Infertility after c section

@ChaE05PS to find out whether you’ll need hysteroscopy or laparoscopy for the repair, you’ll need an MRI and possibly a hysteroscopy to look at the niche. But your consultant should advise as to what next steps are to investigate the niche before the necessary surgery is decided on.

@ChaE05paying for IVF because you have to wait for a repair makes no sense. If you only need a hysteroscopic resection it’s a day case - would cost a lot less than IVF especially as at 39 you are going to be recommended to do PGT-A testing which really adds to the IVF cost if you are lucky and get a lot of embryos. A laparoscopic repair would cost more than a hysteroscopic one I expect as it’s a more major operation but I’d be surprised if it was more than IVF. IVF is about 12k minimum in London now and at 39 people often have to do more than one round. Also each transfer is about 3k. Re surgeons in London who do c section niche repair try Mr Ertan Saridogan, Mahantesh Karoshi or Adrian Lower. There is also a Facebook group on niches where a lot of comments recommend surgeons so may be worth a look. Good luck!

If anyone can recommend any london based surgeons that would be great 🥰

@Lucy040288i know !! I was full expecting her to say sorry nothing can be done. Tbh, I really dont think i want to pay so much money for IVF at my age (39) have seen so many around me with poor outcomes. Its such alot of money. I think I would prefer to look into having it repaired privately. Im going to at the very least find someone in london and book in to have a consultation to get their specialist opinion on it and find out if I would need a hysteroscopy or laparoscopy x

So an update... I had a NHS follow up appointment yesterday following contact with them about my private scan which identified the niche.
The doctor was suprised it wasnt picked up on my hycosy a year ago. She looked back on the report, which all reported normal. She looked at the scan images herself...and there it was clear as day!!! She was very apologetic. Said this shouldn't have happened and should have been picked up. A whole year wasted!! She has referred me to the UCLH for a repair but said this will take a very long time and in the mean time to do IVF and freeze my eggs 😔😔 just don't know what to do now x

@HPriorjust saw this thread, sending huge congratulations, you give me hope 💛🌟. Hope your pregnancy is going well and sending you all the best wishes

@Lucy040288thanks for this! Very good to know. Yes I definitely want that checked for sure x

@HPriorthank you for that info ! My RMT measured 3.6mm so only just over.

Was your spotting very bad post period? I have realised since joining the c section scar defect group that mine really isnt so bad as quite alot of people! I have a normal bleed for saying 3/4 days and then I can have very light brown discharge when I wipe or in my knickers occasionally up until CD 8. At a max CD9. And then it completely stops. I ovulate about CD16. And I dont bleed again until my period. Sometimes I spot the day before. I think I really want to see if I have inflammation as a bare minimum. As I haven't managed to fall pregnant for 17 months now after 2 early losses when we first started to try for baby number 2. For the first time in 20 months I skipped trying this month as it has just gotten too much. The pressure of ttc. Have just ovulated and it actually feels like such a weight off my shoulders.
All the best for your pregnancy 🥰

@LucyI hope you are feeling better soon. Edited to
remove explanation of why medics recommend going straight to IVF and avoiding lap, as I see things have moved on since you began the thread.

Thank you, I am just over 11 weeks now. Had an NIPT this week and all clear so I was waiting for that before updating this thread. Yes, I was lucky to be able to have the more minor procedure. Hopefully yours will work as well though- have everything crossed for you. Do keep us updated! Xx

i didn’t have the inflammation test so will never know if that would have been positive but I highly suspect it would have been. Yes, since my RMT was 6mm I was a good candidate for the hysteroscopic resection where they shave the sides down. You need a minimum of RMT 3mm for this procedure. Interestingly, my consultant thinks the continued light spotting that I had after the surgery was because there was likely still some minor pocketing at the sides of the old niche which may have trapped a very small amount of blood which would have made my normal discharge not quite clear - but he said he likes to be conservative when doing the operation so as not to damage the uterus.

I understand it is difficult to get these things done on the NHS unless you have a major niche and I don’t think the NHS does the resection procedure I had, but I may be wrong. Mine was private but covered by insurance - even though most insurance policies exclude fertility related procedures, gynaecological issues can be dealt with if you have problematic symptoms - irregular bleeding, pain, etc. so it is worth a try if you have health insurance via work.

Hopefully this is the answer for you too!

Congratulations @HPrior!

I kept miscarrying/losing again after my CS-my second birth was an emergency CS; I'd never have chosen a CS because rightly or wrongly, that was one of the things that worried me. I had no problems after my natural birth, which my first kid was. I honestly don't know if this is linked, obviously lots of women have more kids after a CS, so maybe I was just unlucky. I suppose I'll never know, and the emergency CS was needed for my daughter to live, so I have to be grateful.

@HPriormassive congratulations to you!!! You must feel 🥹🥹🥹
Did they also test for inflammation during your hysteroscopy? Is this where they also shave the niche down? Really over the moon for you x

I have an appointment on the 29th with NHS fertility consultant following up on the provide SIS I had that found my niche. I emailed fertility clinic with my scans (I had not been discharged from them) and they want to see me. Not overly hopeful they will be able to do anything but atleast if they cant I can then look into private to sort this out xx

UPDATE for those who are following the thread. As a summary, I had 2+ years of secondary infertility which was accompanied by heavy periods and pre and post menstrual spotting. I was misdiagnosed with blocked tubes and had IVF off the back of that. Two failed euploid embryo transfers later I had a laparoscopy and hysteroscopy to look for other causes and found out my tubes were not actually blocked. My clinic could still not explain the spotting and advised I do a third transfer and add blood thinners to my medication. It was at this point I lost all faith with my IVF clinic and saw another specialist. He immediately suspected my symptoms were caused by c section niche. A further hysteroscopy and MRI later and he confirmed I had a niche 5mm by 5mm by 8mm with RMT 6mm. I had a hysteroscopic resection to repair it (very easy operation - day case with a few days of pain similar to bad period pains). Following this the spotting reduced substantially - no pre menstrual spotting and post menstrual spotting was very light and not black and tar like. However, it continued to ovulation so I assumed the procedure had not worked.

However, following an 8 week recovery period we were allowed to start TTC and I am very happy to report we conceived naturally the first month we tried. I couldn’t believe it! I am 39.

I hope this brings people who may suspect a c section niche hope that their fertility can be restored. Please keep pushing to have symptoms investigated - mine were repeatedly overlooked and I was told unequivocally that my niche was not causing my spotting or my infertility (it was noted after multiple scans by my IVF clinic but they said it was too small to cause any problems). They were wrong. Please also be wary of going to an IVF clinic to investigate infertility. They will push you into IVF because that is where they make their money. Go to a fertility specialist who does not do IVF. I am obviously extremely happy with the outcome but I am also very angry that I wasted years worth of savings doing IVF that was not needed.

Best of luck all xxx

@1SparklingWater1thank you for replying !! And its so so true what you say. When searching on the Internet we are only seeing the desperation in people. And we will literally try anything to find the reason. Can I ask your story?I had my 3d saline scan at crp with Miss Edge. She doesnt think this is reason I am not falling pregnant but i really think its worth me investigating. My friend had a hysteroscopy performed with the surgeon you mentioned from crp.- Dr Jan? Did you have a consultation with him then? I see you have spoken to a few, did you get a good feel from anyone in particular? Everything just costs so much 🫠🫠🫠

Hi everyone, trying to catch up a little here as there's been a good few messages.

@HPrior did your clinic ever discuss doing an ERA? Our IVF clinic is very against it (says there is no benefit) whilst both the niche surgeons suggested doing it, along with ALICE and EMMA, as they said that there is a 'signal of benefit' in people with recurrent implantation failure / losses. My issue is that I want to keep doing natural modified cycles (because medicated cycles are associated with greater fluid trapped in the niche), and ERA is even less beneficial in these cycles. Anyway thought I'd pick your brain in case you've discussed this with anyone.

@Lucy040288 thanks for sharing your full history, what a journey. It hits home when it's all written out like that doesn't it. My personal story is also horribly long. Right now we're deliberating on more testing or the surgery. Time just goes past, it's already been a couple of months since our last transfer and we're no further on with next steps. I did ask my consultants about the CD138 but it isn't something that any of them offer and I'm not sure I should introduce a new opinion in (we've now seen 10+ consultants and the conflicting advice is just too much now). I expect what we'll do is the EMMA ALICE alone, then attempt one more transfer, then move to surgery.

@ChaE05 welcome to the group! It's me who's with CRP. Honestly its incredibly difficult to advise on what to do. For a women over 38 or so, the vast majority of losses / infertility is due to age, which is why all these doctors dismiss the niche. Many many many women with niches, even symptomatic ones, have successful pregnancies. It seems like they don't from reading Reddit and Mumsnet and Facebook, but we do need to remember that these are women who are desperately seeking answers and it's such a stewed perspective. I wouldn't panic about your niche yet until you've exhausted all other testing first. I wish you all the luck!!

@Lucy040288😪 WHAT a journey. I can only imagine the stress and upset. Thank you for sharing and im so sorry its been such a long road trying to figure everything out. Im glad that im not the only one that has felt so sad by this diagnosis. I was crying for a couple of days too. Everyone I spoke to was saying atleast you know what could be stopping you falling pregnant now? As if I should feel happy? But I just felt devastated that it was another hurdle and the thought of a laparoscopy honestly scares the hell out of me. More money to spend that we dont have. Its not as simple as, "atleast you know"
Im about to ovulate and we have been doing the deed and all im thinking is..what's the point? Its not going to work. And all I can imagine is my body killing off all the sperm. Even if by some miracle I did fall pregnant there is that fear that it will end anyway with this niche. Its horrible isnt it.
Also worrying that the scan might not be showing the true picture. I think im going to go ahead and email some gynaecologist that have been suggested and go from there. I just dont have the time to waste.
Also from what im reading these are more common with 2nd or 3rd c sections and if you were in labour before. Mine was a planned one (well kind of, my boy had stopped growing and was small so he needed out either induction or c section. Silly me choosing the c section). So im quite suprised I have a big niche.