follow up consultation

Kat · Post by **Kat** » Fri Aug 22, 2003 2:19 pm

Hi all, have had follow up consultation this morning following negative beginning August and am starting next cycle when I have had my next af!!! I thought it would be a bit further away than that but should be starting injections beginning Sept and then EC/ET mid Sept all being well. Also - nice surprise - they are funding the drugs so I only have to pay for treatment. I misunderstood when they said before that they wouldn't pay after I was 38 (July), that was for the treatment but my health authority will pay for 3 lots of drugs in a year up to the age of 40. So am getting all excited now and will be joining the SCB's after all.....and this time it will be POSITIVE. Lots of love to everyone Kat xx

Grace · Post by **Grace** » Fri Aug 22, 2003 3:31 pm

Hi Kat I don't think we have spoken before but I remember you from a few weeks ago. I think it is brilliant that you are starting again and truly wish you the best of luck with this one. I will be starting again myself in October so not too far behind you. I notice that you live quite near me - I am in Surbiton/Kingston. Did your GP tell you about the health authority funding your drugs? Perhaps I should look into it as we are in the same authority. Finger crossed for you Gracex

Kat · Post by **Kat** » Fri Aug 22, 2003 4:57 pm

Hi Grace, thanks for the reply. I am in Chessington and go to Queen Mary's Roehampton for treatment. They have given me all the info rather than GP but then when I first started out on this lovely rollercoaster I was with Mid Surrey Health Authority therefore a different GP. From what I remember Kingston & Richmond HA give you one free IVF/ICSI cycle every financial year up to age 38 (I've taken full advantage of that!), and now it seems 3 lots of drugs a year up to 40, which I think is a lot better than other places. It might be different if you are at a completely private clinic - where are you having your treatment? Definitely no harm in asking, you might get a pleasant surprise too. Best of luck Love Kat xx [Edited by Kat on 22-Aug-03 10:00]

kathryn · Post by **kathryn** » Sun Aug 24, 2003 10:29 am

hi kat, pleased to hear your starting so soon! Ill be watching you and Im really hoping I wont be far behind you , but we shall have to see! and yes this time it shall be positive!!!!!!!!! lots of love kathryn x

Helen GB · Post by **Helen GB** » Tue Aug 26, 2003 1:04 pm

Hi Kat - I am glad you are back on the band wagon...although was sorry to see your last -ve. I would like to ask yr opinion on something....I went for my follow up at Roehampton this morning after my first IVF attempt failed in June. (We decided to postpone the follow up as was having a laparoscopy and hysteroscopy at Kingston last week and wanted to see what that found...luckily both procedures found everything normal.) With this in mind, was hoping to be able to try IUI instead of IVF as it is less invasive and cheaper (we too pay for tmt but Kingston and Richmond paying for drugs) but Dr Huggins said he would not recommend IUI for us. I am a poor responder...on 4 amps Menopur got 6 follies but only 1 egg...have highish FSH so looks like ovaries are winding down and maybe low reserve too. What is confusing me is that during my last attempt when follies still maturing, Katie suggested that if I was low on eggs, maybe a different protocol would suit me better...the one I think you had...no down-reg at all and injections into stomach to supress Ovulation. When I mentioned it to Dr H he pooh poohed it and said that same short protocol I was on last time (sniffing and injecting at same time starting day 3 of cycle) would be his prefferred choice but with 5 amps instead of 4. We can't afford another attempt until October anyway so what I am wondering is if I'm not happy about his decision, how can I get a second opinion - I don't want to change clinics as Roehampton is so handy (I am in Thames Ditton) but I don't want him to think I'm going behind his back. What I'd really like is to speak to Miss Bevan - she did my ops last week and is the Consultant Gynaecologist who is head of the unit at Roehampton but she won't take phone calls.......maddening isn't it! What do you think...any feedback would be much appreciated! Grace - my GP is in Surbiton...K&R Health Authority will fund drugs as Kat says 3 attempts up to 40 yrs old. Will not fund my actual tmt as have son from previous marriage and am 38. In fact, I should move GPs as when we moved from Surbiton to Thames Ditton we moved outside their catchment area but luckily my GP was happy to keep me on until after we finish IVF which is just as well as my nearest GP now is different health authority who don't offer any funding if you already have a child. Also, my GP did not know what funding was available when we started out, but she advised me to phone K&R direct to find out - they were very helpful and I also got what they said confirmed by the clinic I am being treated at (Queen Mary's Roehampton). Good luck with yr tmt and funding. Sorry this is so long!!! Love helen

Grace · Post by **Grace** » Tue Aug 26, 2003 3:00 pm

Hi Kat and Helen It is somehow comforting to know there are people so close going throught the same thing!! Thank you both for your information. I was interested but I am only being greedy really as I have been lucky enough to get 3 NHS attempts all at Kings. Unfortunately all negatives though. They recommended I try the Lister and that is where I am at the moment. I know I have been one of the lucky ones as most people do not get any help what so ever. Therefore, on that front I can't really complain! Helen, although I do not know the people involved I think you should certainly get a second opinion if possible. I know the short protocol is often used for people with raised FSH. I suppose some doctors just have a preference for certain methods. On the other hand increasing your dose of drugs might do the trick people often use up to six amps. It is so difficult is n't it, making all these decisions especailly when you so often get conflicting advice. Good luck to you Kat, I am sure you are getting exited about your start. Are they going to make any changes to your treatmeant this time? Anyway, will be keeping an eye out for both of you and keeping my fingers crossed for you both. Gracexx

Helen GB · Post by **Helen GB** » Wed Aug 27, 2003 10:47 am

Hi Grace A quick question - your NHS attempts - why were they at Kings and not Roehampton? I was under the impression that all of us getting some NHS provision in K&R Health Auth area all were referred to Roehampton - did you live somewhere else before? Also, did you have the same protocol each attempt or did they vary your tmt? Bye for now Helen x

Grace · Post by **Grace** » Wed Aug 27, 2003 4:17 pm

Hi Helen I had my inital examinations etc under Roehampton the consultatnt I saw there was Mr Clements. This was in 2000, and I was under the impression then that Kings was the only hospital that K and R health used but it probably has changed alot since then. We found the staff and consultant at Kings very nice and very helpful but I would have to say that they did n't change the protocol in anyway. They also had a very strict freezing policy then and unless you had at least 5 grade 1's left over they would not freeze. On one attempt I had 4 grade 1's and a couple of 2/3 left over but they still would not freeze them. Looking back this does make me quite angry. However, I did n't really vocalise how I was feeling as I felt they knew best. I am alot more informed now ( sadly due to experience!!) and realise that some hospitals are restricted in what they do because of performance tables etc. I don't think they really tailored the treatmeant to the indvidual more towards the general stats. Saying all this I do realise how difficult it can be working within tight margins etc and am still grateful for the treatmeant I received. Policies have probably change alot since then anyway. Treatmeant at the Lister has been less stressful in someways and one of the main ways is that it is much easier to get to from here. They have done all sorts of tests etc but the protocol remains pretty much the same. I think this is because so far I have responded well but never gained implantation. I have recently had a test done for 'naural killer cells' this has proved positive and next time I will be on steroids - as well as the usual cocktail, can hardly wait!! Well there you are hope you have n't fallen asleep after all of that!! I will be interested to hear how you are getting on so keep in touch. Speak again soon. Gracexx

Kat · Post by **Kat** » Wed Aug 27, 2003 6:26 pm

Hi to both of you (nice to hear from you again Helen ) Helen, I have been seeing Ebtisam as well as Sheldon and she is the one that has decided what protocol each time. I am a poor responder - my best has been this last go on 6 amps menopur and then cetrotide in stomach (which was fine) and I got 3 decent size follies and one egg. My FSH is normal though so I don't know if this makes a big difference. IUI has never been discussed as an option for me, they went straight to ICSI as we have slight male factor too. I suppose everyone's case is different but you could always call Nick and just have a chat as he is always very helpful. I don't find Sheldon very forthcoming with information, so there might be a perfectly good reason why he doesn't want to change your protocol - I always think of questions afterwards and ring Nick or Katie for answers. I have only seen Miss Bevan once and that was at the very first stage, when I suppose she 'approved' us for the treatment, but that's all. Sorry Grace to go on about all these people you have never met! I am having the same protocol as last time, I did ask if I should have just a litle bit more menopur but apparently 6 or 7 doesn't make a lot of difference and 7 is the maximum dose anyway so they kept me on 6. And yes, I am getting excited! Drugs are arriving on Sat morning and depending on how AF is feeling she could turn up next week or the week after or the week after that just to really p*** me off! The only thing that I get really stressed about (apart from the obvious whole IVF thing) is the taking time off work for the scans. Daft really as my work are all women and have been SO understanding, and I always try and get late afternoon appts. I suppose I don't want them to think my mind is not on the job. Unfortunately I work in Burgess Hill, Sussex so end up leaving work too late and racing up the M23/M25/A3, usually late for appt. Sorry, I have rambled on for ages, Keep in touch and I'll keep you posted on how I'm doing Lots of love Kat xx

jen · Post by **jen** » Sat Sep 06, 2003 3:17 pm

Hi Girls Hope you don't mind my butting in - I'm an ex-Roehamptoner! We had 1 IVF and 3 ICSI's there. The first and last we paid for and the middle 2 were NHS funded - all -ive unfortunately. We live in Banstead and are under East Surrey Health Board (I think). All my treatments were long protocol, started sniffing on day 21 of my cycle. All the staff at Queen Mary's were lovely, especially Katie, but after 4 -ives and nothing changing really in my treatment and no answers or more investigations we decided to try elsewhere, we also didn't like the whole Transport thing - going to 2 different clinics. We chose the ARGC and had a -ive back in July, although we were gutted they did put me on a short protocol and after a few tests to begin with they gave me a lot more drugs. Had a very low level positive blood test so they do think that implantation occured, that's the furthest we've ever come to and I've got to have the NK cells test and we will go from there. Looks like I'll be following down your road Grace. Kat - I've seen your more recent posts and am wishing you all the best for this treatment, will be looking out for that big +ive. I know this is very longwinded (I should post more often) Helen - my health insurance covers me for infertility investigations and so I was able to see Dr Bevan privately at the Victoria in Kingston - Sheldon had said it would take a few months to get an NHS appointment with her. She was great to talk to though - very straight forward. Girls best of luck to all of you with the treatment. Love Jen xx

Kat · Post by **Kat** » Sat Sep 06, 2003 4:59 pm

Hi Jen, nice to hear from you. Am starting injections tonight so keep everything croseed & lets hope we all get some good news soon. didn't realise you were in Banstead - spent a lot of time there in my teens (in pubs), know it well. Are you from there originally? Lots of love Kat xx

Grace · Post by **Grace** » Sat Sep 06, 2003 5:08 pm

Kat, Just wanted to wish you all the best with this one, will be looking out for you updates. I will be down regging myself in two weeks time so not far behind you. I have tested positive to the natural killer cells so will be on steroids from et onwards. Hello to Helen and Jen too, hopefully some of us Surrey girls with get lucky soon! Gracexx

jen · Post by **jen** » Sat Sep 06, 2003 5:28 pm

Hi Kat Good luck with the injections tonight - isn't it wierd how we actually can get excited about getting jabbed. I've lived in Banstead for about 8 years, I'm actually from Ireland but moved over to be with hubby. Aren't you Irish as well Grace or am I mixing you up with someone else on this site? I've a feeling I'll be joining you Grace on the steroids - in a way if I test +ive for NK cells, I think it will be a relief to finally find out what's wrong. Take care girls Love Jen xx

Grace · Post by **Grace** » Sat Sep 06, 2003 6:38 pm

Hi Jen Just had to reply as yes I am Irish too!!. Had n't realised you were though. I am from Tipperary but have been living here for 13 years. Am going over there on Thursday for a few days. Won't have much time to think of all this business because will be catching up with everyone, you know how it is. Am really looking forward to it but even after all these years always get a bit home sick when I return..silly is n't it. Had mixed feelings about the NK cells in a sense pleased that this might be the key on the other hand I keep thinking ...not another thing wrong with me!! and hate the idea of taking steroids but if I get a result I would take anything. I think it is a good sign that you had the low level positive - even though I know it must have been hard on you both. Hopefully next time will do the trick. When are you going for you NK tests? I am sure will chat again soon. Take care Gracexx

Helen GB · Post by **Helen GB** » Tue Sep 09, 2003 10:08 am

Hi Girls, Kat - thanks for the reply above about Roehampton. I agree that Sheldon is not very forthcoming. I also find him a bit ignorant on basic ttc issues. I had a query on bbt charts and he got it all wrong - doesn't fill me with much confidence sometimes. I am still keen to get a second opinion...I think we may pay to go elsewhere for a consultation at least to see what they say. Good luck with yr next IVF - let's hope this is your turn for the big fat ++++++++ !!!! Jen - Banstead - that's where I spent the first few years of my life. I was born at Epsom hospital as my parents were living in Banstead. I am now in Thames Ditton but have stayed in this area all my life so am a Surrey girl born and bred. I have seen Miss Bevan several times throughout the testing stage and she did my Laperoscopy and Hysteroscopy last month. I have found her extremely helpful and easy to talk to and wish it was her I could see when visiting the AC unit instead of one of the other Drs. As we are self-funding I would like to have tests such as the NK cells test before paying for another IVF attempt. Do you know if you can get this test done on the authority of a GP or does it have to be a specialist unit? Grace - hope you have a good trip to Ireland and good luck with yr next xyxle. Must go and do some work now, Love Helen

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