Uterine-factor infertility?

sarcasticowl · August 2017

Hi all.

I posted last week asking if anyone had issues with a thin lining and FET cancelation and I didn't get any responses, which is fine. So I guess I'll reach out and ask if there are any ladies out there with uterine-factor infertility (as opposed to tubal, ovarian reserve, male-factor, etc.). I understand it's relatively rare in the 'infertility world' for the uterus to be the reason one is unable to conceive or carry, which is why I'm hoping to find people in the same boat as me so we can compare notes, treatment options, struggles.

Thanks!

JamieH2000 · August 2017

Sorry you did not get many responses.. I think the situation is pretty rare. There was a thread a bit ago about surragacy since two ladies were pursuing that path since they could not get a lining thick enough, so maybe you can reach out to them since I know they did try alottt of options. Best wishes!

sarcasticowl · August 2017

Thanks, @JamieH2000

dragonette505 · August 2017

@sarcasticowl I feel like I saw a thread where someone talked about cancellation due to thin lining... hmmmm
I have lately had a thin lining on my past few cycles, but I was able to transfer at 7.5. I did end up (TW) with a mc, but not due to the lining. I was able to implant with that lining. I think it is not just about the thickness but it has to also be trilaminar. Do you remember if you ever got to that level?

mtpbadger · August 2017

Hello! I have a history of thin lining and have been taking a break from all things infertility over the summer so haven't been to active on here. I've been able to get the trilaminar lining but max out around a 5.5 both with IUIs and FETs. My RE has moved forward with some transfers but they have ended in BFN or CPs. I've also had several cancelled. My RE has thrown everything and the kitchen sink at my lining but nothing has seemed to work (patches, injections, scratches, etc) She also tried what's considered a "trial" with a medication, tamoxifen, which has had some success, but I think my body just needed a break and didn't respond at all. Unfortunately my RE has said some women just have thinner linings and has recommended starting to look into a gestational carrier. That being said, she hasn't given up complety yet and started me on a supplement, metformin, and thyroid med to see if that helps. I did get my first cycle naturally, without being induced, since going off BC three years ago so she's hopeful

Ive been told that having a thin lining is the most frustrating thing just because REs don't understand it fully and there's not a ton they can do to solve the issue.

Im on my phone right now so don't know if you have a signature with your post but hopefully your RE can try different versions of estrogen to see if your body reacts better (I didn't react at all to oral or injections but did better with estrogen vaginally)

sarcasticowl · August 2017

@dragonette505 You know, I did ask about the trilaminar lining and the RE pointed out where the layers were starting to look more defined, but that was the time he decided to just start over. The last thing they mentioned was doing a completely natural cycle just to see how my body does on its own. I guess some women react poorly to estrogen not of their own making. Like @mtpbadger said, it is massively frustrating because there's only so much they can do and we are definitely not in a financial position to look into surrogacy unless someone we know is willing to do it for free!

dragonette505 · August 2017

@mtpbadger @sarcastic owl (tw) I am just coming off 2 back to back miscarriages (almost 2 cycles post my last mc) and I went in last week for my mornitoring ahead of a new cycle...
my lining was almost at 11
Basically I think that's so cray since ive never seen it like that, but I'm guessing all the time of just leaving my body alone let it grow or something.... I haven't done much different....just added some extra coQ10, so I'm sure that's not it.
The thinkest my lining has been up to now is 7.5

sarcasticowl · August 2017

@dragonette505 That is amazing, congratulations! I'm only sorry that it came at the cost of losing two pregnancies. Fingers crossed that your lining is that amazing for your next cycle. It sounds like the downtime was what you really needed. I am trying to keep hope alive that the reason my lining never thickened was because they started me off on estrace and my body hated it. Let me know how things go with you!

dragonette505 · August 2017

sarcasticowl said:

@dragonette505 That is amazing, congratulations! I'm only sorry that it came at the cost of losing two pregnancies. Fingers crossed that your lining is that amazing for your next cycle. It sounds like the downtime was what you really needed. I am trying to keep hope alive that the reason my lining never thickened was because they started me off on estrace and my body hated it. Let me know how things go with you!

My bet is that when I go through this next medicated cycle that my lining will be all jacked up again. But my plan is not to do any fresh transfers anyway. But to be honest, for 2 years my lining never got better than that one time it got to 7.5 (and that was during a "natural" FET) but during my cycles I mostly heard 5's and 6's.... I NEVER thought I could get a better lining than 7.5.

My hope is that it can get back to this..i just don't know how

sarcasticowl · August 2017

@dragonette505 You may want to ask about doing a natural FET cycle since, left completely alone, your body seems to know what to do. Like I said earlier, some women have terrible reactions to the estrogen and either stagnate with growth or get too much cervical mucus which causes fluid in the uterus (like me - but in fairness, there was a pocket of scar tissue that was holding onto it). Or if your RE wants to do medicated, look into letrozole, which is becoming the gold standard of frozen transfer estrogen priming. It's not an estrogen, but it tricks your body into producing more of your own.

It's so hard to know how it's going to go the next time, so I understand. Before my laparoscopy in April, before I even started the egg retrieval process in March, I had a lining of 15. Which is way TOO thick but I chock it up to having fibroids and scar tissue. Even at the height of egg stimulation meds, when I had 16 counted follicles, my lining got to 8.95 which is awesome (yet still not a 9 or 10), but again that was before my surgery.

I scour the internet almost all day long looking for some indication that I have a shot, and not having this happen again, and I come up empty handed over and over. Everyone's bodies react so differently and everyone has their own extending circumstances and health histories that looking at someone else's experiences to give you hope for your own is probably a fool's errand, but I still keep trying.

dragonette505 · August 2017

@sarcastic owl... yeah my FET was called "natural" but after O I took both estrogen and progesterone, so I wouldn't exactly call that natural. And to be fair, I'm sure they thought I needed something since I had a relatively thin lining all along.
I honestly figured since even with a thin lining I was getting trilaminar I could probably implant. I think that's one aspect.
Do you know if they think your lining is thin due to damage (like from past surgeries) or due to blood flow? I know lots of articles talk about vaginal Viagra and stuff like that for people that are having just blood flow issues

sarcasticowl · August 2017

@dragonette505 They've not mentioned a possible reason for the lining misbehaving. I think it may be too early in the process for them to start trying to understand it, but that doesn't mean I'm not sitting over here having anxiety attacks over the fear that the surgeries ruined my endometrium. It's SO HARD getting questions answered at my RE's office. They're lovely people but there's no way to really get a hold of a doctor if you have questions, and the nurses are less than helpful (in fact, actively ignoring messages in the patient portal). So I have to leave all my questions until I have an appointment and then I am so worked up and anxious that I forget half of them...

I've heard about Viagra as a possible solution, as well as a Neupogen wash (whatever that is). There are about a half dozen possible fixes for different causes of thin lining that sometimes work for women and sometimes don't. It's a trial-and-error thing, which as you know is always fun. Who doesn't love when their body is a test dummy for six or seven different meds?

dragonette505 · August 2017

@sarcasticowl Well, I think for sure it would make sense for them to at least rule out that its a blood flow issue.... I think there is some scan or something they can do to check your blood flow to the lining (cant remember how it works). I just figured for me that a thin lining was my new normal maybe due to past d&c's and didn't even ask my doc for something to boost the lining. I did do acupuncture which is supposed to help with the lining by increasing the blood flow to the uterus.

sarcasticowl · August 2017

That will probably be my next step if this month goes to hell. I'm reading good things about L-arginine but the studies have women taking upwards of 6 grams per day, which is SO much. I'm clearly going to ask about it before taking it, but it's giving me hope.

dragonette505 · August 2017

sarcasticowl said:

That will probably be my next step if this month goes to hell. I'm reading good things about L-arginine but the studies have women taking upwards of 6 grams per day, which is SO much. I'm clearly going to ask about it before taking it, but it's giving me hope.

Yeah, I got some L- Arginine but never used it yet

I have so many other pills I didn't add it

Katemdeans · August 2017

Hey there, so I've also had a lot of uterine issues regarding my fertility. TW... they were started 4 years ago with some scary complications from the c-section from my son - TW - I'm lucky that I didn't have to have the hysterectomy, as that was next on the list if I didn't stop bleeding (like a faucet) after having my uterine arteries embolized. Since then I've been diagnosed with Ashermans - lots of scarring in the uterus and have had a couple surgical hysterscopies to remove scarring.

In terms of my IVF - I've had a fresh and three frozen transfers. One of my frozen cycles was cancelled due to thin lining, and I tried a natural one that was cancelled too, but the point of my post !!! Is that we've had good results (lining-wise) the last two transfers using stimulating hormones (menopur) to grow my lining. It's a lot less than what I took for my egg retrieval, but enough so that I'm using my own hormones (as my dr says, not really sure I understand that completely) to grown my own lining. I think I got to the very low 8s this last time. It almost worked, but it must have been a bad embryo bc it never grew past 5-6 weeks. And bc I have such a risk for scarring, I couldn't have a d&c and just had to wait a couple months before everything passed on its own. I mention that just bc it just fucking sucks, like seriously, have we not gone through enough here already?!?

Anyway, I'm getting geared up to give it another go after we go on vacation in a couple weeks. I feel like after four transfers (and a couple cancelled cycles) we've finally figured out the right protocol that works. And we're lucky that we still have some more embryos on ice waiting for us. I've never actually posted on this board before but I've been a semi-professional stalker for close to three years, so I guess it's time, and your thread subject just spoke to me

good luck with your uterus!

dragonette505 · August 2017

@Katemdeans I never heard that about menopur! Kewl! Another weapon in the arsenal!

sarcasticowl · August 2017

@Katemdeans YES what @dragonette505 said! An 8 would be a dream for me at this point and I was on a menopur protocol IVF before so I know I respond well to it. Thank you so much for coming out of stalker mode and posting your experience. I'm so sorry for your loss and for having to wait so long for it to pass on its own. That must be an absolute nightmare but in the long run I'm sure it was the right call for your poor uterus. Please keep me posted with how things go! There seem to be so few of us with this issue that hopefully we can get our own little wonky uterus squad going

AngryBull · September 2017

@sarcasticowl I have thin lining/uterine factor infertility. I'm probably one of the "two ladies" that @JamieH2000 mentioned above talking about thin lining (my guess is that @mtpbadger is the other). I've been on a summer Bump break while we decided what our next steps would be but if you were to search the infertility board for my name I'm sure you could find my previous posts on the topic (I haven't posted a ton, so there shouldn't be much to sort through).

But I'm happy to try and answer any questions you may have. I've had at least 7 FETs cancelled - I've honestly stopped counting. And I've tried every protocol, drug, surgery, etc. you could think of: natural; neupogen; letrozole; Lovenox; Viagara; injectables (menopur one time, follistim another) to try and stimulate a lining; L-arginine and vitamin E therapy; scratches and biopsies; anti-inflammatory protocols; immune protocols; I even had more surgery (a hysteroscopy) to check for Asherman's and endometritis (no Asherman's but I did have mild endometritis despite having several negative biopsies in the months before, so that required a 6 week antibiotic treatment). If you can find it on Google my doctor and I have tried it (as well as all the standard stuff, too). I can usually achieve the trilaminar pattern, but no matter what we've tried I cannot get my lining to even a 6. Even during my retrieval cycle, which I responded to really well, my lining only ever got up to a 6.2.

You are absolutely right that thin lining can be extraordinarily frustrating, particularly because it is very uncommon and not well-understood. My RE is extremely experienced and he told me that in his career less than 1% of IF patients he's treated have had this issue (lucky, right?). I think for me the hardest part has been coming to terms with not even getting to a transfer.

After spending a year (and more money than the IVF itself actually cost) trying different therapies, protocols, etc. we finally decided to move onto to surrogacy. But I only decided to go the GC route after exhausting pretty much every possible protocol out there and clearly not responding well. It sounds like you are still a bit earlier in the process, and given that you were able to get a good lining during your retrieval cycle I think you have a strong shot at finding a protocol that your body will respond to (maybe injectables?). With thin lining, a lot of it is just trial and error - figuring out what does and doesn't work for your body. Best of luck to you!

sarcasticowl · September 2017

@AngryBull I am so sorry to hear about all your cancellations. You must have wanted to burn the world to the ground after 7 attempts; I'm so sorry. I'm glad surrogacy is an option for you guys. Unfortunately I don't think we'd ever be able to financially swing that, so I'm hoping beyond hope that this cycle I'm currently on will work out. My lining at first check (after only 5 days of Letrozole and nothing else for the next four) was 5.33 and I didn't have fluid this time THANK GOD, so not great but good enough that the nurse practitioner (I rarely see a RE) allowed me to start the Estrace, Lovenox injections, and yesterday was my first progesterone shot. I'm hoping that my final check on Monday shows I'm ready to go, because I will be positively homicidal that I've had to go through shoving 6 items a day up my vag and two injections plus countless vitamins and Rx pills with nothing to show for it. I hesitate to even be excited for this to work out because since the beginning of this process, in January, we've had roadblock after roadblock to even STARTING the FET process. I will definitely be back on here if they cancel me on Monday looking for advice, I can promise that.

Thanks for taking the time to tell me your story. I'll keep you in my thoughts as you start looking for a surrogate and begin that process.

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