I was diagnosed last year at the age of 32( 20 years after onset of symptoms ). At this point I was diagnosed with stage 4 endo , with endometrioma and an obliterated pouch of Douglas and part of my bowel and ovary .The endometrioma was removed but no treatment or removal as I was told I would need to see a specialist and a colorectal surgeon .
My case has now gone to an MDT meeting and I believe I am going to soon be seen by the colorectal team as well as gynae , in the one year since surgery the endometrioma has also grown back . I have also been told I will need to have a colonoscopy and the results will again go back to MDT , which is worrying .
I’m really worried about having a colostomy bag as I know this is a risk due to the severity and rectal involvement.
has anyone else experienced severe endo in this area and received surgery without colostomy ?
People really don’t understand the literal meaning that endo isn’t just a bad period , it has the ability to destroy your entire body .
Siann x
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I am so sorry you are experiencing this. I had a very similar experience but was fortunate in that a colostomy bag was not needed. I woke up worrying from the surgery and was then told they were able to avoid that. I had a specialist that was leading the surgery. I did end up with a radical hysterectomy, sadly. But I had a few years before that surgery. I imagine getting specialists on board is the best way to ensure you are well looked after.
You are absolutely right. It is not just "a bad period".
it was the same for me - stage 4, PoD and endometriomas. I was also really worried about a stoma but they only needed to shave a bit of the outside of the bowel in the end.
The colonoscopy should give your surgeons a better idea of what needs to be done to the bowel so you should know more after that.
good morning, I have excision surgery on my bowel and pouch of douglas along with hysterectomy 5 weeks ago, I was told a colostomy bag was a risk but they would do the best to avoid, My surgery went well and recovery has been a-lot better than i expected.
Just be sure that you're being treated by an endometriosis specialist who practices excision and not a general obgyn. It's very important that both the gynae and colorectal surgeon are experienced in successfully excising endometriosis. If you're on Insta check out Dr Rebecca Mallick for some really great information on endo. Be fully informed and comfortable before making any decision about surgery.
thank you for the replies ladies . All I know is the lady leads the endometriosis surgery and they use robotic assisted surgery in MK hospital . I don’t know how I feel about it , I’ve been round in circles as another hospital who did the diagnostic surgery were unable to treat any of the endo and then discharged me which was awful . So after being given the crappy stage 4 diagnosis in POD and bowel , I had to start the process all over again in finding someone who has the expertise to treat this .
Even my GP is at a loss and doesn’t know who else to refer me to for treatment .
hey ducks. I’m in a similar situation. Had a lap a couple of weeks ago and my endo has progressed (my MRI was over 2 years old but had shown endo on POD attached to bowel but my specialist thought he would be able to excise)
I was gutted to be told in recovery that I needed further MRI and back to MDT for colorectal input for potential bowel resection and or stoma. It’s scary isn’t it and frustrating for further waiting. No endometriosis was removed at the lap.
I’m 42 and like you have been going back and forth to GP for over 20 years. After waiting for two years since diagnosis via MRI, and the year plus to be seen by gynae following referal from a GP who only referred me because of rectal bleeding, I am so sad and frustrated about further waiting. This has impacted my mental health more than anything else.
I have found it really helpful and reassuring that others live normal lives with stomas and so my worse case scenario (having a stoma) although scary and huge, still could be a worse I guess. I know they will do everything they can to avoid this during surgery.
An Instagram account I have found helpful is battlewithendo_ox
thank you for the reply , I also follow this lady and have seen her struggles and what she has gone through - she is an inspiration.
I guess we are lucky for it to get to MDT as the hospital how diagnosed me didn’t even do this , I was simply discharged and told surgery wasn’t the answer due to severity . I am waiting to hear on when I will go in for a colonoscopy appointment, after this it will again go back to MDT and I will be seen in bowel clinic .
Like yourself it has affected my mental health, it’s so frustrating and the lack of knowledge and care gets you down .
I'm 51 and in the same position as you. I'm in an endo clinic but they don't want to operate. I'm not in any pain you see and my chances to a stoma bag for life are quite high. I also have fibroids which are making me bleed a lot. Zoladex is calming it all down. It's a difficult decision to make. It sounds like you have all the right people and they're taking it seriously so good luck xxx
Hi Siann , I have exactly what you are describing and was only diagnosed in 2022 at the age of 47 .
I have stage 4 Endo and also have a blocked Douglas and has impacted my bowel . I have just had a MRI scan last week 2 years later as was being told that it’s ok as the average woman goes through Menopause at 51 so get on with it ! I have now an amazing consultant who has no I shouldn’t have to suffer for anymore years than I have already.
Waiting to hear when my surgery is so happy to keep in touch in case mine might come first . I am completely terrified re colostomy but I have been assured that it’s last resort and normally it’s doesn’t come to that .
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