Please Help Today if possible

Cazzy · Post by **Cazzy** » Sun Aug 03, 2003 2:26 pm

Sorry to ask for replies today and again I want to thank everyone who has supported me when I haven't given much back yet. Doing IVF and having crohns disease has made me quite un-well so I haven't been able to get here as much as I would like. I'm in a right state

. I've just got back from the hospital and and they have cancelled the cycle. I was only 6 days away from expected EC but I have been bleeding for the last 5 days . Today was my day 7 injection scan. Basically they didn't see any follicles which is again (like the bleeding) rare on 6amp of 75mg Menopur. But they did see a 27 x 22 cyst. The nurse at that stage said she would carry on as I was only 6 days away from egg collection and I might as well continue. She asked if I was still bleeding and I said yes but there hadn't been anything today which was not untypical as it tended to be better early in the morning. Then she went to speak with the consultant (who did not come and see me!!!!) and told me I was to stop now . One because I was still bleeding and it was obvious the down reg had not worked so there wasn't any point. When they told me I burst into tears and forgot to ask so many things. I have just phoned and they have gone home. I have no other contact numbers so any help today would be really appreciated. When I went for the baseline scan it had worked which is why I started the injections? The endo was 3mm and everything looked on target so why are they now saying I didn't react to the downreg? Also I still haven't bleed today so would his answer be different if he knew now I still haven't bleed. My other questions are -- could the medication have caused the cyst?? Is this big ? What will happen now. And the main one is has anyone who've had no follicles on the 7 day injection scan produced some later on. What would happen if I kept going. I want my husband to inject me tonight until I can speak to someone tomorrow and tell them the bleeding seems to have stopped (so far ). Hubby say's no as he's worried because they have told me to stop and about the cyst. If I continue could I still get follicles, or could it be dangerous with the cyst this size. What would anyone else do in my situation as if I don't inject tonight then that's it. Please any advice would be appreciated as I want to try and get my hubby to inject tonight but as we are first timers so he wanted advice from you guys. Thanks in advance, I hope this makes sense as I can hardly type or think straight I am so upset. I'm just so confused and don't know what to do, it could be months (even never) before I get another low FSH Hugs Hope everyone else on Aug. cycles are doing well. Cazzy xxxx

Jo Radley · Post by **Jo Radley** » Sun Aug 03, 2003 2:50 pm

Hi Cazzy, I'm so sorry to hear your news - I really do feel for you. I don't think I can help much, but I didn't want you to think that nobody was around for you today. If I was in your position, I know that I would want my DH to do my injection for me tonight, but then again, if the hospital said to stop everything, then your DH is right, they must have said that for a good reason. Not sure whether the medication has caused the cyst (wouldn't have thought so, but who knows), but by having the injection tonight, perhaps that might aggrevate it in some way. I'm sorry I haven't helped much Cazzy - I just wanted you to know that we're all here for you and that you're not on your own. I'm thinking of you ...... Loads of love and hugs, Jo xx

gillyf · Post by **gillyf** » Sun Aug 03, 2003 4:26 pm

Cazzy, I'm sorry that I can't be much help either. I know it must be so hard for you and the last thing you want to do is stop the cycle but I think if I were in your position I would do as the clinic says. But I also think you should contact them first thing tomorrow and get some answers - from what you've said your treatment has been appalling and your consultant should sit down with you and explain exactly whats going on. As I've said this is only my opinion and you and DH must do whatever you feel is right. You must remember your health is the most important thing (I think we all become a bit too obsessed about becoming pregnant and forget about ourselves). Sorry not to be of any real help but wishing you all the best. Luv Gill xx

fi · Post by fi » Sun Aug 03, 2003 4:33 pm

you poor things, what a total nightmare. if i was you i would call up first thing and have your questions written down, unfortunately its very difficult sometimes to be rational and hear what the professionals have to say as it is hard to accept what they are saying is for the best. just wanted to say thinking of you, and keep in touch to let us know what happening, massive hugs, fi

nicolam · Post by **nicolam** » Sun Aug 03, 2003 7:48 pm

God what a terrible time you've had. Personally, I don't think it would be right for anyone here to advise you to do that injection and I would also worry about how your poor DH would feel if 'something' went wrong because of it. I'm sure it wouldn't but it's an awful risk. I think you should listen to the consultant's advice, ignore what the nurse said, it's not her decision. At the very first meeting with our IVF consultant he stated very clearly that it was their objective to put the patient's health first above anything else. It was such a shame you didn't get to talk to the consultant personally, that was so bad as you wouldn't be panicking now. Get on that phone first thing and insist on a proper appointment to talk everything through. Wishing you every bit of luck possible. Nicola x

bertie · Post by **bertie** » Sun Aug 03, 2003 8:15 pm

Cazzy Sorry to hear whats happened. Our consultants also said that the patients health comes first before all else. Our situation on our 1st attempt was different to yours but ours was also cancelled. As fi says, the best thing to do now is write all the questions down that you want to ask. When you are given news like that everything that you want to says goes out of your head. Wishing you luck and be on the phone as soon as they open tomorrow. luv bertie x

kathryn · Post by **kathryn** » Mon Aug 04, 2003 4:02 pm

hello cazzy, sorry, I know this post is too late to say anything helpful. I just hope you were able to phone your clinic and find some answers. Youve had an awful time, and I know how frustrating it is when cycles are cancelled. The whole process takes so much time and days feel like weeks and weeks feel like months. Im sorry youre having a tough time and I hope you are feeling a little better today, with a few of your questions answered. take care cazzy kathryn x

Cazzy · Post by **Cazzy** » Wed Aug 06, 2003 1:13 am

Thanks All, I didn't do the injection and phoned the clinic the next day to ask if I could speak to either the consultant or the nurse who scanned me. Both were unavailable but the nurse I spoke to said it was possible to have follicles even after the 7 day scan showed nothing but with the bleeding, the cyst, the FSH problem etc she would stop. I had a list of questions which she could not answer as they have never had this combination of problems. I asked her why they were now telling me I didn't react to the syneral when the baseline scan was OK. She said perhaps they missed the cyst in the first place !!!!!. I asked her what they would do about it and she said don't worry about that for the moment -- great answer. I started to cry on the phone and she said , sorry I can't help you. So basically the cycle is now stopped and I don't really understand what happened. I have to make an appointment to see the consultant at a cost of 150 to see what went wrong . I also have to pay for another scan to see about the cyst and possibly a 350 cycle cancellation fee. We both feel very let down and disillusioned with the whole thing. We've had no support from them at all. I keep thinking 4 more days and it would have been egg collection

. I don't even know whether they will let me try again or when I can see the consultant . I phoned today but it was an answer machine which they didn't reply to. I am so fed up. Thanks All, for all the other Aug Buddies, I really hope it goes well for you. Hugs Cazzy

caz1 · Post by **caz1** » Wed Aug 06, 2003 7:35 am

Cazzy - sorry this is a late reply - I'm SO sorry you had to stop- WHAT a nightmare. The clinic sounds a bit annoying - to say the least. YOU MUST INSIST ON AT LEAST TALKING TO THE CONSULTANT ASAP. And its a bollocks that they are charging you for your consultation. I think you classify as a failed IVF - and I think most clinics give you 1 free consultation after that Its tought ho isnt it becasue the last thing you want to do is alienate the people at the clinic - but sometimes I think they do slightly take the piss. Just keep PUSHING for at least a phone call with the consultant. Its your right. Not sure if that helps - so sorry it didnt go well for you this time Next time will be our chance eh?! Cazxx

gillyf · Post by **gillyf** » Wed Aug 06, 2003 8:59 am

Cazzy, So sorry that you had to stop the cycle. This whole thing is hard enough and to have to stop suddenly is heartbreaking. Your clinic sound a bit unsupportive which is totally unacceptable especially when your paying the amounts of money they charge. I think as Caz says you should keep pushing until you speak to the consultant who must have some answers for you. Wishing you all the best Gill xxx

kathryn · Post by **kathryn** » Thu Aug 07, 2003 7:46 am

hi cazzy, your tmt at this clinic sounds awful. Surely you wont have to pay for the consultation fee and you definitely should NOT pay for the cycle cancellation. What clinic are you at and where? If I were you I would be looking at other clinics. This tmt is sressful enough without a supportive clinic. make sure you take your list of questions with you to see your consultant. I think its dreadful that they keep charging you all this money especially when they didnt seem to be looking after you properly. take care cazzy kathryn x

Cazzy · Post by **Cazzy** » Sun Aug 17, 2003 10:10 am

Thanks for your replies, sorry it has taken me so long to get back here but I ended up in hospital. Only got out on Thursday. The clinic sent us the bill for 350.00 cancellation fee on the day of supposed egg collection. I thought that was a nice touch

The clinic is the Priory in B'ham and unfortunately the only one who will work with me due to my high FSH. I've had no contact with them since and still don't understand what really went on. I went into an NHS hospital with anemia, bleeding, kidney infection and abdo pain. It turns out the cyst has grown and not gone as they said would it would if I stopped the treatment. I am now on medication to stop the bleeding and reduce the cyst which of course means I can't try for IVF.

I do have to pay another 150 to see the consultant which was booked for next Friday but will have to be changed now as I can't try again until this is sorted. I am gutted as now don't how long this will take, what will happen or even whether they will let me try again. We haven't paid the cancellation fee but it looks like we will have to . So they get the money - the NHS picks up the tab for the mess and I'm left in limbo. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. Sorry just needed to vent. This is the first time I have been on the computer since hospital so haven't read the Aug buddy threads but just wanted to say I hope it went well for you all

. Hugs Caz xxx

kathryn · Post by **kathryn** » Sun Aug 17, 2003 10:59 am

cazzy you poor thing, what an awful time youre going through. I take it the nhs will be sorting out your cyst? Have they given you any idea how long you will need to be on this new medication? It must be so frustrating for you not knowing where youre going, time is frustrating anyway with tmts let alone everything else youre going through. andI just cant believe they are billing you all the time, that just seems so unfair. Im sorry you only have the priory that can deal with your tmt. Surely there must be somewhere else, or maybe it would involve too much travelling for you. I really hope you will be feeling better soon and it wont be too long before you can try again.whenever you need to yell or cry, there is always someone here. sending you lots of love and a big hug kathryn x

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