- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
Infertility
AngryBull
member
Long-time Lurker...(intro)
AngryBull
member
in Infertility
Hi all -
I've been lurking on this board for a while (honestly, I'm a borderline stalker at this point) but figured it was time to finally start participating. So I'm new here, but I'm not new to infertility. We've been TTC #1 since December 2013 and working with our RE (who is awesome!) for a little more than a year. I'm 36 and DH is 39. DH is perfectly healthy. I thought I was, too, but it turns out you can have a lot of sh*t wrong with you reproductively and still look and feel healthy! I've got PCOS (but I don't have any of the classic outward symptoms) and endometriosis (stage 3 and 4 but fortunately none of it is on my reproductive organs).
We did our first round of IVF this past September, which (I thought) conquered my problems. We ended up with 3 PGS normal embryos when all was said and done. But ever since then we've been trying to get to transfer. I've been through 4 FET cycles and all had to be cancelled because of thin lining. After the first two medicated cycles were such flops (my lining never got higher than 5.2 despite being on massive amounts of estrogen) my RE wanted to do a natural cycle in January to see what my lining would do on its own without any drugs. It was a dismal 3.8. So in early February we did a hysteroscopy to see if my RE could find any reasons for my poor lining. My uterus looked pretty good (not exactly helpful) but he did find some mild endometritis (different then endometriosis), removed it, and put me on antibiotics for 4 weeks with the hopes that things would improve. And they did a little - my lining got to 4.9 for my last cycle (another natural cycle) but we still had to cancel my FET since I need to get to at least a 7 before we can proceed.
So that's where I am now. My RE has worked with me to come up with a customized protocol as sort of a "last ditch" attempt to finally get to transfer. We're basically going to throw every drug imaginable at me and start early in my cycle to see if my lining responds at all. The plan is to do this with my next cycle (approximately late March or early April). I've been told that if this doesn't work there probably isn't really anything else we can do.
That's my story. I'm excited to finally be talking with others who understand how much this whole process sucks and I look forward to getting to know everyone!
I've been lurking on this board for a while (honestly, I'm a borderline stalker at this point) but figured it was time to finally start participating. So I'm new here, but I'm not new to infertility. We've been TTC #1 since December 2013 and working with our RE (who is awesome!) for a little more than a year. I'm 36 and DH is 39. DH is perfectly healthy. I thought I was, too, but it turns out you can have a lot of sh*t wrong with you reproductively and still look and feel healthy! I've got PCOS (but I don't have any of the classic outward symptoms) and endometriosis (stage 3 and 4 but fortunately none of it is on my reproductive organs).
We did our first round of IVF this past September, which (I thought) conquered my problems. We ended up with 3 PGS normal embryos when all was said and done. But ever since then we've been trying to get to transfer. I've been through 4 FET cycles and all had to be cancelled because of thin lining. After the first two medicated cycles were such flops (my lining never got higher than 5.2 despite being on massive amounts of estrogen) my RE wanted to do a natural cycle in January to see what my lining would do on its own without any drugs. It was a dismal 3.8. So in early February we did a hysteroscopy to see if my RE could find any reasons for my poor lining. My uterus looked pretty good (not exactly helpful) but he did find some mild endometritis (different then endometriosis), removed it, and put me on antibiotics for 4 weeks with the hopes that things would improve. And they did a little - my lining got to 4.9 for my last cycle (another natural cycle) but we still had to cancel my FET since I need to get to at least a 7 before we can proceed.
So that's where I am now. My RE has worked with me to come up with a customized protocol as sort of a "last ditch" attempt to finally get to transfer. We're basically going to throw every drug imaginable at me and start early in my cycle to see if my lining responds at all. The plan is to do this with my next cycle (approximately late March or early April). I've been told that if this doesn't work there probably isn't really anything else we can do.
That's my story. I'm excited to finally be talking with others who understand how much this whole process sucks and I look forward to getting to know everyone!
Re: Long-time Lurker...(intro)
Ive tried patches, injections, oral meds, suppositories, blood thinners, steroids, different kind of steroids, etc. and nothing has really helped.
Do you know what your protocol will be this time around? This time around I was on estrace orally for three weeks, provera to induce a period (I don't have a cycle....at all) and then am giving letrozole a shot to see if that works.
TTC: April 2013
DOR: AMH .3 - 1.31 (it varies); FSH: 5.1
Clinic NMCSD
IUI #1 July/Aug 2016
IVF #1 Sep/Oct Microdose Lupron Protocol - IVF cancelled only 1 follicle
IVF #2 Feb/Mar Antagonist protocol w/estrogen priming - 0 eggs retrieved (empty follicle syndrome)
Donor Egg Cycle as soon as we find a match
@mandasand Thank you for the suggestion. We did use the vivelle patches in both of my medicated cycles. I started with 1 patch and eventually worked my way up to 4. Unfortunately they didn't do the trick - at least not during those cycles. But we're keeping them in the protocol for my next FET so we'll see. And I'm glad they seem to work for you and make your lining nice and comfy. I think I saw on another thread that you will trigger this weekend. Hooray! Fingers crossed that you get some high quality eggos
It sounds like you and I have a lot in common. My RE has also tried just about everything and none of it seems to work. Fortunately he's very candid (but also understanding and kind) and told me that this is one of the areas of IF that they just don't know much about. It's his opinion that something has happened to damage my endometrium, most likely at the cellular level, causing receptors on the cells to no longer respond to estrogen they way they should. But there's no way to know for sure if this is the case, and if so, what caused it or why it happened. Which is super frustrating!
I've also been strongly advised that a gestational carrier is my best (and possibly only) hope. Like you, this was hard to hear. But I think I have now come to terms and accepted it from an emotional standpoint. Financially is another matter - surrogacy is expensive and it would likely be a while before we could afford to go that route. So this next FET is kind of my last try before we have to start looking at other options.
I do have my protocol for this next round. My RE is eliminating Lupron (which I was on in my previous medicated cycles) and doing no suppression at all. I am fortunate that I do have a cycle but it is usually very long - since my RE started me on Metformin my cycles have regulated at about 35 days (before that they were anywhere from 35-60+ days). The longer cycle should give my RE time to make adjustments to the protocol based on how I am responding. I'll be on Estrace vaginally and orally daily starting day 1, vivelle patches starting with 1 patch on day 1 and working my way up to 4 patches, estradiol injections starting day 1 and repeated every few days, and vaginal viagara every day. And then we're also throwing in Lovenox, neupogen, prednisone, and an antibiotic (don't recall which one). Honestly, there may even be something else I am forgetting. Oh, and Crinone if my lining actually does respond and I get to transfer. Should be fun.
If you don't mind me asking, how is your RE planning on using the Letrozole in your protocol? I've read a bit about it in FET protocols on another thread here. I plan on asking my RE about it but I've never used Letrozole so I'm not sure how it works. I thought it was similar to Clomid but maybe I'm wrong. I'm wondering if Letrozole has the same side effect of thinning your lining that Clomid has?
Anyway, thanks for your response. I'm rooting for you!
TTC: April 2013
DOR: AMH .3 - 1.31 (it varies); FSH: 5.1
Clinic NMCSD
IUI #1 July/Aug 2016
IVF #1 Sep/Oct Microdose Lupron Protocol - IVF cancelled only 1 follicle
IVF #2 Feb/Mar Antagonist protocol w/estrogen priming - 0 eggs retrieved (empty follicle syndrome)
Donor Egg Cycle as soon as we find a match
Sorry to hear about your lining issues
When I did my one IUI attempt (cancelled due to too many follicles), my ER also kept commenting how I don't get enough lining. Then, during IVF, it grew to over 10mm, I had 70 follicles and ended up with ohss, so no fresh transfer. I kept looking longingly at the u/s screen and mourning that this lush lining is going to waste, and I don't know if I'll be able to grow anything even close to it when times comes for FET.
Good luck with it!
@mandasand, what exactly is "gluing" an embryo? I don't think I've ever heard of it.
My story in signature spoiler. Children mentioned.
I don't produce FSH, so no natural menstrual cycle. DH has reduced morphology.
Summer 2014 IUI (with first husband): cancelled after almost a month of stims due to too many follicles
Time off to divorce, get back on my feet, find a new hubby and get married again 💑
March 2017 IVF#1: ~70 follicles, 13R, 10M, 7F, 3B = 2 PGS Normal (both XY) - no transfer due to ohss
Sept 2017 FET#1: BFP, Beta#1 (10dpt) - 253, Beta#2 (12dpt) - 528, DS born 05/31/2018 👨👩👦
Dec 2019 FET#2: BFN
Changed clinic, planning March 2020 IVF#2 - postponed due to the pandemic
April 2020 IVF #2: ~30 follicles, 24R, 12M, 8F, 4B = 2XY & 2XX, all normal
Sept 2020 FET#3: one XX embryo, BFP, Beta#1 (9dpt) - 161, Beta#2 (11dpt) - 519, Beta#3 (19dpt) - 7174, Due date 05/30/2021
DD born 05/23/2021 👨👩👧👦 - My family is now complete
@angrybull I'm not exactly sure how my protocol will look this time. My RE is thinking that with the letrozole it will be more of a "natural" cycle (since I don't get one at all) to recruit a follicle to help build up my lining using my own estrogen. I think letrozole works similar to clomid but isn't supposed to thin the lining as much and . My RE and I had previously spoken that if my lining doesn't get thick enough but I recruit a follicle or two, we would just change it to an IUI since I have had SOME success with those previously (TW**** I had two CPs doing IUIs) so it won't be a completely lost cycle if we don't get to transfer.
Your RE certainly is throwing the kitchen sink at you this time! I had asked my RE about Viagra vaginally and she said studies are about 50/50 but isn't opposed to adding it in. She said she'll keep me on the lovenox as well, just for peace of mind as I seem to have a slightly better lining when on it.
Last cycle my RE had me on Tamoxifen which studies have shown can help with thin lining. Unfortunately, I was either too suppressed from the previous cycle or it just didn't work on me. Might be something to talk to your RE about if this round doesn't work and you want to give it one more shot. Heres a link to the study: https://www.omicsgroup.org/journals/successful-pregnancy-in-recurrent-thin-endometrium-with-new-uses-for-an-old-drug-jfiv.1000110.pdf
My RE has basically said the same thing about not knowing much about why lining doesn't respond, especially when everything else comes back normal and from an RE standpoint, she finds these cases the most frustrating. Before we started IVF, she actually had me go for a hysteroscopy after a mock transfer to see if there was any damage to my endometrium but nothing was found. She also suspects it has something to do with the receptors not responding to estrogen.
I have come to terms with a Gestational carrier as has DH, but he also thinks we could keep trying. I've had to tell him at some point, enough is enough and we need to decide when that will be (I'm thinking after this try, but that could always change). We actually sat down and went over finances this weekend to figure out a savings plan and have started to research local attorneys and agencies just to get more information. It is so ridiculously expensive.
Have you started this cycle yet? I am REALLY hoping this is the magic combination for your lining to respond!
@FuzzyDust I'm so sorry you had OHSS - it sounds awful! And 70 follies is insane! It must have been difficult to watch that cushy lining not being used. But hopefully the fact that you were able to get all the way up to 10 means that you will be able to get what you need when it comes time for your FET. And you raise a great point. My retrieval cycle was the best lining I've had, too (but definitely not as good as yours!). I was able to make a 6 but since I was already planning to do PGS testing and an FET later we didn't really focus on lining or do anything to improve it. It makes me wonder what might happen if I were to do another retrieval cycle with the goal of actually transferring either a fresh or frozen blast.
I haven't started my crazy kitchen-sink cycle yet. I had a scratch last Monday and I'm just waiting on AF to start. Most likely I'll be getting started sometime in the next week.
I completely understand what you mean by "at some point, enough is enough." It's so hard to make that call but we put so much into this whole process (emotionally, physically, mentally) and after a while you just have to ask yourself "how much more can I justify?" For me, I figure I have this upcoming crazy cycle and then maybe I might try one more time. But maybe not.
It's great that you and your DH have already started planning/budgeting for the gestational carrier process, if you end up going that route. Just the other day my DH and I were walking our dogs and I was kind of down about everything and he made a comment like "maybe we could get Amy Poehler to be our surrogate" ("Baby Mama" was on HBO the night before). I had to laugh! But it also made me feel so much better to know that he is also thinking about what we'll do if this protocol doesn't work. I'm so very fortunate to have a DH who's been nothing but supportive during this long, drawn out saga called IF and never made me feel guilty or put any pressure on me. It sounds like you have someone equally great and supportive and that is so important.
Have you started on your new protocol with the Letrozole yet? I hope SO SO SO MUCH that this protocol is your magic bullet!
I wonder, if your lining got thicker during your retrieval cycle, maybe if you were to do another cycle, you could transfer one of your already tested embryos 5 days after that ER and then have the added benefit of hopefully having some more embryos to bank for the future. I'm not sure if there are many people who do that, but it's something that has crossed my mind.
Me: 31 DH: 31
Married: June 2012
TTC: December 2015
DX: MFI
IVF #1: March 2017- 16R, 12F, 4 blasts, 2 PGS normal (3BB & 3CB)
IVF #2: May 2017- 19R, 17F, 6 blasts, 1 PGS normal (5CC)
FET#1: July 2017- BFP!
@angrybull my last dose of Letrozole was Tuesday night and I'll go in for a lining check on Sunday! The only thing I've "changed" during this cycle is DH and I have been doing the Whole30 prior to getting this cycle starting (no dairy, gluten, sugar, soy, preservatives, etc.) and seeing a chiropractor regularly for the past few months. Technically the Whole30 will be up on Tuesday, but I'll probably continue it through my TWW (if we get that far!) so that my body doesn't have any reactions to adding back in the foods that had been eliminated. In the past I've tried acupuncture, yoga, stretches, pom juice, etc. but those were some of my worst cycles so I'm not going to stress out about doing any of that anymore. Plenty of people get pregnant without all that stuff. I did just listen to a podcast on "Fertility Massages" and there's a specific one for increasing bloodflow to the uterus for those who have had lining issues. If this cycle doesn't work and if we do ever try again, I might look into that if there are any places around me.
Hopefully AF shows for you soon so you can get this protocol started! I'm so glad you have a supportive DH as well - it makes the world of difference! That is such a funny comment! My DH has commented before how "cool" it would be to just show up in front of our friends one day with a baby and be like "surprise!" and let them try and figure out how that occurred.
I keep mentally telling myself this will be our last shot, but I have 4 frozen (untested) embryo's left, so we might try those remaining ones with me and then start completely over before moving onto a GC with a new retrieval and do testing on those. That's my RE's recommendation as well, as she is hesitant to transfer non-PGS tested to a GC, just because of the high cost of using one, she doesn't want us to waste money and maybe deal with a miscarriage. And the cost of thawing, testing, and then refreezing the 4 we currently have probably isn't worth it. DH has suggested we start the GC process, let my body take a break and let my hormones get back to "normal" and then have some basic testing again (thyroid, prolactin, etc.) just to see if anything has changed and/or improved.
@angrybull hopefully AF has started for you and you've got this cycle started! I am most likely cancelled again - went for my second monitoring appointment this morning and lining is still super thin (4.3) and the follicles haven't budged. I am following up with my regular endocrinologist to rerun my thyroid and prolactin levels just to make sure they haven't gotten all wonky with all this medication.
My fingers and toes are crossed that this is the cycle for you!
I hear you on trying everything. Like you I've tried just about every possible strategy out there (even the weird stuff). Acupuncture, yoga, gross Chinese herbs, no gluten/dairy/sugar (even though I'm already a pretty healthy eater), pomegranate juice, almonds, etc. Sometimes I'm like "If one more person tells me to try acupuncture or yoga or pom juice I'm going to lose my mind!" Like I haven't actually looked into all of these things and tried them. And the cycles where I have been the most diligent - yoga every morning, acupuncture twice a week, 12 ounces of pom juice a day, Chinese herbs morning and night, and on and on - are usually when I get my worst lining. So I've finally gotten to the point where I'm just going to do what I want. Of course I'm taking all the meds in my protocol, but I'm not freaking out about making sure I take them at exactly the same minute every day. I'm doing some yoga here and there and I'm keeping the acupuncture for now (since I like it and my RE says its the one thing that might have an impact), but none of the rest of the stuff. Its all a bunch of hocus pocus - at least for my body.
It's very cool that you and your DH were able to stick with the Whole30 for the entire month - that's some serious diligence! My DH is a professional chef (I'm very lucky) so we eat a very balanced diet with lots of veggies, but he believes strongly in the "balance" part and doesn't like to cut things out wholesale. So we take the approach that anything is okay as long as its in moderation. That being said, I decided on my own to cut out gluten and dairy at one point when I thought it might help. Adding back in the dairy didn't cause me any issues but gluten took some getting used to. Even now I eat a lot less gluten than I used to, which I guess is a good thing. Hopefully you won't have any negative reactions if you decide to add any foods back into your diet.
I agree that it probably isn't worth the cost of thawing the embryos you have to PGS test them at this point (plus all the added risks associated with the thaw, biopsy, refreeze, etc.). I go back and forth on doing another retrieval. Forgive me for not knowing all your history, but when you did your retrieval was your lining better and did you do a fresh transfer? My lining was better (not great, but still a 6) but we were planning to do a freeze all so we never focused on it. It makes me wonder if I were to do another retrieval and we focused on the lining if we might be able to get to a 7 or 8. And we could probably even transfer one of my frozen tested embryos rather than an untested fresh (or maybe one of each). Of course it would cost me a bunch more money - but not as much as going through GC. I'm keeping this idea in my back pocket for now, but if this protocol doesn't work I will be talking about it with my RE and then most likely weigh the options between this or going straight to a GC. I think you're smart to consider another retrieval and doing PGS, especially if you end up using a GC. But maybe you could also explore the option of a fresh transfer, too, if you do another retrieval and see if your lining does better with all the stims (I've read of some ladies who took stims for the exact purpose of building a lining just like you would a retrieval).
Which brings me around to finally answering your question! Yes, I started my protocol this past Saturday. Today is only day 4 and I pretty much feel the same - which I guess is to be expected. I'm not in love with the estradiol valerate shots but other than that it isn't too bad. I will go in early next week (around day 10 or 11) to see if I'm responding at all and we'll make the decision on whether to add Neupogen or cancel. I'm glad I've started but honestly I'm just trying to treat it like any other time in my life, and I'm not getting my hopes up too high. But I will keep you posted about how it's going.
Sorry for the novel! (BTW, I love your DH's idea of just showing up with a baby one day if you go the GC route! I secretly have dreams about that).
Shockingly enough, my RE called yesterday afternoon and said I'm not out quite yet. She's having me do another 5 days of letrozole at a higher dose to see if that jump starts anything. I'm usually a slow responder so she's not too concerned. She agrees with me following up with my regular endocrinologist to get my levels checked but didn't seem too concerned that possible high prolactin was the issue. If my lining gets decent but not to where my RE wants it, and I have some mature follicles, we would convert to an IUI, so I'm hopeful that this cycle we will have SOME sort of shot, rather than just cancelling altogether.
I'm right there with you on the pom juice, yoga, even beet juice! Like you, the cycles I did everything I possibly could were my worst ones. I did acupuncture for one but didn't have a great response and it just wasn't for me so I stopped. Thinking about all the "hocus pocus" stuff just tended to stress me out more. I'm more relaxed if I just try and forget about it all and take my meds as directed.
DH and I were getting SO lazy with our cooking and just feeling Blah so Whole30 it was. I actually enjoyed it - forcing myself to cook every night, look up new recipes, etc. I'm a total rule follower so having strict rules was good for me. I didn't find it too hard and still am not really craving anything. I'll probably stick to it until I figure out what exactly is going to happen with this cycle as I don't want to add anything back in (tons of sugar, gluten, dairy) and have my body react negatively. I'm also sleeping so much better and have so much more energy. I've read some research that eliminating gluten, dairy, and soy can be beneficial for those with PCOS and thought I might as well give it a shot. I kind of want to see how my body reacts once I'm off the meds if it has helped to regulate anything. That is awesome your hubby is a professional chef!
When I did my retrieval I think my lining got up to about a 6 but we ended up having to do a freeze-all since my progesterone rose too quickly and it wouldn't have been optimal to transfer. Of course my RE said that happens in about 1% of cases - yay for being special? My RE and I had discussed doing more of a "retrieval" protocol but she was hesitant because my progesterone likes to do it's own thing and there's not as much control with those types of cycles. DH and I had actually talked about doing another retrieval, trying to do a fresh transfer and then doing PGS on the rest. I know my RE said to get everything lined up for a GC can take 6-8 months or more, so I would have plenty of time to make that decision before all the paperwork is officially signed.
I'm glad you have gotten started! The estradiol shots were not my favorite either. I really hope you get good news next week!
Thanks for sharing the information about your fresh cycle. That's very interesting about your progesterone being high - I've never asked about mine. I know that back when I was doing IUIs it was low once or twice (but normal all the other times) but my doc at the time chalked the low levels up to not having a "strong ovulation" (or not ovulating in one instance when we were just monitoring). I feel like we monitored my cycles for about a year and progesterone was normal 5 or 6 times and low 2. I'm going to make sure to ask my RE to look over my history to see if he has any thoughts about my levels, if we have to start looking at other options after this cycle. And I hear ya on being "special!" My RE is extremely experienced and he told me that less than 1% of patients he sees have lining like ours that just refuses to respond to drugs - it's quite unusual. Hooray for us
I like your thoughts on what you might do in the event of another retrieval. I have similar ideas. Even though I have PCOS my retrieval cycle went really well - I felt very lucky because I know so many women with PCOS are at high risk of OHSS. It's actually the reason why we opted to do a freeze all right from the start because we thought I might have a hard time recovering. But to be honest I found stimming and the whole retrieval process to be easy - much easier than prepping for these FETs, which I know is unusual. I was on pretty low doses of stims and felt fine the whole cycle. Even the retrieval didn't bother me; I just took the day off work, never needed any medications (not even Advil), and went back to work the next day. I know every cycle can be different but I'm pretty sure I could handle another retrieval and would feel just fine for a transfer at 5 days - if we could just get my lining up to something respectable. If we do end up doing another cycle we're strongly considering doing something similar to what you described: transferring one (maybe one fresh and one of my frozen PGS embryos) and then freezing everything else and sending it off for testing. At the very least hopefully I would end up with a few more normal embryos if the transfer didn't work and we have to go the GC route. And I've heard the exact same timeline on the GC process - I was told plan for at least 6 months. So that's a good amount of time to keep trying on your own or working with your cycles at the same time, if you want to do that.
I'm keeping my fingers crossed that you get some progress and a good update soon!
My stims and retreival weren't that bad either! I had plenty of leave so took the day of and day after off and then went back work. They gave me pain meds but I never touched them.
Im so glad to know I'm not alone with this whole thin lining thing and the possibility of using a GC.
I would highly recommend Metformin and ovasitol - I've been on both for over a year. The very first consult I had with my RE he took one look at my AMH and FSH levels, heard me mention my irregular cycles, and immediately said I needed to start Metformin and ovasitol right away. He wrote me a Rx that day for the metformin. All of my other blood work is perfectly normal and I don't have insulin resistance either. But he said that didn't matter, that these two drugs work really well to help regulate cycles for women with PCOS. And he was right. Within a month I went from cycles that ranged from 35-70+ days to a 32 day cycle. In the 14 months since I've been on the Metformin my cycles have regulated and are now anywhere from 31-37 days. Still not perfect but a huge improvement.
I'm sure your RE will tell you this, but Metformin does have some side effects. It's definitely not all sunshine and rainbows for the first few months and I feel like I'd be misleading you if I didn't point them out. (Warning - TMI follows!) The two main side effects I experienced were diarrhea and loss of appetite. The diarrhea side effect is extremely common. They'll tell you this and make it seem like after a few weeks your body will adjust and the diarrhea will go away. But be forewarned - it took more than 9 months for my body to adjust, and I still have an occasional episode. And my understanding is that I'm not in the minority, it often takes people months before their system regulates. BTW, they recommend taking the Metformin at night so you are home if you have to deal with diarrhea. But I found that it usually doesn't hit until about 10-12 hours after you take the pills. I still chose to take the pills at night and just deal with the side effects in the morning - since it at least seemed that my body was reacting on a predictable schedule I didn't want to risk making any changes. I guess on the plus side I will say that we aren't talking about the kind where you're hugging a toilet or running to the loo all day. It's more the "go and you're done" type.
The loss of appetite is pretty self-explanatory. I just didn't feel like eating as much or as often. I ate maybe half of what I was eating before. This lasted for at least 3 months. And it follows that these two primary side effects often lead to weight loss - I am quite thin and I still dropped 7 pounds over the first 3-4 months. People definitely noticed (so did I). The appetite and weight both eventually leveled off. I think I have a normal appetite now. The weight has stayed off (I might have put 1 or 2 pounds back on) but the overall weight loss has stopped.
So that's my Metformin disclaimer. And I'm told my experience was pretty normal. I still am super glad I'm on it. In the grand scheme of things it's not that bad. I just think it's important to be fully aware of the side effects.
As for me, I went in for my first lining check this morning. Despite all these drugs I was only at 5. I didn't expect it to be amazing but I can't help but be disappointed. It's definitely not the worst I've had but I hoped it would be better given all the estrogen that's being pumped into my body. My RE hasn't given up on me yet, though. He's ordered Neupogen and we'll be doing a wash on Thursday morning. He's hopeful that can get me up to a point where we might be able to try a transfer later this month. I'm not getting my hopes up but I'm also trying to stay positive.
@angrybull thank you for the heads up on the Metformin! I had to get some blood work done yesterday before my RE will call in the prescription so still waiting on those results to be posted. The Ovastil should be arriving today or tomorrow so I'll start that whenever it arrives. I would be over the moon if I end up having ANY type of cycle!
Ugh, I am so sorry your lining was only at a 5. I completely understand the disappointment. Hopefully with the addition of the Neupogen and wash this week things will improve. It's a fine line between not getting your hopes up and still having a little bit of hope that this time could go differently than the all the previous times.
I had my lining check this morning and no change - even with the upped dose of Letrozole. I had such a hard time keeping it together in the exam room. I think my body just needs a break and I need to "reset" before possibly attempting again. I'm going to get my prolactin and thyroid levels checked next week, I'm thinking those levels might be out of wack which are inhibiting the Letrozole. We have an initial consult with a GC attorney/agency next Wednesday just to ask some general questions and start getting a feel for the different options - part of me is excited to be moving forward in some direction, but also grieving that using a GC is the way forward.
Fingers crossed for you tomorrow!
@mariabend25 I'm so sorry your parents don't seem to understand. While my mom sometimes doesn't "get" it, I couldn't imagine her being in denial and not being a support. That makes IF just that much harder.
thanks for the support! My parents are supportive but definitely want grandkids so it is a conflict of their interests I guess.
Btw, what was your AMH level? Mine was 8.32. And testosterone 51.9. Those were the two abnormalities in bloodwork for me.
I hear you on trying to balance hope with reasonable expectations. Feels like that is my whole life right now! Honestly, I'm doing a pretty good job of not focusing on "what will happen, what should I do?" for today but I know Monday could be completely different. Most of the time I manage to keep it together but I could easily see myself breaking down if I go in Monday and I'm still at a 5 (or my lining has decreased, which happens pretty often).
Ugh...I'm so sorry that your lining has not responded even on the higher dose of Letrozole. It's so heartbreaking and frustrating. I often wonder if I just did nothing for 6 months if it would make a difference.
I do think it is very exciting that you have an appointment scheduled with an attorney/agency next week. Sometimes I can't believe we're even having to consider such an option - I'm sure you've felt the same. But hopefully meeting with the attorney will give you some of that same feeling that comes after meeting with an RE, where you feel like you're finally putting a plan in place. I'm curious to know whether the attorney and agency are one in the same, somehow affiliated, or completely separate (like you would have to meet with two different people)?
@angrybull fingers crossed that you will have any easy decision to make on Monday - that either your lining thickened WAY up (or at least to a 6!!) or is too thin to even consider a transfer.
It is mind-blowing that we have to consider using a carrier, I never thought that IVF wouldn't work. I think the person we are meeting with next week is both the attorney for the intended parents and acts as the agency (matching; contracts; etc.) and then coordinates to find an attorney for the carrier. From the little research I've done, if you go strictly with an attorney and not an agency, usually you as the intended parents have to find the carrier and do a lot more of the leg work. While it is most likely cheaper (no agency fee, which can range from $10,000-$22,000) I don't know if I would go that route doing this for the first time. My DH has reached out to several different contacts in the area so I'm sure we will meet with a few to get a feel of the differences and see who we "click" with.
We also decided no treatment until the beginning of July so that should be a nice little break, both physically and mentally. My RE (or the Dr on call since she is out) suggested another round of Letrozole at 10mg for 5 days but I just wasn't feeling it in my gut and didn't want to continue until all my other levels are checked out.
DH went to pick up the Metformin prescription the other night and had a funny experience. First they told him insurance wasn't going to cover it and the cost would be about $80 for 90 pills, which he said was no big deal. Then the pharmacist went to pack it up and was printing out the label, he said her eyes got really big and she called over 2 other people. He could hear them whispering "oh my gosh, it's $4,000! what do we do? Do you think he still wants it?" They ended up having to re-enter it into the system about 4 times and in the end, it ended up costing $8.00. $4000 was more than my IVF meds! I'm glad he was the one picking it up and not me, I would have had a heart attack I think hearing that!
I'm with you. I just never thought that IVF wouldn't work. I was told over and over again that I was the perfect candidate. I could literally see RE's eyes light up when I was meeting with them (probably thinking about how I wouldn't hurt their stats). Of course I knew it might not work on the first try or transfer. But never did I imagine that it wouldn't work at all, or that I'd never even get to transfer. Suppose I should have known it couldn't be so easy when things were going so well during my retrieval cycle. But I try not to wallow in it much now. It's better for me mentally to be angry rather than sad if I am having a bad moment or day. I'm already mentally moving on to the GC route. I try to picture myself having a baby shower I can drink at or running a marathon while my baby is being carried by a GC. Little things that don't make up for it all but make me laugh a bit.
That's interesting about the attorney acting for the intended parents and being the agency (and that is exactly what I was asking so thanks for picking up on my less-than-clear question). It makes me wonder how the attorney finds the GCs. I've done some research too (not nearly enough yet but I will) and everything you mention is consistent with what I've read so far. I just hadn't heard of an attorney actually acting as the agency; but I have heard of them working very closely with agencies, etc. And I totally hear you on the need for someone who knows what they're doing to find the GC. I am not about to take that on on my own even if it would save a bunch of money. Might be okay to just go to an attorney if you are using someone you know as your GC but I'm not in that situation.
Congrats on having a treatment break! I'm secretly jealous but I might be right there with you come next week. It sounds to me like you made a good decision not to do another round of Letrozole if you weren't feeling it.
That story about the Metformin is crazy! I'm surprised the pharmacist didn't recognize something was wrong right off the bat, even when they said it was going to be $80. Metformin is a pretty common (and cheap) drug. It shouldn't even be coded as a fertility drug. It's like the only thing that my insurance has covered (I pay $10/month). I'm so glad they got it all figured out. Good luck as you start taking it - FX that is helps you get a cycle in the next month or two!
Wait....you run marathons too?!? I've taken a serious step back from running during this whole IF journey but am itching to start training for something again. My DH is running Marine Corps (for the 5th time!) AND NYC this year back to back weekends.
My RE also said I "should" be the perfect candidate for IVF and was so shocked when it didn't work. I'm not exactly sure how the attorney we are meeting with next week is set up, but I know she (or her company?) handle the matching and everything - I have briefly looked at her website but will do so more this weekend I'm sure.
I agree, I feel I have been numb to this whole process but I think it's better for me to be somewhat emotionally detached.
I wonder if they initially thought the copay was going to be $80 since it's the extended release? I'm not sure but I'm glad it's only $8! The Letrozole didn't even have a copay which I thought that would! I think they knew something was wrong when it came up at $4000 which is why they started freaking out. I can just imagine what was going through their minds!
So I haven't actually run a marathon, but I'm a big runner and run several half-marathons a year. I've always wanted to run a marathon but decided to put it on hold when we started trying - 3.5 years ago! Never imagined I would be pressing pause for so long! But then a few weeks ago DH said he wanted to do something "big" later this year since he is turning 40 and that he was thinking of running a marathon. I got so jealous! And I was super surprised because my DH is a phenomenal athlete but he's never liked running anything more than a 10k. He always complained when I'd make him do the halfs with me and he thought I was nuts for wanting to do a marathon. But now here he is, planning to run a marathon without me. I don't think so!
Your DH is a rockstar! Marathons on back-to-back weekends is seriously impressive. I completely understand your "itch" to get back into running. It's been so hard for me to cut back on running and my boot camp work outs. Especially because exercise is my main stress release mechanism. Maybe you'll be able get back into it and run one a race with your DH soon!
You two should definitely run a full! It's hard work and a LOT of time training but such an amazing experience.
My RE was wonderful, as usual, and said the next move was entirely up to me. He'd do a transfer if I wanted or we could continue monitoring for another few days or just scrap the cycle. My DH and I talked about it last night and decided to call this cycle a bust. I'm super disappointed. I think yesterday it finally really hit home that I'll probably never be pregnant myself. At least I get to stop all these hormones.
We'll meet with my RE in the next week or two and talk about what our options might be. But it looks like we're probably looking at gestational surrogacy. It stinks and it's completely unfair. But I will not give up - I know we're going to have our baby some way, some how.
Good luck at your consult with the attorney tomorrow - it's great that you're moving a step closer toward the end goal! Hopefully I'll be right there with you in a few weeks.
Oh no! I'm so sorry that the Neupogen didn't do anything. I completely understand about not being able to keep it together. Even though you've prepared yourself for the bad news, part of you was still hoping that *somehow* this might have worked. It's just devastating and hopefully you are able to take it easy, go for a run, and have your hubby take care of you for a few days.
It's still so hard to think about not being the one to carry your baby and I'm not sure my DH totally gets that. It is SUCH a huge loss that we have to come to terms with and grieve not being able to experience. I just have to keep reminding myself of the end goal - bringing home a baby.
Like you said, now you can stop the hormones, give your body and mind a break, and hopefully enjoy the summer (and train for a marathon?!) I still have moments of panic at night thinking I forgot to take a medication.
Part of me is really looking forward to the consult tomorrow and part of me is still in denial that it is actually happening. Thinking and talking about using a GC has seemed like such an abstract thing, but tomorrow's meeting makes it a little bit more real and that makes me a little sad. I'm hoping I can keep it together during the meeting and will pass along any information that might be helpful!
@angrybull, how are you hanging in there?
I'm finally on the full dose of metformin as my RE wanted me to gradually increase to let my body adjust and thank you for the warnings! Since being on the full dose, even for just a few days, I have noticed an increase in GI issues and my appetite is basically zero. I'm still forcing myself to eat as normally as possible but I have found myself eating much smaller amounts throughout the day to get the same amount of calories. That coupled with still eating fairly healthy since stopping the Whole30 and starting running again has made me drop quite a few pounds within the past few weeks. My RE was a little concerned about possible weight loss since I'm also on the thin side to begin with so I've been conscious about slowly increasing my calories as possible and not overdoing it on the exercise. Thankfully the GI issues haven't been terrible yet, and it could be because I've added dairy and some gluten back into my diet that's causing me to have some issues as well - who knows. It's been manageable so far.
Are you on the regular metformin or the extended release? My RE put me on the extended release so I'm hoping that has helped to minimize any extreme symptoms.
DH and I have a phone "meeting" with another couple next Tuesday who used the attorney we met with a few weeks ago so it will be nice to talk to someone who has been through the process, since I don't know anyone who has. We have also reached out to some other local agencies and are waiting on them to send us some general information.
I'm doing a little better - thanks for asking. It was pretty rough for a week or so after we decided to cancel my last cycle. Took a bit of a break from the bump but I'm getting back on the boards more as I start to feel better. I'm trying not to focus on IF and our next steps too much (I'm not really succeeding, though).
So glad to hear that you are getting somewhat adjusted to the metformin. I remember the ramp up period. I think my RE ramped me up to full dose over about 3 weeks (I'm on the extended release also). Each time I went up in dose I would just cross my fingers! But it all ended up fine. And it will for you, too! The loss of appetite part is rough. My husband just didn't get it and was constantly trying to make me eat! It does go away eventually (although it took me a few months before I really wanted to eat again). But you're doing the right thing by continuing to eat the small meals. I've been thinking about you and keeping my fingers crossed that it helps you out a lot and you're able to get a cycle started.
How wonderful that you will be able to speak with another couple who has used the attorney you met with! I never thought about asking if that is a possibility but I will now. The whole surrogacy thing definitely feels like fumbling in the dark to me; there's so little info out there and it's hard to find people who have been through it (I don't know anyone personally either). So it's great that you can at least talk to someone else who's done this. And I hope the other agencies get back to you soon - although the one you met with already sounded like they had their act together.
AFM, I had my follow-up consult with my RE last week. To my surprise he hasn't completely given up on me trying again (either via FET or another retrieval cycle) but we spent a lot of time talking about surrogacy, which he feels (and I know) is probably my best shot at having a baby. I should probably post an update on the surrogacy thread we had going about my meeting with him. But what surprised me the most was that my RE explained to me that he takes a really active role in the whole surrogacy process - he interviews the potential candidates (not just does the medical tests) and then talks with the IPs about what he thinks, tells them if he sees any red flags, etc. He's been doing this a long time and actually does a fair number of GC cases. We talked for almost 2 hours and I asked just about every question under the sun. He answered them all - worst situations he's dealt with so far, any instances where it didn't work out, what to look for in a potential GC, etc. It just made me feel so much better that if we end up going this route he would remain so involved and would be really frank with us about his thoughts, because I've come to trust his judgment quite a bit (and he clearly has way more experience in evaluating whether someone would be a good GC). We also got a list of agencies from them (all ones that they've worked with before and suggest). We're working on researching and reaching out to the agencies now. There were 5 total - 3 were local and 2 were more nationally focused.
Our plan right now is no treatments until at least June, probably July. In the meantime DH and I are going to meet with the agencies. My RE would like to try 1 or 2 Letrozole cycles when I'm ready (I'm thinking July) - basically I'd just take Letrozole like you would for an IUI and then if my lining gets thick enough and I get a follicle we would do an trigger shot, progesterone, and transfer one of my frozen embryos. It's a long shot but my body is pretty messed up right now from all the meds I've taken the last few months. I think resting for the next few months and then doing the Letrozole cycles is a good plan to at least try to get me back to "normal." Then we will have to make the call on whether we want to do another IVF retrieval cycle or go the GC route. There are pluses and minuses to both options and I feel like every day I change my mind about which one would be best. The decisions seriously never end with IF!
I'm glad you're doing better! It's so hard to take a step back when we have been "go go go" with treatments for so long. It feels so strange not to be doing anything!
That sounds like an awesome meeting with your RE! Hopefully you are able to find an agency that you "click" with and feel comfortable using. I'll keep you updated on how my talk with the previous IP's go on Tuesday and let you know if they have any specific advice/words of wisdom for going through this process.
Your time line sounds pretty similar to mine. Taking a break to let the past few cycles of meds get out of my system and give it another shot probably end of July. My RE wants to try a normal estrogen protocol to see how I respond now that I'm on metformin. I am also going to ask her about trying a Letrozole cycle again.
I'm right there with you on changing my mind about which would be best. Some days I'm totally on board with moving forward with a GC and then others I think "it could work, maybe just one (or two) more shots". It's such a strange process to be in. DH keeps reminding me that the GC process is long, so even if we move forward with an agency initially, we still have time to try again with my body, whether that's a FET or a retrieval. Worst (best?) case scenario is that we pay the initial fees, are in the process of waiting for a match, get pregnant ourselves and possibly lose the initial fees.
It sounds like you've made a lot more progress on researching your agencies than we have, which is impressive. Right now we're just in the initial investigation stage. Of the list my RE gave me, 3 of the agencies were local/within my state. One of them I've kind of ruled out. Perhaps I'm being too picky, but I was just a little put off by the website - some typos and no clear info on the agency's fee. Plus my RE said one or two things about the attorney there that made me think our personalities might not work together. So we're focusing on the other two agencies as our primary candidates for now (and then will explore the 2 national ones and the third local one if necessary). One stands out to me more than the other as a good fit but I guess you don't really know until you've met with them. We'll probably do initial calls in the next two weeks. Then in-person meetings. And then we'll see.
While it's strange not to be taking meds and rushing to appointments, I am enjoying the break (just wish that I didn't think about this whole IF/GC process all the time - my body has no problem taking a break but my mind is another story!). Hope you are too!
I don't think that's being too picky! We immediately nixed a few because of their websites (My DH is also in IT and builds websites on the side so he's extra picky about that sort of stuff!) I'm enjoying the break but it is so hard to shut the mind off, especially when starting all of the research.
We have a trip planned to visit my sister, her hubby, and nephew in July and this will be the first trip there that I won't be in the middle of a cycle! I'm excited to not be taking meds or worrying about them asking why I'm not drinking.