Question for EmmaS (success ment)

Question for EmmaS (success ment)

betz77
betz77

April 15th, 2011, 2:43 am #1

Hi Emma. I know you mentioned a while back that you were cycling with Dr Check. I know he does not do phone consults and I'm still deciding whether to call the clinic and speak to somebody else or not. I just figure if I'm going to the effort I may as well speak to "the man", right?

Anyway, I was just wondering what protocol he had you on and how it is all going for you. I have finally found a clinic here in Sydney that is open to suggestions and she has agreed to work with anything I can find (she is high FSH friendly and seems to know what she is talking about). She gave me hope when she said she has gotten a 46 yo woman pg with her OE!

Thanks.
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EmmaS
EmmaS

April 17th, 2011, 1:25 am #2

Hi betz77,

I'm glad you found an RE who is willing to follow this through and who is willing to work with more challenging cases... Yes, for check you need a face to face initial consult, but other doctors at Cooper may be willing to do it all over the phone.

As for my 'protocol', for about 8 months last year I was following Check's advice and taking estinyl (ethinyl estradiol), usually 20 micrograms per day, to bring down my FSH and see if any follicles would start growing once the hormonal environment was 'normalized'. The estinyl was quite successful at lowering my FSH, but I did not grow a single follicle during this time and my estrogen stayed quite low, although it would rise a little every cycle (over-suppression is something mentioned quite a bit on these boards and I suspect that is what this was). I would stay on estinyl for 2-3 weeks and once estrogen started dropping off (usually it would go up a little and then start dropping off) they would advise me to start Provera to bring on a period and start again. Because I never produced a follicle, I was also not an IVF/stimming candidate and he did not really propose any 'protocol' as such - at one point we had a phone conversation about whether it is worthwhile trying stims, so he said I could try Clomid and 'see what happens'. My RE here refused to prescribe Clomid, but agreed to Puregon - which Check was OK with too. This achieved nothing, really, except for raising my FSH (Puregon is basically FSH) and it took a while for it to come down to 'normal' levels... I'm writing this so you know what the outcome was for me and to be realistic - but your situation may be very different to mine and many women here have had better success with Check. There were also recent discussions on the board (last week I think) about managing OOT monitoring with Cooper/Check - someone advised to schedule regular phone consults to speak to an RE directly (once you become a patient there), rather than communicate primarily with nursing staff and I think this is excellent advice. You need to ask to be put on the relevant doctor's call back list and they will schedule for the doctor to ring you directly.

I am still formally a patient of Check's but have reservations about what estinyl can do for me, so am reluctant to go back on it. I decided that it was time to move on in January 2011 and just stopped everything, including monitoring. In March, I went for a blood test as I thought I had ovulated (could feel some ovary pain) and they saw a follicle of 5mm which grew to 17mm in a week - we tried timed intercourse with a trigger (following Check's advice) but it was a BFN. This was the first follicle that I developed a follicle in nearly 2 years, so at least that was something. I am currently just monitoring this next cycle, waiting to see what will happen. I thought I'd share this so that you know where I am up to, but mine is a very tough case and you may well be very different - there are many women here who are in a much better position and have been successful with Check and others...

Good luck and best wishes on this tricky path...

EmmaS


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betz77
betz77

April 18th, 2011, 11:44 am #3

Thanks so much for responding in detail. I'm sorry that you haven't had much luck over the past year. I was hoping for a BFP for you and wanting some hope. Our story is actually quite similar in that our cycles have gone AWOL and very high FSH. I have been told I have Resistant Ovarian Syndrome because I had ovarian antibodies and some antral follicles during scans. Have you had your antibodies tested? Or had a thorough workup? It may be an autoimmune issue which I strongly suspect is the case for me as I also suffer from low platelets (another autoimmune condition). Although I dont know what the treatment is for that yet. I did see an RE here who specialises in immunes but he wasn't very nice and wasn't willing to help me further.

I am sorry that you are going through this and hope that you find success really soon.

Beti
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Joined: September 29th, 2010, 9:51 pm

April 18th, 2011, 12:54 pm #4

My story is very similar to yours. I am TTC#2 but was high fsh and have been a part of these boards for a while. I've never formally had my AFC measured but when TTC#1 I never had more than 2 follicles even on high stims. I did go on to get pg w/ an IUI + clomid (5 days @ 100) + gonal f (day 8-12). That was when I was having normal cycles on a regular basis (mostly). FFWd 3 yrs and I have not had regular cycles - similar to Emma - maybe 3 this past year and I've been with Check since Oct and the same sort of protocal as her. Estinyl to lower fsh which worked but over suppression so after 40days I would start provera. This went from Oct-Jan with not a follicle to develop. I took a planned cycle break (still on that break) as it's now April. The reason I mention all of this because at one point, Check did have me do clomid for 2 days in a row to see if we could stimulate the ovaries (while on estinyl). I know many ppl do not like the clomid but based on my previous experience I gave it a try. I think it was too late in that particular cycle but I am not opposed to doing it again. The gonal f used previously was to ripen the follicle once it was there. I am currently taking natural progesterone on the later half of my cycle to hopefully bring it back on a regular basis, then I'm going back to Check. I would agree too with getting on the call back lists periodically. Even though I live local I think this is the best to do. I wish you success and I hope this brings you hope. (Incidently, my 2nd RE where I was successful was willing to try the clomid/gonal f per my suggestion.) She was stunned that I conceived. Afterwards she commented she honestly didn't think it was possible. And she's from a respectable teaching hospital.
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