# Poor response to short protocol, doctor wants long protocol now:(



## pixie1230 (Aug 30, 2014)

Hi everyone just had a stop cycle due to poor response last october 2014, i was on antagonist protocol, puregone 150, follicles didnt grow the way they expect for my age. So had to stop it which is devastating. Went for a review today with my gyne/fertility doctor. He said i need to be on long protocol this time which is for ladies older than my age. I'll be on puregon 300 now. Twice the dosage i had before. I am scared as i might over stimulate and it can stop my cycle again 
My doctor sounds so confident it will work this time and they will be able to harvest something. Should i trust my doctor sounding like that? Or is he just trying to sound nice to us. I have endo and hydros on left tube. But he still wants to give it a go because he said "i am young" which is not a good reason. I would rather be older and doesnt have hydros and endo compared to being younger but have this loads of issues.  I dont know what to do as this will be my last and only shot with ivf. I dont want to sound like i am questioning their judgement. But i am scared to what the outcome will be. I'll be doing it on january as clinic closes on xmas and they need to close monitor me.


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## CrazyHorse (May 8, 2014)

If you have hydrosalpinx on your left tube and you can't afford a private cycle of IVF after this, I would strongly recommend getting a second opinion on getting the hydrosalpinx removed or clipped off before attempting another cycle. If that means paying for a private consultation, I'd do that -- it's cheaper than finding money to fund a cycle of IVF privately if this one fails. 

Nothing wrong with questioning what your doctor tells you. If they have good reasons for what they're doing, they should be able to explain it to you, and should take the time to do so when you ask. It's your body, and you have every right to understand the evidence for and risks of the treatment being proposed.

Wishing you lots of luck!


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## pixie1230 (Aug 30, 2014)

Thanks Crazyhorse! I know i need to sort out my hydros prior to doing my cycle. But my doctor said to give it a shot. I told him several times that I am worried that this cycle might not work because of my tube, but he seems to focus on just doing it right now and fix it, if it fails. I feel like i just need to follow them on what they THINK is right, because I got this IVF funded by the government. In all fairness to him, he answered all my questions. But i didnt get the answer that I want to fix my tubes prior to this cycle. I am just keeping my fingers cross that everything will be okay and my hydros will not affect the implantation. I just cant stop thinking about it. I know some women get pregnant even if they have hydros but its like 3 is to 100. Oh well, anyway thanks crazyhorse for answering me.


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## LuckyE (Dec 9, 2013)

Lots of girls on this forum with hyrosalphinx get it fixed as the fluid kills the embies. It's weird that your Dr doesn't want to get this sorted. I am not 100% convinced by your NHS doctor....

Maybe his facts are different because you're younger? I agree with crazyhorse. Get him to explain why he doesn't see that it's a waste of a round. 

Can you not see another Dr in that hospital and bring to him your own research about the dangers of doing IVF with hydros? That's what I'd do. Plead with them to fix it before the IVF as you just can't afford to pay if it doesn't work. Cry if you have to. Talk to the free counsellors. I think they will listen if you have a valid concern. As it's a waste of an IVF round. 

Don't be shy. To them you are just a number and they're not exactly looking after your best interests so you have to do that yourself. I know we're meant to trust doctors but they are all so different and have different views they might not be working in your best interests.


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## CrazyHorse (May 8, 2014)

One other thing, pixie -- just because the NHS is covering your treatment doesn't mean that you're not ultimately paying part of the cost. Yes, it's government-funded, but the government is funded by YOUR taxes (along with everyone else's). The service is free to you at the point of delivery because you and lots of other people are paying NI contributions and income tax so that the NHS can continue providing treatments in the best interests of the population as a whole -- which includes helping families to reproduce. The government has a vested interest in families having babies so that there will be a new workforce coming up whose taxes will support the growing aging population. Please don't feel like, just because your treatment is on the NHS, you don't have any say in how that treatment should be conducted.

Wishing you all the best. xx


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## pixie1230 (Aug 30, 2014)

Hi luckyE, thanks for that! Wish i have that strong spirits just like u and crazyhorse, i am definitely thinking about everything you said. You are right bout the hydros. Talked to 3 doctors in that same clinic and they all said the same thing, to continue the treatment and if it doesnt work then figure out  what to do next. They want to collect as much eggs as possible to freeze, in case i need to sort out my hydros if it affects the implantation. I am just not keeping my hopes up right now, so i wont feel bad if it doesnt work. I just dont see the point on why not fix it now? Then do the ivf afterwards. They always tell me that i have a big plus coz of my age, but age is so not going to help when you have hydros. 

Crazyhorse, thanks for uplifting my spirit. I always feel shy to tell them my opinions and stand on this. I feel like they don't really prioritize me, because of my age. Since theres alot of older women who needs help in that clinic more than I do, It's like my decision dont really matter to them. Anyways, i will try again to talk to them on my next appointment. I know they will just say the same thing but i will still try to stand to what i feel is right for my body and my future. 

Again, thanks crazyhorse and LuckyE, thanks for taking the time to answer, you both uplifted my spirit!!! =)


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## LuckyE (Dec 9, 2013)

Okay, so they want you to do the following in this order...
Collect eggs. 
Freeze Eggs
Sort out hydros
Implant eggs?

If this is the case, it's not too bad a solution.... at least you're protecting the eggs.  And if they do this, is it all under NHS?


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## pixie1230 (Aug 30, 2014)

Well the order is: 
-collect egg/eggs
-put one egg to me
- wait til i get preggy if its  going to work. 
He said they are targeting to get more eggs to freeze. So if my hydros are the one causing the mc they will sort it out then FET(if i have eggs left to freeze)
If just one egg has been collected and used  the next cycle is funded by us already. 
And oh its not NHS. I am from ireland so might be the same as NhS there. 
- free one round of ivf
- free fet
- free egg storage for 2 years
They sound so confident with this idea, and i dunnot where that confidence is coming from to tell u honestly.


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## Cloudy (Jan 26, 2012)

I think the long protocol with the 300 dose sounds good. Try not to worry about over stimulation - I had ohss and it wasn't nice, but not as bad as I worried it would be.

Maybe they are worried about making the endo worse with doing surgery on your tubes before a cycle? It seems like they are prioritising the egg collection to freeze some (FETs are becoming more successful than fresh in some clinics, especially with endo patients apparently) which isn't a bad thing - and in that way your age is really good and important.

I know you are worried, and keep speaking to them and telling them how you feel. Maybe they could compromise and for example if you got less than X number of eggs they can do a freeze all and operate, if you get more than X embryos you will go with their plan.

Hope you can start to feel better and more positive about it honey  

Xxx


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## pixie1230 (Aug 30, 2014)

Yeah the doctor sound so confident with the long protocol. I am not worrying about having ohss, what I am worried about is this will be my last stop. If they stop me again this time while on stimms. My free ivf round is done already. Thats their policy. I wasnt aware of that til i was stopped last oct when i didnt respond to the medication. For me i dont know why they have to stop funding it when a couple got stop due to poor response. Its not like they pad the whole ivf. But that's their rules. 

Cloudy, when u had ohss? Did they stop you there? Or were u still able to proceed to egg collection, then freeze your embies? 

Just hoping to get alot of eggs. So i will have something to freeze and use it if this cycle fails. Just wishing that I am one of those women who still get preggy with hydros.


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## Cloudy (Jan 26, 2012)

No, they put me on cabergolin and let me have transfer as although I had loads of follies, lots were empty so I got 15 eggs. Though I felt quite poorly so sometimes think i would have been better asking for a freeze all. We got 4 blasts though so really lucky.

Hope you can talk to your Drs again and try and come to compromise. It is a really stressful time - we had one attempt at ivf on the NHS and found it quite stressful.

Xxx


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## Jessica1986 (Sep 23, 2013)

Hi there, sorry to butt in but just wanted to share my story if that's ok.... The message being don't rely on frozen embryos in itself. In my first transfer we used my young (30) obviously fertile (has 2 kids, fell pregnant with 3rd shortly after donating) sister as a donor. They kept noticing that my endometrium was developing a lot of fluid and put it down to overstimulation from my hormones. I was very worried but kept being told 'oh don't worry it'll probably sort itself out by transfer and if not we can freeze' By day 3 post EC my fluid was still a little bit there and we only had 2 embryos left which were looking so sorry for themselves they would never have survived a freeze so I had no choice but to have them transferred even though we knew that with the quality of the embryos and the quality of my uterus the chances were virtually zilch. I'm not saying that there isn't a place for FETs. Of course there is. It is quite logical that they might even be more successful than fresh with people who have unpredictable uteruses as they give you chance to sort it but I'm just telling you this to make you aware because my clinic never gave me the slightest hint that this might be the outcome for me. If they had I would have requested to abandon my cycle when they first noticed the fluid in my uterus and not thrown away my one chance on the nhs. I hope you don't think I'm being too negative   it's just IMHO after the experience I've had I would be wanting to do everything I can to make sure that everything is optimum before I tried a cycle so that I could at least aim for a fresh transfer as there are too few guarantees with frozen as useful as they can be. Of course I don't know your full medical history so can't make a true judgement but I would maybe ask one of the staff at your clinic to explain in more detail why they think it is better done this way round. And within reason I agree with you on their justification so far. 'You're young' is a reason to hope that a cycle in general would be more successful but has no bearing whatsoever on the hydrosalpnyx. One thing I would always encourage any lady undergoing IVF to do as well is to try and consider all the possible outcomes and what you would want to do in these outcomes. I've had 2 cycles so far and both times something has happened that wasn't quite to plan which has caused us to have to make a very quick but important decision about what we want to do and it's very draining if you haven't already considered that such a situation might occur. For me both times it was my lining building with fluid and having to decide whether to transfer or whether to freeze, etc. I hope this has helped and please don't think I'm being doom and gloom or saying your clinic is wrong, I just wanted to give you a couple of points I've learned from my own experiences. Best of luck!!   Xxx


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## pixie1230 (Aug 30, 2014)

cloudy, yeah need to talk to them and tell them how I really feel about it. Maybe they dont really feel that I am seriously bothered with my hydros. I remember telling them before that I dont mind doing DE in the future(if ever I've done surgery to remove my tubes and my ovary wont produce good eggs anymore) He just said, it not an option at the moment. They really want to push this treatment and take it from there. 

Jessica, Hi there, thanks for that information. It is good when you hear different experiences from everyone. You get to learn and know what are the possible options that you have out there. Sometimes doctors wont tell you everything and you have to figure it out yourself or you will be clueless of what is going on. So you dont need to say sorry. I really appreciate you sharing your experience. I know I have to be sure with this treatment because this is my last shot. I just feel like when I questioned them over and over they might think I am being so persistent that they might get annoyed already. I have a feeling that this next cycle that I am going through wont be successful. But lets see whats going to happen. Will talk to them again next time. 

Thanks again Girls, really appreciate your time to answer my post.


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## Jessica1986 (Sep 23, 2013)

It's tough I know *pixie* because you want to trust your doctors but you want to give yourself the best shot as well and sometimes that does involve doing a bit of the thinking for yourself even if it is just to satisfy yourself that the clinical team are doing everything they can. I'm now in a really quite frustrating situation where I have 6 perfect blasts waiting to be transferred into me in a Spanish clinic but I still have the same issue with my endometrium. I've made the decision to seek further assistance with the lining from a specialist in London before I try again as (although they're lovely and clearly want this to work for me) I just didn't feel that the Spanish clinic were 'expert enough' in this issue to treat it optimally. I was a bit worried that they would take offence at this but actually they've been great about it and just asked me to keep them updated. At the end of the day any clinic worth anything should respect what an inprecise Science IVF and respect how stressful it is for women and therefore respect that you will have questions and doubt and a certain need to be in control of your own journey. I don't think your medical team would be upset at you if you had questions. I don't know an awful lot about the condition you have but I'm sure your doctors have very good reasons for wanting to do things this way round. It could well be that they are likely to be able to collect a lot more eggs doing things this way round in which case it would seem more than reasonable. However, you shouldn't be afraid to ask them to explain this to you. It's part of their job role and it's your body and your life. Very best of luck. Keeping my fingers crossed for you! X


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