* Author Topic: Low AMH / High FSH Cycle Buddies - Part 6  (Read 126991 times)

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Offline chini

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Low AMH / High FSH Cycle Buddies - Part 6
« Reply #1820 on: 21/01/19, 18:31 »
Hello everyone!

I'm terribly sorry for the long absence - you've been in my thoughts and I've really missed the forum!

Especially I want to send a hug to Babyhopeful and Queenie - I'm really sorry it didn't turn out the way you hoped!

Also big congratulations to Klik - I'm super happy for you!

AFM - Since I've last been on the forum, a lot has changed. I've started treatment at the Lister with Dr Parikh, and she found out that I have severe adenomyosis (like endo, but inside the womb muscle) and a sub-active thyroid (TSH 3.8 ). She put me on 50mg Levothyroxine since late October with a view to get my TSH under 2.5, and a 2-3 month pre down regulation on the combined oral contraceptive pill since late November (first 2 packs Microgynon, then Yasmin), with the view of then doing 2 weeks "proper" down reg with GnRHa (Buserelin), then long protocol.

Since November I've also been on an anti-inflammatory diet to heal/calm down the adenomyosis, meaning I've cut off all gluten, dairy (except tiny amounts of organic butter for cooking), sugar and alcohol - and I've continued being caffeine-free and not eating meat (I do eat eggs and fish). I also have a pretty substantive anti-inflammatory/adeno healing and egg-quality-enhancing supplement protocol created by Mel Brown, and use turmeric lattes, flax seeds, chia seeds, milk thistle seeds, Brazil nuts, berries, pomegranate and cruciferous vegetables on a daily basis. I also started weekly acupuncture with Eva Stecz (London Acupuncture Clinic) and reflexology with Rima Shah (Neal's Yard Therapies) since November.

However everything is going wrong, as I've been bleeding nonstop since I started the pill - so today that's 59 days in a row. And not only that, but in addition from around Christmas time onwards the adenomyosis pains have come back, sometimes as bad as before starting the medication - e.g. today the pain was so intense that I wasn't able to go to work.

I've asked my Dr about swapping into a progesterone-only down regging medicine such as Norethisterone or progesterone cream, but she tells me the only alternative to the pill is to quit the pill, do nothing, and then just start the GnRHa injections without any prior medication. I'm quite worried because she doesn't seem to have many ideas about how to handle my case, and not sure if I believe that there aren't any other alternatives.

What is obvious however is that the pill isn't working for me. So now I'm trying to decide whether to push for swapping into progesterone-only down reg meds, or just stop taking the pill and let my body recover for 2-3 months (maybe fast and detox and do lymphatic drainage to get rid of all the excess synthetic hormones circulating in my body) to start again in e.g. March. As it stands I don't want to proceed with this cycle as I know my womb is an extremely inhospitable environment at the moment, and I don't believe 2 weeks on GnRHa and then long protocol would be enough to heal the adenomyosis enough to allow a pregnancy even to start let alone to develop. Another option would be to ignore all the issues with the pill (not necessarily a good idea?) and go on to do embryo banking, maybe several back to back cycles, then take a proper break (3-6 months) to heal the adenomyosis and once that's sorted start doing FETs. It doesn't help that my Dr doesn't answer the questions I send her by email, so I still don't really know what she wants me to do next, even though I've emailed her about this three times within a week.

As you can imagine at this point I'm starting to get pretty desperate, and would be massively grateful for all and any ideas you might have. Has anyone with endo/adeno had similar experiences, and what kind of priming and/or down reg has worked for you?

I'd be enormously grateful for any ideas! x

P.S. I hope you all have a lovely start of the week and I'm super happy to be back!

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    Offline ShadyWheat

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1821 on: 21/01/19, 19:30 »
    Queenie, I'm so so terribly sorry. Really had high hopes for this cycle for you too after the long break, getting healthy and also the promising number of follicles you had. I know this is a stats game, but it still is crappy when you keep producing and putting back good looking embryos and not getting anywhere. Sending you big hugs and the strength to regroup and keep on going. xxx

    Babyhopeful, I'm glad going back to work hasn't been too terrible for you. So lovely about your colleague, I had tears in my eyes reading it, it is a club that you don't want to be part of, but people are exceptionally understanding when they've been through it too. Yoga and reflexology sound like fab ideas to keep you grounded. I would love to have the patience for yoga but I just can't sit still long enough! If it reassures you, with my 2nd MC, it took over 7 weeks for AF to come back so presumably 4-5 weeks for ovulation to occur. The waiting is the hardest bit but its good signs you got the all clear infection wise and the betas are low, so hopefully your body will bounce back very very soon x

    KatKat, that sucks about the tennis elbow! I hope you can get prescribed prednisolone just to rule any inflammation out. I wouldn't postpone the cycle though, but I'm too impatient to wait! Good luck with your scratch, are you having that done with Dr Brosens?

    Helen, glad you are enjoying Athens, how is the weather there? I'm jealous, we've hit a real cold freeze here! Follies sound good sizes, and I reiterate what Klik said, it will take a few days after stopping letrozole for E2 to begin to rise. How is your lining looking, if E2 is still low, it might be thin too, so you made the right call to ask Penny to go for a few days longer. Did you have another scan today?

    Bluedolphin, so sorry to hear about your experiences with the GP and NHS. I share your frustration - our GP is awful, so much so that I put off going to see him about anything. I have looked at going to another surgery but they have even worse reviews on line! Glad your allergy is getting better after taking steroids.

    Rillischen and NOV12, welcome! I am hopefully having a FET too in next couple of weeks. NOV12, I'm also agonising over the 1 vs 2 question but leaning very much towards the 2 just so I can get through my embryos which have been sitting for over a year in the freezer and back to collecting. However, I know I will be gutted if none work because there's the weight of expectation now after having had them so long. I see from your signature you have blasts and day 3s, that's great, you've done so well! In your position, I might try transferring the blasts singly first and then see how you go. Then maybe consider doing the day 3s in twos if those don't work?

    Klik, massive congratulations on reaching 16 weeks! I'm so thrilled. Funny thing is I used to like Meghan and I just loved the wedding, but now I'm just influenced by all these negative comments in the press about her being demanding and getting her own way and also I get annoyed by people who can plan life and it just all happens wonderfully for them!

    Chini, welcome back. Sorry I can't help with your dilemma as I don't know much about endo/adenoma. Have you considered going to see a specialist in this area rather than an IVF specialist? Then you can make a more informed decision (e.g. could collect eggs while you sort the uterine environment out and not lose too much time?). I have seen Ertan Saridogan at Portland/UCCH for surgery who is a fab specialist about a lot of things in the uterine environment, he does deal with endometriosis cases too. maybe you could consider seeing him? Klik has seen him too and he is wonderful.

    AFM, lining scan today was quite positive but not counting my chickens yet. 6.3-6.5mm so going for a few days more. I have a colonoscopy on Weds so i can't eat or drink anything to help though - currently doing a 'low residue diet' to prepare which as a veggie is very difficult, as I can't eat any fruit, veg or fibre of any kind. then I get to spend tomorrow and Weds morning taking laxatives - hurrah! I was thinking of cancelling but want to get stuff sorted as I've been off my Crohn's medications since the MC and neutropenia scare in Sept. Although I hope they don't find anything as then I might be able to stay off meds, and I'm honestly feeling so much better off them!

    Offline katkat2014

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1822 on: 21/01/19, 20:07 »
    Hey shady, I did a colonoscopy previously and I think I had to eat lots of stuff I don't normally eat like white bread etc. Hope all goes well! Scratch was ok and yes it was with brosens. I didn't get to speak him so I emailed them just now.  What day are you today? 6+ mm sounds good!

    Chini I am really sorry but cannot help regarding adeno (i was told I have some as well but not impacting things now so not doing anything about it) . Considering that this all may take some time I would be really inclined to start embryo banking if you can bear it and then deal with the transfers later and really focus on the uterus then. But of course it's also about managing the pain. I am just thinking age here as this may drag on for a while longer... Difficult!

    Offline Helenbeau

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1823 on: 21/01/19, 21:24 »
    Hi Kat, I wouldnít postpone. Youíre all ready to go more or less. No idea about tennis elbow but youíre right, itís not going to effect your uterus.

    Shady, lining is on the way...are your ovaries quiet? When do you think youíll transfer? Good luck for the colonoscopy. Yeah, Megan is due when I was too so that irks a bit, but things are never what they seem. I can guarantee that she didnít just get pregnant. She could well have been in and out if fertility clinics herself tracking her every twinge, hormone and ovulation. She could even have been banking! Who knows? Thatís what I like to think anyway, although maybe she is just annoying and actually had a shag and got up the duff! 😂

    Chini, welcome back. Sounds like youíve been through a lot. I have no idea about the adeno but I think the girls have a good idea to try collect eggs..59 days bleeding does not sound good. The pill doesnít seem to be agreeing with you and maybe you should get off it. Iím sure Klik can give you good advice with ando.

    Queenie, Iím so sorry. Iím gutted for you. Eughh, it just sucks! Sending hugs x

    Babyhopeful, I didnít ovulate the cycle after my MC. I did the following one. Also about the hair loss..I had the same and Iíve got thin hair. It will stop soon, promise. Hope youíre doing ok.

    Afm just did my double trigger shot. I feel more confident it was better timing than my previous disaster cycle at Lister. My oestrogen had more than quadrupled in 2 days. Klik it was measured in Pg/ml so it was a bit less worrying than a pmol measurement. All my follicles are 18 so the biggest hadnít really increased it the others caught up, except one at 14. My lining was 9.9 on Saturdayís scan and they didnít mention what it was today. Shady, I was surprised it was this thick even though the oestrogen was still low. Hope it stays good because I know anything can happen. Fingers crossed ladies. X

    Offline Sunshine122

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1824 on: 22/01/19, 12:00 »
    Sorry in advance for such a selfish post.... I have been for my booking appointment this morning at 9w and when I went to the toilet to do my urine sample there was quite a bit of blood. I told the midwife who wasnít able to book me a scan at the EPU until Thursday, there has since been a lot more blood and stomach cramps so its not looking good for me. Have booked in for a private scan this evening but think I already know what they will say. Iím currently sat in work thinking how I can get away 😢

    Offline Babyhopeful

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1825 on: 22/01/19, 12:06 »
    Sunshine122- Are you able to contact your GP? They may be able to refer you as an emergency to the EPU. Thinking of you xxx

    Offline klik

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1826 on: 22/01/19, 12:49 »
    Sunshine: this is terrifying but it's not over yet... Hang in there... I know the advice I got while the bleed is ongoing was to take it super easy and put my feet up. Can you take a sickie and make your way home in the least abrasive way possible (cab or car)? In my first bleed, I noticed that walking just made me bleed more. I understand you're really worried and really depressed, but you've still got a chance... This is the time for self-care. Really well done on booking a private scan... I send you hugs--I'm so sorry...

    queenie: I'm so sorry... Every transfer carries with it so much hope, whatever the stats may be, so it hurts like crazy if those are dashed... I'm really sorry...

    Blue: all good here, thanks! I'm sorry your GP surgery is so painful, especially given your memories of your father having been a great GP... I'm really glad the allergy has calmed down! To delay or not to delay is always a question, and I was always in favour of everything ASAP, never delay, but fat lot of good that did me... I think you should do what feels right to you!

    katkat: I personally wouldn't delay--after all, you were told a little bit more inflammation would actually be good for you! But then again, it's just what I wrote to Blue above--I was always a "don't delay"-type person, but that never actually got me any results. So I think listening to your intuition is probably the best thing you can do... I'm sorry your elbow hurts! When do you have to decide?!

    NOV12: thanks... your plan makes sense--and you can always change your mind later, of course. Shady's thinking makes a lot of sense, too--to start with blasts one at a time and then switch to two at a time if the blasts don't take. My instinct is to save the blasts for last but frankly this way makes a lot more sense... Or if you want to keep giving each embryo the best possible shot, you can just keep going one at a time. Though hopefully you'll get lucky first time--good luck!

    chini: thanks! I do have adeno, but it's small and apparently doesn't affect anything, so I've not paid attention to it and can't help you there... Your experience on the pill does sound familiar to me, though. I don't know if you're going through the same thing I went through, but I took the pill once, like 3 years ago, and around the time when I was supposed to ovulate if it weren't for the pill, I started bleeding instead... It turned out to be breakthrough bleeding--the pill had entirely suppressed my ovaries, therefore there weren't any follicles making any oestrogen, therefore the lining broke down. You could check hormone levels or have a scan if you want to see if this is what's happening to you... In my case, it did mean that my next cycle was anovulatory. The pill shut down my ovaries completely not just for the cycle I was taking it, but for the next cycle as well. It was terrifying as I thought my ovaries had just given up forever--but the following cycle (so, second cycle after stopping pill), my ovulation was delayed, but when it came, I had two big juicy follicles on a completely natural cycle. So the upshot: your ovaries may shut down, but if so, don't freak out: they should bounce back. Personally, if the pill is causing breakthrough bleeding, I'd get off it, unless it's necessary for treating the adeno...

    Shady: thanks! Ooh, I'm so out of royal gossip I didn't know Meghan was being a diva! As for planning, I was just thinking today about how the very concept of a birth plan seems entirely laughable. Nothing in this process has gone according to plan, and I don't think any of my friends who had babies had childbirths that looked remotely like their birth plans. And yet, it does seem (at least from the outside) like at least some aspects of some people's lives go according to plan. And that is annoying, yeah. Still, in this chaos that seems to have us in its grip, sometimes, hopefully, there is some luck... And I wish that's what life has in store for you, for this next attempt. The lining certainly seems promising so far! And I also hope the colonoscopy gives you the all-clear so you can be off the irritating meds and get a portion of your freedom back... Good luck!!!

    Helen: wow, good luck for collection tomorrow! Everything is looking really great! Not sure why the two large ones did not grow in a couple of days, but no matter--hopefully you'll get at least one perfect egg in there that will give you a perfect, sticky embryo... I'll be thinking of you tomorrow!

    Babyhopeful: sending you hugs...

    Offline Sunshine122

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1827 on: 22/01/19, 13:43 »
    Thankyou, Iíve managed to make an excuse with work as the bleeding was just too heavy and now Iím back home resting.

    Babyhopeful, I donít think my GP would help tbh based on my previous experience, I think they will just say wait until the NHS appointment on thursday. The midwife did say if it gets worse to go to A&E but last time we went they said they donít have a scan machine there and had to travel to the next hospital 45 mins away. I would probably prefer to have a scan with A&E as atleast then if it is bad news they can give me some advice, Iím not sure how good the private scanning company will be! But atleast I will know either way x

    Online Briss

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1828 on: 22/01/19, 21:32 »
    Ladies, apologies for lack of personals I am trying (and failing) to keep up but there is just too much going on at the moment with the redundancy and all. Still, Iíd like to update you on my cycle because I think it might be helpful to some of you.

    Protocol: long protocol, Synarela nose spray started on day 7 after ovulation and until (and including) the day of trigger. Pergoveris 225 started on day 4 and for 11 days. Triggered with 10,000 Brevactid. Estrogen levels the day before trigger were over 4K i.e. around 1K for each large follicle. The follicle sizes 20, 19, 16, 13 (also day before trigger).

    EC on day 17 (unusually in the afternoon but exactly 35 hours after trigger). 7 follicles needled with no sedation (ouch!). I never understood why they go for smaller follicles but here we are. Right side 4 follicles but only one egg (probably the one that was 13 mm the day before trigger). Left side 3 large follicles and 3 eggs. All 4 eggs were mature for ICSI but only one fertilized. ET: day 3 perfect 8 cell embryo.

    My thoughts:

    LH was kept in control the entire time Ė this is new to me. This was really a totally stress free cycle. I could feel that we are, in terms of follicle size and sex drive (i.e. estrogen level), far over what would have been LH surge on natural cycle and yet LH was nice and low (4-5). Shocking.

    Interesting that I responded at all, I discussed Synarela with a doc at Reprofit but she was totally against it saying I will not grow any follicles on it. Totally reasonable suggestion by the way. No idea why but I did respond.

    4 is a good number of eggs for me. However I did get 4 eggs (but only 3 mature) on short protocol with 450 menopur when I was 38 but with zero fertilization result. I guess getting 4 eggs 4 years later (and on lower stims) is pretty good particularly with 25% fertilization rate (I mean it is disappointing to only get one but itís a whole world better than zero). Still, I do get one embryo on my natural cycles so query whether going with stims makes sense to me. In terms of cost, this cycle is worth 3 natural IVF cycles. 

    This cycle was on the back of estrogen priming cycle with elonva/menopur that only produced one dominant egg which we did not get in time. I do not know whether this has a bearing (two stim cycles back to back) but it might.
    Sex drive kicked in 3 days before trigger and was super high up until a day after EC. I was drowning in EWCM for days.

    I went to the gym during stims and did quite a bit of running but also went to sauna a couple of times (probably a stupid idea).

    I did all my scans and bloods in Munich this time Ė 4 trips in total Ė exhausting! But as I said stress free, I let them make all the decisions

    Offline ShadyWheat

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    Low AMH / High FSH Cycle Buddies - Part 6
    « Reply #1829 on: 23/01/19, 09:49 »
    Briss - congratulations on being PUPO! Was wondering how you were getting on, I think this is really encouraging to get 4 eggs and one perfect embryo out of it. I understand in terms of cost though a stimulated cycle is much much more than a natural cycle, but glad that you felt this was a stress free cycle. To me that is sometimes worth the money, because the stress would have a counterproductive effect on my health and mental well being. Keeping everything crossed for you and this being the lucky one.

    Sunshine, I'm thinking about you and desperately hoping the baby is ok. Bleeding doesn't have to mean its the end, but it is just so scary when you see huge amounts of it and there's nothing that you can do. xxx

    Helen, massive good luck for your EC today! Go get them girl! ps, my sister said exactly the same about Meghan. She reckons she was defo seeing a fertility specialist already. xxx

    Klik, celeb magazines are my guilty pleasure whenever I wait at the acu clinic  ;D Otherwise I would have no idea either what was going on!!!

    KatKat, I was CD13 on Monday, will be rescanned on Thurs which will then be 2 weeks of oestrogen. Lister said to me it normally takes at least 2 weeks of the oestrogen pills to get there so very earliest I will be transferring blasts would be Tuesday (which would be CD21). Hope this helps with planning the timing of your cycle for next month somewhat! I have to say I have found this medicated cycle very easy and stress free so far. Have managed to make excuses at work so they don't have to know and its less appointments than the natural cycle was.