Cystoscopy /urethral dilation - again?

[stirling]

Also in general health..

Hello,

Really hope someone can help/share experience. Two years ago I had a cystoscopy with a urethral dilation which was excruciatingly painful for several months after, mostly because I had an e coli infection that became Antibiotic resistant.

My diagnosis was intersticial cystitis. The hospital have since wanted me to stay on low dose ab.. But I don't want to.
My symptoms are serious flare ups / post sex (which I rarely have sex as a result) - chronic pain feeling like infection, constantly needing a toilet, several trips to the loo in the night.

I've tried so many things diet wise. But I have a Prolapse too, cystocele and a rectocele. Plus menopause symptoms like dryness, heavy bleeding every two weeks.

I'm exhausted and depressed. The urologist wants to re do the urethral stretch and bladder hydrodistention? because apparently my bladder lining is cracked and it'll only get worse.
He said that my urethra was extremely narrow like a childs.

I'm scared I'll get another e coli infection. I'm resistent to most antibiotics.

I also remember reading comments that the procedure was "barbaric" and could lead to permanent nerve damage.
I had horrendous pain after my stretch for three months but wasn't sure if this was the e coli... But it felt like my whole pelvis was on fire. I don't know what to do! But leaving it alone is also hard, I'm not emptying my bladder properly.

Any advice?

Thank you

Sympathies. I had this condition and in fact still do but manage it as much as possible with diet.
Are you following the IC Diet? It's online.

I was offered the procedure you had and refused. I was so sore the whole idea seemed mad.

I use vaginal estrogen which helps and also full HRT.
I think you should ask for vaginal estrogen to help your dryness and it may well help your bladder too.

This help rebuild the bladder lining as does HRT.

How old are you?

Have you seen the online support group? Masses of info on it.

bladderhealthuk.org/bladder-health-uk

Worth reading and asking on their forums.

ps you need to see a gynae/ menopause specialist to get your hormones sorted and sounds as if you might be helped by HRT. Bleeding every 2 weeks will be making you anaemic.

Have you seen a consultant about your prolapse and discussed surgery at all?

Thanks so much foreverreading, I'm 47 nearly 48. Yes using the estrogen cream but it helps only a bit... Probably need to use it more. Is constipation a side effect of ovestin? (the estrogen cream)
Funny enough, I've emailed a private menopause specialist earlier this week...

I am scared of using hrt though, cancer etc....

Try using Ovestin again for 14 days in a row then 3-4 x a week. (I've used it for 12 years.)

No it won't cause constipation.

HRT is very safe. You are also young and the research shows that using HRT for a few years before age 51 (menopause average age in UK) has almost zero risk.

I’m only 30 and by 28 had been through this op x3. When they went in the last time they realised the amount of scar tissue they were creating was actually outweighing the benefits. Since then I catheterise once a week myself. It’s not pleasant but not horrendous and means no urine held to host infections. I’ve gone from serious UTIs every 3-4 weeks (every single time I had sex!) to only once in the last 8 months.
However I absolutely can’t emphasise enough the psychological impact. I never want sex. Ever. My husband is amazing and I do make an effort but for me the 5 years of excruciating pain has absolutely ruined any positive relationship I had with sex. Please don’t give up. Look for a cure!

I’m so sorry you’re going through this. I suffered from repeat UTIs for years and was eventually diagnosed with painful bladder syndrome or interstitial cystitis. In the end I was in constant pain. I am now cured. Please see this website www.chronicutiinfo.com/ and please do not have another cystoscopy. My story is also on the website under “Sarah”. I was treated by Professor Malone Lee privately. However there is an NHS clinic which treats with his protocol.

Hi again everyone, thank you a million for your thoughtful and unbelievably helpful replies. Midlife - my gut feeling is to avoid the cystoscopy like the plague, going to check your link in a mo, yes I saw the Prof but many moons ago when he worked at Whittington on the NHS!
ForeverR- I do like the sound of the ovestin protocol, I'll try it again. Remember reading about it (every day for two weeks etc) and it helped but then I was constipated and wondered if there was a link... Reassuring what you say about hrt.

Jack your experience and scar tissue is exactly what I want to avoid. Thank you for sharing that.
Repeat cystoscopy doesn't make sense. My bladder wall is supposedly cracked "so we're going to distend it"????

@Stirling There is a post on the menopause forum here from a woman who had terrible vaginal atrophy. It's under the vaginal atrophy thread. Hers was so bad her urethra almost healed over and she couldn't wee. She's used vaginal creams etc to right it.

I think I had damage to my bladder from an infection (decades ago) and maybe too many ABs at the time, but there was also perhaps some allergy thing going on afterwards (foods etc) then peri meno. Using Ovestin and full HRT has helped but it did take a good 3-6 months of regular use of Ovestin.
Give it a whirl.

Foreverreading that's such good advice. I'm ready to try anything! Will look at the VA thread now.
A big thank you

@Stirling

it's under the 'Finally got estriol..' thread.

This is the post...

Hi I am new to this and a lot older than you ladies I am sure but hopefully I can learn from someone. I may be able to offer advice too. I am 60 started menopause at 40 and my periods stopped at 50. I have never wanted to take HRT and thought I would get through menopause unscathed but unfortunately my body said no. I noticed I was very dry and a bit itchy too doc gave me a moisture cream and it helped and I stopped after a while. Then about 2 years ago I noticed that my actual vagina felt like it was closing. I haven't had sex in a good few years due to hubby having a few issues. I went to doc and she said yes it was closing but if I need a pap smear we will deal with then. I was nervous about what they would need to do to open my up so just left it at that. Then about 2 months ago all of a sudden I noticed I couldn't pass urine as I should. I was trickling out. Another doc saw me and was shocked she said I had a opening the size of a pin head to pass my urine through and that I would need surgery. It turned out that I was taken in for emergency op as I got to a point where I has pain in kidney and could hardly get anything out. So they didnt know what to expect , whether it was sealed deep inside or just the outside skin. Thank God it was just outside skin to the cut it open, no stitches just to heal on it's own. I am sharing this because it was due to having no oestrogen at all. I was so dry that the skin just sealed itself closed and because not sexually active nothing was keeping it open . So ladies dont hesitate to use the oestrogen creams . It is worth it trust me. I wish I had been given it right in the beginning so now my question to you all is please have you had any side effects . I feel a little itchy and have a bit of see through discharge. Should I expect this ? I am using Vagifem vaginal tablets and the Ovestin cream. I also just dont feel well. My cut is not healing well so going back to doc for that but just wanted to ask you ladies . Sorry such long post

Oh gosh. Foreverreading that's so good of you to cut and paste the relevant story as I got as far as page 2 then had to rush off to work.
I'm stunned by her experience. I have exactly that feeling of my vagina closing up!
Can't thank you enough for inspiring me to use it properly as opposed to half heartedly every now and again...

Also I've booked an appointment to see a urogynaecologist who specialises in pelvic floor disfunction and menopause etc. Next Thurs fingers crossed 🤞