Temporary stoma bag and endometrioma removal

So I'm set to have a five hour excision surgery to remove my endo and save my kidney hopefully soon. I've been told I have a 50% chance of ending up with a temporary stoma afterwards. Does anyone have any experience of this? Also been diagnosed with an endometrioma for the first time which is going to be removed. I'm scared of the possibility of loosing my ovary does this depend on how big the endometrioma is? Both my ovaries are attached to my pelvic wall and I have a frozen pelvis. Any experiences of anything similar would be great really anxious just wanting date for the op now xxxx

15 Replies

I am due to have this surgery, with a simular diagnosis so just wanted to say good luck! My surgeon told me depending on the size of the endometrioma will depend on the type of surgery, i have one thats 'sub centimetre' so he will decide during surgery if to leave or remove! X

Aww good luck for your operation aswell. Do you have a date? Have you been given chance of temporary stoma aswell? How do you feel? Xxx

Yes i am booked in for july 27th, i am so nervous as its getting closer ive been waiting for nearly a year so cant wait for it to be over! The stoma is whats worrying me the most as were ttc and dont want it setting us back 4 months! X

Aww God the waiting part is awful isn't it! I know same here I don't want it to set us back with the ivf I'm really hoping it won't be needed xxxx

I have a rectovaginal nodule thats very low so my need of a stoma is a little higher :( are you going fornivf after surgery? We have been told its best but i really hoped the surgery would be our answer but i cant gamble it growing back they said :( x

I've got recto vaginal lesions he said our chance is 50/50 yes going to go as soon as we can I have really low egg reserve aswell. Before we found out about my kidney we had started a last cycle with my own eggs. It had to be cancelled part way through xxxx

Im so sorry to hear that! I hope your next cycle once the endo is removed will give you a better chance! I have been given the amh blood test form to have but as ive gone back on the pill until my surgery (due to the pain getting unbarable) im not sure if it will affect my result xx

I think mine is low because I've got endometriosis covering both my ovaries. I've been warned the excision surgery might decrease it further. Just got to wait and see? Which pill you on? I was prescribed zolodex while I wait for my surgery xxxx

Ahh this disease is so awful!! I have been told my left ovary is fixed to the left wall but my right is ok, but god knows what it looks like now it was months and months ago i was last scanned! I think because the nodule is 5cm and has gone through into my bowel lumen its causing the stage 4 disgnosis! I am on cerelle the progesterone only pill, inwas prescribed depaceptal but i was so worried about all the side affects so decided on the pill and do far its been ok xx

That's what confuses me I'm not sure at what rate it progresses?! I'm just basically covered all over with it. I had to really fight for my diagnosis though I think they would have quite happily carried on with the ivf blind. Luckily it was just in time as I would have lost my kidney if it had been any longer. Fingers crossed your right ovary isn't affected and your amh is good. I'm allways here if you need to chat sounds like we are quite similar. I'm not sure about zolodex I just got told it would stop it from progressing while I wait for my op xxx

I guess everyone is different, my surgeon said we dont know what wel find until we get in..... comforting words lol smothered or not smothered they still remove it! Make sure your surgeon uses excesion surgery too. Wishing you luck with your surgery and after 😘 keep in touch x

Stomas? Please define

During a colostomy, surgeons divert one end of the large intestine into a visible opening – known as a stoma – on the patient's abdomen. A small pouch, or colostomy bag, is then placed over the stoma to collect waste.

What does frozen pelvic mean

It basically just means everything I'd stick together inside my abdomen with adhesions. So 'frozen' in place xxx

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