Newbie - IVF Help and Advice - Short Protocol - Excessive Response to Ovarian Stimulation

[RockysMum]

Hi everyone - new to this so apologies if I go on a bit!

I'm really looking for some advice and reassurance for our first IVF procedure on NHS in Scotland.

Myself (30) and my Fiance (36) have been together for nearly 4 years and we are finally seeing a light at the end of our IVF tunnel - hopefully! We have had all our routine tests done, scans etc and all the tests came back normal and we were described as having "unexplained infertility". We just had our bloods taken for the last time 2 weeks ago to check for HIV etc and they all came back fine for the both of us, however, my AMH level came back as "excessive response to ovarian stimulation".

I have since spoke with the Nurse at the hospital (but not referring directly to my results, just a general over view) and asked what this meant. She has informed me that it means I could be in danger of over stimulating and that the likely hood is, that I will most definately be put on the injections right away in my June period (due around 6th-8th) and I shall receive my scan beforehand to ensure I have no polycystic ovaries. The nurse also said that I should try not to worry and that I am in good hands and it just means they will keep a closer eye on me and if it comes to it, have my eggs frozen until it's time for implantation. She said she would much rather that result than one of a no response or low response.

I have since came off the phone and I'm still really confused by it all. She says I shall receive a letter soon with a number to phone my period arrives so I can go up to hospital but what happens if it's a weekend for example? Also, my Fiance is due to be away from Fri 27th June until late night on Monday 30th June and I'm scared this shall be the time, and only time, he shall be needed (if you know what I mean!) for the procedure - what happens in these circumstances as sadly he is unable to move these dates? If I was due to start taking the injections on say Monday 9th June, when do you usually have the implantation? Would it be around that time and if so, would they be able to wait until he was back on the Tuesday 1st July? Sorry if I'm so niave but I really don't know how all the dates tie in together. No matter how much I read online, there's so many scenarios and terminolgy, it's so easy to get confused.

Also if I do have an excessive response, does anyone know how this affects our chances of a successful IVF cycle? How would the shorter protocol compare with the longer? I really hope all my dates work out as I'd be devastated if my Fiance is away when he needs to do "his part".

Sorry for all the questions but if anyone would be kind enough to help me and try and reasssure me, I'd be ever so grateful.

Thank you x

Hiya - ok first stop worrying :)

There are a lot of us in similar boats! I am 29 and my DH is 28,we've had our first round of IVF as my tubes are messed up from endo and PCOS surgery over the years.

I did a short protocol and initially looked as though I wasn't responding (I was on 150 Menopur) so much so that they talked about cancelling our cycle.

We stuck to our guns and they upped the dose, although in the end I was stimming for 18 days! A lot of times we asked about OHSS because of my high risk (with PCOS) and were told not to worry - however on Saturday when I went for egg collection they got 30 eggs!!! I was VERY sore (still am) but we now have 21 really good looking embryos which hopefully means we'll have a lot to freeze on Thursday. I have to let my body calm down a little then we are going for a frozen transfer in June :)

As for dates,all protocols are different....we are all unique after all!! For a short protocol, you'll usually start taking norothisterone on day 18 of your cycle for about 10 days - this will then result in a withdrawal bleed. On day 2 of that bleed you start stimming,usually for about 8 days (sometimes longer like in my case!).At the end of stims you'll go for egg collection and that's when your man has to do his bit too!!

For me personally, I would say the dates conflicting with a prior arrangement might have stressed me out...I ended up having scans almost daily during stims and was so glad my DH could come with me.Maybe it would be best to wait until you know there are no plans to mess up your cycle?

xx

Thank you so much for your response - it really helps when I feel like I'm not on my own.

That's a really good amount of eggs you managed to retrieve! I shall keep everything crossed for you!

The nurse mentioned previously when I briefly asked about my OH not being here at the end of June and she was very calm about it (all before my bloods came back so maybe just thinking they would come back normal) and she said not to worry as this happens very often with couples and they encourage couples to carry on as normal and not let this take over their lives. She said that if I was already on my injections, they would just continue me on them for another few days or a week until he comes back or if that was not an option, they could just put it off until the July. But being as impatient as I am (and the fact this has been over 2 years now as in Scotland you aren't allowed to be a smoker, so I had to wait until my partner stopped before we received treatment, then obviously wait for treatment etc) I am just deseperate to start the treatment now!

If it comes to it I may just wait until the July - if he couldn't manage the scans, I could handle that as it's a one off but obviously he has to be there for the most important part! Just such bad bad timing :( I'm trying not to let it worry me but it's all so new to me that it's just another thing to add to the list of what to worry about! x

I'm not an NHS patient so things may be slightly different but it sounds very strange to let you carry on on the injections....every time you go for monitoring they will do a blood test to measure your oestrogen levels - mine went from 534 on the Friday to over 9000 on the Monday so they can change very fast! If you are high risk of over stimming they certainly won't let you keep going - it's one of the main reasons why cycles are cancelled. When are you thinking of starting the cycle then (ie when is your AF due if that's not TMI!)? I know what you mean about being impatient though!x

Just had a little play with my calendar....so,if your cycle went to plan (& remember that's a big IF in the wonderful world of IVF :) )....for your EC (& therefore your other halfs 'bit') to fall on the weekend he's away, you would be...

Starting stims around June 17th (assuming they monitored you for about 9 days before EC)

Having a withdrawal bleed on June 16

Starting norothisterone around June 4 (day 18 of your cycle)

Which would mean your AF came on about May 18

Obviously that's a VERY rough guesstimate! But basically if you've got AF before that date in May then you should have had everything done before he goes away :) x

Thanks so much for being so detailed in your responses x.

Yeah the nurse said all that before I got my bloods back so I agree that I don't see them keeping me on the injections for any longer than they have to now.

The hospital said they wanted to start me on the IVF in my "June period" which a rough guess should arrive on around 6-8th June give or take a few days.

I assumed then that my injections would then start on the first day of my June period....is that right?

Sorry I hope you don't think I'm going into this blindly, I just find it all so confusing! Xx

Don't worry, I was the same....I must have read everything 1000 times but to be honest until you're into it I think they try and avoid telling you everything. My protocol only made sense once I'd started injecting! Have you been prescribed your meds yet?

Like I said all protocols are different...but if they are going down the norothisterone route,& you get your period around June 6-8, you won't actually start your stimulation injections until at least July 7th or something, which will put your EC at about July 19th....it is quite a long process!

At least your OH will be around to help though :)

No not yet, we just literally got the letter with my blood results on it yesterday and all the nurse said was that we shall get a letter out shortly with details on it on what to expect next. She just said (without looking at my notes or my actual blood result) that because of the excessive reaction, it more than likely I would be on the shorter protocol which would mean starting the injections on the day of my June period? Is there 2 types of injections then if you say I wouldn't start stimulation ones until July?

Thanks again so much for responding I really appreciate it. I read your other post about the pain you're in too and I'm so sorry to hear that. I really hope you start feeling better soon. The worse pain I have experienced so far was with the dye when they out it in your tubes to see if the are blocked. Absolutely agonising for me! Did not expect it to hurt as much as it did! X

Aw thankyou, I do feel a lot better today to be honest...it was definitely a shock though! I do think 30 eggs is excessive though and if they'd seen that many on my last scan they wouldn't have done it this time. I'm glad they did now though ;)

Have you seen your consultant yet? There are only 2 main differences with long and short protocol - on a long one you have to down regulate (either with jabs or a nasal spray) to stop your natural cycle and THEN start stimming,whereas on a short one you only inject the stims (Menopur or Gonal F or whatever you're on). They may be doing a natural cycle where you start injecting on the 2nd day of your natural bleed but I haven't heard of that before.

The best thing you can do,as frustrating as it is,is probably just wait and see what they tell you to do next...as hard as that is! I remember feeling so positive we were almost there when we came out of our consultants office...then it took 2 weeks to get the protocol/prescription through the post,another 10 days for the drugs to arrive,another week to book a nurse appointment to learn how to inject...it was so hard. And that's one of the priciest clinics in the UK! They seem like they're dragging their feet but I've come to terms with it by thinking,at this stage a few extra weeks/months won't harm lol!

Good luck with it all, keep us posted :)

xx

Not seen the consultant yet as we just got those results. You are absolutely spot on, I'm just being very impatient but I just feel we are so close now, I'm expecting something else to hold it up and thinking of all these different scenarios. You are totally right in just waiting now and see what happens. Our NHS hospital have been absolutely fantastic so far I must admit, for it being NHS all in all since my OH has stopped smoking, the waiting time has been about 3 months. We get 2 tries on the NHS and if that doesn't work we are going to call it a day. As sad as it will be, we feel we will just have to accept it and carry on with our lives. I'm hoping and praying it doesn't come to that though - like everyone on here, we really deserve this and want it so much.

You see I would have thought that was a really good result having so many!

Thanks again for being so lovely xxx

It's a really good result for us (21 are still going strong) but can make the EC dangerous and obviously now I'm having to deal with the OHSS symptoms...& I should have been having one transferred back on Thursday but now we have to wait until I'm better :( either way I doubt I'll ever have to go through collection again - thank god!

NHS was never an option for us as I have 2 children already...our clinic have been ok at times and rubbish at others, all I would say is read and re read everything and ask lots of questions - I wish I'd asked more in the early days.

I'll be thinking of you in June! Like I say keep us updated :) xx

Yes, you're right at least because, touch wood, you have had such a good result, you won't have to go through it all again! I really hope you feel better soon.

Ah ok, I understand! Neither of us have a child and I've never fallen pregnant before either with my Fiancé or my past partner, so we are very lucky to be able to do this with help from the NHS. I feel I have been phoning them and asking questions too much (only maybe 3 times so not too bad!) so biting my tongue not to call again lol. We have a seminar they put on for people away to go throb their first cycle in May, so will ask lots of questions then.

I will do and I will keep looking out to see how you are getting on! Thanks again for being so thoughtful and replying - it was really nice of you xx

Some good news BrownysMrs! I phoned the hospital today after my Fiance encouraging me to do so and they have said a letter was going out to me today asking for me to phone them on the 1st day I get my NEXT period, which, all going well is 13 days time!! I'm so happy with this however, they have warned that they can't guarantee it until I phone as it depends on how many staff are on etc.

They have also said that I might be ok for June as well depending on my when period comes so that has also put my mind at ease. My Fiance has also said he will try and cancel the arrangment if he has to also so I feel so much better now.

I will let you know if I do get taken in May :)

Really hope you're feeling a bit better today too xxx

Oh wow that's fab news...so fast!! If they're asking you to phone on the 1st day (& you haven't been shown how to inject yet etc) I'd still say your protocol will be similar to mine ie norothisterone on day 18 and then injecting after that...that means by mid June you'll be well underway though!

I feel a lot better today and just managed to put a wash on (go me haha!) - really has knocked me for 6! We find out how many blastocysts we have to freeze tomorrow though so that's keeping me positive,especially as the embryologist said today she was expecting in excess of 10 (crazy I know). I'll be having my FET around the end of June...might be a similar time to yours if your cycle works out ok?! How weird haha x

Keep smiling and let me know what happens :) xx

HELP! Does anyone have some Menopur I can buy off them today/ tomorrow? I am in Canterbury I can drive anywhere in England with cash if we can agree a price. I am undergoing fertility treatment from a clinic in Spain. They sent me a prescription which Asda got for me but today the clinic has emailed asking me to increase the dose even though I have explained you can't just pop to the chemist & buy it off the shelf especially when it's a bank holiday week-end!! Pretty desperate as have spent a fortune & will miss my window if I do not increase dosage. Please contact me if you can help a woman take her last shot at getting pregnant xx

Hi Barcelona have they given you another prescription??We used a private chemist for ours but I know the semi-NHS chemist Healthcare at Home also do IVF drugs - nowhere in the UK will be able to dispense it without a prescription though. We gave all our spares back to our clinic as I think a lot of people do.

Good luck x