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Discussion Starter · #1 ·
hi everyone

I'm needing help and advice!!!!!!!!!
for those who dont know me which is probably quite a few as I only joind last week, I have been waiting to here babck from Guys hospital as to what treatment they recomend. my dx is that I have vaganismus so find sex very painfull and impossible.
Anyway heard back from hospital today, they have advised that I have IUI and that it would be best to try a natural cycle/cycles first. thing is and what I'm getting into a flap over is NHS waiting time is 18 months!!!!!!!!! wasn't expexting it to be so long. I know I'm only 22 and should be gtaratefull I have time n my side etc etc, and I am but at times, that is really of no comfort as I want to start a family now.
They have said that if I want to go private in the meantime it will cost £250 for natrual cycles which for us is quite alot of money, not sure what to do as have heard that if you go private you loose some of you nhs funding??? is this true??? also if we go private will it make our wait on the NHS longer????
we only have funding for 3 goes on the Nhs so am thinking that it would be better to fund the natural cycles ourselves at £250 and save funding  incase we need medication which costs from £500 a go!!!!!!
sorry if I've waffeled on so confused!!!!!! ^help^

happy new year to all Donna
 

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Donna

I am not sure about your question on going private, but I did read that if the new rule is introduced to offer everyone, one free go at IVF regardless of where they live, that you will only be entiltled if a new referel and not if you have ad previous treatment, not sure if this is correct but something I read, so its worth asking your clinic or primary health care trust, b4 you decide, unless anyone hear can answer you.

A natural cycle of IUI would be a good way to start and is normally much cheaper than a medicated cycle, we paid £500 a cycle excluding drugs.  So I think if you do decide to go private, you are best off starting with the non medicated and using your 3 goes on the NHS for the more expensive cycles, having said that you may get lucky first time, which would be fabulous.

It is hard to get your head round all this, but I wish you all the luck in the world with your decisiona nd tonnes of babydust

^fairydust^ ^fairydust^

Sims, you must be at the end of your 2ww now, really hope it was good news  ^reiki^ ^reiki^ your symptons with the cycolgest are very normal

Candy x
 

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Discussion Starter · #3 ·
candy,

Thank you for your reply, Dh and I have talked and talked and talked but it is really hard to come to a final decisicion!
Think we going to go private and save our funding for if/when we need more complicated expensive treatment.

going to ring hospital to make an appointment to discuss everything and hospital want to give me vaginal scan and check that they are able to insert a spectulum without causing me to much pain before we start anytreatment, so hope I wont have to wait to long for appointment.

just trying to find ways of saving every penny we can now which wont be easy but we have to do it!

thanks Donna

p.s if anyone else as any advice please post.
 

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Hello Donna,

I have vaginismus too! I've never seen a mention of it on here before.

We are trying to get NHS treatment but if we can't will go private. I made some enquiries at Guys and found they didn't really know anything about vag. or seem very keen to help. Perhaps it depends who you speak to. A lot of doctors and nurses don't seem to know much about it. Quite a few told me I should cure myself of the vag. and then come back. If only it was that simple! The London Fertility Centre do have experience of treating vag. patients and seemed very helpful on the phone, but they charge a small fortune!

I had a vaginal dilation operation at Luton and Dunstable in November (and a lap and dye at the same time), to see if that would help make sex easier, but it doesn't seem to have made a difference! I have a follow-up appointment in a couple of weeks, and will find out then if they will offer IUI on the NHS. If they don't we will go private.

In the meantime we are trying home artificial insemination (using a syringe, which I can insert a little way) as we figure there is nothing to lose.

Are you having treatment for the vag? I've just started psychosexual counselling after being on an NHS waiting list for nearly a year.

Good luck with everything,

Emma


 

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Welcome Emma, so glad you have posted as hopefully you can support each other.

Donna, u r right its a toughy decision wise, hopefully you can get an appointment to have the scan to check its not too painful for you (Fingser crossed) then once you know that you are suitable, you can take it from there, good luck.
 

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Discussion Starter · #6 ·
Emma,

Wow you dont know how happy I am to find some one in the same boat as me, as I sometimes feel that I am the only one! so glad to hear from!
I f you dont mind can I ask you a few questions, if I'm asking too much please don't be offended.

If you dont mind me asking how long have you had vag? have you ever had penetrative sex? I have never been able to do this.
Do you no what caused/triggered your vag?
How long have you been ttc?

My DH and I had pyscosexual councelling a few years ago we found it very helpfull but unfortunatly it didn't help us achieve our overall aim, but did help us in many ways so all the best for that! let me knoe how you find it.
we decided to stop with the councelling as it seemed that the aim to have full sex was taking over our lifes and there is so much more to our relationship than that. we are able to fully satisfy one another so it didn't seem that important at that time, until we wanted children!

we worked very closely with my family planning clinic, maybe this is something you could investigate as they have refered us to all the right people. I am currently having treatment for vag at Lewisham hosp, where I have been given a couple of small dilators to insert at home, however we have found that the best thing to use are vibrators, don't know if you would feel comfortable using them as it took me along time, but it is a way of including you partner and if you incorperate into you sexual activity it is alot easier as you produce more natural lubricate and the enjoyment kinda takes over (sorry if I'm being grafic!) Dilators are not that sexy!

I am having treatment myself at Guys so am suprised to hear that you didn't find them helpfull, I saw Dr Emma Sowerby who is part of the gyne team and she was very helpfull and as a result we are on the Nhs waiting list for IUI however this is 18 months so are thinking of going private ourselves.
I am going to make an appointment tomorrow to return to guys to discuss going private as it is a tricky decision to make and so they can perform a vaginal scan, and insert a spectulum to insure i'll be able to cope with it for treatment.

sorry think I'm waffeling on abit hope you didn't mind me asking you some questions if you want to ask me any please go ahead.

all the girls on here are very supportive but thinking and hoping we will be a greater support for one another as we are going through the same thing, for us it isn't a stright cut infertility case. (not that infertility is straight cut but you know what I mean)

hoping i've helped it was great to hear from you, hoping to hear again soon

Donna  :)

p.s have you or your partner had any fertilty tests done like blood tests or sperm analysis?
 

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Hello Donna,

I'm so glad you replied. I was so pleased to see someone else write about vag on here. I'm sure there must be other people with it too. I'd thought about posting something about it before now, but never plucked up the courage!

I'll try and answer all your Qs. I've had vag for at least 11 years. I've only ever had one partner (husband, been married for 7 years). I hadn't even heard of vag until I went to my GP about a year ago. I thought that I was a freak, and that no-one else had the same problem. I've never managed penetrative sex. The reason I finally went to the GP was because I desperately want to have children, and finally realised that things weren't going to miraculously sort themselves out. This GP, new to me then (I'd just moved) was very understanding; previous GPs had never seemed very approachable.

I suspect that my vag is partly caused by a horrible childhood; I was emotionally abused by my mother (I don't mind going into that in more detail if it helps), and was never shown any affection or touching of any kind. I also had no sex education at all. Then I think my first experiences of attempting sex were so disastrous that it has become such a big deal in my head.

The dilators freak me out. My psychosexual counsellor doesn't use them, and prefers to get patients to insert their finger. I've started this but haven't made any progress yet. I can't get tampons in either.

Your positive experiences of Guys have made me think twice about them. I didn't speak to a doctor, only a nurse. They were originally my first choice if we had to go private, mainly because it is opposite where my dh works (convenient for giving that sample!).

I have had some tests. I had the blood tests done at St Albans hospital and again at Luton and Dunstable, all fine. My husband has done 2 semen analysis tests, both of which showed poor motility; that may be a problem. He had them done at St Albans. However the consultant at LandD said that they measure it in such a peculiar way at St Albans that the results are meaningless. I don't know what to believe! I have also had a vaginal and abdominal ultrasound scan at St Albans. The abdominal one showed that my uterus was tilted, and blocked the view of the ovaries. I couldn't manage the vaginal one because of the vag; I was climbing the walls when they tried to insert the wand! The consultant at LandD somehow managed to insert a speculum (child sized), and did a lap and dye (showed everything was fine).

I don't really know what will happen now. I go back to LandD on the 17th. I want to tackle the vag, but because of my age I can't wait for that before ttc naturally. I'm trying to see the vag and the fertility treatment as separate issues.

There are websites with details of how to inseminate at home. We tried that for the first time a few days ago, but I can only get the syringe in about 2-3cm! We had 5 attempts, but I'm not really expecting anything to come of it.

Please keep me posted on how you are getting on and what you decide to do. I think it is great that you are tackling this now, whilst you have lots of time to play with, rather than sticking your head in the sand like I did.

Best wishes,
Emma
 

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Discussion Starter · #8 ·
Emma,

I know exactly how you feel about the dilators, when we first went for treatment and pyschosexual counseling it was all I could do to insert a finger, it doesn't feel like it but looking back on it I guess I have come quite far since then and I'm sure you will to!
Again the same as you it is the want for children that has lead me back down the treatment for vag path as I haven't had treatment for couple of years couldn't see the point until I wanted children, the same as you I am treating them as issues on there own and for me the greater priority is to have children!
booked to have a vaginal scan on the 13th so not looking forward to that! they are going to insert a spectulum which if I don't get in to much of a state about should be okish as Ive had that done before so here's hoping!
DH and I have been tcc for 1 year we tried for about 7/8 months using a turkey baster! but not convinced i was inserting it far enough. had 3 more inseminations at my family planning clinic where all the staff have been very supportive, I felt the doctor there go in a lot further with the spectulum so I'm sure we weren't going in far enough before but guess it only takes 1 eh!at the family planning clinic the also used a clamp which made the whole experience worse it was very painfull but I had to go through it I want children so much! after going through that I'm sure IUI cant be that bad! :eek:
maybe you could try getting your GP to refer you to guys as I said I saw Dr Emma Sowerby and she has been fine maybe you could ask for her??
Hoping your home insemination works then you wont have to through IUI, its a nightmare wainting for your period to come especially as preg signs are same as pre menstrual. So hoping your coping with that.

Good luck ^reiki^ ^reiki^

I am so pleased and relived to have you to talk to!

Donna xx

p.s where is it that you live?

I'm in catford which is near beckenham/Bromley/croydon if you know any of them.
 

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Hello again Donna,

I know your part of the world very well. I used to live in Crystal Palace, and before that East Dulwich. I'm in St Albans now. The reason I've been referred to Luton and Dunstable hopsital is because my nearest hospitals (St Albans, Watford, Hemel) don't have any experience of vag. and aren't very experimental (apparently).

By coincidence, there is a post on the 'ask a nurse' section today from someone who sounds like she has vag too.

I was interested to see you went to family planning clinics to help with imsemination. I had now idea that they did that; I assumed they only offered contraception and tried to stop people becoming pregnant! did your GP tell you about this? Did they refer you or did you just go along?

I hope you aren't worrying too much about the speculum. I'll be having one of those on the 17th, but I'm trying not to think about it.


Take care, and stay in touch,
Emma
 

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Hi Emma, thanks for your PM, I will post it here so you both know, I agree it would be nice if there was an area for you to discuss this, but unfortunately I am only really here to help out on the IUI thread, I don't have any say on the running of the actual forum, so how about I split this topic so your part is seperate and we can title it something like "IUI with vaganismus" at least it will give you somewhere to post and if new people search for that word they will see your thread here, if it grows, you will get a new home like the IUI girls, so it will be part2 and so on ?
 

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Discussion Starter · #11 ·
Candy,

Thank you that would be really good, as I'm sure we are not hte only 2, think people find it hard to come forward. I know it took me a long time to openly talk about it.

Thank you Donna xx
 

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Discussion Starter · #12 ·
Emma,

I was already seeing the family planning clinic for contraception, from when I was 17 I never stopped taking it as always thought that I might have sex soon so didn't want to stop just in case. whilst there for a check up the nurse talked to me about having a smear test which scared the hell out of me so explained to her about the vag ( didn't know it was that then though just thought I was a freak!) I then got put in touch with a psycosexual counselor almost straight away so was surprised you had waited so long.
As the family planning clinic where helpfull on that front when I stopped taking the pill so we could ttc I went down to see them for some advice this is when they told me to try a few times on my own if I wasn't successful then to come back and see them.
I think I may have been lucky as all the team at sydenham green family planning clinic are very good.
The doctor who agreed to do the insemination was Dr Lesley Bacon she has been very supportive and is based at honor oak park I think.

Just pop down to your local clinic and have a chat with one of the family planning team, they also have the same power as your GP and can refer you on.
I was referred to Guys from the family Planning, I have never been to my GP about vag or ttc as I have had all the medical support from the family planning so I would defiantly advice you give them a try, go to the next walk in clinic you have nothing to loose.

Best wishes

Donna xx
 

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Sorry guys I messed up splitting your posts and ended up with two, I have closed part 1 and referred anyone looking at it to this one part 2.

Just for reference Donnas initial post was

Donna Taylor said:
hi everyone

I'm needing help and advice!!!!!!!!!
for those who dont know me which is probably quite a few as I only joind last week, I have been waiting to here babck from Guys hospital as to what treatment they recomend. my dx is that I have vaganismus so find sex very painfull and impossible.
Anyway heard back from hospital today, they have advised that I have IUI and that it would be best to try a natural cycle/cycles first. thing is and what I'm getting into a flap over is NHS waiting time is 18 months!!!!!!!!! wasn't expexting it to be so long. I know I'm only 22 and should be gtaratefull I have time n my side etc etc, and I am but at times, that is really of no comfort as I want to start a family now.
They have said that if I want to go private in the meantime it will cost £250 for natrual cycles which for us is quite alot of money, not sure what to do as have heard that if you go private you loose some of you nhs funding??? is this true??? also if we go private will it make our wait on the NHS longer????
we only have funding for 3 goes on the Nhs so am thinking that it would be better to fund the natural cycles ourselves at £250 and save funding incase we need medication which costs from £500 a go!!!!!!
sorry if I've waffeled on so confused!!!!!! ^help^

happy new year to all Donna
 

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Discussion Starter · #15 ·
Emma,

How are you? how is the counseling going?
got a letter from Guys telling us the waiting list is 2-3 yrs not 18 months! thinking and hoping that they have made a mistake as letter talks about ivf not iui!!!
Will discuss it when we return on Thursday. still not to sure how we are going to afford to go private but guess we'll have to find away!

Take care

Donna xx
 

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Hi Donna,

That sounds a ridiculously long time! Let's hope they have made a mistake.

I suddenly realised today that I had made a mistake in my posts. It was Barts not Guys that I had had a disappointing experience with. I hadn't tried Guys at all! I think I've looked at so many options so many times that they've all got confused in my head.

I haven't had a counselling session since just before Christmas. My next one is on Tuesday. I'm looking forward to it and dreading it at the same time! At the last one she made me talk about my childhood and I cried, and I feel a bit embarrassed about that. I'm determined not to cry at the next one! I find it very hard to know what she is thinking, and that freaks me out a bit. It seems really one-sided for me to tell her the most private details of my life and yet I know nothing about her. I know that's how counselling must work but I haven't got used to that yet.

Do you mind me asking what you think caused your vag? I think mine stems from a horrible childhood (emotional abuse, lack of sex education etc). I was attacked a few years ago (he picked the wrong person to try to rape!) but I don't really see how that made a difference because it occurred well after I already had this problem.

I actually feel very positive at the moment that I can beat the vag and conceive, even if the latter has to be with IUI.

Do your family or friends know about the vag or about your plans to have IUI? Mine don't on either score.

Take care,

Emma
 

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Discussion Starter · #17 ·
Emma,

I know what you mean about the counseling it is hard to open up to a complete stranger, but try to remember that anything you say she has probably heard before, she wont judge you about anything you say and if she does she shouldn't be doing the job! do you go alone to the sessions or with DH?
Hope all goes well on Tuesday, it does take time to relax into it and don't worry about crying you shouldn't feel embarrassed it isn't wrong to show your emotions!

Not to sure what caused my vag, don't have any bad experiences in my childhood that I know of and sex was always openly discussed in my family so its not that I feel ashamed or dirty or anything like some women do.
Think it started because I built sex up to be such a big deal in my head, When I met my husband I was 17 and hadn't had many boyfriends or experience. I had never even touched a man before! My husband is also a virgin so think we both just got into such a state about it. At first he never admitted to being a virgin told me he had slept with loads of girls so he made me more nervous with out meaning to.
We had a few tipsy/drunken attempts that failed as neither of us wanted our first time to be when we were drunk but I felt I needed it to relax.
When we did finally try properly it really hurt me, but friends had said first time hurts everyone etc etc, so me like a fool thinking the pain was normal laid there in pain, crying with pain and told him to carry on as I thought once we did it once the pain would be gone! how wrong!
because of the extreme pain I went through think my body just stops me going through it again. I know there is no reason why I cant have sex, I've been examined and there is no medical reason it is all in my head which is so frustrating!!! I am hoping that one day I Will beat it.

My immediate family and a couple of close friends know about the vag and IUI. They try there best and are supportive but don't really understand completely.
some people think I shouldn't be having IUI as I should beat vag first. As I'm only 22 they don't see why I'm in a rush to have kids I find that most frustrating that they don't understand my desire to have children.

Sorry to here about your attack, It cant have helped your situation and/or feelings.

Not sure how I feel a the moment have days when I feel positive about vag and getting pregnant. but at the moment feel so confussed and scared by it all, there are so many decisions to make and still don't know how we can afford to go private but cant wait for NHS as its to long, Hoping things will be clearer after appointment on Thur.

sorry think I've babbled on as usually

talk soon

Donna xx

p.s maybe worth you giving Guys a try
 

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Hi I am a newbie here

I had the same problem - but what the doctor did was to put me in on sedation during my first IUI attempt.

Last week in my second IUI attempt, somehow the doctor manage to encourage me, there was minimal pain and sedation is no longer required. Hopefully I will get pregnant and dun have to go through the IUI again....



 

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Discussion Starter · #19 ·
thanks for you post, we are hoping that others will have the courage to talk about vag as most women are ashamed, I know I was!
Great news about your second IUI attempted, are you in 2 week wait now? I'll be thinking of you and hope it works!!!

Keep us posted on your progress.

Donna xx
 

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Hello Janicel,

Thanks for your post. It really helps to know that other people are out there and have found ways around the problems of ttc with vag.

Could I ask a few Qs: where are you having treatment? Is it on the NHS or did you go private? What does the sedation involve? Is it like a general anaesthetic or do they numb you 'down there'? How do you feel afterwards?

All the best with your 2ww; I hope it all works out for you.

Emma
 
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