This is my first post. I was diagnosed in 2009 after a lump was seen in a scan after a miscarriage. Discovered deep endo at a lap (I'd had terrible period pains for years but GP never suggested it might be endo) most endo was removed but the surgeon left a large lump on my bladder because of the risk of damage to the bladder. They booked me in for open surgery to remove it but I fell pregnant just before so it was cancelled. Had a Merina coil fitted after I had my daughter and managed for 5/6 years before symptoms started coming back. Now MRI shows deep endo has grown through my bladder wall and muscle and spread elsewhere again too. Have been trying for a second child for 2 years since the Merina was removed but am now 44 so looking very unlikely. Consultant has said I need 1/3 of my bladder removed now and may need hysterectomy too and i could choose to go for hysterectomy at the same time. Consultant says they can do it with robotics technology through key hole. My gut feeling is not to have the hysterectomy but maybe I'm just being unrealistic. Also has anyone else had part of their bladder removed? Does it still function ok / the same afterwards? Will I need to pee every 5 mins?
Would really appreciate any advice / similar experiences you have.
Thank you!
Written by
Nataliex
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Firstly Im so sorry it infiltrated your bladder wall, I wasnt even aware it could do this. It can actually penetrate our organs, holy God Im devastated.
My story is really similar to yours. I was saw to have a cyst on being scanned at my miscarriage after care in the marernity unit.
Poor baby didnt have a chance sharing space with this unwanted guest. This was in 2010, no suggested follow up the cyst was barely mentioned by the nurse who if she did relay this back to the obstretrics Dr, they never bothered telling me it needed removed.
Two years I progressed with severe back pain and as usual my horrendous periods pain eorse than bleeding but both substantial.
Took a trip to a&e regarding sore bladder on awakening and pain to urinate. Cheeky basda@d there told me it sounded like an STI!
I was in a tracksuit no make up no ring on my finger and think I was completely stereotyped by him.
They musr have tested it plus my urine all was clear of any infection.
Two years later I got a date with gyneacologisy specialist ftom Spain I suspect, he saw an endometrioma full of old blood. Said it was right side cyst.
I got booked in for laparoscopy hysterscope and excision.
He said it was hidden in my organs and nasty (chocolate cyst) so it originated on opposite ovary it was so messy and misleading on scan.
Came though lap like a trooper, exercise commenced, lost 1.5stone at gym, period pain improved.
Symptoms returned probably kost likely to sedentary lifestyle as triple leg break in 2012 had me immobile well inti 2013, started gym again etc and symptoms improved again.
Had my son in 2014, my 2015 I was having the worst periods ever, increasingly worse each month.
By 2015 I waa scanned...boggy womb mentioned on ultrasound.
By 2017 I begged gyneacologist at 38 years with my only child for hysterectomy. He saw on MRI scan of 2017 I had Adenomyosis.
Got put on wait list in June 2017.
By January 2018 I was bedridden both periods bleeding clotting and pain. Stabbing cyclical pain, dihorrea at T.O.M with nausea, chronic fatigue, pain in abdomen, swelling, sore joints, reoccurring conjunctivitis, bladder weakness, pain in my coxics area shooting to the knee in one leg...I could go on...
Had to pay to go private for hysterectomy after beung told NHS here in northern Ireland on bed crisis, no Ops routinely being carried out, trauma and cancer taking all operative slots.
Wait approximated at 22 months, Id done 9.
On opening me up I was riddled with endometriosis practically frozen pelvice.
Bowel was the most concerning (as all other feminine organs were taken out anyway)
Pinned to pelvic cavity with adhesions.
Bowel was shaved of it, not resected like your bladder is due to be.
I dont know much other than you need whats in you out to the best of their scalpel abililities, you probably could try (if you have not) the hormone supression treatments like eg. Zoladex to kill off the remaining endometriosis, cut its estrogen supply.
This is prior to hysterectomy which st this point you do not know if you need it?
You will have a better idea after the 1st surgery as they can look at your state of affairs ie has endo infiltrated ovaries & tubes and is womb pinned to pelvic cavity etc.
How would you know ar thus point if its affecting more than your bladder?
What symptoms do you have?
Hysterectomy unfortunately allbeit a cure for Adenomyosis, its not a cure for Endometriosis.
Im 8 months post Op with symptoms returned and feel its back, probably at my left bowel again. Im in constant back pain with now a return of pain on sneezing, pain on coughing, sharp intermittent pain, more frequent urination, by bowel is very (almost too) regular with more gas than ever, going on short notice or just sitting to go pee 😒..
Im still "settling" undoubtedly post surgery but I know my body and know the pain Im experiencing feels the same as past endometriosis pain.
I have had little to no adtercare post hysterectomy (we cant pay more for a consultant) Ive no idea if my estrogen portion of my combined hrt patches have fed my endometriosis left over which was at a cellular level. It can grow on its own supply too so to speak. Maybe I shoukd have been on a complete supression hormone too like the Zoladex. I dunno.
Im waiting to be saw by the consultant again on NHS where it all started...Im pushing my nhs hysterectomy slot to an investigatory laparoscopy instead, hopefully they agree on same...
17 months on, still no date on that initial Op.
I hope you are in mainland Britain.
They must be able to cut your bladder down in size. Im sure you will really have to work on your pelvic floor again etc once you are well enough.
Could you get pre surgery advive from a women's physiotherapist specialist to see what recovery you would be looking at?
I also had C section, apparently the more scars we have ie the healing tisdues/inflamation, the more likelyhood of endometriosis attaching to scar tissue so each operation does have a bearing on rerowth...If you REALLY feel you are done with your feminine organs and to cut down on where this bas@ard can grow back onto, less risk of ovarian/ cervical cancer etc (these plus my problematic painful ovaries were what I took into considerstion)...then fully consider getting it all done at once.
I say this hoping you are near my age group and done with your family plans 😉 Im 39.
Hysterectomy is not to be taken lightly, I feel good on hrt though Im not sure anything can replenish those natural hormones we take away on having our ovaries removed. We also lose androgens kike testosterone.)
Our bodies are perfect in design appart from this infiltrating abhorent illness.
I was feeling perimenopausal anyway tbh.
I wouldn't consider hysterectomy yet if you are below 35yrs.
Recovering from it being an endometriosis sufferer has not been easy.
Thanks so much for sharing your similar story. Certainly seems we had a lot of the same experiences.
Sorry to hear about the level of care you've received it sounds disgraceful! I am in mainland Britain so hopefully I won't have to wait quite so long!
I did speak to my consultant about hormone suppression treatment. But he said it won't have any effect on the bladder problems so not an option at this stage. Main symptoms are consistent bladder pain, significant abdominal pain during period ( can't go to work that week) and pain down my left leg / joint / bone aches.
Really don't like the idea of hysterectomy although at 44 my chances of a second child are pretty much non existent so perhaps I should face reality for the longer term good. Just can't get my head around it.
Your reply has been really useful and has given me some food for thought which I really appreciate. Thanks for taking the time and all the best to you.
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Endo inside the bladder/ weakness
Removal or not of ovaries
Can endo return after removing both ovaries?
Endometriosis on the bladder, your symptoms? 
