# New to all this and confused at consultant's attitude/opinion.



## veballan (Feb 1, 2006)

Hi Everyone

I have finally taken the plunge after signing in as a guest for ages and reading all your fabulous text of support for each other.
I wonder if anyone can offer me some guidance given the blank wall we seem to have hit regarding the information we are getting back from our NHS consultant.

My partner (35) has polycystic kidney disorder diagnosed when he was in his early twenties which means that like PCOS cysts grow on the kidneys and can migrate to other parts of the body, which is what has happened in my partner's case. The cysts have migrated to the seminal vesicles which hinders their function and so although my partner produces sperm his sperm count is zero as the seminal vesicles do not contract to release the sperm and we are informed we would need PESA and IVF.
No previous children on either side.

After being referrred by my GP to a local NHS gynocologist and fertility consultant we had a series of preliminary tests done. Mine were the usual 1-3 days FSH, oestrogen, rubella, anticardio antibodies, progesterone etc and I had a hycosy. 
My partner had a genetic cystic fibrosis assessment ( negative) Chromosome Y testing (good) and is awaiting a further appointment with the urologist at the NHS hospital.

In December after the initial test results were in we went back for an appointment together and the consultant basically told us that although PESA/IVF was a possibilty with my partners results because of my age (I turned 40 at Xmas) we should think long and hard about it as the chances of a successful pregnancy he said were only 10% in my age group.
Although he did say he was prepared to refer us and wrote to the local NHS trust.

When I pressed the consultant for more information I.e what actually makes the difference between women at the same age he just repeated his comment that those where the statistics in my age group.
I was a bit shocked because up until now, myself having had no previous pregnancy, gynocolgy or infertilty problems (never tried before this partner) we had both concentrated on overcoming my partner's fertility issues not perhaps mine.
Not being satisfied with the consultants answers I started to search around and found the Infertility Friends site and read up on all the great information on FSH & interaction with oestrogen levels, ovarian reserve etc.

Subsequently having managed to speak to the consultant's secretary to request my test results I finally got a letter from him stating that my FSH level was 10 and although this was normal for my age that I was borderline in the parameters for IVF- no other information.
His secretary advised I should write to him putting any additonal questions to him but I then managed to get a cancellation appointment with him where I was determined to ask about more of  my results oestrogen levels, the hycosy etc. together with the further tests that could be done such as clomid and a trial with the drugs given to develop and harvest the eggs. 

At the appointment I asked him about the FSH result and asked him to verbally give me the results of the other tests such as oestrogen levels. He was not forthcoming and kept shaking his head repeating that the only guideline needed was my FSH ( the only one done at 10!). When I then asked him could anything be done to test the responsiveness of my ovaries to the fertility drugs and how in the case of IVF would they choose the most suitable drugs/dosage he said that we would actually have to go through a cycle and that it was very much an experiment ie trial and error.
(This consultant also has a private fertilty practice where he performs IVF and ICSI treatments so I was prepared to pay for these extra tests.)
I was horrified at what I was hearing given the expense and what might be considered a dummy run and believed given the information on your site that further assessment could be done prior to putting us forward for our first cycle.

I then called several fertilty clinics in London, where we are considering going as private patients (my partner has been treated previously by David Raph for a cyst on his prostrate) and managed to speak to consultants who confirmed many of the things I had read on the IF messages. They explained and outlined the importance of the other tests and oestrogen levels and what could be done to minimise 'the experiment' and repetitve testing.  

I am now chasing to try and get our results and notes to take forward to a private consultation.

We realise we are very lucky to have had these test done on the NHS as I turned 40 in December and we are unlikley to get further NHS funding ( as in the meantime they have run out) but I am now more confused than ever and imagine at FSH 10 might be my best ever reading! 

Please has anyone else had this sort of response from thier initial consultations and can offer any advice on what steps, apart from booking a consultation with a new consultant, might be advised in our case.


Sorry hope this text reads OK and isn't too confusing but just wanted to get it out there as now at my wits end with it all and disperatley need helpful advice.

Thank you everyone


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## Jennifer (Jul 22, 2004)

Hi Veballan

I am sorry I can't help with your questions but I wanted to say  and welcome to FF   I am sure someone will be more able than me to help you out 

Wishing you all the luck in the world in your journey  

Jennifer xx


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## veballan (Feb 1, 2006)

Jennifer 
Having posted my first message I am breaking off my long overdue painting of the hallway celing to sneak a look to see if anyone has posted me a reply yet thank you so much for being the first .


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## ☼♥ Minxy ♥☼ © (Jan 13, 2005)

Hi & welcome 

I don't think I can offer much in the way of advice although I would definitely see if you're able to get your bloods checked again (either NHS or if you can, paying privately). I only suggest this as many consultants like to have them checked over a couple of months as obviously our levels will change month to month & this is able to give them a better idea of whats going on, especially regards FSH (for ovarian reserve). My situation is a little different in that although I'm 37, my FSH is low (last was 6.5) but I have problems with implantation which is why we're moving onto IVF.

Its such a long & emotional roller coaster so I appreciate how frustrated you must be feeling. 

Sorry not much help but I wish you all the luck in the world  

Take care
Natasha


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## LiziBee (Aug 24, 2004)

Hello and welcome to FF.
Sorry to hear you've had such a difficult time and that the consultant is blowing hot and cold on you. Consultants are just humans like the rest of us and have positive days as well as bad ones - try not to hold it against them, by and large they are extremely professional and will always try to advise you of the best course of action. 
You are right IVF is very expensive and to pay all that for a dummy run seems unacceptable (although if you don't actually make it to EC they normally reduce the price considerably) but unfortunately everyone reacts differently to the drugs and there really isn't a way to tell until you actually do it.
10% may seem very low but there is no reason not to think that with care and determination that you will get there in the end particularly if you are prepared to keep an open mind on alternative treatment protocols. 
Finally when you do sign up with a clinic remember that they are obliged to offer counselling (that said it can be a bit of a wait) and it may be worth exploring how you might feel about different stages of your treatment and their likely outcomes.
I hope all of that is some help to you, good luck in your journey!
love and hugs
Lizi.x


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## Flopsy (Sep 18, 2003)

Dear Veballen,

Welcome to the horrible world of IVF treatment for complicated cases.

I just had a quick read of your message and can really sympathise with many of the problems you are encountering. We also fought the AGE problem and needed TESE's to get sperm due to my DH's cancer. We had little help and support from the NHS.

On Fertility Friends you will find many women who are going through the same problems (often for different reasons) and questions about age/FSH are very common. From your message I can see that you have a good grip on the problems and have already started your groundwork.

During our time in this IVF rollercoaster journey we have met Consultants of staggering stupidity and rudeness. We have also faced plain ineptitude and lack of good judgement. Some of this is due to the plain uncertainty and lack of science around fertility.  Put two Consultants in a room and they will seldom agree (unless they are NHS and are scared of their jobs...).

Personally I have no time for the "first cycle is just a test" school of IVF. What we need to see is someone who has dealt with other complicated cases and has done his "experimenting" already who can advise us on the best protocol. These people are difficult to find and it pays to keep trying until you find the right one. An expensive process! 

Here are some ideas on "things to do".

1. Look at ways of reducing FSH and ask for feedback from women who have looked at this common problem here. I've not had this problem as yet but gather that high oestrogen needs to be taken into consideration too.

2. Look at IVF protocols for we older girls. Once again tons of experience on FF. Some women are going abroad due to the abysmal lack of help in the UK for the over 40's. If you don't like the sound of the 10% rate find a clinic with a higher rate or research these protocols abroad that claim higher rates.

3. Have a look at the best sperm retrieval for your partners condition. We really liked Dr Ralph but were very aware that he is not a IVF expert. I wish that we had spent more time on this.

Hope that this helps as a first ramble. I know that it all sounds horrible and unfair. Sadly, in this business clinics are not paid by results and like any service you need to research and shop around.

Kindest regards,


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## veballan (Feb 1, 2006)

Thank you Minxy Lizibee & Flopsy for replying.


Yes it does get confusing having looked at the **** booklet we are now looking at going to either the ARGC or UCH as they do seem to have good figures in my age bracket and were very helpful given my scrutinising enquiries.
Has anyone considered these and had to choose? MY partner likes Mr. Ralph and would feel confortable with him for the ICSI part although I agree he shouldn't be the main choice.  

My first thoughts on where we go from here test wise is to wait for the uptodated biopsy for my DH and perhaps further tests on my FSH. At the momment without even verbal ffeedback on the other test results from the NHS consultant regarding my oestrogen etc. it is difficult to know what to do.
I have requested my records from the medical notes centre at the hospital and they said it may take up to 3 weeks and even then they might not  contain the  actual test results only notes.
The Consultants assistant seems to always be on ansaphone and hasn't returned my calls requesting advice on how best to now get my results ASAP its all very frustrating. 
The only thing that appears to be up there in big bold letters is FSH 10 EGGS ON THEIR WAY OUT and TIME RUNNING OUT!!!

Many thanks for your kindness in replying and good luck everyone - please keep chatting to me X


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## Ellie.st (Mar 11, 2005)

Dear Veballan
Sorry to hear about the hassle you are having.  It is true that there is a low rate of success in IVF for over 40s - we were quoted 5-10% at the outset and have no apparent problems (other than ttc unsuccessfully for over 8 years!). However, some clinics do have better rates than others although at the end of the day, what matters is whether it has worked for you.  Being realistic, at our age, the chances are that it won't work (no matter what clinic you go to) but that doesn't mean you shouldn't try!

Re FSH, mine is around 7 and I have responded very well to the stimulatory drugs (on a low dose) on both my cycles.  It's the implantation bit where my problems seem to occur, and I am currently getting various tests done to see if any reason can be found.  As far as I understand it, FSH is only a very rough indicator of how you might respond the drugs - useful for setting the initial dose of stimulatory drugs on your first cycle but that's about all. Some people do seem to have been successful in lowering their FSH, although yours doesn't sound disastrous in any case.  There are certainly plenty of examples of people on this site who have been successful with pretty high FSH levels.

There are a whole range of other factors which will also play a part in whether or not you have a successful outcome, and I think Lizibee is right in saying that, at the end of the day, there are no guarantees as to how you will respond.  However, being at a clinic with a track record in treating older women increases the odds in your favour.  If you are able to, I would advise you to head straight for one of the clinics that have better results with older women, and let them deal with blood tests and the results from them.  Time is of the essence, and it sounds like your current NHS consultant is holding things up.  

Best wishes

Ellie


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## veballan (Feb 1, 2006)

Thank you very much Ellie for responding your words are very comforting.

Having a bit of a hard time emotionally about it at the momment beating myself up about it all because the emphasis now, with my age with regard IVF, seems to be on the both of us.
It doesn't seem to help that my nextdoor neighbour is 6 months pregnant is already having a daughter born at the age of 40 and appears to be able to plan her pregnancies so precisely as to get as a teacher the best maternity leave/ holiday combination possible.  
Sorry if that sounds really jealous and uncharitable but it seems so unfair at times.


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## Kamac80 (Nov 24, 2005)

hi veballan and welcome to ff

I have no advice to offer but it sounds like u are having a rough time and i hope it all works out for u

Kate


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## Ellie.st (Mar 11, 2005)

Dear Veballan

It IS really unfair (I've just spent an evening feeling very sorry for myself - and that's after more than 8 years of all this) but please don't beat yourself up about things.  If it's any help, I find the best way to deal with it is to focus on things you can do - since I embarked down the IVF route, I've done a lot of research and taken as many steps as I can to try to improve my chances (eg changes to diet, supplements, losing weight, pressing for tests, researching clinics, planning next moves etc).  I find that having a plan helps me to feel a bit more in control of what is a very frustrating situation.  You are just at the beginning of your journey and you still have plenty options.  You sound like you have already sized up what you need to do - so go for it!!!

Ellie


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## veballan (Feb 1, 2006)

Thanks for your advice Ellie

Since posting the message have got official confirmation of being blown out by my own PCT and a letter from the consultant re my appointment with him last week to ask him for for my specific test results so that we could seek a 2nd opinion on the info and like you say move on to the next stage of the plan.

His letter copied to my GP gives the impression that I was asking him for reassurances of success which I wasn't, I only wanted to know my other tests results i.e oestrogen, progesterone levels and the results of the hycosy which he refused to give me. Reason  so that we didn't have to retest completley when getting a 2nd private opinion (as test sdone in Nov 2005).I got my partner to read the letter to confirm that I wasn't putting my own slant on its contents  its like the consultant is trying to make out I am a neurotic woman who wants guarantees.
All I want to know is my own test results so that a true  opinion can be given on our circumstances and chances  not soley based upon  "in your age the chances are only 10% " its only the FSH that matters" school of thought.
Perhaps he is not used to people who research their questions and put them to him in a direct manner.

Sorry about the rant but his arrogant attitude to waht I feel are reasonable requests for information has really has p**d me off!!!

Anyway on with the plan.
Off to my doctors either today or Monday to get my actual test results as the consultant's secretary said although she can't give them to me without consultant doing another letter she can forward them to my GP.
Have the form to make a formal request but have been told by the hospital that notes can take up to 3 -4 weeks to come back in that way so fingers crossed as least I will get the info I need that way.

Thanks for all your support.


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## Linda (Jan 3, 2006)

veballan. Sorry, I am also one without this experience, but you've got some really good advice from the other girls here. I have to say that I'm shocked at how you've been treated. I think it's terrible..  I'm 36, have had one reading of FSH which was 13.9, and they didn't hesitate too much on giving me NHS treatment. It's really sad that they can't look at circumstances and actual results instead of just the age.

I really hope and think something good is in the cards for you and your husband!!!

All the best of luck!

Linda
xxx


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## veballan (Feb 1, 2006)

Thanks Lin Lou

I didn't think I was asking for the world either maybe he thought being 'borderline' I might if encouraged choose to go private with him and affect his stats but no way as my DP's identical twin has had infertilty problems ( they have the same disease but not same sperm problem) and has 5 attempts at ICSI with this consultant all failed and now the clinic have come up with a problem in his partners hormones !!!!!! 

I'm a fighter so I haven't given up with the PCT's yet especially as I think its their bl**dy fault we are in this mess in the first place rather than needing just a bit of help and perhaps some AI basting.
Thanks for all your kind words


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## Flopsy (Sep 18, 2003)

Hi Verballen,

We had to fight our PCT for funding for a few things along the way. What we did was to prepare a "business case" type report on why they should fund our treatment.

This report went before a special committee who met once per month to consider these requests. We did have some success through this.

I have seen from postings by people on Fertility Friends that some PCT's allow the person who requires treatment (or the couple) to appear before this committee and present their case.

Hope this helps.

Kindest regards,

p.s. your comments about being slanted as a neurotic woman is exactly right and representative of the misogynist behaviour of some men who work in the UK fertility field.


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## DizziSquirrel (Feb 15, 2005)

Welcome to FF veballan 

Sorry to hear about the hassle you are having, I am glad youve had some replies 
I hope you are feeling brighter today too 
I also wanted to ask .... Have you been into Chat yet?

Come in and say hello - http://www.fertilityfriends.co.uk/forum/index.php/topic,47639.0.html

~Dizzi~


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## Ellie.st (Mar 11, 2005)

Dear Veballan
Glad you are making progress! I know what you mean about being made to feel neurotic - when I went to ask my GP (thankfully a locum who I don't need to see again) to ask for some basic blood tests for clotting and immune issues, he started arguing the toss with me (even though I was willing to pay for the tests privately) and said at one point "I realise you are desperate but ...".  I told him that I wasn't desperate  - just wanting to be sure, after almost nine years, that we were doing all we could before giving up.  "Desperate" I'm definitely not, or I wouldn't still be here after all this time!!!  "Determined", however, is quite another matter, and I now have (albeit painfully) acquired the the ability to be much more assertive with medical staff.  And you are right - some of them really don't like it when you have done your own research (I've had mutterings of "you've been looking up the internet, haven't you?!").  On the other hand, others (mainly female, I have to admit)  seem to have been really willing to have a proper discussion with me about options. (One actually said she had enjoyed my questions!).

Anyway, hang on in there.  
Ellie


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## DizziSquirrel (Feb 15, 2005)

Hi Veballan

It was lovley to see you in chat tonight, thanks for popping in, 
We will be holding other newbie chats so look out for it being advertised on here.
~Dizzi~


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