Endo on the bladder

[jenni_sofia]

Hi guys; I was diagnosed with stage 2 Endometriosis last year and had a laparoscopy to remove it all; however since then it’s been growing back and the pain seems to be back with a vengeance. I’ve been having a few bladder problems, such as constant urine infections, pain going to the toilet, peeing, kidney pains. And they believe I may have endo growing on my bladder? They referred me to a gynaecologist again and was wondering what the process is like when it comes to endo growing on the bladder and treatment?

Thank you

[LH38]

Hi Jenni_sofia,

Sorry to hear you have been suffering with bladder problems. Can I ask who has referred you back to gynaecology?

I ask only because I have had endometriosis since 2002. I have had ongoing water infections and in 2008 I could not cope with the infections and I got referred by my GP to a urologist.

Since the referral I have had a camera into my bladder and scans of my kidneys etc,. Advised I have Bilateral Ureterocoele. They do not believe that this has any connection to my endometriosis. My gynaecologist has said to believe my endometriosis is only isolated to my uterus. I guess this can only be confirmed when I have a hysterectomy to be 100%? In relation to my infections etc,. I have to have regular scans to check my kidneys for damage and manage the infections as and when they occur.

I am not sure if asking to be referred to a urologist will also be wise to help alongside your gynaecology referral? Good luck and I hope you get this resolved.x

[jenni_sofia in reply to LH38]

Thank you; this helped a lot.

My GP was the one who referred me back to the gynaecologist, so I’ll mention being referred to a urologist as well.

[Bluebird23]

I have problems with frequency and emptying my bladder properly. Had a lap recently and it was found in various places including on the bladder. It was treated during the lap but my symptoms and pain are no different. I've not had any investigation to see if it is in my bladder which I think is very likely.

[StefaniaJW]

Having surgery with a non-specialist is way worse than not having surgery at all because you might end up with a poor surgery + surgery might cause futher adhesions.

My advice is to see an excision specialist (a really skilled one, PM me for names) and in the meantime try and treat it naturally/holistically with nutrition and supplements.

The less surgeries you get, the better.

[Purplewitch18]

Hi Jenni. Mine grew back after 7 months. Its worse than before and i get bowel issues and utis now too. I saw an endo specialist yesterday which i paid for, he said from all my symptoms and everything he is certain my endo is superficial, meaning it grows on top rather than deep seated. This is why it was burned out and not cut out. He said superficial endo always grows back in 7 to 9 months so there is no point in further surgery. Instead its better to have hormone or pain thearpy to treat it. Id recommend paying a couple of hundred just to see one and get all your questions answered. On the nhs it tool me 20 years to get a gp to listen, then one year from referral to gynae to get a lap done, then another 3 months for a follow up appointment. Private, i rang last friday and got an appointment tuesday! X