Stage 4 endo adhesions re-growth

[Ginger24]

Hi I was just wondering if anyone has experienced regrowth of their adhesions following excision?

I had stage 4 endo with adhesions around my bladder attaching it to my womb and then around my womb attaching it to my abdominal wall. I had most of this removed in a 5 hour lap 2 years ago except some behind my womb that couldn’t be reached. I’ve since had a baby by c section in September this year and the surgeon performing my c section removed the last of the endo tissue behind my womb as she had to take my womb out and remove the endo because it was not contracting back down once my baby had been born.

In the last week or so I’ve started to experience the exact same pain I had with my endo and I’m now worried it’s started to grow back. Can it grow back this quickly? I’ve not been in any pain since my lap, only since my c section but I know that feeling of this pain to presume it’s endo. I also know c sections risk endo forming around scar tissue so maybe that’s caused it to grow quickly?

Any advice or experiences would be appreciated! 💕

[Lindle]

I assume you were operated on at a specialist endo centre 2 years - why couldn't they remove the endo behind your uterus then?

Deep endo such as that must only be excised by advanced surgeons at an endo centre. The gynaecologist who had to remove some tissue at your c section will have only taken what was visible and necessary to remove and won't have had the advanced expertise to go any deeper - deep endo there can be several centimetres beneath what can be seen. So it is unlikely to have grown back as such but will still be there to some extent.

You need to referred back to the endo centre. The first step would be scans to see exactly what is there.

[Ginger24 in reply to Lindle]

Yes I’m still under the care of a private endo specialist. It was to dangerous to remove completely initially due to it being so close an around some of the tubes around my bladder. I do think, as you say, the surgeon who carried out my c section only removed what she needed to in order to allow the uterus to contract. I’ll have to get an appointment with my consultant and request an MRI and hopefully I can get on top of it. But the thought of another surgery at this point does not sound great but needs must

[Lindle in reply to Ginger24]

Was it definitely an advanced excision surgeon working as part of a multidisciplinary team in a specialist centre setting - so two lap surgeons working together plus colorectal and urology surgeons? If it is endo of the ureters that was left this can lead to kidney failure.

[Thecrazypugglelady]

Yes adhesions can grow as soon as your skin repairs I know this too well! Maybe write a plan and discuss options with a gp so you get to see a specialist if it is endo and maybe if its just surgical adhesions they may recommend something different. You know your body i had endo removed and placed on zoladex last December...had an op friday just gone I was riddled! Don't want to scare but just thought i would share how to fight for what you know your not mad 😊

[Ginger24 in reply to Thecrazypugglelady]

Oh I know that pain all to well! I have a specialist consultant who I’m still under the care of for my endo so I think I’m going to have to request an appointment with him to discuss the current situation, I just don’t want to be delayed and it put down to still recovering from my c section. I was on zoladex for 6 months before my laparoscopy but it stopped working for me so I hope I don’t have to go down the route of trying that again!

[Thecrazypugglelady in reply to Ginger24]

Yes that sounds the best option! i wish you all the best🤗

[Jac915]

Yes for me . I had 2 chocolate cysts regrow as seen on ultrasound and pain is back a year after lap

Then The cyst and pain disappeared (on ultrasound) when I was pregnant and during breastfeeding for both my two kids. The pain returned a year after stopping breastfeeding and I am now on pill to control the period flow and pain