C section scar defect

@Jfxxhi, was wondering if you had any update following your surgery? I’m also in the middle of my 6th chemical pregnancy, the last one being an ivf transfer using a euploid embryo. The transfer was done with fluid present in the niche, so I wonder if that was the issue. Can I also ask who did your surgery? Wishing you all the best.

I was diagnosed with one due to bleeding during second trimester of second pregnancy. It was actually how I found out I was pregnant as the defect had caused regular period type bleeding. They were briefly worried that the pregnancy may have been ectopic and embedded in the scar as this is more common with defects/pouches but can't remember what that is called. I had two large bleeds with massive clots (which prompted the pregnancy test at 13/14 weeks) and then nothing - didn't cause any other problems. I was already having to have a second c section (due to the size of the scar) but they said I would have had to have had one for the defect on the scar. The pregnancy was also already high risk due to insufficient cervix (had a stitch for that). My baby is now a happy little sausage, playing at my feet as we speak.x

@Deb87 sorry to hear. It’s hard, people seem to get told all different things, I think because it’s so rare a lot of the doctors don’t even have much knowledge on it. What surgery did you have? I had laparoscopic surgery, thankfully he repaired my niche when he discovered it in surgery. I am on a Facebook group for c section scar ectopics. And there are a lot of women on there that have gone on and had successful pregnancy’s with a niche after there ectopic. But it is very scary, even with a repair I was terrified to try again.

@candyflossxox
Exact same with me had a scar eptopic and they discovered the niech during the surgery but didn't repair it. I was told about the procedure thay can be done. I went to an app on sat to be told there's nothing that they can do for this. I'm getting told all different things all the time. I dont have time on my hands im 38 at end of the year. I'm waiting to go private and see whay they say. I dont understand why the nhs is so conflicting with their information.

I had my scar repaired through nhs. It is something that they do.
I had a scar ectopic and when they removed the pregnancy my scar was repaired at the same time. Had to wait a year after my surgery to try again. I am currently 24 weeks pregnant with a new pregnancy after my scar repair.

I would get another opinion if you can. I got pregnant with the niche (it took a lot longer than with my first baby) and then the pregnancy was marked as 'high risk for uterine rupture' due to the thinness of the uterus around the niche. I had to have a scheduled section no later than 38 weeks.

@toriistrying hi. I’m confused tbh. I paid to see a private gynaecologist and have a private scan. They’ve told me it’s no big deal 🤷‍♀️ shouldn’t stop me getting pregnant and isn’t dangerous if I do. Basically the opposite of what the nhs told me. I’m still not pregnant but then it took me a while to conceive my first so I don’t know if it is just my age and general fertility or whether I should have surgery

So sorry I forgot to give an update! Baby was born back in March. Pregnancy went really well and I had a scheduled section at 38 weeks due to the scar defect. It was thin around the niche so couldn't go beyond 38 weeks. I'm hoping it's now fixed so fingers crossed!

@vic2025hey. I was wondering how you’re getting on. I’ve also been diagnosed 11 months post partum. X

Hi all, I’ve just been diagnosed with a 1cm scar defect. I’m 38 so time isn’t on my side to try for a second baby and reading everyone’s posts is making me even more disappointed. I rang a few private clinics today just to get an idea on cost and 2 had never heard of it and 1 said they don’t treat them.
If anyone has had theirs treated where please did they get it done please? How long did it take to get treated? And has anyone on here had a successful pregnancy after having a fairly sizeable scar defect?! Thanks

@Catlover10 i cant believe they don't cover it when it was them that cause it in the first place. As usual womens health not taken seriously. I hope you manage to get the surgery.

@rosefarm thats shocking 52 + weeks!! I've only been waiting since jan since I got referred and all ready getting impatient.

That's scary they got your bladder aswell. Hopefully your all healed. Yeah we do sign things but as you say we don't expect to be left like this and getting no help with it. Hopefully you don't have much longer left to wait .

@Deb87 I'm waiting for an appointment with gynecology and have been told it's a 52+ week wait- just for an appointment! So I'll update you in a year.... What a joke?

Also, I'm going to ask for my report from surgery as they caught my bladder and I lost a lot of blood whilst they tried to rectify this. I think this led to me not being stitched back properly, so will take this to a solicitor if I really need to. I know we sign things before we go in, but we surely shouldn't be left with life long symptoms.

Unfortunately I was told the NHS doesn’t repair c section defects, but you can pay privately to have it done but it was around £6000 so I haven’t done it 😩

@RoseFarm Sorry to jump on your post. Just wanted to ask how your getting in with getting help from NHS? I got diagnosed with a scar defect after I had to have a d&c. (Pregananct attached to scar) I initially went for scans due to constant cramping and told nothing wrong with scans, must endometriosis. Iam no waiting to get an app with gynaecology.

@motheringautism I'm just so sorry that's the answers you were given. It's absolutely crazy that they just expect women to live with the symptoms - I doubt they'd let any man bleed constantly until menopause.

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.

@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.

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.

@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

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

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, 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.

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.

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

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!