just having so many bloody people around.

They wouldn't take out an appendix when you're awake so I just wish I could be knocked out (a general) and come too later on having not seen / heard / remembered any of it.

Christ even just the idea of being naked from the waist down in front of others makes me feel quite sick. I'm a very private person. I'm 100% comfortable being naked in front of my hubby, but nobody else. And that took a few years.

I also have issues with having my hubby present at any kind of birth or procedure. I told him I'd really rather not - I don't want him to see me like that - screaming / crying / in pain / the blood / being all ripped apart. He'd never look at me the same way again.

He got where I was coming from but was deeply offended and hurt at the thought of not being a part of it. I wish he could be more old school (1950's husband) about it and just wait at the pub for a phone call but he feels strongly that he wants to be present. Another battle.....

Every single guy that I've discussed it with (I work in a v. male industry lots of blokes around), those that witnessed their wife give birth was horrified by the experience. Many were put off their wife as a result (sexually). Every single one said they wished they didn't have to be there.

My perfect scenario would bit a CS under a general. Honestly. I'd like to just pass out and not bear witness to any of it.

I doubt I'd convince the NHS or even a private hospital to do it. I'd pay for that if I could. Happily pay actually.

imelda7184 Tue 02-Dec-14 09:15:39

Leavemyvagalone - thank you for your response. I'd be very interested to hear how you get on re: requesting a CS. Are you in London?

RedToothBrush Tue 02-Dec-14 09:28:20

Imelda. I was OFFERED a general if I thought I couldn't cope due to the level of my anxiety. In the end I opted for a spinal as the thought of things happening when I was asleep was worse to me.

The thing is, regardless of whether you do end up going and getting pregnant, you should go and try and find some sort of help, because you may find yourself in a situation where you need your another operation and you have similar fears.

At the end of the day, your GP might be clueless with regard to the childbirth aspect of how you are feeling, BUT they should at least take a professional approach to you asking for help with severe anxiety. An ELCS may come as part of that. If you take that approach about anxiety, you are less likely to come up against judgmental HCPs.

My GP was wonderful despite her lack of knowledge in the area. Just supporting me was a step forward.

Take the 'eating the elephant' approach to it. Small bite by small bite. Don't try and tackle your fear all in one go. Break it into chunks and start dealing with it piece by piece.

LeaveMyVagAlone Wed 03-Dec-14 12:33:00

Hello! I had my first appointment on Friday - although she seemed to get where I was coming from, and is happy to speak to my midwife supporting my request for a c section, how far things go after that I don't know. I have a 34 week appointment tomorrow, so I''ll ask then as well.
My fears are broadly similar to yours, so hopefully anything I manage to get sorted will help you as well. I'm sadly not in London.

imelda7184 Wed 03-Dec-14 15:04:01

I have looked and found that St. Thomas's hospital in London does have a perinatal mental health service / dept. Location wise, this is perfect for me as I live not to far away.

The woman on the phone advised that a referral from my GP and / or a mental health unit would be required. Particuarly if you're not pregnant (she didn't state it in as many words but I got the distinct impression they really only want to take on women who are ALREADY pregnant with mental health issues and / or booked in to deliver at their hospital).

Whilst I get that idea (we don't want to see you till you're actually going to have a baby) - I am not willing to even try to become pregnant until I have some discussions with someone about my issues.

I have much to discuss with my man in the next few days.

To those of you who have advised me and shared thank you.

I will update this again when I have more to report.

RedToothBrush Wed 03-Dec-14 16:10:46

Imelda, that in itself is a big step forward whether you realise it now or not.

They may be unwilling to see women who aren't yet pregnant and to a degree I understand why because services of this nature are already so over stretched for women who are pregnant and are therefore obviously more of a priority. But you know they exist now and you know that with a referral it is possible for you to access them in the future.

I would try and speak to your GP. They may not refer you to St Thomas (in part for the reason above) but they may refer you to a mental health unit in the meantime. Even if they are 'a bit of an arse' getting it on your notes that you have tried to look for help of this nature now, is a good thing. It does not mark you as being 'loopy', it shows you are trying to resolve your issues in a proactive manner and want to engage with their services. It shows you realise you have issues you want to resolve. It does not oblige you take medication or necessarily commit to counselling. In short, it establishes that there is an issue here.

Even if you have the impression, they don't normally see non-pregnant women, it doesn't mean they won't. Being in the system, makes it easier for you to find out your options, services available and the likihood of getting an ELCS. If it does come to the fact that they won't agree to an ELCS in principle unless you get pregnant, you are building a case for yourself, will know the system (and any hoops you'll need to navigate), know your chances of getting an ELCS better, and hopefully fought some battles already.

You do need to be prepared for a few brick walls and blank stares (at best). Like I say, my GP was a bit useless at first and I had letters go missing, but I found a way in the end. The problem is the lack of a care pathway for non pregnant would be first time mothers. Given that this fear is acknowledged and recognised in NICE guidance, this is a failing of the system not you.

Remember its all about taking steps forward, one step at a time. No matter how small, or if you have to take a detour along the way.

One of the biggest I took, was realising I was more normal than I thought. As my lovely consultant midwife put it "You aren't the first women in this situation I've met, and you won't be the last. Anxiety and fear of birth is normal, and covers a wide spectrum. Its just that you happen to be at the far extreme end of that spectrum".

You have a health issue that is preventing you from getting pregnant. If it was physical you'd seek help with it, so why is it less legitimate if its a mental health issue.

I think that one of the hardest things other people find difficult to understand with the whole thing is that if you have this type of anxiety they assume that you haven't the same desire for a baby. Its simply not true. You just have a big hurdle in the way to navigate if you want that in the end.

friendlymum67 Wed 03-Dec-14 21:17:17

Imelda, I had to reply to your post. Even tho I am a mum of two now, I completely understand your fears, I was very similar in my early/late 20's, to the point where I when was once advised to do a pregnancy test, I cried and cried, the thought of being pregnant terrified me!!

There was no magic cure, in my case as I 'matured' and then hit a milestone birthday I suddenly found my maternal instinct kicking in. That is not to say my fears left me. Like you I am a private person and the thought of being seen in such an intimate way by 'strangers' horrified me.

The point of this being that waiting for your maternal instinct to kick in isn't always an option, you know you want children which is more than I did! Have you considered seeing a counsellor that specialises in pregnancy fears etc - I know of at least one in the South East London area, who is also a qualified midwife.

Annietheacrobat Wed 03-Dec-14 21:36:13

I have no personal experience of St Thomas' but I had my first daughter at King's and had excellent support from the perinatal psychiatry team there. I was referred with antenatal anxiety and depression. Kings and St Thomas' are now all part of the same trust and so it may be that you would be referred to the same department.

A colleague of mine recently had an elective section at St Thomas' because of tokophobia. They weren't overly resistant . I had my second daughter outside of London and didn't have to fight to hard for a section either.

imelda7184 Thu 04-Dec-14 14:50:17

To FreindlyMum67

Thank you for your post. Are you able to provide a weblink or contact details for the counsellor you refer too?

New to mumsnet so not quite sure how this works but are you able to msg me privately with the info if you're not comfortable putting up here for the world to see?

imelda7184 Thu 04-Dec-14 14:53:36

to Annietheacrobat - with psychiartry support you received, I take it you went to them when you were already pregnant?

They way you posted "first daughter" makes me think you have since had another child / more children? Which also makes me think you must have had good support and moved on from your fears.

A comforting thought.

Ambellina79 Sun 07-Dec-14 21:42:10

Hi Imelda,

You are most definitely not alone. I've always known that the idea of a 'natural' delivery terrified me (for many of the same reasons you explain in your posts) but in recent years the anxiety and panic became overwhelming as I realised I was going to run out of time to have a baby if I didn't take action (I was 32). In the end my partner encouraged me to find a private counsellor as my panic was so bad I couldn't sleep properly and we weren't even TTC at that point.

I have seen my counsellor every week since then (I'm now 35) and speaking with her has made a big difference. I am now 34 weeks pregnant and without the counselling I'm quite sure I wouldn't have been able to try for this baby. It also helped with my thoughts regarding the 'parasitic' nature of pregnancy and although I'm still not enthusiastic about feeling the baby's movements I am able to view them as positive steps towards getting the baby I desperately want and a sign that he is ok.

The majority of the NHS staff I have spoken to have been very understanding of my anxiety and fears although it has still taken several months to get the support I need in place. All through I decided to be honest with the midwives, consultants and everyone involved. This means I have literally sobbed my way through every single appointment but I figure that unless they can see the problems I'm facing they won't realise how much help I need. Nobody has suggested that I'm abnormal or crazy and in general they've looked for practical solutions and options. I have to admit that they all talk about calm breathing, hypnobirthing and relaxation techniques which I know won't suit me. The approach that has worked for me is to go away and research their suggestions. Then at the next appointment I have explained my findings and why it doesn't seem like a solution for me - every member of staff has then accepted my opinion and tried to explore other options with me.

My community midwife has been fantastic and I am now at the stage where my hospital has agreed to an ELCS under a general anaesthetic. She is also working on a care plan that takes into account my issues with the post-cs painkillers, catheter, sharing a bathroom with strangers after the birth and other concerns.

I am still terrified of the process of getting this baby out but I really do feel that they are going to work with me to help. My GP has also referred me to a psychologist to help deal with the underlying situation and thought processes.

Before getting pregnant it would have really helped me to know that I wasn't alone but there were always so many posts who just said nerves are normal, breath right and you'll be fine or you'll forget it all once labour hormones kick in. I knew this wasn't the case for me and started to feel that there must be something seriously wrong with me and my thoughts. I hope that adding my experience onto this thread helps reassure you that there are definitely others of us out there facing similar challenges.

LeaveMyVagAlone Thu 11-Dec-14 19:10:10

Hi Imelda, I had my c section agreed yesterday - back just after Xmas to book a date. Nothing like as scary as I'd expected, and they were happy to agree to it on the grounds I'd seen MH staff to try to resolve it, and my reluctance to have further children!

friendlymum67 Fri 12-Dec-14 22:35:46

Imelda - sorry for delay, have Pm'd you

RedToothBrush Thu 18-Dec-14 15:27:38

Imelda, I'm still reading through them in detail but yesterday NICE released updated guidelines regarding mental health in pregnancy, with the intention of addressing some of the existing gaps. They are good news for you. They acknowledge that many mental health issues go unrecognised and under diagnosed. They name tokophobia by name for the first time I believe and they are written to fit along side the existing NICE guidelines for CS.

The key part is the fact that they are starting to finally construct care path ways for women who are not pregnant.

To read more have a look here. There is a link to the guidelines in full on that page if you want to read the whole lot. (Otherwise google NICE CG192 and you'll find it. It might be worth knowing the NICE guidance number anyway, if you need to direct your GP to it at some point in the future, if you can't get access to the services you need without a referral from your GP).

I've listed a few selected points for you here though, which I think are relevant to your case.

1.2 Considerations for women of childbearing potential
1.2.1 Discuss with all women of childbearing potential who have a new, existing or past mental health problem:
the use of contraception and any plans for a pregnancy
how pregnancy and childbirth might affect a mental health problem, including the risk of relapse
how a mental health problem and its treatment might affect the woman, the fetus and baby
how a mental health problem and its treatment might affect parenting. [new2014]

1.4.2 Consider referring a woman to a secondary mental health service (preferably a specialist perinatal mental health service) for preconception counselling if she has a current or past severe mental health problem and is planning a pregnancy.[new2014]

1.4.7 When discussing likely benefits and risks of treatment with the woman and, if she agrees, her partner, family or carer:
acknowledge the woman's central role in reaching a decision about her treatment and that the role of the professional is to inform that decision with balanced and up-to-date information and advice

1.5.1 Recognise that women who have a mental health problem (or are worried that they might have) may be:
unwilling to disclose or discuss their problem because of fear of stigma, negative perceptions of them as a mother or fear that their baby might be taken into care
reluctant to engage, or have difficulty in engaging, in treatment because of avoidance associated with their mental health problem or dependence on alcohol or drugs.[new2014]

1.5.3 Recognise that the range and prevalence of anxiety disorders (including generalised anxiety disorder, obsessive-compulsive disorder, panic disorder, phobias, post-traumatic stress disorder and social anxiety disorder) and depression are under-recognised throughout pregnancy and the postnatal period. [new2014]

1.8.7 For a woman with tokophobia (an extreme fear of childbirth), offer an opportunity to discuss her fears with a healthcare professional with expertise in providing perinatal mental health support in line with section 1.2.9 of the guideline on caesarean section (NICE guideline CG132). [new2014]

In short, everything you need to get ultimately is now set out in NICE guidelines. Although HCP are under no obligation to follow the guidelines, it does provide you with a clear protocol, and argument to push to get access to the services that can help you.

I'm personally over the moon about this, as I've read a few similar posts to yours in the past, and I know what my own experience was like. I can now point people in the right direction and say, 'look NICE understand and you are covered in their recommendations' and hopefully this will improve things for so many women out there who feel like they are somehow freaks or won't have their fears taken seriously. Even if you do come across hostile doctors and midwives who are not aware of the issue, you can still take reassurance that its their failings not yours that are to blame.

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