Fluid in uterus, ttc previous cesareans

[Herehoping93]

Has anyone else got any experience with infertility caused by a c section scar defect and fluid in uterus?
I currently been ttc for 3+ years since 2 previous c sections and few miscarriages since. I was rejected for ivf based if the finding of a niche and fluid accumulation. Theu said the won't put the embryo in with the fluid there.
I am awaiting surgery to repair the niche, remove adhesion and any endometriosis.
I have had an MRI scan which confirmed the defect but was only small and was no fluid at that time but I have been advised to try ivf before surgery due to potential more infertility problems after surgery and such a long waiting list times with nhs.
So I have spoken to ivf clinic they have agreed to go ahead but have said that when it comes to egg transfer day if there is fluid it will be a freeze all until fluid is gone or I have the surgery. So worried about this i just want the fluid to go.
Every transvaginal scan I have had has shown a small amount of free fluid in cavity.
Any advice on how to get this out naturally before egg transfer.
Or any advice would be great.

That's a pretty insensitive thing to say, with no information about whether the previous births were live births. The OP asked for advice on a particular issue, not on whether she should stop trying for a baby.

Thank you @EishetChayil
@SweetBabyCheeses99 you have no idea of my situation or what I have been through or am going through. You comment was very insensitive. I was only looking for for advice and to see if anyone out there had any experience of my situation, not to be made to feel worse than I already do.
This platform is ment to be a supportive place for people to discuss things.
If your comment was not ment to be condescending then please consider your wording in future.
Thank you

I am going through this currently and had my surgery to repair the defect in November.

I had x6 IUI before falling pregnant with my son who ended up requiring a C-section as he was breech.

Since than we have been trying for 4 years for a sibling. X4 IUI, elective freeze all egg collection x2 x3 FET x3 cancelled FET due to fluid and x1 cancelled IUI.

It has been extremely difficult to get anything done about it. I ended up going privately for my surgery due to my age and the wait on the NHS. The surgeon gave it a 50/50 chance of working. I have had to wait at least 3 months before doing another transfer.

The niche has been seen on every single scan I have had and fluid in most scans, though sometimes it takes a while for it to appear. My fertility clinic confirmed there was a hole in the niche by doing a 3D saline scan as they could see the saline leaking into my abdomen cavity. The defect went through the full thickness of my C-section scar but was only a small area. If I do get pregnant again I will definitely need a C-section as my scar will not be as strong.

The surgery was hystercopy and laparoscopic repair which the literature suggests is the best way to repair. It is a relatively new treatment option so there isn’t a lot of experience/written in the literature.

Good luck. Feel free to PM if you have any questions.

Hello @Dojiejo thank you so much for sharing all of that with me its much appreciated.
Wow you have been through so much.
I had two c sections last 9 years ago. 3 years later conceived after trying for long time and miscarriage 3 days later they said I may have been 9 weeks.
Since then I have had many faint positive tests but then had my period. And a few apparent 'chemical pregancies'
I have always had quite bad pelvic pains which I have told many thing ths times have gluten intolerance, ibs I have been put on antibiotics 3 tomes for pains and been told I probably have pelvic inflammatory disease. Which antibiotics nothing made any difference and don't believe I had.
A year ago after several doctors visits for pain I saw a gynaecologist on the NHS and was told I most likely have endometriosis and severe adhesions but nothing has ever been seen on any of my transvaginal ultrasounds.
The only reoccurring thing that has been seen on every scan is a tiny amount of free fluid in the centre of my uterus.
The nhs put this down to nor Al and different times of the month and said my scar looked fine.
Me and my partner looked info IVF I had some scan done privately and lady said that the fluid in cavity would be a problem when it came to embryo transfer if was still there. So told me to go back to NHS they said your fine have the IVf first then will will do a laporoscopy for the adhesions etc. So went back to ivf had another scan and this time they saw another pocket of fluid in which looked like a small niche as well as the normal small amount of fluid.
Went back fo nhs again
I couldn't get any where with them cause of wait times etc so saw gynaecologist privately who sent me for an MRI scan
This showed a small partial thickness niche but had no fluid in that at time of MRI scan
But there is a note at bottom of report which says a there is a trace of physiological free fluid in the cavity??
The consultant has advised me to go ahead with an ivf cycle before I have surgery.
The wait times are apparently 6-12month plus
So I contacted the ivf clinic once again they have said they they will go ahead but if fluid remains at embryo transfer it will be a freeze all until fluid goes or I have the surgery.
This all is so stressful and upsetting, I have always known there was something wrong but nhs kept saying everything looks good etc so frustrating now I find this out after years of go back and forth.
My two children are from a previous marriage when was very young.
Me and now partner have been trying to have a family together for so long and it's just been heartbreaking all the time.
I really do wish you the best and really hope your transfer following the surgery will be successful finally for you and that surgery went well.
I'm just so worried and I'm in constant pain due to the endometriosis and the adhesions and either need surgery surgery to have a baby or last option to stop pain os having a coil which is last thing I ever wanted.
This is the last chance we have really as I can't cope with the pain anymore I'm in agony daily and can barely walk now have had go go off work sick until something happens :(
All the best please keep me updated on what happens would love to know outcome.

I am experiencing the same as you @Herehoping93. Emergency c section nearly 4 years ago for our son who was conceived very quickly and been struggling to conceive since he was 18 months old. Had IVF last year which failed (niche and fluid were visible but clinic said they would give it a go). After it failed, I wanted the niche looked at further so booked a private MRI before Christmas and the results last week weren't good. Consultant said I need it fixed before we do anything else. I am tempted to pay privately but this will use up our ivf fund. But I guess I hope of it gets fixed, I may then conceive another child naturally. Just wondering if anyone knows how much a repair would cost? I don't have private healthcare insurance so would be a self funded patient.

Thanks if anyone has any ideas

I spoke to private consultant with nuffield health she advised £9-10,000 for repair :( I'm on nhs waiting now

@CK85 sorry to here your cycle failed, can I ask when they did the embryo transfer was there fluid still showing ? I was considering giving ivf a go before waiting for surgery but they have said if fluid shows at transfer day it will be frozen.. Have you heard anything regarding a fluid aspiration during egg collection? I have been reading into studies that have been done on people with our condition and I read that there has been some success with during an ivf cycle the fluid showing is aspirated at same time as egg collection using a small catheter and they have conceived but I have had no mention of this from my ivf clinic?
Was going to mention it at next appointment.

Hi all

I had a C-section niche which was seen on ivf and partly caused my secondary infertility.
I had it fixed by mr lower in London - was about 5 grand for op, hospital costs and anaesthetist etc and appts.
I’m know 38 weeks preg.
A lot of docs don’t agree or feel it’s an issue but I think there is a body of evidence showing it makes a toxic environment for the embryo to grow in. Mine was quite small so I just had it shaved down not fully removed. But mr lower will do what’s best for the size of the niche

Good luck girls x

@Cream123 thank you for sharing your experience, I would rather have the operation before I try out ivf but the wait on nhs is so long at the moment, I have at that clinic.
I do agree that I have been trying non stop for years and surely I should have conceived by now when no other issues they say the no he shouldn't cause a problem but clearly it has.

The clinic did mention aspirating fluid but due to the niche they felt it would fill back up. I'm interested to see differences in price and thank you @Cream123 for sharing your experience and giving me hope. I've been feeling very low about it all and a range of emotions (angry it's happened but then guilty as my little boy wouldn't be here without it). So trying to remember the positives and count my blessings but it is so very hard.

@Cream123 Can I ask how long you had to wait after niche repair operation before you started trying for a baby again.

I could start 1 month after. I also have male factor infertility so had to do ivf anyways. After 2 ivf fails I had it repaired and my next one worked and there was no fluid in uterus

Thank you for your reply. I'd read we had to wait at least 6 months so that is interesting. My fluid wasn't in uterus, it was more in cervix but they felt it did affect lining somehow and therefore implantation. Really appreciate your responses.

So shocked by the fact this even happens to women, I have read about so many factors which can cause this to happen, eg stage of labour when had c section, single layer stitching, initial cut location etc. Also feeling very angry and upset about all of this me and my new partner just want to start a family together and I feel guilty about my boys I have got but also so sad to feel like I'm just infertility now.
We also have mfi, and my niche is small the fluid I have is in the uterus cavity and is seen all the time but is so small the mri scan I had said no fluid in niche but trace of physiological fluid, which I don't understand.
I have been advised to attempt ivf prior to surgery but so scared it won't work and wasting money etc. Planning to go ahead in March if when it comes to embryo transfer and there is still fluid it will all be frozen. Until I have surgery 😪 not feeling positive atm

Mine was a planned section due to placenta Praevia. I also had scarring in my uterus which prob added to my infertility and why my ivf failed. My niche and that was fixed at the same time in same op

My first son I also had placenta previa so had a planned c section, second one was an emergency ceaserean after 12hours labour as wasn't progressing. (@Cream123 do mind me asking what the uterus scarring could have been caused by? I have been told I most likely have adhesion and maybe endometriosis also)

Prob a mix of section and retained placenta. I’ve had a lot of surgery on my uterus lining due to a number of miscarriages before
My son and the section with him. More surgery u have to ur uterus more likely it may heal with scarring.
Mr lower is the uk expert on scarring inside the uterus - Ashermans. This is different to adhesions outside the uterus.

Like @Cream123 I had surgery with Mr Lower in London. It wasn't my primary problem (had a big adhesion acting like a coil that a different doctor had incorrectly diagnosed as just a ridge 3 years before) but he did tidy up my niche too. I only had fluid show up sometimes during ivf, so I don't think mine was as bad. I can now fall pregnant, can't stay pregnant, but that's a different problem!

Since my last post, I have had a quote of £5500 so have agreed to go ahead on 3rd March and have my niche sorted and womb repaired. I am now starting to panic though about the surgery and dying and leaving my 3 year old. I know this probably sounds irrational but never had an anesthetic and wondering if I should just be happy with one child and forget the whole thing. @Cream123. Did you have these feelings before surgery?

Sorry just jumping on this thread as I have too been to see Dr Lower. Initially it was to diagnose Asherman's (there is a small amount) but then he was concerned with my c section too. He quoted me £7000-£10,000! Much higher than your costs! Can anyone share what the op/recovery was like?

TIA xx

@CK85 it’s quite a quick surgery and recovery is swift. I didn’t hugely but I have had lots of quick anaesthetics for a lot of miscarriages over the years so I knew from that end I would be ok. I think it’s totally natural though
lower is great, not sure about his bedside manner as found him quite rushed but surgically he def gave me my daughter and for that I’m eternally grateful.

@MeganMama28 that sounds very similar to the surgery I had with him. I had big adhesion removed, c-section niche tidied up and a big cyst drained/removed. I've had 6 general anaesthetic surgeries now (for different things) and physically recovering from the incision side of things I find fine. Sometimes sore, but that is keyhole so manageable. Personally, it takes me at least 10 days to feel myself after a general anaesthetic. After my mr lower surgery I went back after a week as I'm a teacher so I felt bad about it and my school were pissed off at me taking time off in term time. I regret going back so soon. I think 2 weeks would have been right to feel fully ready. You may do much better than me though!

In case this gives anyone some hope I was pregnant the month after. Sadly then miscarried then pregnant again 2 months later (again another miscarriage). So it did work in terms of suddenly being able to get pregnant! Unfortunately for me it seems I have some immune issues so staying pregnant is the current hurdle!

Hi there, I know this is an old post but just wondered if you had the surgery? I’m in exact same position and as you were, am so scared of actually having it (I have a young son too) and something going wrong. Was yours all ok? x

I had the surgery and had no issues post and it stopped the fluid from accumulating. I am now cuddling my 5 month old who I do not think would be here, if it wasn’t for the surgery. Good luck.