# Womans hour



## LEECOWDEN (May 24, 2005)

Tomorrow on Woman's hour "Radio 4" There is going to be a discussion about low dose/ natural IVF versus the normal high dose IVF.  Should be well worth a listen. I know about it because the consultant who did my treatment is one of the speakers, and she is a very interesting and inspiring woman.

Leexx


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## Flopsy (Sep 18, 2003)

Thanks Lee, I'll make sure I listen!

Kindest regards,


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## Fidget (Jan 27, 2005)

Rats cant get at work,   will have to listen after the fact at home


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## Tottie (Aug 10, 2006)

Hi Ladies

Just wanted to say if you missed this today, you can listen online at
http://www.bbc.co.uk/radio4/womanshour/03/2006_42_wed.shtml

Tottie x

_This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.UK or its owners are not responsible for the content of external internet sites_


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## Fidget (Jan 27, 2005)

Well I snuck out to my car to listen.........

I thought Geeta ( as usual) spoke a lot of sense.......... I was so   to hear that the BNF has no lower or max dosage for fertility drugs!!!! I noticed a post from someone somewhere moaning that it was just about the money blah blah   but I know for fact that her clinics are amongst the cheapest in the country!!!! 

She is also right that of course the patient wants as many eggs as possible ( who doesnt) but I have long since come to the conclusion that its quality over quantity every time, so again Geeta was right in saying a lower dose to start with is better, obviously if it needed increasing then so be it, but why start with wacking great doses unless there are mitigating factors?? 

anyway.......... I enjoyed it and once again made me glad I chose to go to her for my treatment!

Hugs

Debs
xxxxxxxxxxxxxxx


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## Minow (Aug 2, 2005)

Well I think we may have to disagree on this one!

I have to say I was not impressed by Geeta at all. I felt she was fairly ignorent when it came to knowing and understanding what goes on in other clinics. No clinic should give higher doses than is necessary however it can only be up to each individual consultant to know what is required in each case.
It is usual to start someone on a fairly mid dose and adjust as you go along. For my first go I was on a mid dose and gradually over each go this has had to be increased to a very high dose as I am a poor responder. For someone who responds a lot to a mid dose the clinic will lower the dose.
The days of trying to get as many eggs as possible are long gone. However for ICSI just one or two is not enough. 3 to 5 would be great. For some people this will require a low dose but for others like me it requires a high dose. No external governing body can possibly know what is required. These descisions have been taken with a lot of careful thought both on the part of my consultant and me. I have looked very carefully into the possible side effects and more fool any patient who goes into this without doing so. We should all take some responsibility.Certainly my clinic have their own upper limit. This has been decided by the consultants who have all the information. I am sure that all clinics have their own ideas and don't need a governing body sticking it's nose in and taking the descisions away from them.

I am glad you are happy with her for your treamtent. i hope it works for you. I am very happy with my consultant and I know he has my best interests at heart. The role of any clinic should be to help couples achieve a healthy baby in a safe manner and I am sure that this is what they all try to do. We do not need a gonverning body to step in and start taking descisions about treatment away from the experts. The consultants who see us and work with us through all of this.

On the money front and I am not moaning and saying it is just about the money blah blah, it is still important to point out that I am paying for all of this (thank you so much NHS for not offering any goes in my area!) and so really no outside body has the right to tell me how my money should be spent. These descisions are taken by my consultant and with my knowledge and understanding taken into account throughout.It has nothing to do with which clinic is cheapest.

I suggest that Geeta should concentrate on looking after her patients and let other consultants look after theirs.

Just for once I would like to hear some sensible discussions about fertility treatment that do not add fuel to the ignorent people who are anti it all. I am afraid that Geeta's comments are not helpful and will only go to "prove" to people who don't know what they are talking about that IVF is bad. We all know on here that it isn't and it is our only chance at having a family but there are a lot of people out there who don't.

Good luck to everyone, whatever stage they are at and wherever they are but please leave the descisions up to each individual consultant. They are the ones that know best.


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## sho28 (Jan 10, 2006)

I'm afraid I have to agree with Minow

I found Geeta to be rahter naive when came to the emotional side of IVF treatment. We all know (or we should do ) that too many eggs can be dangerous and the the likelihood is that the quality may be poor, and for those with the luxury of needing a small dose (like myself) to get a good response, setting a maximum won't be a problem. But what about people who need a large dose to get  one egg, nevermind getting to embryo stage? 

In my opinion and you can say its blah blah if you want, its another constraint that we don't need. With limitations on the amount of embryos being put back I think legislation has done enough thank you. I have always thought that three embryos was too many for obvious reasons, but frankly I've gone into my treatment with my eyes wide open, I've paid into the NHS and not asked for a penny, so I have indeed bought my embryos and if I want two put, I think that should be my right. To add restrictions to consultants on drug administration I think is going to be a major problem for a lot of women. Worship at the temple of Geeta is you like, put take a moment to lift your  head and think of the impact on other people that her comments have made


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## LEECOWDEN (May 24, 2005)

Geeta was not tying this in to getting in a good result. She was highlighting the fact that dr's shouldn't just jump in with high doses of drugs without assessing the needs of the patient first.

As someone who suffered a heart attack from fertility drugs, and being given too high a dose, I ended up receiving treatment from Geeta. Without Geeta I would not have been able to have IVF. Because she takes an individual approach to each patient, and was willing to monitor me very closely on a low dose, increasing to a mid dose, I was able to undergo fertility treatment. whereas other dr's found me too much of a risk.

As Geeta pointed out, Gonadatrophins are the only drug in the whole of the BNF that does not have guidelines for doseage. This is diabolical. Ok you may all be very lucky and have had sensible consultants, but for the unlucky few who end up with cowboys, Some sort of outside regulating is very important.


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## KTx (Mar 23, 2006)

I too agree with Minow, I think her comments were very naive in the world of IVF and someone who is meant to be a specialist in it surprised me somewhat.

I have only had one session of ICSI so far and I was started on the basic dose of Menopur 2 vials a day, and I didn't produce many eggs at all only 5 of which only 2 of those fertilised, I then put only 1 back on the advice of my consultant as I had a grade 1 8 cell but unfortunatly that didnt work and I had a BFN.

I stongly wish I had, had both embies transfered as lets face it the other one that had fertilised was left to perish and what a waste that seems, if I am lucky to get 2 embies this time and I am on a slightly higher dose of menopur this time round 2 one day 3 the next 2 the next etc then I WILL have 2 put back regardless of the quality as if I am lucky enough to get a BFP and I have twins then I will be eternally grateful and consider myself very lucky.

I think Geeta needs to seriously consider what couples like us have to go through the heart ache and financial strain that it adds to us and having our chances reduced all the time by lower drugs and only 1 embie just makes things harder and when they are talking about increasing the age limit to allow 50 and 60 year olds to have IVF what are we to think than all they are trying to do is make money, as surely it is better for someone in the 30's like me to have twins than to allow a women in her 60's to have one child, as what kind of life is that child going to have they will end up as a carer in there early teens

I also believe they really need to look at there stats as to how many people have 2 embies transfered and how many people actually have twins from them as just form speaking to people on here most people who have two transfered still only go on to have singleton pregancies and some of us not even that lucky and have a BFN


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## sho28 (Jan 10, 2006)

With due respect I think you should listen again. She wasn't highlighting anything. most people discussing this issue on other threads have been saying that she saying that there basically should be a maximum. Is it possible that the reason there is no guidline administration because it HAS to be catered for every woman and everybody needs a diferent course of treatment?

In fact this is the area of treatment where are the MOST outside regulating bodies, legislations etc. Ask anyone who has had to jump through hoops to get their NHS go, or to move from IVF to adoption. If she's right no doubt we'll hear from all the other consultants who agree with her. So far all I've heard is dirision for her comments as they were inflammatory and probably scare mongering. 

Also i have to say she was patronising. I for one have eyes and ears and am able to listen to or read the risks of IVF treratment, digest that information and makea decision, I don't need some consultant who doesn't know me or my case histroy deciding that I don't have the wit to understand risk, and make the decision for me. Frankly she was rude in this regard.


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## KTx (Mar 23, 2006)

Lee I am so pleased you actually now have your dream and I am glad that Geeta helped you get there, and I am so shocked to hear you had a heart attack from IVF I find this mind blowing who treated you in the first instance to cause something so sureal?

I do think however that you need to look at it from a different perspective as you are in the minority I couldnt tell you one other person who I had ever heard that happening to.

I wish you all the best with the last few weeks of your pregancy and I hope you have a very happy and healthy baby


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## Minow (Aug 2, 2005)

I agree that it is shocking to hear that you had such a bad reaction and obvioulsy anyone you went to afterwards who helped you achieve your dream safely will rate very highly to you.
I think the thing is though that we cannot have regulations brought in for the sake of a minority that will impact so hugely on the majority.
It is easy to forget that some people die when given penicillin for the first time, it is a terrible thing but no one would say that therefore we should not have penicillin. Like wise, you had a terrible experience with your first treatment but just because you need a lower dose I don't think it is right to prevent those women who do need a higher dose getting it.

On  the subject of cobwoys that are out there I would say to anyone starting on this road - do your research. Make sure that you are going to a good clinic and know what is going on. Look at their results. WHether it was coyboy mentality in your case or just a terrible accident I don't know but I wish you all the best for your future life with your baby. Please spare a thought for those of us still struggling to get there.

Minow x


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## HollyB (Sep 14, 2004)

I listened to the interview and I thought it was appalling - as Sho said, I think it was complete scare mongering. To suggest, in a very vague way - without any medical studies or evidence to back it up - that high doses of IVF drugs cause problems with ovarian tissue, breast tissue and uterine tissue - I think is irresponsible and cruel. In 2005 I had to have treatment for a breast lump - which turned out to be nothing to worry about. I was seen by one of the top breast specialists in the country whose wife had just given birth to their first child following 9 IVF treatments. He was ideally placed to know the detail of such claims. There is absolutely no basis for the claims that IVF drugs cause breast cancer or any other cancers for that matter. It is true that if you already have breast cancer - taking IVF drugs of any strength - is inadvisable. To make broad sweeping statements like this is irresponsible and cruel.

As pointed out by the other consultant on the program - the IVF medical industry is among the most stringently regulated - and to impose blanket regulations on dosages of drugs is farcical. The only piece of information that Geeta latched on to is the area surrounding OHSS - which is a well known risk of taking IVF drugs, everyone is made aware of it and it is not necessarily as a result of high doses of drugs. It could happen to someone taking very low doses of drugs. It is up to the consultant and clinic to monitor each patient and their drug regime.

I for one would not have a child today, and certainly no hope of another child, if such general restrictions were put in place. On a cynical note - I have to say I think that Geeta is simply promoting her preferred method of IVF - which is Natural Cycle IVF - although she does also do conventional IVF treatments. She should just promote this on it's own merits - and stop bashing other consultants and clinics without any medical basis.

Sorry for the rant ...... but it does annoy me......

Holly


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## sarah38 (Jun 14, 2006)

And to clarify it is NOT the only drug in the BNF that doesn't have a maximum dose........

Sarah


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## KTx (Mar 23, 2006)

Lee I am sorry you feel that we were being insensitive as you posted on the other thread and I appologise I wasnt arround when you were on there, I do simpathise with what you have had to go through and I am pleased to hear that you have recovered and are fortunate to be dealt with your dream of a child.

I have never been on Clomid so I cannot comment on the dose, that you were given or had OHSS as I do not produce enough follicles in the first place hence I need another dose but I do think you need to remember there are so sides to every scale.


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## Caz (Jul 21, 2002)

This was quite an interesting interview.

I have to say I'm far happier with the thought of regulation of drug dosage than I am, say, of SET for instance. I know that OHSS is supposedly fairly rare but you only have to look around this site to see it is common enough that tells you clinics perhaps don't monitor and control drug levels as well as they perhaps ought to.

I'm somewhat gobsmacked that a drug that can have such a profound effect on your body does not have any official recomendations for maximum and minimum dose. I would have at least thought there shoudl be guidelines as to what E2 levels the stimulation ought to generate at what stages of stimulation - If every clinic is making it's own guidelines up then it probably goes some way to explain why there is such a disparity in success rates around the country. 
Dr Hammond made a good point in that most clinic self-regulate but....well, see above. Clearly there's a duty of care to the patients that is being missed in some cases because we still hear about OHSS an awful lot around these parts. My clinic monitors its patients very closely during stimulation and I know others even more but even so, I was started off on my first ever dose of Menopur and took it for 6 days before any monitoring of my response took place - I'm not sure if they based my initial dose on my FSH levels etc. and worked it out from that, or if it was the bog-standard starting dose (from talking to others I've been led to think it was probably bog-standard starting dose) - either way I know that I had to reduce the dose after that first blood test, still developed mild OHSS by the end and on subsequent IVF cycles started on a lower dose with no ill effects. That I got more and better quality eggs on the lower (and, in fact, fairly low by stimulation drug standards) dose does show that you don't necessarily need high doses to get results and that individuals respond differently to the same dose.

It's a really emotive subject - anyone desperate to get their first BFP would probably feel (as I did) that it's best to chuck everything at it - we all obsess over the number of eggs and we all asume more eggs/more embryos put back means more chance of a baby but I also think most of us recognise in some way as well that it's quality that counts.

There's certainly not a lot of information given to patients about the potential side effects of the drugs. Mind you, you could argue that they are all on the leaflet you get with the drugs so I suppose it's down to us to read the small print, but I think it would be well for patients to have it outlined and made clear to them _before_ starting any treatments exactly what to expect and any potential long term side effects. In my experience the actual patient information about side effects makes no real mention of any potential long term effects and I don't recall any doctor sitting me down and running through them. I was savvy enough to look it up and I do sometimes think that we all endow the public as a whole with the same level of reasoning and intellect that we might have as an individual. It is easy to forget that there are actually people out there who don't read the small print, don't think about the side effects and don't understand the process as well as they ought to and, even if they do, would still take foolish risks in their desperation to get results (and I am not just talking about IVF here). More fool them, maybe, but then the doctors, who are experts and professionals, have a duty to help us make decisions that are right for us, private care or not. I would much rather my consultant turn to me and say "no, that's enough" if it really was than to have me keep on pushing for more that might potentially cause more harm than good.

I do feel I have to respond to some of the comments that have been made here about Geeta Nargund because, and forgive me if I am mistaken, I get the distinct impression there's a bit of Geeta bashing going on here and I don't rightly understand why.

I thought she came across quite well, if a little passionate about her subject matter. She clearly feels strongly about the point and I get the impression that she's not for regulation but for soem form of official guidelines, and for other clinics to sit back and listen to what she is trying to say. I don't think that's a bad thing. Frankly I'm a little surprised and disapointed that some people here seem to have such negativity towards her. I am sure you have your reasons for thinking so however, but I don't feel her comments were negative and I certainly don't think that this is another example of adding fuel the the "IVF is Bad" vibe that the national press seem to have going.

I don't think she comes accross as being naive or that she seems ignorant of what goes on in other clinics (on the contrary in fact) and I am sure she has daily reminders of the emotional impact of IVF from both her successful and not successful patients. I would imagine the most crushing thing an IVF doctor has to do is tell a patient they can do no more for them. Imagine working in an environment where, maybe once a week, you crush someone's dreams? Not something I think I could do, despite the good that she must deal with as well. She operates at a fertility clinic does she not? Then I am sure that it is in her best interests to generate the best possible success rates she can. I just think she is making a point that success should not be gained at the expense of disregard for tailored care and pateint health. I didn't anywhere hear her say that ladies who require higher doses should not get them - only that her belief was that a lot of patients would achieve the same, or better response with a softer dose. She apparently seems to be an advocate of natural cycle IVF - I don't know enough about it to comment except to say, was not the first ever IVF baby a result of natural cycle IVF as this was all they had back then? 
I suspect it is the fear of yet another obstacle to success which is in our hearts. I'm pretty sure that nobody wants that.

As for saying it's our money and up to us and nobody should be allowed to interfere - well, yes to a degree I appreciate that and agree, but then if I were to say I wanted to waste my money shooting heroin up my veins I'm pretty sure very few sensible people would think it wrong to prevent me from doing so. Face it, we live in a society which has government bodies and charitable societies that try and tell us what and when to eat, smoke and drink so I think it hardly a surprise that someone someone somewhere has spoken out against unregulated use of a potentially dangerous medication.

Finally (and this is slightly off topic)


> ...having our chances reduced all the time by lower drugs and only 1 embie just makes things harder and when they are talking about increasing the age limit to allow 50 and 60 year olds to have IVF what are we to think than all they are trying to do is make money, as surely it is better for someone in the 30's like me to have twins than to allow a women in her 60's to have one child, as what kind of life is that child going to have they will end up as a carer in there early teens.


Firstly if you are only going to be replacing one embryo then why would you need high doses of drugs to stimulate more egg production? 5 or 6 would be more than enough to get a decent amount to ensure you get to ET stage for the majority of women. Unless you are a poor responder, or have embryo/egg quality problems, a lower dose would suit you just as well as a high one. 
It is not the HFEA that is talking about SET regulations not the clinics (although I understand some consultants have already embraced the idea)? SET has been proven to have good success rates in other countries and this is why it has been suggested for over here. I too, am against it because I don't think our fertility care here even comes close to some of the standards and successes of other countries that have SET yet, and the fact that NHS treatment is still such a massive lottery is not encouraging. However I would not presume to say it is better for I, a 30odd year old, to have potentially twins that an older person to have a chance at having a baby at all. Doctors and clinics in this country already 'self-regulate' over a certain age limit, it seems, as there is no national official guidelines for this either. I'm not sure whether press coverage of those who say IVF should be available for older people is a good thing or not in the whole "IVF is Bad" press hoopla but it does seem to me that the majority of IVF press is fairly negative anyway so I sometimes think perhaps we're best not to worry about what the press try and impose on the impressionable public and just get on with it.

C~x


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## Minow (Aug 2, 2005)

Once again however we have someone who has managed to respond to a lower dose. Please remember that some of us don't! It's not that I want a lot more eggs, just enough would be fine. To be on what my clinic use as the maximum dose and to only produce 2 follicles resulting in an abandoned cycle shows that the problem is that some of us do need high doses. On a lower dose I produce nothing at all so it's not that I want lots just enough. I know a few, good quality is what counts but I need some to be in with a chance. We are all individuals and each person needs their treatment to be dealt with on an individual basis. When will the government in this country learn that the "one size fits all" mentality does not work.

On the Geeta bashing front, I certainly do not agree. I personally felt she did not come over well in the interview. i am entitled to my opinion as you are to yours I have however stressed that I have not met the woman and so can not comment on her person. I can only say how I felt after the interview.The trouble with having an outside body set an upper limit is that they are not looking at individual cases. THey can only take the average and work with that which would leave some of us out in the cold.I am sure she does her job very well and to break bad news to someone is always hard whatever your job, this however does not mean that I should agree with her comments.

I feel this is an argument that no side can win. Indeed it is one in which there shouldn't be sides. We all want the same thing, a child and we should never loose sight of that fact. It is however the case that we will all have to take different routes to get there. Please God may we all make it in the end.

Minow x

By the way Caz, they have to leave it for around 6 days before they can monitor because it doesn't work over night. It takes several days for your system to absorb and get started. This is normal practice and there is nothing wrong with it.
OHSS can generally be controlled by drinking enough water. I think (and I am not saying in all cases but in many) where some go wrong is to not drink enough water. If they say 2 to 3 ltrs they really mean it and that is a lot of water to get through a day.
On the side effects, my clinic give you information and I personally would never take anything without fully researching it myself. the information is there and I do think that no matter what the level of reasoning or intellect an individual may have they should take some responsibility. For goodness sake they are hoping to bring a child into this world, they should be able to read and ask questions. It can not be the total responsibility of a clinic to take control of a patient we must all take some of it upon ourselves. If they do not then the chances are no matter what a doctor would say to them they will ignore it.


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## sho28 (Jan 10, 2006)

This one seems to run and run. A good thing I say to have a frank debate. This site is excellent for support, but that doesn't mean we have to be meely mouthed and pretend to agree with people to avoid offence, when you strongly agree or disagree with something.

I've made points earlier in the thread. I do however have to say that the general feeling is that Geeta didn't come across very well. I for one was cringing. Call it Geeta bashing if you like, but at the end of the day if Tony Blair comes across badly at PM question time he's fair game because he's paid by the tax payer and he's in the public eye. She put her opinions out there in the public arena and more than likely expected debate and criticism, I'm sure she can handle it. The fact is, I didn't agree with her and added to that I think she came across badly. I don't apologise for it, that's my opinion. She adovocates one main method of IVF (and before people jump on that I know she does others) Her opinion was clearly biased away from conventional IVF. That was obvious to me, someone who knows a bit about the subject but to the un informed, she made the industry appear as if it is full of unscrupulous Frankensteins pumping us all full of poison. In actuality most of us start at the bottom and work our way up, maybe with clomid,  onto IUI then to IVF which starts on a low dose and increases if necessary. That's responsible and probably as responsible as you can be in these cirumstances. 

You can't tell me that setting a maximum would be an inclusive method.


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## Caz (Jul 21, 2002)

> Once again however we have someone who has managed to respond to a lower dose. Please remember that some of us don't! It's not that I want a lot more eggs, just enough would be fine. To be on what my clinic use as the maximum dose and to only produce 2 follicles resulting in an abandoned cycle shows that the problem is that some of us do need high doses. On a lower dose I produce nothing at all so it's not that I want lots just enough. I know a few, good quality is what counts but I need some to be in with a chance. We are all individuals and each person needs their treatment to be dealt with on an individual basis. When will the government in this country learn that the "one size fits all" mentality does not work.


I'm not for one moment saying that not all women don't need higher doses. In fact, you will see in my post that I clearly acknowledge that a lot of ladies do need them and that it is right for them that do need them. For what it's worth, responding on low dose is not the Godsend it might appear to be as, in my case as well as others, I was in danger of overresponding (and developing OHSS thus having the cycle abandoned too) because it took such a small dose to stimulate me effectively. My own response to the drugs is not responsible for my opinion about the interview - It has just given me food for thoughts I had never even considered before.
To be honest, I had never given the whole issue of drug regimes and stimulation much consideration until I listened to this interview and I am kind of grateful for the BBC in bringing this discussion together as it is certainly sparked an interesting and intelligent debate. 
The government are not trying to make it one-size-fits-all, as far as I can see (although....give it time, eh, and they will like they do with everything else, I'm sure  ). One person (who may or may not have some influence on these things) has voiced an opinion that clinics should tailor drug treatment to the patient's individual needs. Basically Geeta was saying what you just said, just from the other side of the fence.



> On the Geeta bashing front, I certainly do not agree.


I'm just saying it as I see it. When I read some of the posts in response to the interview I felt that there was this one side those who beheld her in high esteem (which I can understand because anyone who has got a BFP will view their consultant somewhat like this) and on the other side those who, to my eyes, seemed to have more personal reasons to dislike her for matters not necessarily pertaining to the interview. Maybe my observations were incorrect but, as I say, saying it as I read it at the time. In any event I was left wondering whether there is some underlying issues there that I don't know about. I am not personally acquainted with her or with the clinic they said she practices at so am trying to offer a neutral opinion but I am sure some ladies here are and would be better judged to comment on her character overall.



> By the way Caz, they have to leave it for around 6 days before they can monitor because it doesn't work over night. It takes several days for your system to absorb and get started. This is normal practice and there is nothing wrong with it.
> OHSS can generally be controlled by drinking enough water. I think (and I am not saying in all cases but in many) where some go wrong is to not drink enough water. If they say 2 to 3 ltrs they really mean it and that is a lot of water to get through a day.
> On the side effects, my clinic give you information and I personally would never take anything without fully researching it myself. the information is there and I do think that no matter what the level of reasoning or intellect an individual may have they should take some responsibility. For goodness sake they are hoping to bring a child into this world, they should be able to read and ask questions. It can not be the total responsibility of a clinic to take control of a patient we must all take some of it upon ourselves. If they do not then the chances are no matter what a doctor would say to them they will ignore it.


Having done 6 IVF cycles I am more fully aware than I ever wanted to be on how the process works and what causes OHSS and how it can be avoided but I won't presume to be an expert on the matter to be honest. I am, after all, just a patient and have not had the appropriate medical training to really say if early monitoring would work. I do know that it takes 6 days to see any real _follicular_ response to the drugs but, my point was that would blood tests prior to this (say after 2 or 3 days) show if the response is within normal parameters or rising too steeply/not steeply enough? I'm just wondering if there is any benefit to earlier monitoring? This might well be of benefit to both over responders or poor responders in the long run. Perhaps something worthy of debate? Also, I wanted to make the point that a "standard protocol" drug regime doesn't work either and yet it still seems to be something clinics (from what I can tell through FF at least) adopt, tailoring only after that first scan/blood test or on subsequent cycles when they get to see exactly what is physically happening. I realise that there is always going to be an element of guesswork with new cyclers but am wondering if at least some of this might be eliminated with care. For something that seems as cutting egde as IVF certainly has become, it still feels that perhaps it is a little stab in the dark at times. Then again, the whole process becomes stab-in-the-dark during the 2WW!

I'm sorry to say it, but it's a sad fact that some people don't pay attention to the details even if we both think they are stupid not to and, yes, they still bring children into this world and, maybe they shouldn't and maybe they should be spoon fed the risks (and maybe, like me, you think anyone who doesn't read the small print is a fool) but they still exist and, sadly, must still be catered for. Even more in this blame and sue culture in which we live. Our sophisticated Western society has advanced to the point where, sadly, when things go wrong, it is always somone else's fault. I don't like that at all but there it is. 
Alas, all the while we are not in complete personal control of this aspect of our fate we will continue to have our abilities more closely questioned than out fertile counterparts who are able to knock babies out without so much as a blink of an eye. Again, sad but true and it will no doubt never really change. I have often wondered it perhaps everyone ought to undergo a parenting test before they are allowed to reproduce. Nothing complicated - just simple questions like "What would you feed a 2 month old? a: Milk, b: Whatever we've got left in the fridge that hasn't gone mouldy, c: Nothing until the little b*$!*%$ stops screaming" ... you get the idea! I often wonder how many people out there would actually fail that. 



> You can't tell me that setting a maximum would be an inclusive method.


No, there are dangers in setting maximum and mimimum levels and it could be that a maxiumum dose turns out to exclude certain people from being able to have treatment and that would be very unfair indeed. But then I could argue that there are maximum and minimum doses of radiation that people are allowed to treat cancer and we would not think to question the maximum dose just because patient A needs more to get the required response because we know it is as dangerous to administer it as to allow the cancer to flourish without it. You might say this is not the same thing but in principle it is. Follicle stimulating hormones can cause horrendous side effects (and in extreme cases, death) if not administered with care and monitoring. I would not propose to set maximum levels per se. But is it wrong to want to set guidelines for clinics to ensure effective and honest monitoring is used and that drug doses are given at the mimimum required to get an acceptable response?



> if Tony Blair comes across badly at PM question time he's fair game because he's paid by the tax payer and he's in the public eye.


Ah we can agree on that, for sure! I hear he's a mean guitar player but I can't think of anything else nice to say about him right now. 

C~x


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## Mrs CW (Jul 12, 2004)

Quote: Dr Hammond made a good point in that most clinic self-regulate but....well, see above. Clearly there's a duty of care to the patients that is being missed in some cases because we still hear about OHSS an awful lot around these parts.

I agree in this respect. I am by no means stupid and I was given a serious talk on the side effects of treatment before I started which of course I believed to be comprehensive - why wouldn't I? - and signed to say so, which also gave me the impression that I'd been told all I needed to know. I had gone as far as asking alot of questions about single embryo transfer (DP was worried about twins) and ovarian cancer, we got lots of stats and info on these issues. However there was no mention of OHSS nor its prevention by drinking water, and my E2 levels weren't monitored, my clinic only did scans. I got mild OHSS on a relatively low dose, I had no idea I was at risk and the menopur leaflet doesn't tell you anything other than the usual sort of disclaimer info that most drugs have about rare circumstances, over reactions, etc known as OHSS. I read it similarly to a paracetamol leaflet saying in rare circumstances you may have a reaction to this drug.

My OHSS was handled well by my clinic once I had it, and I learnt how to control it on subsequent cycles and how to negotiate with my clinic about my dose to get the right balance of stims and low risk of overstimming, I only discovered FF at the time of the onset of OHSS (researching my symptoms on the internet) - and I ended up in casualty. The point of my experience here is you don't know what you don't know -having had a very thorough discussion with my clinic, I thought I'd been told everything, I researched the things that worried me and satisifed myself I was prepared for the risks, so didn't feel the need to research much more. I don't think you can judge people who don't happen to have had access to information they didn't know they needed too harshly.

Claire x


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## Minow (Aug 2, 2005)

Caz

I totally agree with you that we have been able to have a sensible and intelligent debate about this topic. Sadly earlier some people seemed to think it wasn't but I hope we may have proved them wrong. It is so nice to get a response from someone who has clearly read what others have written and given a considered opinion. Unfortunately sometimes people read what they want and miss points out. Clearly this is not you and I thank you for that.

One thing that I think has become very obvious from this though is that different clinics do have very different approaches to treatment and to how much information they give their patients. I can not comment on anyone else's treatment, clinic or consultants and so can only speak from personal experience and I am truly grateful that my clinic appear to have been very good at keeping me very closely informed at all stages of all possible side effects and outcomes. Now maybe this is because I am a very questioning person, I read a lot and always want to know everything. Whilst I appreciate that my consultant is the expert I too can read the scientific papers and can research for myself and maybe I do this more than some (ok, so call me a control freak!   ). As I say I can only comment on how I have been dealt with, maybe my clinic deal with other people differently - something we can never really know I guess.

Those of us on this site have found a great resource information. The countless couples going through all of this that come on here and share information can be a great help. We should also be careful to remember though that of course we are all individuals and as a result whatever we learn on here we should always run past our own clinics and specialists as each case is different.

As in any situation in life we will at times have different opinions on all maner of topics. It is good to discuss these, to try and see things from other people's point of view and to broaden our knowledge and understanding whilst realising that it is not always a case of who is right and who is wrong. It has been great to discuss this topic with you and once again thank you for your intelligent "conversation".

Ceedubya -  I am sorry that you ended up in casualty and I agree with you that it is very hard to know what you don't know (I had a book once called "things you didn't know you didn't know"  very amusing  )
THe only thing I would say is that it is probably the control freak side of me again here, or just my nature but those (Quote) "usual sort of disclaimer info that most drugs have about rare circumstances" always interests me a lot. Whether it be paracetamol or Menopur, eye wash or lemsip I always read it and try and find out what it means. They may be rare (or as we know in the csse of OHSS and Fertility drugs not that rare!) but are always worth researching more. It is those rare reactions that can be the worst. If I had any advice to pass on to anyone, and , I know, Who am I to offer advice? Well no-one so as always ignore me if you want, but it would be, read every single word on the leaflet and if you don't fully understand it or have any questions about it then ask. As you say it is hard to know what you don't know but we also can turn that round and say that the consultants may not always realise what we don't know so their comprehensive, serious talk may unintentionaly miss things out or gloss over things. Despite having been on this road for years (far more than my info shows but I would run out of room if I put it all on!) I am still constantly researching it. Every time I take a drug, even if I've had it before I research it again to refresh my memory. I find out who manufactures it and read what they have to say about it. I look it up everwhere I can. In my mind you can never know enough of too much, and if it brings up any questions at all, especially about safety, I question it, no matter how small the risks may be.
Please don't for a minute think that I am getting at you. My comments above were generated by what you said but are for all to read.

Once again girls we have had a good discussion. I wish everyone all the best in their treatment and may all our dreams come true.

Minow x


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## Mrs CW (Jul 12, 2004)

Minow I take your point but it doesn't actually say on the menopur leaflet that to avoid OHSS you should drink water and eat protein......basic advice that clinics could give you but not all do. I was only given this advice when it was too late. You can read and know about rare reactions to drugs but to be honest you can usually assume they're not going to happen otherwise you'd never take any drugs at all. And you'd be scared right off IVF. I had to assume some risk was possible as it is a medical intervention, there's risk involved in all these things. I think that's what most patients have to do, accept some informed risk, and assume the worst won't happen, even though they know that sometimes it does. In taking on IVF I accepted a possible (though, as far as I could tell, unproven,) risk of ovarian cancer, and a slight risk of OHSS, along with slight risks of infection from EC and HSGs etc etc.

My clinic gave me a very comprehensive leaflet about tx which I read thoroughly. It said that in rare circumstances, people can get ohss, _they would inform me_ if I was at risk of this and tx would be adjusted accordingly. I don't think it was unreasonable to assume then that I wasn't at risk, they are supposed to be experts and if I could diagnose my own fertility problems and what my FSH meant I could have prescribed my own menopur dose... you get the gist. You have to trust them to a certain extent. Since I started on a very low dose of menopur I think my symptoms were a surprise to everyone including my medical team, especially as I got them on the day of ET........it was by internet searching and popping into chat on FF for the first time I found out what was wrong with me. My clinic's out of hours number wasn't working. Great that I found FF but not everyone has access to the internet nor will they necessarily find the right info at the right time. It's OK to plan ahead and do your research but all my research and advice from my specialists was that I was not at risk - go figure! Anyway I don't think I'm alone in having had this sort of scenario, judging by many posts on here.

Internet searching for information can also be very unnerving, and sometimes not very easy for non-specialists to interpret the data correctly. Many people give themselves major medical scares by reading up on information and I have often stopped myself reading any more as I'm also intelligent enough to know when I've reached my own limits of understanding. I'm not arguing that people shouldn't do their research but I just think we need to be a bit more sympathetic towards people who don't find out some of the scarier aspects of tx until they are actually undergoing it.

sorry to digress a bit from the geeta debate but it is linked, to Caz's point about variable standards of tx and information. 
I have to say that since everyone seems to respond differently I'm not entirely sure what help a limit to dosage may be, as overstimulation can occur in low as well as high doses. As for upper limits, I think low responders would still be in with a chance - I'm sure someone working in the medical profession will tell me if I'm right but I believe that under medical supervision you can be prescribed any amount if they think it would work for you and not put you at risk. As it is, according to the leaflet that goes with menopur, if I remember rightly, the drug didn't appear to have been developed for IVF, the applications listed were all about adolescents with hormone imbalances and cyclogest information leaflet talked alot about PND.... Instead of clomid I was first prescribed a similar drug which is not normally prescribed in the UK, my clinic had them imported from Italy. So I think most things are possible. Which then begs the question whether an upper limit is valid if consultants choose to use the drugs according to their own assessment of the patient. Careful and considered use would be more valid, but then hey, that's what I thought I was getting.

Claire


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## Minow (Aug 2, 2005)

I'm sorry Claire that it would appear your clinic were not so good at warning you about things in advance. Maybe I'm a pesimist but I always want to know the worst case scenario and so when I heard about OHSS, even though they said they thought I was very low risk at the time, I wanted to know what the symptoms would be and what I could do about it.
I guess as your symptoms were are surprise to everyone owing to your low dose it does just go to show that there are no certainties in this. This is why the treatment has to be allowed to be flexible. THe fact that you clinic's out of hours number wasn't working has to be a mark against your clinic. 
THe main thing for you though I guess is that you do now have a little one. Whatever you went through was worth it.
We all approach this differently. It is good to see that for some like you there is a happy ending....for others like me this long road continues!
Mx


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## Lol (May 19, 2004)

I didn't hear this debate and while do agree that high doses of drugs aren't necessarily more effective as for poor responders as it sometimes doesn't increase the number of eggs the dose should be the consultant's decision not the regulators.  Patients pre-disposed to OHSS can end up with OHSS on the lowest doses whereas poor responders can be on 600iu and still end up with 4-5 eggs.

The reason I had to post is that as Holly said, I don't appreciate inflammatory statements about cancer.  This is stressful enough without someone talking about a link with cancer that is unproven and is probably not linked to high doses.  Any studies done have said that the higher risk of female cancer among the infertile is inconclusive and if it does occur may be due to the fact that their hormones are out of kilter on an ongoing basis not just during IVF.  My mother is now even more worried about IVF and keeps telling me she doesn't want to do it anymore because of this debate.  It just makes life harder for everyone dealing with infertility by worrying friends and family even more.


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## Minow (Aug 2, 2005)

Lol
I don't think anyone mentioned cancer in a way to make this any harder. It is true that we must be aware of any possible implications - without this how can we make informed descisions. However maybe this will help set yours and your mum's minds at rest.
http://news.bbc.co.uk/1/hi/health/2079831.stm
Minow x

_This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.UK or its owners are not responsible for the content of external internet sites_


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