Bladder endo... anyone out there?

[SarahMow]

Morning all,

Anyone got endo inside their bladder? I’ve searched previous posts and not many get commented on so reaching out for a bit advice if anyone has any

Thanks xxx

[079me]

I do. I had most of it removed/burnt off but they could not remove all of it as they would have burnt through my bladder wall. What is it you want to know? X

[SarahMow in reply to 079me]

Hi thank you for replying.

What treatment did they put you on for it? How do they plan on removing from inside your bladder? I’ve read up on the internet that they could take part the bladder away so it’s put the frighteners on me a bit. Only had surgery on Thursday so don’t see the consultant for 4 weeks so got millions of questions

Thanks again for replying xxx

[079me in reply to SarahMow]

So i didn’t even know i had it initially, i was booked in for a hysteroscopy and laparoscopy and when they did them (together) they removed what was possible to by endometrial ablation i think it is called, how it was worded to me was that it was burnt off but not all of it as i mentioned earlier. Following surgery, I stayed on my pill that i was already on which is cerelle progesterone only. I would like to say i am 100% better but no, i still get bad spells where i am in alot of pain and if I get a bleed, it is horrific. It affects me badly. Every case is different though, i mean, i got to 34 without even knowing I had it and I don’t even know what stage it was at by then. Did they say what they did in your op?

[Nataliex in reply to SarahMow]

Hi, I had it growing through my bladder wall and had the op to remove the section of my bladder last May. It went well and although pretty unpleasant for a couple of weeks after, with catheters in, once they came out it was back to normal. My surgeon told me the bladder is very forgiving and flexible and will just stretch back to how it was before and she was right. So back to normal without the horrible pain. Just wanted to let you know that even if you do have to have the surgery once you're through it all is good. Best of luck with it. X

[SarahMow in reply to Nataliex]

This is what I’m worried of! I’m just guessing this is what’s going to happen. All I’ve been told is menopause for 6-12 months then I don’t know after that. Did you have to go through some treatment before surgery? How long were you off work for as well? Were you in hospital long? Sorry for all the questions xx

[Nataliex in reply to SarahMow]

I was first diagnosed with bladder endo 10 years ago and was given 6 months to fall pregnant or would need to have surgery to remove it. Luckily fell preg at exactly 6 months and the pregnancy and breast feeding stopped my periods and endo symptoms for 18 months. Then had a marina coil fitted for 5 years. Symptoms started coming back towards the end of the 5 years and got progressively worse until unbearable and I went for the surgery option as was really last hope of sorting the pain. I had MRI and cycstoscopy and internal scan before the op with a gynaecologist and urologist who did a joint operation using a robot at Cambridge University hospital. I was in hospital for one (although should have been two) night after and sent home with a normal catheter plus one coming through my tummy. They do two just incase one fails before your bladder has had time to heal. The catheters take a lot of looking after at home but OK once you get used to it. Also had to give myself daily injections in my stomach to stop blood clots for two weeks. Two weeks later I went back for catheters to be removed and after 6 weeks had the stent removed that was put in to protect the tube from my kidney to my bladder during the operation. 6 weeks in total off work although I was doing a bit of work from home after week 4. Hope that answers your questions without worrying you even more! Shout if I can help any more. If you do need it it's not as bad as it might sound. You just have to get through it and think of the relief of pain afterwards. I have no bladder symptoms at all now 🙂. Unfortunately still have adenomyosis but couldn't face hysterectomy at the same time so that's my next battle 😞. Hope you find the right answer for you. Xx

[WillowD]

Hi there, mine is inside my bladder as well and I’m waiting for an appointment to discuss surgery. All I really know is that they want to do a cystoscopy to see if ureters are involved as well....they then can remove the endo but not sure how! I read you have to have a catheter in after to allow the bladder to heal - I’m going to ask lots of questions at my appointment as doesn’t sound great!

Are you struggling with pain? I’m struggling with pain every day now especially when I go to the loo.....frustrating! Think I’m at the stage that I don’t care what they do as long as they can help with pain.

X

[EndoJaz]

Hi how was this diagnosed? I get pain when have a full bladder. Having lap soon but this wouldn’t show up if it were the inside. Sounds scary. X

[SarahMow in reply to EndoJaz]

Hii I had a laparoscopy and a cystoscopy. It might be worth mentioning it to your consultant xxx

[EndoJaz]

Thanks for replying. Was the cystoscopy done after the lap or before and what did it involve?

[SarahMow in reply to EndoJaz]

It was done the same time as the lap. It was just a camera which was inserted into the bladder. Only problem I’ve had is that I’m really burning down below after passing urine 4 days on x

[Daniellaj]

I had endo grow through the full thickness of my bladder wall. Initially it was just burnt away from the inside of my bladder so obviously it grew straight so i had an op in june to remove part of my bladder

[SarahMow in reply to Daniellaj]

Did you have catheters after surgery etc? Have you been okay since they removed part of your bowel?

[Daniellaj in reply to SarahMow]

At my first consultstion with the surgeon he said id need a catheter for around 10 days and i said thats really good cos i thought itd be longer than that, then on the day of my op he said itd need to stay in 2-3 weeks. He said you will come back in 2-3 weeks and we fill your bladder with a coloured dye while x raying your pelvic area at the same time to make sure its headled and isnt leaking, then we remove the catheter and you can go home but when i went for my appointment they filled my bladder up too much and it split back open a tiny bit so they gynae said you need to keep it in another 2 weeks. I had a melt down cos i was panicking incase i went back 2 weeks later and it still hadnt healed but the gynae said im quite confindent it will have healed next time cos that never usually happens and i think its beause we had to remove quite a big portion of youre bladder. Before the op i was peeing constantly so i was expecting to be peeing even more with them removing part of my bladder but its actually better than before the op x

[Faith103]

If you don’t mind me asking what are your symptoms of endo on the bladder. I struggle with my urine and I have endo. I’m having a camera put inside to check my urine next week xxxx

[SarahMow in reply to Faith103]

Don’t mind at all :). Mines mainly pain when bladders full. This was especially during the night, the pain would wake me up and I’d be screaming with it unable to move. Ended up in hospital twice because of it. I also feel like my bladder is never quite empty and also seem to get a bad back when the bladder is filling. Suppose I could live with and put up with the back pain etc but it’s the pain during the night that was tipping me over the edge! Hope you get the answers you want!!! xxx

[Faith103 in reply to SarahMow]

This sounds similar to mine. That’s why I’m having this camera in next week because my surgeon said I’m not emptying my bladder properly. When I go I feel like I’ve been but he’s saying it’s holding to much fluid. When I drink water I go to the toilet almost instantly and when I’m holding it I get horrendous pain. I went for an ultrasound last week and I emptied my bladder 4 times in half an hour because of the pain and the rest of the patients was fine. Sometimes I wake up in the morning and I haven’t had a wee for 8 hours and when I wee it’s so strong and hardly anything comes out. What have they suggested for yours just surgery xxxx I feel your pain it’s awful

[YellowMad]

Thankyou soo much for this post...I have been experiencing the same symptoms..i had endometriosis excision and a total hysterectomy with ovarian conservation in October...the recovery went ok however I've had 6 urine infections since then..cos of my history of stage 4 endo dr suspecting bladder endo....scheduled for a specialist urology appointment...I've been having sleepless nights because of the constant pressure and feeling of wee.. When I wee I get contractions all the way up my flanks near my kidneys ...

[LCI1]

How did you find out it was on/in the bladder?

[SarahMow in reply to LCI1]

Laparoscopy and cystoscopy

[EndoEffect]

Thank you for sharing! I had my first laparoscopy in October 2019 and they found three patches of endo but didn’t say it was on my bladder. Excised two patches and ablated one. Surgeon is an endo specialist and I had it done at an accredited endometriosis centre. 3 months on and I’m in more pain than I was before the surgery and am experiencing a lot of bladder issues. Same as what others have said on this post. Pain in back, pain when bladder is full, pain when urinating and needing to go to the toilet about 8 times a night. Also completely fatigued and exhausted. Still lots of pelvic pain and bloating. Went to the doctors last week to check if it was a water infection. Results came back clear. So I feel like it’s my endo. Going to get referred back to my gynae. I never had a follow up appointment and nobody spoke to me after surgery. I was just given brief surgery notes and sent home. Which I think is really poor. X