* Author Topic: Low AMH/High FSH Cycle Buddies - Part 8  (Read 13599 times)

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Offline dorchestor2016

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Low AMH/High FSH Cycle Buddies - Part 8
« Reply #170 on: 1/10/20, 18:56 »
Hi hope u r ok?
You need a fresh cycle now
Some cycles will be this way
Some cycles will ovulate some not
How about trying Noristhisterone to restart everything?
The small follicles give hope For next month once u have a clean slate

Maybe itís the cyst making LH and estrogen

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    Offline mouse80

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #171 on: 2/10/20, 07:31 »
    Briss sorry to hear things arenít going to plan. It sounds like there is some really helpful advise from the ladies on here. Iím sorry I canít add anything other than to say I hope youíre ok.

    Dorchester hope you are doing ok and managed to get some help planning the next cycle?

    Queenie hope all is ok with you?

    ATM had my baseline scan yesterday at lister. Was a bit of an emotional day as my close friend gave birth and was just a stark reminder about how long Iíve been trying that people will get pregnant and have babies and i feel stuck on this treadmill that doesnít seem to go very fast. The sonographer joked that they should get a room for me at the clinic as Iím there so much. At least we could joke about it.

    Baseline scan showed 6 tiny follies. 3 on each side. But to be honest it doesnít seem to matter with me how many there are as only 1 or 2 ever grow. On my best cycle there were only 4 follies at baseline, 3 grew and we got 1 egg. So I wonít know till Monday at the next scan to see whatís happening.

    Just wanted to get your views on whether you think itís worth getting a hysteroscopy after this cycle? They have suggested I get one if my lining is thin again but if my lining is ok Iím still wondering if itís worth getting one? My HSG was normal but I know Itís not that great at picking up adhesions. 

    Offline queenie123

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #172 on: 4/10/20, 15:06 »
    Briss -  I am so sorry,  yes that sounds like you need to cancel and take something to clear the cysts before trying again.

    I don't suggest this for everyone, but it sounds like for you it might be time for something different .

    Have you thought about stem cells?  - They work best in people who are not cycling regualrly, who no longer ovulate normally.   
    For most people who are regulalar I think just keeping going is the best bet - but if your body isn't even producing a follicle on it's own it might be time to conside it.  Sorry to thwart your plans, but I know how important OE is to you, and

    Mouse - That isn't a bad scan at all for a baseline! What protocol have they suggested, (a low dose one in my opinion) would be best.
    I am afraid I am not the best person to advise on the hysteroscopy - I had one in Athens and it was all fine, but I agree with Kilk HSG only gives limited information unfortuantely - it isn't the same as looking at the uterus with a camera!

    AFM - first appointmenet with the midwife this morning,  the trains were cancelled so was stressful getting there.
    The midwife referred me to the endocrinologist, and the obsteatrician and councilor, and categorised it as high risk - so I am pleased I will be on the right pathway and getting some more attention.   12 week scan on the 12th, (12 wks exactly!). 
    Only concern is that I don't get to see the consultant until 20wks, and I would really like to see them at 12-14wks, mainly just for clexane and progesterone advice as the midwife doesn't prescribe.

    Offline Briss

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #173 on: 4/10/20, 21:58 »
    Thank you, Queenie, I guess I needed to hear that. Things have deteriorated considerably in just a year I went from having 8 eggs collected in 2019 to not even growing a follicle in 2020. I have been thinking about the next steps but I am not sure I have it in me to undertake the research into stem cells and other more exotic procedures. I feel I have gradually run out of stim somehow. I have just about enough energy to go through the stim cycle motions but do not seem to have it in me to undertake something new and adventures with even less success chance then before. I am also drowning in regrets why did I waste 2 years trying naturally with poor sperm before doing IVf, why did I BF for 2 years etc etc I have days now when I am overwhelmed with anger. It might be part of a process of acceptance or possibly this is just what growing old is like for some. A loss of youth is hard. I know it may seem funny to think of oneself as young when you are over 40 but surprisingly until most recently I did feel and look pretty young. Or possibly the loss of estrogen thatís been my friend and life companion is just too much to take. This last cycle with no estrogen and no growing follicle was so shocking that I am yet to recover. Munich suggested to start estrogen priming next week. I have no idea if this is the right approach. I know it lowers your estrogen and mine was low already. On the other hand who knows what my next cycle would look like I may again get oestrogen over 1000 on day 1 for no apparent reason.   

    Re stem cells, I think you mentioned before that the treatment had short term effect? Do you feel doing this treatment somehow improved your ovarian function generally and might have contributed to your successful cycle?

    I am really glad you are getting proper attention now. Have you had harmony/panorama tests? It was the most critical milestone for me in the first trimester. I also wanted this reassurance before the 12 week scan as a lot of 35+ ladies were getting high risk results based on that which created unnecessary stress as the 12 week scanning is really not as accurate as panorama/harmony.   

    Mouse, hi and welcome! I am so sorry I did not welcome you properly. I have just been so wrapped up in my own misery. We can all relate to the pain of friends giving birth, there was a point where I had to gradually give up friendships in order to stay sane and keep going. You do what you have to do to survive on this heart-breaking journey. Your sonographer sounds mean (although I am sure she did not intend to be). I wish they would be more careful with what they say. On my last painful (no follicles) scan the sonographer effectively said something along the lines that she saw 50+ ladies in better shape than I. and I am pretty sure she did not mean it like this but possibly wanted to say that age was not such a significant factor but I wish she kept her thoughts to herself. Itís so good that you are a clinical psychologist, even if you cannot apply these things to yourself you must have colleagues you trust who can advise if needed? A gyno last year told me after hearing I had gone through over 30 IVfs that I have been so strong for so long and that I need somebody to take care of me for a change that I started crying but immediately felt it was a trap he just wanted me as a client. But I do wonder maybe I have gone mad long ago and did not even notice   

    Your scan sounds OK and I hope your Mondayís scan is even better. Why were your previous cycles cancelled? Even if you grow just one dominant follicle itís still enough (actually from where I am standing at the moment one follicle is pretty great Ö. ). In the past I only did natural IVf with no stims so one follicle/egg per cycle was totally normal to me.

    Your post c section issues with bowel and bladder could be connected to persistent thin linings. Have you had a scan with doctor Jurkovic? If not, Iíd suggest him in the first instance before you go for anything invasive like hysteroscopy or lap. He told me more about my endometrioma from a scan than the surgeon after lap & hysto. He really has a way of seeing things inside from just a scan. He also looks for movement so notices things that could indicate adhesions. Having said that Iíd go with Klikís advise on this as she is our resident expert.

    I cannot say anything about letrozole, I do not have any experience with it.

    Re back to back cycles, I had back to back cycles for years but mostly natural IVf so no meds just EC/ET. I also had stims back to back cycle and actually my last BFP was a result of the second back to back stim cycle but I have to say I did not do more than 2 in a row with meds. In the past I could rely on my natural cycle but now itís got to be the meds and I noticed that after stim cycle my next natural cycle is often better. Have you tried natural IVF? Maybe you could throw in a few natural ECs in between stims?

    Re multiple failed cycles, I totally get how draining this is. Actually just today my attention was drawn to somebody talking about constant failure and how a person effectively gets used to that so they do not plan for success any more. I could immediately relate. After years of back to back  failed IVfs when I got BFP I totally dismissed it. I did not expect it to work and it did not. Itís the mind-set thatís at fault. I am yet to learn how to re-set it.

    Btw, I think you were right to cancel the cycle with estrogen of 420, itís way too low for any hope of a good egg. I have gone through far too many unnecessary egg collections where I could have predicted that the egg would not be good enough. Just like you I was never able to give up as I kept thinking what if this is the one!  But of course you can never be absolutely sure but on balance I think it was the right decision. Also, I am not convinced your lead was actually a follicle and not a cyst especially as you seemed to have a runner up follicle. This is always difficult to work out whatís a cyst and whatís a follicle. I personally go by estrogen levels. Large follicle + low estrogen = cyst. But even then, on my last cycle this formula did not work at all as my LH surged out of the blue.

    Re early egg collections, I had eggs collected as early as day 4 (while I was still on my period). It all depends on many factors but generally if you still have your cycle the more reliable outcomes come from day 13-14 collections. Most of my cycles I ovulated on day 11 (which was normal for me) but my BFps mostly come from collections on day 13 and later. I was never able to find a reason but over the years I developed a preference for later ECs as being more likely to result in a good quality embryo.

    Your age and your stats look very promising. After 4 failed cycles with lister, Iíd change the clinic. Something does not work. I tried 2 clinics in London and 1 abroad before I found a clinic in Munich that got me pregnant on the first go. although obviously the second time around this is not working as wonderfully 

    Offline queenie123

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #174 on: 4/10/20, 23:01 »
    Hi Briss,
    So sorry again for your last cycle - I've been wanted to suggest Stem cells for you for a few months, but there is never really a 'right' time.   I only know about Serum's stem cells i'm afraid, but I did research it quite heavily in 2017 (when I had it done), and at the time there was only 1 other place I would have considered, which was somewhere in Spain.  I still think Serum's technique is world leading, both in their culture of the stem cells and their implantation protocol. 

    It is an individual descision - and the Benefit is definately best for those who have least chance with conventional methods.  It can work to re-start ovaries that are giving up,  but perhaps works less dramatically for people like me who are not quite there yet, even though we are struggling. 

    I had it done when I was 34 and my cycles were regular, and, I did have high(ish) FSH (12-20)  but it wasn't high every month, my LH was normal(ish) to peak, and I was still producing quite a lot of E2.   So although I was definately DOR  there were viable options to keep going without it.

    For me, I tried it once and I got more eggs afterwards - But I tried a version of stem cells which was very early on - it has been improved since then.   The procedure done now involves a more advanced technique whereby there is a mesh implanted at laproscopy and the stem cells are grown into the mesh - it can then be 'topped up' with further injections of stem cells a few months apart.  The concept is that they then actually seed into the ovaries and have a more lasting effect.  In women who have stopped cycling regularly it has worked to get them started again on a more normal cycle - and there are a few pregnancies now as a result.  

    The downside is the cost - it is not cheap, and I calculated that I could have 7 IVF cycles for the cost of 3 stem cell procedures (3 procedures is what Penny recomends to get longer lasting results).  

    So the question is  - Have you made any viable embryo's on your last 7 cycles?  If the answer is No then might that money be better spent on getting you cycling more reguallrly? 

    If you genuinly think with no stem cells that you can get pregnant with 7 cycles - then keep going!,  if you are just doing it becuase lets face it - it's what you have done for the last decade of your life (don't worry you are not alone) - don't keep going just because you don't know what else to do and can't face the thought of giving up.  Do something that will change the odds for you / stack the table in your favour. 

    I agree E2 priming might work for you, but I also question if it will be enough as your FSH is likley very very high now, but you might also want to consider adding in T as well - it will prime the follicles to respond differently to your LH, then the Pergovaris will work better.   If you do do the E2 priming, see if they will let you overlap for 3 days and start your stims whilst you still have a pacth on so there is a little E2 to help your follicles respond.

    I think what you are feeling is totally normal.  In June (before this had worked) I was so blue and really close to giving up and so so cross with myself for trying to grow so many embryo's to blast that never made it in a petri-dish (what a waste), so so cross with the clinics for not freezing d3, and cross with myslef for wanting to bank for 3 years.   It's tough - when you are at the stage when you are reaching accpetance it is a journey and anger is part of that journey.  You can keep going through that journey and perhaps you will find acceptance at some point, or perhaps try a new approach??

    Offline mouse80

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #175 on: 7/10/20, 10:27 »
    Queenie Iím glad they are making the appropriate referrals in the Nhs but completely understand why you would want some input sooner. Itís such an anxiety provoking time and hope you also have some time to enjoy the pregnancy.

    Briss thanks for your kind words they actually brought a tear to my eye as I like you have experienced similar emotions around feeling angry. I have often said to my partner that I BF for too long and maybe I should have stopped sooner and we should have tried sooner. But then I never knew it was going to be such an issue to conceive. I have actually been pregnant twice. Once in 2015 and I terminated at 6wks for lots of reasons I wonít go into. But then I fell pregnant easily again in 2016  and just assumed i could always fall pregnant easily and naturally. You can imagine how much sadness I feel how about terminating that pregnancy. Sometimes I feel my infertility is a punishment. I try to not go down this particular rabbit hole too much as itís too painful and just not helpful right now.

    Iím sorry youíre going through such disappointing cycles and Iím not surprised you are feeling the psychological strain of so many failed cycles. I think youíre right that itís a process and Iím not sure itís the same for everyone but I think anger and grief is definitely part of it. Iím thinking of you and am amazed at your strength in doing some many cycles.

    I agree re changing clinics. 5 back to back stim cycles has cost us a fortune and I think some of them could have been better if the clinic had monitored a bit more closely. Although my partner is saying that we need to stop after these next 2 which feels frightening and likely why I had such a bad reaction to my friends baby news.  Iím not sure Iím ready to stop but Iím not sure when I will ever be ready to stop.

    ATM there were three follicles responding to stims (5mg letrozole and 225 menopur) at the last scan. They were 11,11,12. I have had this before and even though it looks promising at the beginning only one ever grows big enough to contain a mature egg so we will see. The lister called on Monday to say up my dose to 300, no explanation. I will ask today at the next scan the rational for this.


    Offline dorchestor2016

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #176 on: 7/10/20, 21:12 »
    Hi Ladies

    Briss please donít give up hope I really feel you and been going through the same pain
    You might pick up again in a month or two
    Sometimes body decides to take a break and decides for itself
    I know there must be a solution out there...

    IVI spain do Stem cells

    https://www.ivi.uk/blog/hope-for-women-with-premature-ovarian-failure/

    New York and California have stem cells

    IVI London

    https://www.google.co.uk/amp/s/www.ivi.uk/blog/hope-for-women-with-premature-ovarian-failure/amp/
    the consultant at IVI is in London
    I met him once at a show Is he very good

    Queenie did PRP...

    Queenie
    Can you send me details of the Stem cells group?

    Mouse:
    Maybe 300 to push other follicles to grow more
    keep on their case
    Also you have good response and try to focus in the moment and eat well and think positive thoughts
    Good luck

    Offline queenie123

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #177 on: 8/10/20, 08:29 »
    I did NOT do PRP

    I did Meschnechymal Stem Cells.

    Offline mouse80

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #178 on: 8/10/20, 09:25 »
    Dorchester hope youíre doing ok?

    Yes the 300 was try and push the other follicles. Scan yesterday showed the others are not budging. So I just have to hope the 3 that are growing so so at a similar rate. Hoping for collection Monday. On my last cycle when we actually got to collection the largest follicle was 23 and the others 17-19. But they only got one egg. I wonder if they need to let them get a bit bigger rather than triggering at 18/19. Back tomorrow so will see what they say then.

    Hope everyone is doing ok.

    Offline queenie123

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    Low AMH/High FSH Cycle Buddies - Part 8
    « Reply #179 on: 8/10/20, 10:38 »
    Mouse - yes let them get bigger, but there is a problem if they get too big, bigger than 23/24 and they go cystic and it's a waste to do that with the dominant.

    I honestly think you should look at the rate the 11,11and12 are growing.  There is really no point pushing for more than 3 - your aim is not to get 6 eggs, but to get the best 3 you can get (if possible).   Personally I wouldn't increase the dose unless you are adding in cetrotide or the rate of growth is slow (<1mm/day).   It sounds counter intuative, but for DOR woment quantity and quality are not the same thing.