C section scar defect

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Anyone been diagnosed with one of these? I got a diagnosis today and am a bit gutted. I have a finite number of embryos left (IVF) and I don’t want to waste them by transferring them into my defunct uterus. But the surgery looks expensive and brings no guarantees it would seem.

no. But really interested. Would you tell me more? I had a c section 3 years ago now and I had a second trimester miscarriage in Narch. I have always wondered if my scar could have had something to do with it.

Really sorry to hear about your loss 💐

So it’s when the scar heals incorrectly and a little gap forms in it (it’s known as a niche or isthmocele or c-section scar defect). Every month mucous/ blood gets lodged in the niche and so not expel properly and the fluid can be toxic to embryos and sperm.

Some studies show that it leads to a higher miscarriage rate (although I think these relate to first trimester losses). I think niches are more likely to form after long labours/ cervical dilation over 5cm/ higher number of previous c-sections.

That’s really interesting, I had never heard of that. Do you mind me asking what your symptoms were and how you were diagnosed?

So I didn’t have any symptoms - some people do and some people don’t (I checked because I need to do IVF and am preparing for a transfer).

Most common symptoms are continuous spotting after your period has ended (frequently dark brown or red). If the spotting happens for 2 days or more, with the period being at least 7 days, this counts as a niche symptom. Others get mid cycle spotting around ovulation, pain during sex, general pelvic pain, painful periods.

You can check with a trans Vaginal ultrasound (I had a 3D one for better accuracy). Or a saline scan (SIS or SHG) - this is supposed to be the gold standard of detection but if the niche is large enough to be causing infertility or other problems it should be detectable on a standard scan anyway.

Niches are quite common (prevalence ranges from 19-70%). Only some cause issues (mainly the deeper ones, but no one really knows exactly because this is a fairly recently discovered phenomenon).

HTH and good luck

Oh and also, they can be fixed - either by laparoscopy or hysterescopy (sp?) - the former is usually done if future fertility is desired

Hi, I’ve been diagnosed with a niche and am now struggling to conceive again. Trying to decide whether to do the repair!

Me too - still! Did they say how big yours was? I think that makes a difference, but there is not a huge amount of knowledge out there!

Sorry I forgot my old login and had to make a new account! Yes mine is 3mm wide and still struggling to conceive. I've got in contact with a surgeon to do the operation. How's it going for you? X

Hi @AVS1105 have you had your surgery? I’m due to have mine after 6 chemical pregnancies. The surgeon is not overly convinced that it will help and she said the research has been focused on women who don’t get to the implantation stage. I’m desperate for it to work.

Hi @Jfxx nope not yet - it's scheduled for august. I'll let you know how it goes! I really hope it works for you. If not I read something around taking a certain drug to reduce fluid in the uterus. Not sure if that would help but may be worth looking into xx

Thank you @AVS1105 and best of luck for your surgery! Not long to wait now xx

Hey - just wanted to update on this thread as there seems to be so little info for people in our situation! I am currently 5 weeks and 1 day pregnant, have been having lots of spotting and saw a consultant today for a scan. They said they don't think the spotting is related to the scar defect which is positive. Will let all of you know how it goes but right now I'm pregnant, without having the defect fixed, and fingers crossed things go well!

@AVS1105 that’s so thoughtful to update! I hope your pregnancy is still happy and healthy ❤️ please keep us posted! I’m 8 weeks post op, it didn’t happen last month but hopefully this month xx

@Jfxx got everything crossed for you! Everything is still progressing well - saw a heartbeat this week ❤️ honestly though it's been hard, spotting turned into daily bright red bleeding and nobody I've seen at hospital can tell me if it's related to the scar defect. I posted a new thread on here for people pregnant with this issue but have had no responses 😔 taking it day by day but trying to be positive x

How are you getting on now @AVS1105 ?

Hey @Catlover10 I'm now 16 weeks 😊 pregnancy is classed as high risk because of the niche, however none of the consultants seem particularly well versed in dealing with it.

Re the bleeding - I had bright red heavy bleeding daily for almost 5 weeks in the first trimester. A reason for the bleed was never found but baby is fine and everything js progressing well!

Really pleased to hear that! Please update the thread when your baby is born to give others hope too 🥰

Hello.
I have just had my repair surgery 2 weeks ago.
I was told had to wait 1 year til can try as needs to repair properly.
hope all going well.

Hi, just wondering how everything is going?
ive just been diagnosed with the same “7.5 mm” after having to pay private to have the scan to confirm this and have now been referred for hysterectomy. I’m wondering if you have anymore information on this.

Hi all, sorry to jump on this thread so long after - I really hope everything has worked out for you all?

@motheringautism I'm interested in your comment. I have a Niche and ended up being admitted to hospital two months ago as the fluid became infected and I was really ill with it. After the IV antibiotics did their job - they just sent me home but I've been asked to be referred back as I'm still having symptoms (although not quite serious enough to warrant a hosp stay again!). What is the outcome for you?

Hi,
I have had 3 vaginal births (one stillbirth) followed by 2 c sections. I’m TTC number 6 now which will be c section number 3 and 5th livebirth, although going to try for a VBAC2C. I have a niche which was diagnosed because of constant pelvic pain. I was diagnosed after my first c section. I had my first c section in September 2020 and then I got pregnant again in December 2022, so just after 2 years later. It wasn’t a planned pregnancy, we were using condoms. Had a successful pregnancy though and now TTC number 3 on 4th month TTC (although haven’t managed to have sex on my fertile days until this month as husband is in the marines and deployed) so not really trying properly. Hope that gives you some hope

@Simi2728
Thank you so much for replying! I'm really glad you had good outcomes. I'm not actually wanting to have another pregnancy, I suppose I was reaching out more to see if anyone had successfully had their niche treated on the NHS? I'm awaiting an appointment at the moment

Unfortunately, I was told there is no repair on the NHS. You only can go privately. I saw the gynaecologist they did their assessment, etc and then discharged me back to my local care.

I was advised if I wanted anything done or further investigations I would have to pay £1000 for a private clinic, that does not include surgery to fix it that is literally just for extra scans.

@motheringautism
No way, I'm so sorry that the NHS haven't supported you , I feel like women's health is seriously undervalued and you should not have to go private - especially when the problem has likely been caused by them in the c section!

Do you have symptoms that they're just not bothered about? I have constant bleeding between cycles and pain that's constant too... Not to mention the infection I got, which was pretty scary actually.

I have spotting after my period that lasts about 10 days which is a brownish colour, bleeding before my period, horrendous pain around my scar area, and infertility. When I went to the private fertility clinic the first time they actually did a 3-D ultrasound and they showed methe defect. It also had scar tissue sort of floating around which was attached to where the defected C-section is. I was then given paperwork to ask my GP to refer me to gynaecologist the gynaecologist saw me once and then just discharged me back to my local GP when I contacted my GP again they said that although I do have symptoms and it's affecting my day day life because it isn't something that is on the NHS they physically can't help me, my main concern was infertility but again because I've had a baby, they won't help. So I'm kinda stuck here catch 24.