Endo on my bladder and uterine tubes and recto vaginal nodule

[Johans11]

Hi ladies.

I have endometriosis on my bladder that has grown through the bladder wall and the nodule is very close to the trisome area where the tubes to the kidneys connect. I also have a large rectovaginal nodule.

Next Thursday I will be going for surgery and the urologist said that they will have to remove part of my bladder and re implant the tubes at another part of the bladder. There’s a danger that if they have to remove too much of the bladder it will be too small to function. After I have to have kidney stents for a while. In addition there is a worry that when they remove the recto vaginal nodule it is attached to the bowl. As the nodule has grown fully through the vaginal wall there is also danger of a vaginal fistula

I’ve been told by the urologist that from my scans it’s unlikely they can do this by keyhole surgery and it may be a large up and down incision. I was wondering exactly what this means and if any of you ladies have had these procedures before?

All the best jo

[PaoPetite]

I am so sorry to hear that you have such complication due to endo! It is a horrible outcome for the looks of it... I have most of the things that you have mentioned apart from the vaginal fistula... I wonder if that’s the reason why you won’t have a lap? Just wanted to reply to your message so you know you are not alone! And many many women go through similar situation... how is your pain? Mine is so extreme that I take days in bed without moving... you have mentioned about the rectovaginal nodule I have exactly the same problem in terms of pain how bad is it for you? Even my stomach swolens up as if I was pregnant 🤰... I am waiting for my surgery and will be a join one the gyne and the colorectal surgeon will be performing the lap, part of my bowel will be removed due to the extend of the endometrial nodule and although my endometriosis is complex and severe they will still perform a laparoscopy... I hope someone else has the exact answer for your question. Big hugs 🤗

[Johans11 in reply to PaoPetite]

Hi PaoPetite!

Thanks for your reply. The fistula is a risk of the surgery so when they remove the rectovaginal nodule they said a fistula can occur. I think this is rare though so hopefully that won’t happen. My endo has grown completely through the full thickness of the vagina wall which sounds scary though.

Ah I’m so sorry you have to deal with this also. It sounds like you are in a lot of pain. At the moment my pain is not too bad. It comes and goes but I do get these horrible stabbing pains up through where the pubic bone is that are so painful they make you double over. Luckily this is only every few weeks or so. I’m hoping they won’t have to do a full restriction of the bowl but we will see. I hope also that they can remove yours by just shaving it off and without the full restriction. I think the plan for open surgery is due to the re implanting of the tubes from the kidneys. Maybe I will be presently surprised and when I wake up it will all have been with key hole. I think the scary part is not knowing what’s going to happen and so the worst outcomes go around in my head. I’m also getting a lot of pain in my back where my righty kidney is. I’ve been told you can loose kidney function if the module blocks the tubes to the kidneys and mine is very close to this.

Have you tried the marina coil? I have that and it is really helping. I hope your surgery goes well and you have a speedy recovery. It’s comforting to know we are not alone! 💪🏼 xx

[Johans11 in reply to PaoPetite]

I also know what you mean I get super bloating and it looks like I’m pregnant too. I now own lots of comfy sweat pants

[PaoPetite in reply to Johans11]

Me too! Can’t wear jeans no more! My wardrobe has changed completely from stilettos 👠 to comfy sport shoes 👟 and my size isn’t 6 anymore and I am now size 8/10! But that’s part of dealing with endo and getting used to the fact hat I won’t be or fell the same again x