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Conception

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Infertility after c section

207 replies

Lucy040288 · 12/04/2025 09:29

Hi

Just wondered if anyone had any experiences of infertility post c-section. I had an emergency c-section in July 2022. I started having some right sided abdominal pain about a year later. We have been trying to conceive our second child since January 2024. I went to the GP in June 2024 and had a transvaginal ultrasound which was normal. In September I went back to the GP and we had bloods and investigations and referred to fertility. Bloods and husband’s semen analysis all normal. I had a HSG in March 2025 which did not show any spill of dye from right tube indicating blockage. I’m wondering if I should have a laparoscopy to see what’s going on but my consultant says they don’t usually do laps that often anymore and go straight to IVF. I just don’t want to do IVF for it to fail and then have a laparoscopy and find a problem that could have been sorted meaning we could conceive naturally. Obviously we would have to pay for IVF as we already have a child. Also, I don’t know what could be causing the right abdominal pain. Could it be adhesions, endometriosis, the blocked fallopian tube??? Some months I’ve experienced extremely tender breasts in the 2 week wait but then came on my period so I don’t know if that could mean the egg’s been fertilised but unable to implant due to inflammation or this blocked tube?! I think I had a couple of chemical pregnancies last April and June as I had very tender breasts and a faint positive pregnancy test but then period arrived. I then stopped testing as it was too upsetting. I didn’t have any problems conceiving my daughter. I just don’t know what’s going on or what to do for the best.
has anyone been through anything similar?

x

OP posts:
Lucy040288 · 20/06/2026 22:45

@ChaE05 i’m not sure about retesting…part of me is scared to know! I should have a follow up scan in a few months to see how I’ve healed though.
yes any gynaecologist who does a hysteroscopy and takes an endometrial biopsy can request a CD138 stain from the labs.
I’d also suggest getting an MRI scan. On my ultrasound it looked like I had a thick myometrium until my MRI showed 0. Quite worrying as I could have gone for hysteroscopic resection and they’d have likely perforated my uterus.

OP posts:
Lucy040288 · 20/06/2026 22:40

@ChaE05 forgot to say, my spotting wasn’t horrendous. I had some brown spotting after my period for a couple of days but think because I had 0mm myometrium there wasn’t any muscular wall to contract the fluid out of my niche for days on end so I believe the fluid tended to stay in its pouch and stagnate.

OP posts:
Lucy040288 · 20/06/2026 22:38

@ChaE05 so here goes…..i was discharged from the NHS fertility clinic last September with ‘unexplained infertility’. I’d had a transvaginal ultrasound which was normal, a HSG which showed a right proximal blocked tube and a laparoscopy confirming right blocked tube but no endometriosis or adhesions and everything apparently looked normal.
I had several very faint positive pregnancy tests that came to nothing. Also right sided pelvic pain. I got pregnant 2 months after my HSG but miscarried at 6 weeks. My theory was the HSG flushed my uterus out and reduced inflammation enough to allow an embryo to implant for slightly longer. I did a lot of research and diagnosed myself with chronic endometritis as all my symptoms seemed to fit. I felt I wasn’t being listened to at all by professionals so I decided to purchase antibiotics online to treat what I believed was chronic endometritis. I don’t advocate anyone doing this but I was genuinely losing the plot and was desperate!
While taking the antibiotics I had a meltdown at work (I work in a hospital) and went to speak to one of the fertility specialist nurses about all of my symptoms. She really listened and booked me another ultrasound. It was this ultrasound on day 15 of my cycle which showed the niche containing fluid. I then had a consultation with a registrar the following day who thought that the niche may be my issue and wanted to look into it further however she had to get the approval of the consultant and wanted him to look at my ultrasound images but he was currently away. I also had recurrent miscarriage bloods taken to rule other things out.
I waited a couple of weeks and then heard I’d been listed for an NHS hysteroscopy. After chasing this up, I was told it had been triaged as routine and would be a long wait. I saw my fertility consultant privately who did not feel the ultrasound showed a significant niche but requested an MRI. The MRI was rejected in the NHS so I paid privately.
while awaiting the MRI scan I sought a 2nd opinion from a different gynaecologist who suggested we do a hysteroscopy. I told him about my niche but he did not think this was relevant. He said that the chemical pregnancies I was experiencing was likely due to my age and chromosomal abnormalities. I went ahead with the hysteroscopy which cost £4000 under general anaesthetic. He said everything looked fine and said we needed to get eggs from me and start IVF if I wanted another baby. He had taken a biopsy and when I went for my follow up appointment he was very sheepish and told me my results had shown chronic endometritis with a CD138 count of 6 despite already taking antibiotics so he believed my niche was causing the inflammation and affecting implantation.
I then had my MRI. This showed a 6mm niche with 0mm myometrium and only 2mm serosa covering the niche. My fertility consultant had not undertaken this procedure before so referred me to Professor Justin Clark. He had also referred 2 of his IVF patients to him before following recurrent implantation failures and both had got pregnant after laparoscopic niche repair by Professor Clark. So I booked a private appointment and 7 weeks later had the surgery. The laparoscopic c section niche repair has cost me just over £6000.
in total with consultation fees and scans and procedures we have spent around £13000 so far but that could have been a lot more if we had gone for IVF. I had always been reluctant to go down the IVF route as I felt that there was something wrong.
The consultant who did my hysteroscopy wanted to do the niche repair but I felt he’d been very dismissive of my symptoms and was very quick to put my problems down to being the wrong side of 35 so I didn’t feel comfortable with him. Professor Clark is internationally renowned for his surgical expertise so thought I’d go for it.
I know it’s hard. When we first started trying for our 2nd I read about c section niches causing infertility and was worried I had one but after my first ultrasound didn’t show anything I thought I was fine. In February when the ultrasound found my niche I was distraught. I felt so much time had been wasted and couldn’t stop crying for days. But then it gave me an answer for why we weren’t conceiving and I knew it needed to be fixed. I’m not saying this will 100% help us conceive but it’s got to be worth a shot. As well as the fact if I had have got pregnant then I would have been at extremely high risk of uterine rupture. Maybe it was my body’s way of telling me that my uterus wasn’t strong enough to carry a baby.
Try to take a few days to process it all and then plan your next steps. Xx

OP posts:
ChaE05 · 20/06/2026 18:24

Appreciate all this info so much !
So basically you had antibiotics and then a biopsy taken and it showed CE. So clarification that the niche was causing it. I feel so hopeful for you now ! Will you retest at all or just see how it goes?

Yes I have spotting. Sometimes 1 or 2 days before then about 5 days post period till about cd8. Nothing terrible. Dont need to wear a pad. Just occasionally some watery brown discharge. Did you have spotting?

How did you find the right surgeon for you? Are all of them able to test for this CD138?

If you dont mind sharing how much your surgeries were? Hysteroscopy and lap? Sorry for all the questions ! After finding out the news my mind is such a mess ! X

Lucy040288 · 20/06/2026 18:05

@ChaE05 yes he cut out the niche and re-sutured my uterus back together. I had a hysteroscopy in March where an endometrial biopsy was taken and this showed chronic endometritis. This biopsy was following a 2 week course of doxycycline and metronidazole so the surgeon I saw felt that my niche was directly causing the inflammation. My CD138 count was 6 and generally anything above 5 is chronic endometritis but having a count of 0 is preferred.
an endometrial biopsy can be done at hysteroscopy and sent for CD138 staining. The only problem with NHS is the wait. I paid private for mine as I was told my NHS hysteroscopy would be a good few months wait. I’m 38 so like you I feel time isn’t on my side.
do you have spotting after your period? My spotting wasn’t horrendous actually but my niche was like a trap door so constantly holding onto fluid. My niche only showed up on ultrasound mid cycle. It hadn’t shown up on any other days of my cycle before.
it is all so frustrating!!! Thank you, yes I will keep you updated. It is a long time and I am stressing that I’ll have gone through this procedure and it won’t work but I’ve got to try and hope it does.

OP posts:
ChaE05 · 20/06/2026 17:56

@Lucy040288thanks so much for your reply!
Sorry to hear youre struggling post surgery. I really pray this is your answer! Did you have the niche removed? Did everything else look okay? No chronic endomitrisis?

Thank you so much for the advice. Can a hysteroscopy and CD138 be done at the same time? Would the NHS do this do you know? Or would I need to go private.

The doctor didnt mention any fluid being seen before she put the saline in. But then could clearly see the niche! I have had multiple scans over 1.5 years (only 2d) but never any mention of fluid. Would it have been seen?

Its such a hard journey trying to figure out why we cant concieve. I actually hope this is my answer, as gutted as I am. Im 39 now so time isnt on my side.
Wishing you a speedy recovery. And you will have to keep us updated ! 6 months seems a long time but i bet it will actually feel nice to turn the pressure of ttc off x

Lucy040288 · 20/06/2026 17:55

I read this the other day. Thought it may give us some hope!

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Lucy040288 · 20/06/2026 17:50

@ChaE05 hi! I’m sorry to hear you have been found to have a niche. It was also 2 years for me until mine was found. Is yours holding fluid? I suggest to push for a hysteroscopy and an endometrial biopsy for a CD138 stain. If the CD138 result is above 5 then this shows chronic endometritis which can be inflammation caused by the niche. This also gives you evidence that the niche is directly causing your issues. I would imagine your residual myometrial thickness should be sufficient for hysteroscopic resection?
Unfortunately not many consultants believe a niche is a problem but for some women it definitely is. The NICE guidelines for infertility even state to not do a hysteroscopy if nothing is seen on ultrasound which is utterly ridiculous. Things need to change to stop women suffering like this.
I have now had my laparoscopic niche repair. Not going to lie, it’s painful and I’m struggling a little at the moment but just hoping it is the final procedure which sorts me out once and for all. Obviously I can’t try for 6 months while it heals but I’m trying to stay positive.

@HPrior I’m sorry I thought I’d replied to you before. I thought you’d have the ReceptivaDX test. Yes I imagine that would have been useful. Any update on your symptoms?

OP posts:
Acadetu · 20/06/2026 11:23

I'm so sorry you're going through this. It sounds incredibly frustrating and emotionally exhausting. While I haven't had the exact same experience, I've seen many women discuss issues like adhesions, endometriosis, or tubal problems after a C-section, so your concerns are understandable.
A blocked tube and ongoing pain definitely seem worth discussing further with your fertility specialist. If you're not comfortable moving straight to IVF, it may be reasonable to ask more questions or even seek a second opinion so you feel confident in your next steps.
Wishing you answers and hoping you get the outcome you're hoping for.

ChaE05 · 20/06/2026 10:38

Hi girls...I hope you dont mind me jumping on. I have been scrolling and scrolling through your experiences. I have just found out I have a significant niche of 9.9x6.6mm. However my myometrium measures 3.6mm. I have struggled with secondary infertility since November 2024. We started to try when my son turned 1. We had 2 early losses on cycle 3&4 and nothing since. We've had so many investigations about 7 scans, including HyCoSys sperm dna etc etc. I paid to have a 3d saline scan 2 days ago and it showed this niche 😪 feeling utterly devastated. Where should I go from here? I have emailed NHS fertility clinic (as I believe im still under them) but not hopeful they will help. Im not sure if hysteroscopy or laparoscopy would be needed for my niche. The clinic said it was a significant one but they were measured by the measurement of the myometrium. I had this done at the CRP Clinic...I think one of you may be under them? They dont believe this is causing issues conceiving. But after alot of reading im not convinced at all. This journey is exhausting. Love to all and hope you can send some advice my way xx

HPrior · 25/05/2026 19:04

There’s been a lot of discussion today, so taking the topics in turn:

RMT: The official minimum seems to be 3mm. Mine was 6mm, so I was comfortably above that. However, at my follow-up consultation — when I was still bleeding 3 weeks after surgery and asking various “what if” questions — I asked whether I could have the procedure again if it hadn’t worked. The surgeon said that because 6mm is generally considered the minimum if you want to preserve future fertility, he would be reluctant to shave away any more tissue.

I later looked into this myself and found there’s actually no real consensus. Some surgeons seem comfortable with 3mm, others prefer 6mm. Personally, if mine had only been 3mm, I would probably have opted for laparoscopy instead, but that’s because I’m fairly risk-averse.

Re how I decided to go for surgery rather than just transferring embryos: it was never really a choice framed like that for me. I always wanted further investigations and/or surgery, but my IVF clinic repeatedly talked me out of it — before IVF, after the first failed transfer, and attempted to do so again after the second failed transfer.

After the first failure, I remember calling the clinic furious and wanting to change consultant, but they talked me out of that too. After the second failure, I think the consultant was worried about how I’d react. In reality, I was calm and polite, but firm that I wanted proper investigations.

Another consultant at the same clinic did a hysteroscopy and laparoscopy. They found nothing except a tiny amount of endometriosis, and I was told the niche was “fine”. His recommendation was simply to do another transfer and add blood thinners. That was the point where I completely lost trust in the clinic and went elsewhere for advice.

Even though I’ll still need to use them for transfers because my embryos are stored there, I will never again trust them on decisions about whether, when, or how to transfer embryos.

IVF team adamant the niche wasn’t to blame: my fertility consultant looked directly at the niche during hysteroscopy and told me to my face that it was absolutely fine and not responsible for my infertility or spotting. Personally, I would be cautious about taking IVF clinic advice on this type of issue. They are specialists in IVF, not niche repair, and they can sometimes be very blinkered outside their specific area of expertise. There’s also an unavoidable financial incentive to keep transferring embryos rather than stopping to investigate underlying issues.

Pregnancy rates after surgery: my understanding is that there really aren’t any reliable figures. The studies are all very small (often fewer than 100 patients) and results are mixed. So I’d be wary of anyone confidently quoting blanket success rates like “60%” without properly qualifying where that number comes from.

EndomeTRIO: I had the EMMA and ALICE tests while still at the fertility clinic. In hindsight, I think they were largely pointless — especially EMMA. I also asked for ReceptivaDX, which would also have looked at CD138, but was talked out of it. That’s the one I now think may actually have been worthwhile.

Consultants saying one thing and then changing it later: I’ve had this happen multiple times. I record every consultation on my phone (with permission — I usually say my husband can’t attend and wants to listen later, which tends to make it feel less confrontational). Originally I did this just so I could properly process and understand everything afterwards, but increasingly I do it so I can double-check I am being given sound advice.

For example, one consultant recommended blood thinners for a future transfer. When I researched it afterwards, I found there’s basically no evidence base for using them in my situation. A different consultant later described it as more of a “throw everything at the wall and see what sticks” approach.

On the question of how many procedures a surgeon has performed: I didn’t ask, and I wish I had. If I ever need another procedure, I absolutely will ask. Don’t feel embarrassed about questioning or challenging consultants — advocate for yourself and don’t worry about hurting their feelings.

Symptom update: Thanks for asking, unfortunately my last period wasn’t much better. It was very similar to the first post-op cycle, although there was a slight improvement in that I didn’t get fresh bleeding after the period had ended — only light brown spotting. I’m going to wait until after the third cycle before deciding whether to have someone take another look at it.

Lucy040288 · 25/05/2026 14:02

maybe he was offended I asked but thought it was good to know! Oh only 3 months! I think I’d probably rather wait to make sure it was strong enough to withstand a pregnancy so will wait the 6 I reckon.
my fertility consultant has never done this procedure so recommended Prof Clark as he had sent 2 of his IVF patients with recurrent implantation failure to him for niche repair. They both got pregnant following the repair. I did look him up and he’s excellent in his field and lectures internationally.
The consultant I saw in Nottingham for a second opinion was keen to do the repair but he’d annoyed me with his attitude about my age and telling me there was nothing wrong. He was keen to do the repair with his robot but I decided to go with Prof Clark.
I think maybe ask how many of the procedures they have done and what their success rate is.
it might not be. I did read a couple of stories from women who the doxycycline worked for but that could be coincidence. I do think the antibiotics helped my pain but then it came back. So maybe it does help reduce inflammation but not enough in my case.

OP posts:
1SparklingWater1 · 25/05/2026 12:20

@Lucy040288 thanks for the information about the CD138 stain, I'm going to add this to my list of requests for my next meeting. That's good you know a specific number for your surgeon, I quite wanted to ask this and wasn't sure if it was an offensive question haha! Dr Jan said for his laparoscopic repair, I'd only need to wait 3 months til the next transfer. Such mixed advice even for the same type of surgery!

How did you go about choosing your surgeon? I'm so nervous about choosing the wrong person! Esp as it's a new area of medicine, it's quite scary being a guinea pig!

I read in another forum somewhere that the Tommy's trial about doxycycline showed that it didn't help. Not sure how reliable that source is, and the study's not due to be published for a while unfortunately.

Lucy040288 · 25/05/2026 11:34

@1SparklingWater1 definitely get the CD138 stain done! My biopsy was ‘normal’ but the stain showed chronic endometritis! The surgeon who did my hysteroscopy was adamant it was my age and egg quality but had to eat his words when the CD138 came back showing chronic endometritis and then he was wanting to do a robotic repair of my niche and saying I was a spring chicken! So frustrating!
I’m paying private in Birmingham with Professor Justin Clark. He’s only done about 20 of these procedures and told me I won’t be able to try to conceive for 6 months. However, he said a woman had contacted him who had got pregnant 3 months after the surgery! Thankfully she was fine but he wouldn’t recommend getting pregnant so soon after it. He also said there is a Dutch study that is soon to be published which he has peer reviewed which is a randomised controlled trial comparing niche repair vs expectant management to see if the repair leads to increased pregnancy rates. This niche thing is all a very new area of research but I do feel the case is building that repairing them leads to improved fertility outcomes. It’s just getting the consultants to listen!
If you get the CD138 stain done and that shows inflammation then you have proof that the niche is causing it. Sometimes the inflammation can be resolved through taking antibiotics like doxycycline. Tommy’s is doing a trial about this. But if a niche is present then it is likely that this structural issue is the cause of the chronic endometritis.
did you get your MRI reviewed?

OP posts:
1SparklingWater1 · 25/05/2026 10:32

@Lucy040288 Sorry for my typo! I've read MANY cases about it succeeding after surgery. Obviously it is anecdotal but I took that to be a positive thing. The surgeon I spoke to last (Haider Jan) also told me that pregnancy rates are 60% after surgery, although the researchers don't know how many of those people would have conceived anyway. That's positive that you've got a date - who is your surgery with? Are you doing it privately or via the NHS?

I have had 2 biopsies, both of which were clear. Not tried the CD138 so I'll look into that, thank you.

Our last surgeon recommended the TRIO test of EMMA, ERA and ALICE before a third transfer. I told this to my IVF consultant, who replied quoting 2 studies where these tests shows no benefit. I am completely confused - either it is beneficial (even a little) or it isn't. Now going to go back to the first surgeon to ask him if he can point to specific studies showing the benefit. Don't particularly want to do the ERA test as it requires a mock cycle and taking all the meds etc, it's also a logistical nightmare for me to travel to London from Scotland but that's a separate issue!

Lucy040288 · 25/05/2026 10:23

@1SparklingWater1 you have read many cases or no cases of success after laparoscopic repair? My surgery is scheduled for 10th June. Have you had an endometrial biopsy and a CD138 stain? This detects plasma cells in the endometrium and shows chronic endometritis if above 5 plasma cells per higher power field. Mine was 6 after I took antibiotics so my niche is what is causing inflammation by holding onto stagnant blood and gunk. This is why I believe I have had chemical pregnancies as the embryo manages to implant a little bit then fails due to the inflammation. Also probably why I managed to get to 6 weeks 2 months after my HSG as that flushed it all out

OP posts:
1SparklingWater1 · 25/05/2026 10:10

@HPrior Can I check which type of surgery you had, hysteroscopic or laparoscopic? I've now had 3 consultations with 3 different consultants (Adrian Lower, Ertan Saridogan and Haider Jan). The first 2 said to do a hysteroscopic repair as my RMT is 3mm, and Haider Jan said to do it laparoscopically because 3mm is apparently the threshold for him. So confusing when you get different advice within the surgical world too. We've just had our second euploid failure using Grade A day 5 embryos. Absolutely gutted as they were out best 2 shots. We have 7 euploids left which I know is a good position to be in. But I don't feel hopeful as the best 2 have failed and we now are left with only 1 top graded one. The rest are day 6s or 7s and all grade C. Originally we planned to do surgery as a last resort but now we might do it as the next step. How did you decide what was the right point to try surgery? How have your symptoms been the last few weeks? I really hope it's improved for you. When can you try another transfer?

@Lucy040288 how are you getting on? I can't believe you've had so many chemicals as well, sorry to hear that. Interesting the one thing that all 3 pf my surgeons agreed on is that is is unusual to get chemicals with a niche, and most of the time it is complete implantation failure. It makes me doubt whether my niche is even to blame (as my IVF team is adamant that it isn't). Have you got any further with the plans for laparoscopic repair? Sounds like that is def the right way for you to go with the RMT issue. I have read any cases on the FB group of people succeeding after that repair.

Lucy040288 · 22/04/2026 17:17

@HPrior i think unfortunately fertility experts are just geared up to do IVF as that seems to be the answer for everything these days. Niches are a new area of research and many consultants go off having an evidence base. If there isn’t enough evidence to show niches affect fertility then they won’t look into it. The best person I saw in February was a registrar/clinical fellow and she said immediately that she thought the niche was the cause of my ‘unexplained’ infertility but she needed her consultant to agree. He didn’t agree but did request an MRI to have a closer look. I think maybe the new trainee doctors coming through may have more awareness of these niches due to the newer research. plus c sections now seem to be the norm with more and more being done. My consultant did acknowledge that they’ll likely be doing more of these repairs in the future.
so I would say everyone is individual and try not to compare your care to others on facebook forums. I understand you being disheartened but you’re still going to be healing. Hopefully things will improve over the next couple of months and it does sound positive that the spotting has reduced in viscosity.
a think a bonus of the new professor I’m going to be seeing isn’t a fertility specialist but a gynaecologist so won’t be pushing IVF at me as the only way forward.

OP posts:
HPrior · 21/04/2026 11:54

@Lucy040288and @1SparklingWater1 thank you for your responses. I have now been given access to the Facebook group and it’s crazy to read all these stories and symptoms so similar to mine after two years of having my symptoms unexplained. How are medical professionals and so called fertility experts missing this so consistently?

Reading the facebook comments does also make me feel rather disheartened about the realities of how successful the repair procedures are. Seems it works for some and not for others.

I know I have to wait for one or two more cycles and see if there is any further improvement. Hard not to feel disheartened when after 6 weeks I am still spotting up to ovulation. I did have some small improvements: pre menstrual spotting was only one day (down from 3-5 days before) and post menstrual spotting was not the think sludgey black blood I had before, it was lighter brown in colour and more watery and much less in volume. However, the duration I think was slightly worse - previously it stopped just before ovulation but this time I had blood mixed with egg white mucus (so right up to and including ovulation).

Lucy040288 · 20/04/2026 21:18

@1SparklingWater1 definitely get your MRI reviewed. Although, I think there are different protocols for MRIs depending on what it is looking for. But if a gynae radiologist can look at it then it might show something.
I must have had at least 5 chemicals and a miscarriage at 6 weeks over the last 2 years. My understanding is that the fluid in the niche causes chronic inflammation in the uterus which prevents adequate implantation of the embryo or the embryo implants near the niche where the blood supply is compromised and it is unable to survive.
I honestly wish I’d paid for an MRI a year ago! Yes I kept being told it was my age and egg quality! I’m 38 now but been trying since I just turned 36. So so frustrating not being listened to.

OP posts:
1SparklingWater1 · 20/04/2026 20:17

@Lucy040288thats so interesting what you’ve said about an MRI. I had no idea that it could show such different results. I have actually had a pelvic mri recently but for an unrelated issue, I might see if they can review the images again!

I saw in an earlier message that you’ve had chemical pregnancies too…I haven’t come across many people who have had them whilst having a symptomatic niche. I’ve had 6 in the last 3 years including 1 with a euploid embryo. Was told many times that it was my age (40 in a few weeks), but exactly the same thing happened in my IVF cycle with a tested embryo so the clinic seem to now agree that something else is going on. I’m lucky to have a good number of euploids in the freezer but it just feels like I can’t do anything with them because I keep miscarrying. So hard to keep the hope going.

1SparklingWater1 · 20/04/2026 20:11

@HPriorthanks for the info. Not heard of that consultant but I’ll look him up. I’m actually based in Scotland but I’ve had to travel to London many times over the last 3 years to get access to specialists, no one up here looks at the more ‘experimental’ treatments. I know the Facebook group well - it is useful to find others in a similar situation, a lot of the time I just use it to get hope that it will work out.

I hope the spotting resolves for you, I would take it as a positive that the bleeding pattern has changed - you’ll see from the fb group that plenty of women have managed to conceive whilst they have spotting, and it shows that the surgery has had some impact, maybe it’s all you need to have a successful implantation.

Adrian Lower didn’t say too much about the potential success, he said it might work in maybe 50% of cases (not a bad % in my opinion!) but as you say, the research is so limited right now.

I’m similar to you in that I have euploid embryos in the freezer but I’ve been reluctant to do another transfer. I did actually have a hysteroscopy with Lesley Regan a couple of months ago where she got rid of some adhesions (she didn’t think the niche was relevant, annoyingly) but my spotting pattern is the same as before so I’m not convinced it’s done any good! Despite this I’m going to try another transfer in a few weeks, I’m also doing some immune treatment (I’ve had multiple chemicals - 6 in total now), and higher progesterone dose to try and clear up the fluid. The consultant doing the transfer is also going to aspirate any fluid, although he is sceptical about whether that is worthwhile!

Lucy040288 · 20/04/2026 19:49

@HPrior yes I’m relieved to finally know what’s wrong but very shocked at there being no myometrium where the niche is. My consultant said it would be risky doing it in the private sector but this other specialist has more of a team around him. I’ve arranged to see him privately. It apparently could be done on NHS but there would be a wait and I’ve waited long enough already so will pay whatever it costs.
I know the niche is your problem and hopefully the repair will have sorted it and it’s just taking a few months to settle down but just wondered if there might be some residual inflammation. At least it has seemed to help and you never know it might have smoothed it out enough to help with implantation. As majority of women have a niche but the severity varies. And a lot of women have no problems getting pregnant after a c section. We’re just very unfortunate.
fingers crossed you manage to conceive naturally and don’t need to undergo another procedure. To be honest I’m terrified of a laparoscopic resection and I wish I could have just had the hysteroscopic procedure.
i 100% agree with looking for a niche with secondary infertility. Even after my MRI results my consultant was saying we could do IVF as he has had women with very large niches succeed. But I know that after several chemical pregnancies, IVF won’t work for me. It won’t matter how amazing the embryo is, nothing will be able to fully implant into my defunct uterus and I’m not going to run the risk of uterine rupture! i’m tired of hearing a niche won’t affect fertility and that it’s my age and chromosomally abnormal embryos for the reason I’m not getting pregnant.
it’s so frustrating and draining having to be persistent and push for answers. In some ways I suppose I should be thankful that mine is so severe and I’m finally being taken seriously. But on the other hand I’m absolutely terrified of having the surgery. Plus there is a longer wait to TTC afterwards and I’m not getting any younger!
fingers crossed it works out for you and you conceive soon!

OP posts:
HPrior · 20/04/2026 14:00

@Lucy040288I’m so pleased for you that you have found out what is wrong! Really hope the laparoscopy repair goes well. Are you doing that on the NHS?

No, I never did the CD138 biopsy. I don’t see the point now as I believe I have identified the cause of my implantation failure. As you can see from my last message, I had the procedure done to smooth out the niche. I have been a bit disappointed so far with the results - there has been some improvement but I am still getting several days of post menstrual spotting. There is a useful study online that looks at recoveries after this procedure which does show that many people still get spotting for some time afterwards and there is even improvement up to 6 months. So I know it is too early to judge. But I am concerned - it’s hard not to think this is just another disappointment and my uterus can’t be fixed.

In terms of next steps, I can TTC naturally after I have my next period. However, I won’t get another embryo transfer unless I have had a real improvement in symptoms. If no improvement after 3x periods, I’ll look into further investigations. I have heard that some people have to have the procedure done twice before it works or I could try the laparoscopic repair.

And I echo your advice on trusting your instinct. You hear this so much and I never understood what people meant by it. Now I have experience, I can say that really what it means is don’t put too much trust in medical professionals - they don’t know everything and are really bad at telling you where their expertise is limited. They are often wrong and several can be wrong before you find one that is right. C section niches are a very new thing to be discovered and there is little research or consensus on them. They are very often missed on ultrasound. In my opinion, if you have secondary infertility and had a c section, they should be one of the first things considered as the cause.

Lucy040288 · 20/04/2026 07:33

@1SparklingWater1 have you had an MRI?
just to update this thread…my consultant did not feel on ultrasound I had a significant niche but requested mri on nhs. This was rejected. I paid for a private mri and I am so glad I did! I have just had the results. 6mm niche with 0mm myometrium covering the niche and only 2mm serosa with dense adhesions between this and my bladder. I need a laparoscopic resection which my consultant does not do so I am being referred to another specialist. On ultrasound it looked like my myometrium was thick. If I had been able to get pregnant I would have been at very high risk of uterine rupture. I have also had hysteroscopy and CD138 staining came back at 6 plasma cells per HPF. Above 5 is showing inflammation.
@HPrior have you had CD138 staining as this can also cause spotting? Do you have a follow up scan or hysteroscopy after 3 months to assess niche repair success?

anyone reading this thread, please please trust your instincts. I have known something has been wrong with my body since September 2023 and have been reluctant to do IVF as I just felt it wouldn’t work. Even though consultants have told me this would be my only way to conceive after 2 years of trying. I have had to push to finally find what has been wrong all along.

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