[Kasia]

Hi everyone,

Just wondered if anyone could help me. We have just had a failed IVF/ICSI - retrieved 3 eggs but all immature, so none fertilised. I stopped taking drugs on 16th July and had AF on 25th July.

Since then, I have felt a bit better than I did when I was taking the drugs (I suffered badly from the horrible side effects). However, I have not ovulated yet and normally get a positive OPK between CD 11-16. Moreover, I am having horrible hot flashes - far more than I ever did when I was down-regulating (for 5 weeks :-( ); and feeling pretty unwell generally - lack of appetite etc. I am scared this whole process has plunged me into the Menopause! At the very least, it looks like this cycle is going to be anovulatory :-(

Can any of you tell me how long it took them to get back to 'normal' after a failed IVF attempt?

Many thanks in advance!


Kasia

 

[Ellie.st]

Dear Kasia
Sorry to hear about your BFN.  I am 41 and I didn't ovulate in first cycle after my BFN.  I also got hot flushes  which started during the treatment (I had never had them before) and continued afterwards on and off for a few months, although I didn't have the other symptoms you describe. Like you, I was also really worried that I had brought on an early menopause given my age.  However, I am very pleased to report that ovulation returned to normal during the second cycle after BFN and has remained very regular since then, and the hot flushes have now gone. Hopefully you will find the same.  Hope you are feeling better soon.  Ellie.

 

[Kasia]

Dear Kasia
Sorry to hear about your BFN. I am 41 and I didn't ovulate in first cycle after my BFN. I also got hot flushes which started during the treatment (I had never had them before) and continued afterwards on and off for a few months, although I didn't have the other symptoms you describe. Like you, I was also really worried that I had brought on an early menopause given my age. However, I am very pleased to report that ovulation returned to normal during the second cycle after BFN and has remained very regular since then, and the hot flushes have now gone. Hopefully you will find the same. Hope you are feeling better soon. Ellie.

Dear Ellie,

Thank you so much for your reply - it is very reassuring. I am so worried - like you, I had never had a hot flush in my life before all this treatment! And I didn't have too many during the d/r either, funnily enough. Lots of other symptoms, but not that. Did your first cycle post IVF last around the same length as a usual cycle? And did you take anything to help them go away by any chance?

Good luck with your next IVF!

Thanks again,

Kasia

 

[Ellie.st]

Dear Kasia
My first cycle after BFN was the same length as normal (and have continued that way since then)  - it was just that I didn't ovulate the first month.  I didn't take anything specific to get things back to normal, although I continued with the battery of nutritional supplements I had been taking prior to IVF and also eat as healthily as possible, avoid alcohol and caffeine etc, and drink lots of water. (Gosh, reading that I sound like a complete crank/bore!).  I think the IVF drugs just take a while to work their way out of your system - it took me about three months until I felt back to normal (and now I'm about to start it all over again!).  All the best.  Ellie.

 

[Kasia]

Dear Ellie,
You have no idea how good it is to hear from someone who has been through this! You can feel so alone in this process, can't you? I've only told a couple of friends we did IVF - and even they can't understand, as they have never done it themselves (luckily, they never needed to!). In any case, I might start taking vitamins because I've not been eating much (due to never feeling hungry), but I don't drink or smoke - and drink herbal teas (another crank! . You are very brave to do IVF again. I'm trying to decide whether to or not. The side effects were (are) so bad, I don't know if I can stand it.

Thanks again and good luck!


Kasia

 

[Ellie.st]

Dear Kasia
Yes, I know exactly how you feel as we decided to tell virtually no-one either, and, as you say, even the few we have told don't understand as they are not in the same situation.  I discovered this site by chance while I was stimming on my first cycle and it made such a difference for me as I had felt so isolated and unusual up to that point. 

I swore blind at the time of my first BFN that I wasn't going to try another cycle (and made husband promise to remind me of this if I changed my mind).  I was lucky that I didn't find the physical side of it too bad but I had underestimated how much I would be affected emotionally, even after 8 years of disappointment.  However, although the first two months after the first cycle were hard, by the third month I had decided that I did want to try again, and, in fact, I have now decided to hopefully give it two more goes (including this next one). I would say to give yourself some time before making the decision as to whether to try again. Also, although you had bad side effects this time around, judging from what other people on this site say, you may not be affected the same way the next time.  If you are having a review appointment with your clinic, it would be worth mentioning the side effects you had as they may be able to suggest different drugs for another cycle.

Anyway, all the best whatever you decide, and hope you are feeling better soon.  Ellie.

 

[Kasia]

Dear Ellie,

I too discovered this site by chance. I was having so many horrible side effects from the drugs (first of all I was allergic to Synarel - severe breathing problems - and had to change quickly to Buserelin) and wanted to see if I was the only one. The nurses implied no-one else had any side effects apart from the odd headache (a side effect I didn't suffer, ironically!). Anyway, this site is wonderful - it really helps to be able to share these experiences and to hear from others  going through a similar process.

It's interesting that you say you swore blind you would not try again. I feel like that at the moment too. Well, I do because of the side effects (especially the physcial ones). Like you, I underestimated how it would affect me emotionally.

May I ask which protocol you had? I was d/r with Buserelin - in the end for 5 weeks (!) because they found a problem with my blood (low platelet count) and had to check there was no underlying problem (and did lots of blood tests) before letting me start stimming. I am convinced they d/r me so much that I didn't react to the stimming drugs properly. We'll never know. Then, I had 6 days of 300 iu/day of Puregon and then 6 days at 450 iu/day. There were only 4 follies of a good size in the end but we decided to go ahead because I couldn't do an IUI due to a blocked tube and MFI (low count and morphology). However, the one follie turned out to be a cyst and the other 3 were immature eggs. So, there was no fertilisation or transfer. I was devastated. How about you? How many follies did you get and what drugs did you take? In the USA I have heard they give up to 600 iu of Puregon (called Follistim there, I think) per day. My consultant said they were not careful enough and in the UK they were more concerned about safeguarding the woman's health than in the US. Who knows?

I had a review appointment with a consultant and asked if (big IF) we did it again, we could do the short protocol - i.e. fewer drugs, fewer side effects. Plus, I had heard it often worked better with women over 40. However, she said they didn't do it at my hospital. My drugs/scans etc. were done at a local hospital and the embryology at a local clinic (Bourn Hall outside Cambridge). However, when I saw the counsellor (who works with people from the hospital and the clinic), she said Bourn Hall DID do the short protocol. I am confused.

Well, today I haven't had too many hot flushes - but my temperature is really at an all time low (I temp each morning). If it gets any lower, I'll turn into a reptile I think!

Oh, before I forget - what statistics were you quoted? I was given an under 5% chance of success with IVF/ICSI and virtually 0% without treatment. Great, eh? With under 5% chance of success, is it really worth having another go? It's such a difficult question. My partner and do not want to do DE and adoption is not really something we had considered up to now - and it's not easy either. Oh well, just have to accept it, I suppose. But it's hard.


Kasia

 

[Lorri]

Kasia,
Sounds like you have had a rough time. Its strange your hospital don't do Short Protocol as this would probably suit you better from what you have said.

I did short protocol in June/July and was on 450ui Puregon for 10 days (v expensive !), but I got 7 eggs of which 5 fertilised (one was immature). I got a BFN and am still waiting for my follow up, but have decided now to try again. The stats of under 5% are very low, is that just for your hospital ? I am at ARGC and for women 40+ I believe their success rates for ICSI are around 30%, IUI is probably a lot lower. Check out the HFEA site for stats http://www.hfea.gov.uk/Home.

I too am still waiting for my cycle to get back to normal. I normally ovulate around CD16 and its CD23 and I am still waiting !!! I have given up on the OPK's now. I am still suffering pains and all sorts, but am confident everything will settle down soon.

Good luck with whatever you decide.

Lx

 

[Kasia]

Hi Lorri,

Thanks for your reply. Yes, < 5% is very low - but I don't know if it's just for me - personally - or all women aged 42 with IVF/ICSI. I have had borderline FSH (ranging from 5.5 to 10.1 over the last year) too. So maybe that is part of the cause.

But I would prefer to do short protocol - as you did. The hospital consultant said they didn't do it because it was far more difficult to control ovulation and didn't produce such high quality eggs. So how come other clinics do it and are successful? It's a mystery to me!

In the end, my whole cycle lasted way too long. Started d/r on 23rd May and had e/c on 14th July! I must try to find out about the statistics, not that they are ever going to be good for me. What puts me off going elsewhere is the fact that when I was on the drugs I was unable to go anywhere by car - at least after the first week or so. I got so dizzy I felt carsick just looking at the car! Luckily I could go to the hospital for scans etc. by bike (a 10-mile round trip!). If I had to travel far with the horrendous side effects, I don't know how I'd cope. Maybe I wouldn't react so badly if I didn't have to d/r for 5 weeks before beginning the stimming drugs though (i.e. with a short protocol)?

Did you have any side effects during the drug treatment? Sorry to hear you were unsuccessful this time. It's good you have decided to do it again. I hope your pains disappear very soon. Any idea when you might try again?

Good luck,


Kasia

 

[Ellie.st]

Dear Kasia and Lorri

Kasia - Gosh, you went through the mill with your treatment, didn't you!  I had the long protocol (Buserelin - can't remember how much but it was the lowest dose, I think) followed by 150iu Puregon.  I got about 12 follicles of a decent size and 9 eggs but only 4 fertilised and we ended up with two good enough to put back (a grade 1 and a grade 2). 

Lorri - ARGC figures for 40-42s look good on the HFEA website (23 live births out of 115 cycles - 19%) but I don't know what their criteria are in terms of the people they accept for treatment and I suppose this can affect their success rates, athough I know they have a good reputation.  I have thought about trying them for a third cycle, but I live so far away (north of Scotland) that the logistics and cost would be a nightmare so need to give it serious consideration.

Kasia - At my follow-up, I asked about the short protocol but the doctor said that I had responded responded well to the long protocol and that I should try it again.  They offered the short protocol if I go on to do a third cycle.  Interestingly, when I went to my first IVF consultation, I was offered the short protocol but then went on to take fright and put off treatment for a while, and when I went back, the clinic said that having tried the short protocol for a while, they had decided that it offered no particular advantages and that they were generally more comfortable using the long one (as it was easier to monitor and more proven) except if there were specific reasons for using the short one (whatever those might be!).  I was told that I had responded better to the drugs in my first cycle than they would have expected for someone my age.  My FSH so far had always been around 6 though I have just had another test and don't yet what the results of that will be (fingers crossed it's still low!).

The only change I am having this time around is that I asked for Menopur rather than Puregon as I have heard that Menopur can be better for older women (it has LH and FSH whereas Puregon only has FSH).  The clinic were quite happy with this.  I have also added Co-enzyme Q10 to my battery of supplements as it is supposed to help blood flow to the womb, and I have just started a supplement of Pollen, Royal Jelly and Honey which is supposed to help egg quality. I am also making a special effort to eat more protein and drink more water.  (The things you do, eh ...!).

Re stats, like you, I was given a low percentage of success before my first cycle (5-7%), I think.  IUI is even lower (3%?) and natural conception about 1% per month, I think. I don't know how exactly they come up with the figures - I think in my case it was a combination of my age and also that we have been unexplained for so long (8 years).  At my review, I was told that the chances of success rise slightly for a second and third cycle, but that if it hasn't worked after three cycles, the chances then fall again (although there are plenty examples of people who have been successful after more than three attempts).  I know that the chances of success are not good but am prepared to give it a try as it does work for some people.  Like you, we would not go down the DE route and although I would would really like to consider adoption, my husband won't so that is not an option for us.  You are right - it is very hard and probably on the stats we have been quoted, I am mad to put myself through it again.  However, there is a small chance, and I would hate to think a few years down the line that we didn't do all we could before giving up. Husband, who is normally very analytical and logical, feels the same way!

Sorry for the long message but hope some of it is helpful

Best wishes

Ellie.

PS:  Kasia, your d/r does seem very long - although I am no expert - and especially with all the symptoms you had it would maybe be worth getting a second opinion about the short protocol.

 

[Lorri]

Hi Kasia and Ellie

Kasia - I was pretty lucky with the side effects, just mainly tired, and of course the bloating. Oh yes, and the bruising from the injections. I am hoping to try again in September, but will see what they say in my followup in a couple of weeks.

Ellie - I am not sure what the ARGC criteria is for 40+, they never said, and there was never any issue with them taking me on. My fsh was high the month before I started treatment. They do seem to take on cases that other clinics won't. Their success rates are higher, but they closely monitor everything, you have daily blood tests when stimming (not sure about d/r as on Short Protocol you d/r and stim simultaneously) also regular scans. Travelling to them from North of Scotland would be an absolute nightmare I would imagine, though some women do come from abroad, but I guess they stay over or fax test results in. You could give them a call and discuss logistics with them.

The short protocol is usually for women 40+ or younger women who have responded poorly to long protocol.

I have heard the same about success and number of attempts, ie that 2nd and 3rd you have a better chance as they know how you react after 1st one etc, but after 3, if it hasn't worked it may never work, as they have learnt all they can. There are however many success stories on  here of success on 4,5 or even 6 attempts. Wasn't it Trinny (from Trinny and Susannah) that was successful on her 9th attempt ?  Imagine that !

I am taking a ton of vitamins (including Q-10 now), my diet is already quite high protein. I eat lots of nuts and fruit and veg. I also eat mostly organic,

ARGC are great (I have not been anywhere else though), but downsides are that they are always so busy and not particularly touchy feely (which suits me). They don't explain stuff unless you ask questions, but are happy to go into detail if you ask.

Good luck to you both. Maybe our time is next time 

Lx

 

[Ellie.st]

Dear Lorri
Thanks for the info re ARGC - definitely food for thought!  Hope your review goes well, and, as you say, hopefully our time is next time!
Ellie.