Need your advice! Post-excision bladder symptoms

Hello lovely ladies, I am writing this to seek your opinion on my bladder symptoms following excision surgery. Below is the summary:

- Excision surgery on June 10 with deep removal of endometriosis lesions (mostly superficial) from 24 places.

- Superficial endometriosis removed from bladder. And catheter used during surgery

- On July 19 severe bladder pain/spasm when finishing peeing. July 20 and 21 urinary urgency and relief when done. Pain subsided.

- Checked urine and found some blood (could be spotting blood though)

- Called my surgeon and told not to worry and asked to take antibiotics anyways

HOWEVER, I am super worried and I am really down and I do have bladder symptoms (not significant) before surgery and in fact the bladder part got much better after the surgery until a few days ago.

Just wondering if anyone has anything to share regarding bladder symptoms following an excision surgery and how long it takes you to get better.

Many thanks!

Kiki

[Hidden]

I want to ask- could this be IC? The nurse of the surgeon rejected it completely saying that since the surgeon checked very thoroughly and if he didn't note it, there is no chance of that. However, I am lost...

[Summer143 in reply to Hidden]

IC can only really be diagnosed by doing a cystoscopy with bladder distension (bladder stretch). I am sure if you had this done at the same time you would know about it, trust me, it's painful ( I've had 2). Hope this helps.

[Hidden in reply to Summer143]

Thank you so much! I will consider that procedure. I kinda feel a bit devastated by the possibility of having IC. Can I ask how are you getting on with it and how have you been managing it?

Thanks so much!

[Summer143]

The problem with IC is that it is a chronic condition. I am on 5 tablets a day to manage it, some for the bladder and some to help me sleep. It is also managed by monthly bladder installations - drug straight into the bladder via a catheter. Since I was diagnosed I find that its worse around a week before my period starts for a few days. To be honest if I was given the choice of getting shot of one of the things I currently have it would be at the top of my list. I have also been diagnosed with adenomysis, multiple fibroids, polyps as well as endometriosis (stage 2, but on everything including the bladder). I am told that I need a hysterectomy as well as removal of the endo which causes me pain and exhaustion most days. I did ask whether the IC symptoms would ease a little if I had the hysterectomy and endo removed but there are no guarantees, so I guess I will have to stay on meds and bladder installations for a long time.

You will probably find that a lot of time is wasted trying meds before you have the cystoscopy. I wasted the best part of year and many failed meds before I was diagnosed but am fortunate enough to be able to go private. I guess they want to try everything before putting you through a procedure. I found the constant need to go to the toilet was totally ruining my life and was relieved when something was found which at least most of the time can be managed. A lot depends on the gynae you see, your doctor will probably deny IC and as mine told me, I was far too young to have it and should be at least in my 70s. I was fortunate enough to be fast tracked due to other issues and managed to hit on a gynae who is also a a uro gynae and consults privately as well as NHS which enabled me to switch.

[Natalex]

I had surgery on the 4th of July on a number of areas including my bladder which prior had caused me a lot of pain- I still am having pain from my bladder. This is normal, you've had surgery to remove it I'm prosuming so I've been told it's like an open wound/graze over the bladder which as before will cause discomfort which can last for weeks/months until fully healed.

I keep getting the pressure feeling I was used to getting and the burning sensation- No infection present. So with the guidance from my consultant I'm taking this as healing.

I've had two cystoscopys- On the first I had a red patch on my bladder, then second after cutting out caffeine and acidic foods there was nothing all though I still suffered- I put this primarily down to endo now even though at the time they were happy to medicate me but as my MRI scan showed evidence of endometriosis I went down the gyne route instead which I'm so glad I did!

wishing you all the best x

[Hidden in reply to Natalex]

Natalex, thank you so much for your response. Can I follow up by asking what did you have cystoscopys for and what were your symptoms that prompt you to do so? You mentioned pain but did you also have frequency and urgency?

Wishing you all the best!

[Hidden in reply to Natalex]

Natalex, how are you? Do you still come onto this forum? Just want to know how is your bladder doing. Is it getting better? How about the pain and frequency?

Best,

[Natalex]

Of course yes I had uti symptoms without the uti. I would be up on the toilet most of the night, repeatedly going until I would end up bleeding on most occasions.

I bought my own urine test strips as I found that the doctors unless you have a fresh one there and then kept coming back inconclusive. I also found that every sample I did showed white blood cells but not nitrates- nitrates are what they look for to diagnosis a uti.

the first one was to look for a diagnosis which they didn't do, I was just discharged and told to rereffer. The second was to have another look ( a different consultant) and they also stretched my urethrea

[Hidden in reply to Natalex]

Thank you so much, that was such helpful information.

I saw that we are about the same age (i am 26) and glad to be able to talk to you. My endometriosis pain has subsided so much by this time (42 days from surgery) and my energy level is so high. Wish you a speedy recovery as well and I will not jump the gun and draw some hasty conclusions.

best,

[Natalex in reply to Hidden]

You're welcome!

Wishing you all the best!

[Hidden in reply to Natalex]

Natalex, how are you? Do you still come onto this forum? Just want to know how is your bladder doing. Is it getting better? How about the pain and frequency?

Best,