Bladder endometriosis confused after laparoscopy! Can it grow inside and not out?! Feeling 😭

[Sineadneva85]

Hi was hoping for some advice.

I was on the depo injection for many years when I stopped to try and concieve I started having pains it was always thought to be water infections but after a laparoscopy I was told I had small sites of endo dotted around some of which found near my bladder cavity and pouch of Douglas so that made sense to me.

I have since managed to have two babies and have managed my endo best I could. I was however reluctant to go on any long term contraception as I wanted to leave the door open for more babies and all the contraception so far has given me side effects I wasn't enjoying. I was also trying to deal with the endo via diet and hollistic healing I am very determined and found a lot of my bladder pains (worse during ovulation) subsided and actually for many months lay dormant. I wanted to believe I could manage it without the xtra horrid hormones. Recently though I had a major major flare up and I felt like my kidneys weren't functioning I started getting flank pain swollen in my back and my bladder pains went off the scale I was scared and confused I had all the kidney tests at the Gp and was told they were fine. But I definitely wasn't fine. Couldn't drink coffee alcohol started feeling breathless quick seeing a lot and the more I stayed hydrated with water the worse it got throughout the day! After research I felt the endo might be blocking one of my drainage tubes as all my symptoms matched. My GP agreed as I had chosen not to use contraception over the last year and after seeing an endo consultant/specialist I have just had a laparoscopy yesterday.

I have come home feeling rather sad and feeling depressed. I haven't had a full written explanation but the laparoscopy was successful and the consultant found and cut away a small patch of endo on my left side however it was not explained to me if this was at all effecting the kidneys drainage tube and I was subsequently told I was the best case of endo he'd seen and he had only removed this one small patch. I felt a bit like I'd wasted everybody's time. Obviously I don't want to be riddled but the inflammation the pain the impact it's had on me I expected to have found more than a small patch!! The pain and my symptoms over the last three months have been unbearable it has taken over and my kids have been effected. But I was adamant it was the endo causing my bladder pain and it was subsequently getting worse and effecting the ureters!

I suppose what I'm confused about is that I had endo on my pouch of Douglas and bladder cavity before yet no mention of it now so it's gone great but I also wanted them to check inside my bladder coz I believe all my cystitis like symptoms suggest it was infiltrating my bladder! They haven't put a camera up inside my bladder at any point but surely the consultant would of seen endo from the outside too right??

Can endo grow inside the bladder but not be present outside? Can I just ask my GP to refer me for that even though the specialist hasn't said I need it?

Could a tiny patch of endo been swelling and effecting me however small?

Am I a bloody idiot for not taking the contraception?

all my family think I need to stop worrying now move on and take the pill or depo but the side effects aren't great and I really wanted to find a way of managing it natural if I could.

Any advice? Feeling very sad and like everybody things I'm mad!! xxx

[Hidden]

Yes a small patch can cause extreme pain esspecially if it's right on a nerve.

Without taking contraception is just going to continue coming back since there's nothing holding you back from cycling, which makes it grow and therefore spread.

[Samy]

Hi if you had endo in your bladder you should have been seen by a urologist as well as a consultant from a bsge centre. I had two surgeons as I had major surgery removing endo from my bladder and uretic reimplantation.

Before my surgery is was on the pill continuously and had two 6 months courses of zoladex. The endo still grew, until I was so ill, I couldn't go out if the house without worrying about being near a toilet. It was so dehabiltating I had to give up my job. it is very important that you see the right people are you under a bsge centre?. There is a list check that the hospital and the consultant is named on it. The other thing is get your discharge notes and find out exactly what they removed and from where.if you still have questions I would email the consultant. I hope you find some answers soon. I know how bad this Endo is and its crap xx take care

Sam xx

[Sineadneva85 in reply to Samy]

Thank you Sam for your reply. I was seen by an accredited centre. He was a nice specialist. But After the lap I felt emotional and sad like I knew it wasn't all sorted. The dr complained that my bowel was backed up and wasn't clearing well something I believe to be part of the endo problem as I am constipated on and off and I do bleed sometimes in my stool. However he didn't acknowledge it was anything to do with endo and after being told to take in more fibre I feel my bowels are actually worse than ever. The severe reaction I've had the last three months effecting my kidneys led me to believe it was pushing against my drainage tubes. The bladder systems stabbing cystitis and frequency in uriniation was also major but again I've never been offered a camera in my bladder or my bowel. From the consultants point of view most of the area looked clean what he found he removed but I'm totally of the opinion the bladder and now potent the bowel issue isn't being taken seriously.

I hate questioning the consultants I'm made to feel over emotional and paranoid and my husband and family are tired of my crying and need to fix it.

I have been reading that endo can bring about ulcerative colitis like symptoms and since upping my fibre like I was told it's set the problem off as before I'd been sticking to a very low carb low oestrogen diet and admittedly not eating very big meals at all.

I'm sat here thinking I should start the pill asap!! I have been putting this off in the hope my hubby would agree to another child.

I used to be in the depo and subsequently had no symptoms. Do you recommend any pill I always hated the side effects of micronor and cerezzette but like you say I gotta do something other than diet. x

[Samy]

Hi I am sorry you still feel that you aren't getting the right treatment I understand how upsetting it is for your family not to understand they think that because you have had an op you are fixed. My only advice I can offer is that you find another consultant. Maybe your gp can help you. Good luck.

Sam xx

[Sineadneva85]

Thanks Sam,

I feel like I want to see somebody else but Im living in Devon currently I don't know the best specialists for bladder/bowel endometriosis! I've gone round in circles about how to move on but knowing everything busts masks it I'm concerned for my situation in the future as I've already started having flank pain in my kidneys.

I wondered if just going back on the depo for a while would get me through the next year until I can track down the right consultant.

Head in spin. Feel like I'm losing my husband and I'm getting really low x