Fluid in uterus - IVF

[IVFjourney12]

Hi - I’m new to mumsnet so apologies if I’m not posting correctly / using the right terms. I recently started IVF and have this week been for egg collection. I was due to undergo a fresh transfer this week, however during my egg collection they discovered I have fluid in my uterus which has got caught in a “niche” / defect in my scar from a previous C Section. My fresh transfer has therefore had to be cancelled and any embryos frozen instead. Having trawled Google for further information, I have read that this fluid in a C section niche can hugely impact future fertility, i.e. any future embryo is unlikely to implant, and if it does implant, it would likely result in a miscarriage.
I am obviously now filled with doom and am pretty convinced that any attempt at IVF will not be successful for me.
So I just wondered if anyone out there has had a similar situation (with fluid in the uterus due to a previous C section)? What were the next steps for you? And are there any success stories out there? (I’m desperately seeking success stories….!)
Thank you.

I had fluid in the cavity on one scan and then not on the next a few days later. Not sure if you've got similar from what you say but i'd try not to over-catastrophise, easier said than done with ivf i know

I have a niche, my fertility doctor says basically everyone who has had a c-section has one. I had fluid in the niche throughout my natural cycle, but not spilling out - is your fluid leaking into the uterine cavity?

Everyone I spoke to was so unbothered about the niche, particularly as mine was relatively small. Do you have measurements? Larger niches cause symptoms like spotting after period - do you have this? Small niches don't appear to have much impact. I of course stressed throughout, but my first transfer after developing the niche was successful. I did miscarry at 7 weeks, but I imagine this was unrelated, given my embryo did implant.

Try not to worry, so many women not going through IVF have these undiagnosed, and get pregnant just fine. IVF Is stressful enough as it is!

@Whatatodo79 Thanks for replying. Unfortunately my fluid has been there for all 3 scans and so there is suggestion of a hysteroscopy to try to resolve the issue.

@Floraspony Thanks so much for responding. So good to hear from someone who has similar. Yes, mine is leaking into my uterine cavity and therefore also affecting the lining (my lining is now thinner than they would want).

So I have zero symptoms, however on egg collection the consultants words were “the niche is actually a lot bigger than originally thought”. So I don’t have measurements, but from that comment I’m assuming it’s significant.

It’s so great to hear your embryo implanted, but I’m so sorry about your miscarriage. Did you have any further success / further attempts following this?

I’ve read online about several studies that indicate the presence of fluid can cause miscarriage (if the embryo even manages to implant). So now I’m questioning whether I should be continuing with IVF at all until I get this fluid / niche situation sorted… (I’ve had a missed miscarriage and an ectopic pregnancy in the past and I’m not sure I can face another failed pregnancy…).

You make a very good point re those women that don’t know they have a niche / fluid yet still fall pregnant. There must be a lot of those out there.

Thank you so much for replying. X

That's really interesting re miscarriage rates among women with a niche - do you mind pointing me to the studies?

I asked my doctor about this before we began the cycle and she said no - if it implants, and implants away from the niche, then there would be no increase in miscarriage risk. A quick search of the literature seems to point to to an increase from about 15-19% so not huge, but not worth discounting outright. I'm gearing up for another cycle now.

There are options to correct defects - laparoscopic if it's large and you have a reduced myometrial (sp?) thickness, a correction also makes future pregnancies less risky in terms of uterine rupture. Or they can aspirate the fluid beforehand. I contacted my health insurance at one point and it looked fairly likely that I could get a repair covered, but decided against it as my doctor said it's very unusual that her patients bother.

@Floraspony This information is all so helpful, thank you.

I came across the studies / medical journals during my frantic google searches! I haven’t saved down links but will have a look again and send you what I come across.

What your doctor said is so so encouraging! Things like this make me feel that little bit more confident.

Ah yes I read about the uterine rupture risks and that was another element I was panicking about…!
One of the consultants said she thought my niche might be able to be fixed by hysteroscopy, so again I’m clinging to the hope that that means my niche isn’t huuuge as not requiring laparoscopy (though all tbc until they go in for a proper look). But again, I’ve been given so little detail it’s all a guessing game at the moment…!

Thank you so much again; this has been so helpful. And wishing you so much luck for your upcoming cycle!!!

Hello, I know this was posted a few months ago now but I just wondered if you had any updates on this? I am about to start another round of IVF and have been told they think I have a niche from my c-section. I’ve been told I will probably need a hysteroscopy after egg collection - did you end up doing this and if so, was there recovery time etc? Thank you so much!X

Hi @gche ,
So I ended up speaking to multiple consultants and in the end a larger number of consultants were of the view that so many people have c section niches (and often wouldn’t even know they have one) and yet so many people fall pregnant after a c section, so they were of the view that treating the niche wasn’t a priority / necessary. One of the consultants I spoke to said it’s usually not the niche itself that’s the issue, the issue is if and when there is a lot of free fluid in the cavity. On my more recent scans no fluid was seen in the cavity so I proceeded with my IVF round (which sadly was unsuccessful), but gearing up for my second attempt next week.
Sorry not sure all that info is that helpful given I didn’t end up going ahead with a hysteroscopy. But I thought it was quite interesting (and also confusing!) how some consultants are very pro treating a niche with hysteroscopy and others are of the view that a hysteroscopy is of very little use / not much can be done to “fix” the niche…

Thank you so much for replying! That is so useful and interesting - thank you. I’m so sorry your last transfer was unsuccessful but fingers crossed for you and wishing you all the best with your one next week xx

No problem at all! And thank you so much. Good luck to you, too. X

Hi, do you mind me asking how you got on with this? Also having the same issue. Many thanks

@NiftyAmberLion Hi there. Sorry to hear you’re having the same issue. However, if it gives you hope / helps at all, I fell pregnant on the second transfer of IVF (currently 29 weeks pregnant). I had no fluid showing in my scans prior to transfer; but obviously the niche was still there, so it would seem you can get pregnant despite the niche! Hope that helps. X

Amazing thanks so much, that does give me hope! Xx

Good luck with it - I hope it goes well. X

@NiftyAmberLion I had fluid in my niche often. I needed surgery to remove scar tissue and a cysts and the surgeon also ‘tidied up’ my niche while he was there -he said something about smoothing the edges so the fluid didn’t pool there. I did have one Ivf round cancelled due to the fluid. But sometimes it wasn’t mentioned, so I do think it can be one of those things that is there one cycle, but not the next, or there for part of a cycle then disappears. I had other fertility struggles I won’t go into, but do not have my dd. Good luck

That’s helpful thanks. Hoping I don’t have to go down the route of a repair but something to look into if this FET doesn’t work I think.