# Different Protocol Experiences for Poor Responders



## Apple Orchard (Sep 15, 2008)

I am just wondering what experiences other people have had with IVF 

I am 37 (so don't really qualify to be here, but I couldn't find the poor responder section, sorry) with an FSH of about 15. 

I recently had IVF. I took Buserelin for three weeks before starting to stimulate. On the day I started to stim, I had to have a cyst removed. I was on Buserelin for three weeks before starting because the lining of my womb was not thin enough. After two weeks my Buserelin dose was doubled so my lining would be thin enough to start stimulating. I was on Puregon for 16 days before EC - 200 iui and then was upped to 300 iui because I wasn't responding. The consultant told me that it doesn't make any difference to take more Puregon (I had asked if there was a possiblity the dose could be increased above 300 iui). They only managed to retrieve one egg, but that egg managed to fertilise and the embryo was transferred. Sadly, it didn't work.  

I am just wondering what to do for the next time. I am not sure whether to do the same again or whether to try something else. The consultant told me that if there were no eggs, there is not much that can be done. He said it would be like going to the bank and asking for money when there isn't any. 

What other things have people tried that have been successful? We may only have one more shot at this, so we are desperate to make it work this time.  

To add to the complications, I have an underactive thyroid and I take 200 mcg per day. 

Any help or advice would be very much appreciated. Thank you.  

Cranberry


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## Hez (Oct 6, 2006)

Hi Cranberry,

I tried both the long protocol, down regging with buserelin, and 450 gonal f.....I got 3 eggs from 13 follicles, the eggs were overmature so didn't fertilise and no transfer.
I tried a short protocol 2nd time with buserelin and 450 menopur taken at the same time for 2 weeks, no down regging. I got 2 eggs both overmature, 1 x fertilised  and went back but BFN.
This time I had a short protocol  ( antagonist  ) , no downregging at all, no buserelin, just went straight to stimming, when follicles were 12mm I was given orgalutran an antagonist to prevent ovulation. I didn't get many eggs I have high FSH and low AMH so am a poor responder. I did get 2 x grade 1 embryos transferred and I have just got an early BFP. I know its early days and I have a long way to go yet....but this was our last attempt with my own eggs, we are actually booked for donor egg IVF next year.
Don't give up there are so many different ways your consultant can adapt and twique your protocol to get a better result.
Its quality over quantity, you hear of ladies getting 16 eggs and only 2 fertilise. You only do need 1 good egg and 1 good sperm.
Good luck,
Hez x


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## Apple Orchard (Sep 15, 2008)

Congratulations on your positive. How amazing! I do hope all goes well and that the little one hangs in there.  

There are so many different things that you read and it seems that it is such a lottery. I have a couple of books that I am going to read and I am just going to be healthy until we can try again. I know that if it doesn't work this time, I would like to try again, but there is the money and the fact that my husband is a lot older than me. We are really praying that whatever way it happens, it works.

Thank you again for replying with your story. I will keep my fingers and toes crossed for you.  

Cranberry x


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## Apple Orchard (Sep 15, 2008)

Hez,

I hope you don't mind me asking, but how many eggs did you get this time? 

I am very keen that our clinic does something different, even though the consultant seems keen to do it the same way.

I hope all is still going well with you and your BFP. 

Cranberry


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## Hez (Oct 6, 2006)

Hi Cranberry,
I had 8 follicles originally, but only 2 were the right size at retrieval, the consultant managed to find a third follicle, and in total, 2 eggs were retrieved, both were icsi'd, and both fertilised, and were grade 1 (7 and 8 cell) at day 3 transfer.
There was never any question about us cancelling , I know some clinics cancel retrieval with so few follies, but we were paying privately, and decided to go ahead, no matter what. In fact our consultant didn't suggest cancelling , with my FSH of 12.3 and AMH 0f 5.63, this was the response he expected , we were only given a 5% chance of success....I know its early days, I miscarried last year at 10 weeks, following a natural BFP....but we really didn't expect to get this far.
I am just     we hang on to these and that we don't come crashing down like a tonne of bricks.
Luv Hez x


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## Apple Orchard (Sep 15, 2008)

Thank you for your message. I think a lot of clinics do cancel if there aren't enough follicles. I'm glad yours didn't. Ours would have cancelled if there had been less than 2. We had what they thought was 3, but I only got one mature egg. 

We too have been given a 5% chance of success with my own eggs. It is amazing to get as far as you have - long may it continue. I really do so hope that you manage to make it all the way through. What a miracle that would be!   

I emailed the consultant yesterday and asked about the flare protocol (that was before I had seen yours) and he has said there is NO conclusive evidence that it makes any difference, and as such, they don't offer it. They only offer the long protocol. I am rather surprised. He said it was something they used to do about 18 years ago and it is now coming back. I really don't understand it at all. Do you know of any clinical trials that have been done using your method? The flare protocol is different to the one you used, but I feel reluctant to email him again with your protocol. If the clinic offered your protocol, surely he would have said? 

Thank you again.

Cranberry xx


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## Hez (Oct 6, 2006)

Hi ,
I don't think the flare protocol is good for the poor responder, or the older lady, something to do with the LH surge can be detrimental to egg quality.
I would check out Dr Sher at SIRM website, ( Sher Institute of Reproductive Medicine) He is the leader in the field in the States....you can actually post him questions on the board and set up telephone consultations. He will give you loads of info on the protocols for poor responders. You can then go armed to your own clinic with info. I did !!!
Me and my Dh were considering SIRM Vegas for a while but in the end stayed local due to costs.
Hope this helps 
Luv Hez x


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## Apple Orchard (Sep 15, 2008)

Thank you so much for your information. Is your clinic completely private or does it do NHS as well. Are you an NHS self funder. We are and the nearest private clinic is over an hour away and costs about £2500 more than the one we are at. 

We actually have a telephone consultation with Dr Fisch from the Sher clinic on Friday evening. I will ask him lots of questions (what questions did you ask Dr Sher), but I am not sure that my clinic will try anything different. My consultant  seems rather reluctant to vary what happened last time. Basically, he thinks that if my eggs are not there, nothing he can do will make them better. 

I think to go to the SIRM will be too expensive, although they haven't told us how much it will cost. 

I feel really stupid that I asked about the flare protocol. Next time, I should just wait and then email when I have more information - although I thought I did! I am reluctant to email him again as I have emailed him a lot! When we went for our follow-up appointment, I emailed him a whole list of questions and information. He didn't seem upset, but just said there was nothing they could do to give me more eggs. About the flare protocol, he said it wouldn't give me any more egss. 

I am feeling lost now and don't know what to do. 

Thank you again!

Cranberry xxx


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## Hez (Oct 6, 2006)

Hi Hun, 
You shouldn't feel frightened about asking  your consultant questions, IVF  is probably one of the most important decisions you will make in your life, you are paying for tx and should be able to ask as many questions as you like.
We are privately paying, with The London Womens Clinic Darlington, they have been exceptional, so much so the day of embryo transfer I gave them a thankyou card and a little present not knowing if tx had worked. I felt that regardless of the outcome the level of care we had received was beyond our expectations and far more superior than the tx I received at the hands of the NHS ( I have had 2 prev NHS cycles that were managed appallingly).
Best of luck with your consultation later in the week hun.
Luv Hez x


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## Apple Orchard (Sep 15, 2008)

Thank you for your message. You are so lucky to have had great treatment. I do wish you lots of luck and positive energy with your BFP.  

I have just spoken to the nurse at my clinic and she said that the antagonist protocol is only offered to women who have a high number of resting follicles. The reason is because research has shown that you can get one less egg with the antagonist protocol and if you only have one egg to start with, you will then get none.

I have just put on another post about this and hope that lots of people will reply! 

Thank you so much for yours. I really appreciate your time.

Cranberry xx


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## Hez (Oct 6, 2006)

Hi, Apple Orchard,
I read your post , and while not wishing to sound rude, I am not a consultant in fertility, but the nurse you spoke to is talking twaddle!!
I know this because, I was placed on the antagonist protocol before an antral follicle scan was carried out.....my clinic had no idea how many resting follicles I had ....the antagonist protocol is for the older poor responder and research shows better quality eggs are produced albeit there may not be a great yield.
Hope you get better advice form SIRM this Friday.
Luv Hez x


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## Apple Orchard (Sep 15, 2008)

Thank you for your reply. I have to say I am finding all this very difficult. There is so much information out there and for every article you find saying it is a good protocol for people like me, there will be someone else who says it isn't. I have read many articles saying both! I have no idea. I will be interested to hear what SIRM has to say.  I will let you know!

Thank you again.

Cranberry xxx


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## Juicy (Jan 23, 2008)

Hi Cranberry

I second Hez re what that nurse told you....what?  what on earth is she talking about?  I am a poor responder aged 36, 14 wks pregnant after my second IVF at the Lister - the best clinic in the UK for poor responders.  Please don't spend any more money where you are - if attempts are precious, move - you won't regret it.  

I had 2 antagonist protocols, the second using a protocol the Lister have developed for poor responders which incorporates 5 days of clomid at the start.  I had 7 eggs retrieved and had 6 embryos, despite a very low AMH and fsh at the start of the cycle being 11.5.  So don't lose hope, go somewhere you will be treated by someone who's interested in getting you pregnant and has the skill to do it.

The poor responder thread is very busy and informative (lovely ladies there) and is in the 'IVF General Chit Chat Section' - you'll find lots of other stories of people with low chances who've succeeded there and lots of advice. 

I appreciate you may be in a location where access to the Lister is difficult  but it is a false economy to spend less money somewhere where your chances are much lower.  Sorry your last attempt failed, I know how hard it is but don't lose hope.  The hassle of changing clinic and the hassle of travelling or finding accommodation near a clinic who will treat you well is all worth it to get a BFP

good luck  

Hez, congrats on your BFP, hope you are well and enjoying it as much as I am (despite exhaustion!)


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## Hez (Oct 6, 2006)

Hi Juicy, 

Lovely to meet you and many congratulations on your BFP ....I read your posts at the beginning of this cycle and must tell you it was your success that inspired me and gave me the    attitude I so desperately needed to go thriugh this my final attempt with my own eggs....so wanted to say thankyou .
I wish you a happy and healthy pregnancy.
Luv Hez x


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## Juicy (Jan 23, 2008)

wow - really Hez?  That's wonderful, so glad if anything I said helped, thank you so much for saying so.  I've had great support on this site, it's been a godsend and a mine of info.  I'm even more delighted then that you're pregnant!!  well done you for sticking with it, and giving it another go. How fantastic that you've got there!  

How are you feeling?  ecstatic but anxious, like I was I guess!  waiting for first scan is tough but you WILL get there, sooner than you think probably!  

thanks for the wishes, I am having a great time so far - had trouble with my asthma which has got a lot worse but who cares really, i wouldn't swap any of it

Cranberry, when I was debating having a full ivf cycle at Create (straight after I'd had the natural cycle there), an FF called SJC nagged me to change clinic to the Lister, hence I feel it's worth saying it in forceful terms!  There is an awful lot of reading on the PR thread as it moves so fast but if you spend a couple of hours going back through posts, i guarantee you will be inspired as Hez and I were x


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## Apple Orchard (Sep 15, 2008)

Thank you for your reply. I really appreciate your effort in telling me your story. 

Congratulations on your wonderful news! I am thrilled for you that you are pregnant. How amazingly exciting for you. No wonder you are on cloud 99!

I am definitely going to look around and see what we can do. I didn't know the Lister is best for PR. I would have posted this there, but didn't know where the PR bit is. Now I do, I will go and have a look. I will spend however long it takes to get all the information I need to make an informed choice. I really don't understand how my clinic can say that. I have read both positive and negative for it - on this site all positive! Many people seem to have had success with a different protocol. I really don't believe one size fits most. How can it possibly be that way? 

I am interested in the protocol you, Juicy, had at the Lister. I will look into it. 

It is a precious attempt for us as it may well be our last. Do you think it is possible to do it there as we live in Scotland? Do you happen to know how long the waiting list is? I have looked around for league tables of success around the UK, but so far no luck. I would be interested to see where my clinic falls in something like that. 

I have not had an AMH test done as the consultant said it wouldn't give any more information than the FSH test, so I don't know what my ovarian reserve is like. I had an FSH test done on Monday and will find out the results on Friday. If it is too high, I guess they won't go ahead anyway. Last time it was 15.3, hopefully because I had a reasonably normal period, it will be better.  

Thank you again, very much for your inspiring story. Good luck with your pregnancy. I am sure you are savouring every moment! 

Cranberry x


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## Juicy (Jan 23, 2008)

Hi Cranberry

I just looked through your posts and see you were being treated at Edinburgh RI but have also considered going abroad. If you are interested, I recommend you check out the thread for the Jinemed hospital in Turkey, where Miranda7 was treated, and Bugle and Laura B who were all poor responders and all pregnant (well, Miranda's son is 4 months old now). They all speak very highly of the treatment there, and you can have a holiday at the same time. It was going to be our next port of call as after three treatments, the idea of doing it on holiday was very appealing - trying to work in a stressful job was no picnic!

here's a link to the Turkey board which has a main Jinemed thread at the top and other threads too http://www.fertilityfriends.co.uk/forum/index.php?board=357.0

Please don't let your doc convince you that being a poor responder means curtains for your chances of having a family. It IS worth persevering as far as you can People do respond differently to different drugs and protocols, and your fsh has hardly been disastrous at 15 - mine wasn't far off that and plenty of people have succeeded with fsh of over 20. A decent clinic would use the first cycle as a learning experience and try something different the next time but sadly not all clinics are interested in treating poor responders - it's ok, just find one that will! I believe Manchester Care is good as well as the Lister

To give your egg quality a boost, you may want to try a supplement called dhea. There is a helpful post about it on this page of the current PR thread
http://www.fertilityfriends.co.uk/forum/index.php?topic=165105.240

I took it for three months before my cycle and had a much better fertilisation rate - up from 33% to over 90%, which was fantastic as we then had 6 embryos to choose from.

If you want to send a member a personal message about anything, click on their name, that will take you to their profile page and there's a link there to send them a personal message

good luck with your reading!
x


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## Apple Orchard (Sep 15, 2008)

Thank you for your reply. The more I read, the more I think we are in the wrong place. The doc has been really lovely and gave me the meds for much longer than normal without charging, but I want to do something different next time. I asked him about DHEA and he said that it wouldn't make any difference using my own eggs. I have read SO many stories about people taking it and it making a big difference. I read one of the articles from the link on one of the threads and it said that five PR took it and all got pregnant. I know five people don't represent a huge trial, but it is promising. I feel we are left without much of a choice. If only he would try something a bit different and give me the okay to take DHEA. You would think he would like to have a success with a PR. Surely that would be good for the clinic? Anyway, at the weekend, would it be okay if I PMd you and asked you some questions regarding your treatment. I am working tomorrow and it is a big day! It is all a minefield and I so want to do the best thing for us. Thank you again. 

Cranberry xx


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## Juicy (Jan 23, 2008)

Sure Cranerry, PM me any questions.  About dhea, I just think that given it's a naturally occurring substance in the body, which we need for healthy function, taking it is so unlikely to do any harm that any doctor who advises against it is just being needlessly stubborn.  It is approved as a supplement by the FDA in America who are notoriously strict so while it obviously can't offer any guarantees - what harm can it do?

Certainly, at the Lister they have no issue with it -in fact quite the opposite.  

I'm glad your doc has been lovely, I do feel though and many many FFs would agree, that with the emotional and financial investment we make in every cycle, we have to be sensible consumers and decide where to be treated by our heads as much as our hearts. 

have a good day at work tomorrow - tgif!

x


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## Apple Orchard (Sep 15, 2008)

Thank you for your message. I had an FSH test done on Monday (3rd Nov) and it has come back at 21.4. I can't believe it has gone up so much from April (it was 15.3 then). I don't think the clinic here will do it with such a high FSH, so in a way that solves that problem. Perhaps no clinic will do it with that FSH. Is it possible that the Puregon is still in my system? The last time I took a Puregon injection was on 20th September. Since then I have had two periods. I'm guessing not, but I really don't know. I will PM you over the weekend. Thank you for saying it is okay! 
Cranberry xx


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## Little Me (Aug 29, 2008)

Hi Ladies,

Juicy & Hez- Lots of congratulations on your pregnancies, I hope you are both happy and healthy.
It's not often I actually look at different threads these days as I am a regular on the Poor responder thread and we all know how us ladies     !!!
You have both given me some hope as I have just started my first IVF at the Lister in the Antagonist Protocol, taking the Pill till Jan 9th then baseline scan then prob stimms about 17th Jan  
It's nice to see success stories and I wish you both lots of luck  

Love
Anne


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## Hez (Oct 6, 2006)

Hi Anne,

Glad you found us, I have to be honest, Juicy's success gave me the inspiration and hope that I needed to give it one last try with my own eggs before going on to donor egg.
It just goes to show you shouldn't give up.
I know its early days still and I am constantly worried that things may go wrong, but we got this far with only 5% chance success......I think my wonderful consultant Mr Ashour at Darlington LWC is a tad sparing with his success rates....he should give himself more credit !!! THe man is a miracle worker 
Any way you have a better AMH than I did , mine was 5.9....and whilst my response wasn't brilliant, my consultant didn't expect more than we got. He was honest with us but he still gave us hope and you can't ask for more than that. He never made us feel like failures and we knew that all that could be done would be done.
We only got 2 eggs, but all thanks and credit goes to our embryologist, Meringeese who did the most important part and ICSI'd both, creating 2 Grade 1 embryo's. 
Whilst I think a lot of IVF is down to luck ie how we respond to the drugs, because there is no control over that. Once eggs are retrieved its then in the hands of the embryologist and ours was amazing!!
I know I am singing my clinics praises.....but to be honest I felt like this before we had the BFP, the level of care and support we received from everyone through this treatment was top class.!!! 
As far as the antagonist protocol is concerned Mr Ashour did say this is the better protocol for the older poor responder and whilst you aren't likely to get a lot of eggs they are better quality....and thats what counts.
I wish you all the luck in the world, and if there is anything you need to asy just give me a shout.
Luv Hez x


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## Little Me (Aug 29, 2008)

Ah thanks Hez- yes, I guess it's quality and not quantity that counts.
I'm convinced that there is one good egg there somewhere!
Did you take the Pill first?

xx


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## Hez (Oct 6, 2006)

Hi Anne ,
Yes I took the pill first, for a month and a few days, just so baseline scan didn't fall on a weekend. I was the on 450 iui puregon ( or should I call it pure gold ) cos its expensive!!! Then I was given orgalutran, to prevent ovulation for a couple of days before the trigger shot.
Since egg collection I've been on a cocktail of cyclogest (progesterone), gestone (progesterone injections), folic acid, aspirin, progynova ( oestrogen HRT)dexamethasone (steroids) and clexane injections ( heparin). The last two are to prevent miscarriage in the event of immune issues high NK cells.
I also ate brazil nuts like a loony drank milk like a cow and pineapple juice during stimms. I used a hot water bottle as well during stimms to help the follicles grow!! Didn't do any of this on prior cycles, so hoping it helped 
Luv Hez x


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## Little Me (Aug 29, 2008)

OOooh I love pineapple juice  
I am finding that my mood on the pill is variable to say the least- one minute I am in tears then next I could kill.....is that a normals side effect?
Oh and really sore boobs  
Thanks Hez
xxx


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## Hez (Oct 6, 2006)

Hi Anne,
Difficult to answer that, my moods are like that without the pill  . My poor Dh is oftn running for cover.
But I guess the pill is a hormone pill I think 50:50 oestrogen and progesterone so it will send you doolally.....so I wouldn't worry too much. The good thing is it doesn't shut your system down completely....its a mild down reg so that when you start the stimms your not trying to wake up the dead so to speak 
It means you should respond better than if you had deen completely down regged.
Luv Hez x


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## Hez (Oct 6, 2006)

p.S.
Anne ,
The sore boobs are normal with the pill, its fom the progesterone in the pill and boobs get sore.
Hez xxx


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## Juicy (Jan 23, 2008)

Hi Hez, Hi Anne

Hez, glad all seems to be ticking along well - how are you feeling?!

Anne - nice to meet you, I still dip into PR thread regularly to see how everyone's doing so feel like I know you a bit - brilliant to see two pregnancies on there the past few weeks.  It moves even faster than ever since I got pregnant! 

I wish you lots of luck for your cycle - I found the pill a nightmare too, my boobs killed and that's why I'd never stuck with it before.  I felt 'not myself' on it but as soon as you come off it, hey you've got stimms to look forward to so hang in there!  

Cranberry if you're looking in, I must apologise as just realised I haven't responded to your last PM - I will remedy that today, I'm so sorry - my brain is truly addled from my online activities attempting to christmas shop and source maternity clothes that I like!!

xx


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## Hez (Oct 6, 2006)

Hi Juicy ,

Nice to hear from you, glad  to hear you are doing well. I haven't started xmas shopping yet...gonna brave the shops tomorrow I think with Dh.
I'm feeling fab, no sickness just tired and hungry all of the time!!!
Just had a scan today and bubs measuring 19.6mm so spot on for 8+4 weeks.If I didn't know better I wouldn't believe I am pg,  In fact I still don't believe I am!!
Luv'n'  
Hez x


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## Little Me (Aug 29, 2008)

Thanks Hez- My poor DH sent me flowers to work yestersday- god knows I did nothing to deserve them bless him- he was trying to cheer me up!
Glad your scan was  good  

Hi Juicy- I would say "not myself" as a good description  
Poor DH  

xxxx


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## elinor (Jul 4, 2008)

Hi there people!

Cranberry - I was reading this and just noticed you are in scotland - me too. I have had treatment at ERI (short protocol - best response - March 2006, brief BFP, lost at 6 wks 3 days; big break (no donor sperm in Scotland!) then May 08 long protocol - poor response. Have also tried elsewhere  - MFS in Manchester was fine (and had donors), visited the Nuffield in Glasgow - no donors and didn't get a great vibe, and most recently GCRM. They are in Glasgow and are definitely the best clinic I have gone to. They do AMH testing (ERI just wanted to know I had an FSH under 10 in the past year - didn't even test the months I had cycles). My results in Manchester indicate to me that my response varies much more depending on my FSH at the start of treatment (mine goes up and down by quite a bit) than depending on the dose of drugs. AMH might not tell ERI much about what to do, but that might be because they have a 'one size fits all' approach!! I found it quite frustrating trying to talk about other options with them. GCRM also do antagonist protocol - it didn't work for me, but they have been much more interested in the details of how I respond and have talked through what we would change next time, and the detail of why... I am down for another go at ERI (they do at least have decent results for 40+), but if that doesn't work (I am insisting on short protocol - after all, I am paying for it!!) I would happily go back to GCRM. I realise I can't carry on indefinitely, and my main reason for staying local is the travelling - staying in my home feels so much better than elsewhere and sticking to the healthy eating is easier if you're at home etc.... GCRM also have evening appointments, see you on time and managed to fit me in when I had run out of meds (counting and remembering what was in the pile by my bed when i was staying over at a friends was clearly beyond me) - with less than ten minutes waiting. It isn't handy to get to by public transport, but entirely possible, and they were brilliant. Just thought I'd let you know - they also have the best results in Scotland (3rd in UK currently) - but had no difficulty with the idea of treating me - I am wary of 'great results' when you read on sites like this that some of the 'best' clinics don't treat women with FSH over ..., women who have responded poorly..., cancel cycles if fewer than y follicles develop - GCRM treated me with no problems despite poor AMH, a not great history and few follicles - so their results mean something (in my book). I am not on commission, btw, I just have been to more than one place and think it is important to highlight good practice.

Anne - I have found you here too!

Hez and Juicy - congratulations - can you both be my inspiration?

anyone else out there (or lurking) hope 2009 brings you your heart's desire.
best wishes
Elinor x


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