bowel and bladder endo

[keepfaith1982]

hello,

I had a pelvic scan with contrast dye and received my results back to say I had endo on my bowel wall and nodule on the bladder😣😥 i was very shocked to hear this. I had an MRI back on 2022 minus the contrast dye but this never came up,

I’ve had lap surgeries for tube removal and endo removal nothing was said about bowel/bladder.

the options are to leave it as thankfully not in pain or go for surgery to remove what they can.

Anyone had surgery for bowel or bladder endo? It sounds invasive or know how common bowel or bladder endo is?

I would like to hear ppls stories on either bladder or bowel endo if willing to share? Thank you

[Sabha1]

I'm so.sorry to hear that . Thankfully your not in pain. It's horrendous and I hope that it doesn't become painful in the future. I have it on my bowel, found during laparoscopy 11 years ago and I'm now due for full hysterectomy and possible bowel surgery. It's been a nightmare. I'd suggest you speak to your gynea about GnRH treatment for it instead of having it removed through surgery. Ofcourse there are risk during surgery so look up your options. Sorry I know it's not what you were enquiring about but sending you wishes that you find the best possible solution and treatment plan.

[keepfaith1982 in reply to Sabha1]

Thank you for your reply im really lost what to do dr. Worried in the future it will just get worse which it has in terms of spreading since finding out in 2018

[Starry1977]

Hi. I've had both which were found during lap in 2022. He removed the endo of the bladder wall which was causing me pain. ( Pain free on that area now). The bowel wasnt touched as the POD was obliterated and there were no bowel surgeons in the theatre. Luckily I'm not in alot of pain so that area has been left alone for now. He advised if it gets worse further surgery would mean hysterectomy as I also have ademenoysis and significant scarring.

[keepfaith1982 in reply to Starry1977]

Thank you for coming back. How did your surgery for bladder go? Was it straight forward? What throws me is i had lap surgery 2023 for tube removal never came up had it bowel/bladder . Was going through ivf so now I find this out i feel this my answer why never worked with having adeno at back of uterus wall to😥

[Starry1977 in reply to keepfaith1982]

It was straightforward. They originally did lap to remove a 4cm cyst from from ovary. I didn't know I had endometriosis. He removed the endo off bladder, cyst and unstuck my ovaries which were behind rectum. Like I say I've still got a 2 cm nodule on mesorectal fascia. Lots of scarring and a bit in my appendix. He said I was stage 4 with a frozen pelvis. A follow up MRI showed the adenomyosis. I was 42 when I was diagnosed. Luckily already had 1 son at 34 but was never able to get pregnant again.

[keepfaith1982 in reply to Starry1977]

Like you of you I have lots of scarring 😣 so i just dont know if to get some that removed and the nodule when on my bladder. Im not soon keen on touching the bowel. How did you know you had a frozen pelvis? X

[Starry1977 in reply to keepfaith1982]

The gynea said after the lap. It's in my surgery report. Only you can decide if surgeries worth. Id ask if it will increase fertility. If not then ask if it's worth it. Good luck

[dogs1111]

Hello, I have had endo patches on my bladder and my bowel, both caused pain and problems and were removed during surgery by diathermy I believe. It helped me but as I say I was in pain. Perhaps ask your GP about the pros and cons and what would be best in your circumstances as it really depends exactly where the patches and nodules are. Good luck x

[keepfaith1982 in reply to dogs1111]

Thank you how did you get on after having patches removed by the bowel? See im not in pain so am thankful for that x

[dogs1111]

Hi having the patches removed certainly helped my pain.

[Sj2479]

Hi KeepFaith

Sorry to hear about your endo, thankfully it is not cauing you pain at the moment

I can't speak for bowel but was told in my checkup that I had an extensive amount which was around my baldder, it was removed 2 years ago with surgery (I was 25 at the time).

Background-

My ovulation pain slowly became worse. I went into A&E twice with pain. First time they found a large cyst (7cm)on my ovary (causing pain with ovulation). Endo was not suggested at this time, nor did i suspect it, I really had very little knowledge of it. The pain was horrendous, I passed out for the first time in my life in the car on the way to hospital, and had no power in the legs to stand, my dad carried me to the car. The pain varied from month to month but I'm grateful for my mum she helped me breathe through the pain and let my squeeze her hand at night when the pain came. While waiting for 3 month checkup to monitor cyst (with waiting lists) 6 months later went to A&E with pain and being sick, they used the dye and suggested I had endo, (cyst was endometrioma). The cyst was at 9-10cm so they kept me in hospital for a few days and operated.

Relating to bladder-

I had pain with urination, but honestly thought I just needed drink more (I didn't know I had endo at the time). It was a sharp darting pain while urinating. They scraped my bladder to remove the endo. I drink 2L-ish of water everyday for an idea. I was never fantasticatic at holding on for the toilet but i can't hold on well now 20/30mins maybe depending on drinking amounts (I have not had children yet btw) .If I hold on which usually occurs at night while sleeping or as soon as I wake up, I wake up with a sharp pain on my lower left side, which quickly goes away once I go to the toilet. I am ok with dealing with pain, but it does make me get out of bed as soon as I wake up which isn't always a bad thing. Gynae dr said it could be the scar tissue stretching from the scraping of the bladder, but I'm thankful for getting the cyst removed and so it doesn't bother me, as long as I go to the toilet frequently.

I am so sorry for the long message 😅 Hopefully it gives you some more thoughts for fuel x