Endo on bladder vs bladder tumour

Hi, I've just registered. First time on a community forum!

My story is I was diagnosed with endo in 2002 after having laparoscopy to remove my appendix, which was thought to be the cause of the pain. Was on various pills after that and all was well.

Had a baby in 2012, traumatic vaginal birth! Periods after birth started to get progressively painful with bladder pain (urgency, frequency, pelvic pain) for up to a week after periods. Was put on a non stop pill for 18months to stop it all.

Stopped all pills January 2016 to prepare for second baby. Periods heavier and heavier, bladder pain and discomfort getting insane.

Since January 2017, blood in urine after periods just before ovulation to go with bladder pain:

1st transvaginal ultrasound suggested 0.8cm endometrial polyp.

2nd confirmatory transvaginal ultrasound showed nothing.

3rd transvaginal ultrasound showed clean uterus but mass on bladder.

It is now June and I have just had my urgent 2-week referral appointment during which I got a very painful and uncomfortable cystoscopy. The urologist said it doesn't look like a solid bladder tumour and is suggesting endometriosis on bladder, pending CT scan and scrapping before diagnostic analysis.

Does this sound familiar to any of you?

I know endo is not unusual but endo on bladder is (as is bladder cancer, or any type of bladder tumour for a 37-yo woman!)

As a note, he also diagnosed me on the spot with very narrow urethra, which I will also need to get 'fixed' by dilation.

Thank you for reading. I don't really know who to talk to about it as most ppl have no idea about any of these issues and can't get into any constructive discussions with them (hubby included) 🙄

I'm worried about long-term consequences of bladder pain 😩

Have a nice day 🙏🏻

9 Replies

  • I have endometriosis on my bladder and struggle with frequency and urgency to use the toilet. During the day I'll go hourly. I do drink quite a bit of water though because I don't like feeling dehydrated. What are your symptoms? Xxx

  • Thanks for taking the time to read my story.

    My bladder symptoms are frequency, urgency, bladder and pelvic pain when passing urine, and a bit of blood; these symptoms only appear 3 days after the end of my periods and always end before ovulation!

  • When will you be having your op? Xxx

  • Well, the urologist has just detected a mass on the bladder via cystoscopy, he said I need to go through a CT scan and other appointments before having a scrapping booked in! He was talking about up to 6 weeks before the first of those appointments so I'm guessing if the diagnosis is indeed endo (rather than tumour) as he is suspecting, we are talking monthS!!

    Right now, I'm just so sore from the cystoscopy, which is not normally supposed to be painful, I can't imagine having anything else done to my bladder! (My pain threshold is very good, like all of you, we've had years of experience with pain - e.g I even had an all non-med natural birth, I thought my periods were more painful than delivering my son!).

    Thanks for taking the time to reply

  • Hi Janine, my op to remove the mass inside my bladder, which the urologist said looked like endo, is in 2weeks 22june! I'm stressing about it because what are the chances a mass inside my bladder is endo? This waiting game is atrocious, i feel like I'm having an out of body experience and talking about someone else!!

  • What about you Janine? Did you have an operation to remove the endo? Are you suffering from these bladder symptoms every day or is it cycle-related? How do you deal with frequency? For me, it drives me nuts having to plan my journeys around toilet spots at stations, and it certainly drives my partner nuts, and of course it makes my friends laugh that I am nuts! 😩

  • I've had two laparoscopy surgeries and I'll be having a hysterectomy in the autumn. None of the treatments have kept my endo at bay and the bleeding and pain is getting me down now. Although hysterectomy isn't a cure I'm hoping it'll relieve the worst of my symptoms, especially as I have adenomyosis too. I really struggle with the bladder symptoms, I feel a constant pressing down on my bladder and I'm at the toilet every hour during the day (or more) and up often at night. Endo is a nuisance, to put it politely! Xxx

  • Janine, thank you for sharing your story. I'm sorry you have to go through so much pain. Hopefully the hysterectomy will help with a lot of your symptoms.

    What treatment did you get for your endo? Apart from contraceptive/hormonal treatment, I've never been told there was something else!!

  • I've had excision, progesterone treatment, Mirena and Prostap. Excision always relieves my symptoms temporarily for about 10 months or so before they return. Prostap has been very effective for me xxx

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