Week of Aug 5

[moonriver]

I have a monitoring appointment this afternoon to see if the letrozole worked. I had an appointment on Friday and things weren’t really progressing so I don’t think this cycle is going to work out. Next plan would be injectables for ovulation and IUI.

How’s everyone else doing this week?

[megstoo]

I'm STILL a sitting duck for lack of a better phrase. We've tried to force a cycle 3 times now and I'm getting mad (I have severed pcos). First was provera for 5 days - after 16 days never showed, did prometrium for 10 days and spotted everyday, had 2 days of bleed but lining to thick for baseline. Back to provera for 10 days, last pill was 7 days ago and STILL nothing.

I'm also already in a bad place and for some reason keep telling myself this final transfers not going to stick so what's the point of even trying? We're going to transfer the final 2 embryo's but the doubt of it sticking is already there. Not a good way to start out a final FET.

At least I have another acupuncture session on Thursday so there's that!!!

[starryfish]

I’m on vacation so it’s a nice break. Hopefully do a transfer next month

megstoo I’m sorry that’s horrible

[ilovecandy]

Mostly over my freakout. Found out my drugs are a shit ton cheaper through a mail order service my insurance uses so using that for everything but gonal and menopur (those I am getting from an overseas pharmacy).

So today is a good day since I found out I can save lots of money.

[VacayVaca]

I'm gearing up for my first frozen embryo transfer next month. I've mostly cleared my schedule for September and October, but I have one trip that I cannot reschedule. Using this month's cycle and projecting forward, it looks like that trip will fall over CD 1. My protocol for next month dictates that I need to have a baseline ultrasound on CD 1. How should I ask to accommodate this? Go on birth control for a month to force CD 1? Ask to have the baseline ultrasound a few days early? Stress and obsess for the next month to try to delay ovulation?

I also started acupuncture as a method of occupying my focus during this interim. I'm optimistic about it and have enjoyed the sessions and the practitioner so far. And as an added bonus, it helped me ovulate closer to the perfect cycle goal of CD 14, so maybe it will help my body cooperate for the next few weeks.

[VacayVaca]

Aug 6, 2019 10:02:21 GMT -5 megstoo said:

I'm also already in a bad place and for some reason keep telling myself this final transfers not going to stick so what's the point of even trying? We're going to transfer the final 2 embryo's but the doubt of it sticking is already there. Not a good way to start out a final FET.

The doubt and the pessimism are so hard to keep from overtaking all other thoughts.  I don't really know any way to overcome it, and I've tried so many options.  Right now my method is to try to keep from thinking too far backward or forward--doing either of those makes the grief/fear unbearable.  

I'm sorry you're still stuck in a holding pattern.  It truly sounds maddening.  

[moonriver]

Oh, megstoo this process has been grueling for you. I’m so sorry.

[moonriver]

My appointment went better than I expected. One follicle measuring about 18. I’ll trigger tomorrow night and IUI is set for Friday.

[ilovecandy]

Aug 6, 2019 10:02:21 GMT -5 megstoo said:

I'm STILL a sitting duck for lack of a better phrase. We've tried to force a cycle 3 times now and I'm getting mad (I have severed pcos). First was provera for 5 days - after 16 days never showed, did prometrium for 10 days and spotted everyday, had 2 days of bleed but lining to thick for baseline. Back to provera for 10 days, last pill was 7 days ago and STILL nothing.

I'm also already in a bad place and for some reason keep telling myself this final transfers not going to stick so what's the point of even trying? We're going to transfer the final 2 embryo's but the doubt of it sticking is already there. Not a good way to start out a final FET.

At least I have another acupuncture session on Thursday so there's that!!!

So many hugs

[joenali]

Nothing going on for me this week. My follow up appointment is August 14th.

I really want to take birth control continuously. My period seriously shuts down my life for 2-5 days and I can’t do it anymore. I went through at least 36 ultra tampons last month. I can’t take it anymore. I looked at my calendar and I’m supposed to get it the second week of school. I can’t miss school during the second week and I can’t come to school while I’m in horrendous pain. I hope I can at least take it continuously for a few months so I can get a break and we can figure some stuff out. I also don’t need another iron infusion in my future.

[seeyalater52]

Our new donor sperm arrived at my clinic today. I’m glad we sorted that part out even though we aren’t doing the IVF cycle for a few months.

I’m taking about a billion supplements this time. Mostly research based but even so I’m convinced it is nonsense. It’s for peace of mind more than anything else.

I’m still drowning in sadness. Maybe I’ll never recover from this. We are planning a memorial for our babies in September (just me and my wife, with the officiant who did our wedding) and it is meaningful and nice to channel the grief into something concrete.

[achi]

TW - loss mentioned.

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I'm going through a 3rd fucking loss. The femara cycle worked and things were going ok and then my HCG dropped like a stone. I'm in limbo waiting for my body to start things. I'm so angry. I don't understand why this keeps happening to us. My OB called me at home last night to confirm what to expect, and mentioned that we'll discuss more testing at my follow up appointment. What should I be asking for? The testing we've already had is:

Me:
Saline sono (everything was normal)
Ovarian specific ultrasound for PCOS (ovaries showed non-cystic but was diagnosed with a hormonal variant of PCOS and am on metformin)
Bloodwork for CBC, B12, D, Ferritin, FSH, LH, TSH, DHEA-S, AMH, Prolactin, Cortisol, Testosterone, Free Testosterone, Insulin, A1C, Progesterone (Day 21 of two cycles that were losses)

H had an SA back in 2014 and repeated it again in June of this year. I can't remember the exact results but it was really good.

I know of karyotyping but admittedly don't know much about it. Is there anything else I need to ask for? I feel like at this point we need to look at genetic factors between H and I that may be affecting things. I feel like I'm done riding this roller coaster but I want to understand why I keep having losses. I'm not going to completely close the door while it's so fresh but I'm just feeling really lost. I was so sure we had everything in place this time.

[vmars]

achi, - I would def ask for karyotyping of both you and your husband. It will look at each of your chromosomes and see if you are a translocation or inversion carrier. My doctor also did genetic testing to see if I was a carrier for a large amount of genetic disorders. If both you and your husband are carriers for the same condition you have a 25% chance to pass it along. If just one of you is a carrier you have a less than 1% chance to pass it along.

[seeyalater52]

achi , oh my god I'm so incredibly sorry. For me my 3rd loss was the most shocking. I just... didn't expect it to happen.

In terms of next steps, I second vmars' suggestion about both karyotyping and genetic carrier testing. I would also suggest a hysteroscopy to get better uterine imaging, and a biopsy to test for endometritis (uterine infection.)

Have you had the full recurrent loss panel? You should have been offered one after your second loss, in my opinion. Some of the testing you've done is included, but some is not, particularly the clotting disorders. It also includes a more thorough thyroid panel.

Even if your A1C and insulin were in normal range it could be worth doing fasting insulin and fasting glucose or the 3 hour glucose test.

[achi]

Aug 8, 2019 11:32:59 GMT -5 seeyalater52 said:

achi , oh my god I'm so incredibly sorry. For me my 3rd loss was the most shocking. I just... didn't expect it to happen.

In terms of next steps, I second vmars' suggestion about both karyotyping and genetic carrier testing. I would also suggest a hysteroscopy to get better uterine imaging, and a biopsy to test for endometritis (uterine infection.)

Have you had the full recurrent loss panel? You should have been offered one after your second loss, in my opinion. Some of the testing you've done is included, but some is not, particularly the clotting disorders. It also includes a more thorough thyroid panel.

Even if your A1C and insulin were in normal range it could be worth doing fasting insulin and fasting glucose or the 3 hour glucose test.

I was pretty terrified the whole time, but both previous losses started with spotting so I figured as long as I didn't have spotting everything was ok. My tests stopped getting darker for a day or two before my most recent beta where we found out the HCG dropped, but they had already reached the point where the test line was as dark as the control so I figured that was normal and there's only so much dye in those things.

I have not had the full RLP yet. I will ask about it when I go for my follow up, thank you. 

[moonriver]

I’m so sorry, achi Others have given good suggestions. I would also recommend seeing a RE at this point, I think I remember you were thinking about it?

[achi]

Aug 8, 2019 14:38:39 GMT -5 moonriver said:

I’m so sorry, achi Others have given good suggestions. I would also recommend seeing a RE at this point, I think I remember you were thinking about it?

Thank you. I am still thinking about it. We only have 2 clinics in our area and I personally have two friends who have used the most popular, one was happy, the other had a really terrible experience. The other clinic in our area is new and doesn't have a lot of feedback yet. In my province I meet the qualifications for one government health care funded IVF cycle with one at a time embryo transfers, but meds and some other clinic admin fees are not covered and I'm not sure I want to throw thousands into something that's not guaranteed. Here it's about $5k for the meds plus whatever genetic testing would cost (which we'd most likely need given the amount of losses at this point).

At this point I would say I'm 80% done. I don't think I can take much more - mentally, physically, etc. Mostly, I just want to know why this is happening. I am not the type of person who does well with "we don't know why it's happening, so we're just going to label it unexplained." I know that is something that happens often in the IF world, but I'm a nosy person on the best of days so there's that...

Edit to add: the funded IVF has a waitlist and I am not prepared to sit on the list for a year or more. 

[joenali]

achi I’m so sorry to hear your news. I hope you get some kind of answer soon.


So I am canceling our follow up appointment in favor of a quick getaway next week. The month of July was pretty shitty with our failed cycle and We were supposed to road trip at the end of July to Montana with our neighbors but she fell and broke her wrist and hip and had to have surgery. I want to end our summer on a positive note so we are getting out of town to a tiny house on a lake. I’ll be able to swim and kayak and just relax. At this point I’m ok with putting off our follow up to take care of us.

[pinkpeony08]

I'm so very sorry achi. I hope you can get some answers soon.

Sending you good wishes to you seeyalater52, megstoo, and joenali.

I finally got all the results back from the reproductive immunologist. I came back positive for a gene (PAI-1 4g/4g homozygous) that increases risk of clotting, as well as natural killer cell numbers and activity and inflammation. She explained that I'm at increased risk of clotting and then you add in the inflammation and I'm at a lot higher risk of clot. She started me on low dose metformin, increased my fish oil and vitamin D, continuing vitamin E and baby aspirin and has me rechecking labs in 3 weeks and then coming back in 4 weeks to discuss more details of a plan. She laid out how things would likely go with pregnancy- would be adding prednisone, lovenox and potentially IVIG the cycle I was trying to conceive plus during pregnancy all with close monitoring and adjustments as needed. They will be working on trying to get IVIG insurance coverage in the next few weeks.

I'm still trying to wrap my head around finally having answers. It's been so long since anyone gave me any sort of explanation, that I almost feel like I don't know what to think. We are leaning toward trying again, though I admit I'm pretty terrified. She said the likelihood of success is 70% with their protocol, up from a pretty low number given my history (she said at 5 losses odds are 11%). I'm going in to see my OB for my annual on Monday and planning to discuss further with him. My husband say he is "all in if I am."

We have a lot of family visiting this weekend, which should be fun. It's the first time we've had everyone here in our new house, which is a lot bigger than our old house. I'm looking forward to seeing people and not feeling super cramped with them here. But trying to do the last minute things to get the house ready.

I hope everyone can have a nice, relaxing weekend!

[VacayVaca]

achi I'm so sorry to hear of your third loss. It all feels so insurmountable sometimes and makes you wonder how it can ever work out. I'm just so sorry you're going through it again and I can understand feeling angry and needing better answers.

seeyalater52 I hope the memorial brings some relief to the sadness. It's a beautiful way to honor your loses.