Hey there, my name is Natalie and I have suffered with endo for about the past 6 years if not longer! I have a severely aggressive form(docs words not mine!) of endo! This year I had another laparoscopy to cut away big amounts of endo after a 2 year break, pain free!!! Since that laparoscopy everything has fallen to pieces.
On my last lap my consultant also performed a cystoscopy (camera into the bladder) to see if any endo lay on the bladder as I have always complained of pain when urinating and pain in lower back! The consultant said he found a condition called interstitial cystitis. I was then refered to a urology team. The urologist carried out their own cystoscopy and told me that I did not have IC but had an inflamed bladder which they cannot treat!! During this time I also keep going into urinary retention, so atm I'm having to self catheterise myself so that I don't go into retention again! This itself causes infection and I'm in hospital atm fighting a severe kidney infection!
Now I know this is a long post but just want some help and advise! Does anyone else suffer from extreme pain when urinating?? Urinary retention?? Or any of the symptoms I have mentioned?
Please help!!!
Natalie xxx
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I had urinary symptoms (pain whilst peeing and bladder pain) which actually led to my endo being diagnosed.
Since diagnosis I have had routine urine infections, and the symptoms of urine infections with doctors claiming there isnt one.
It is very distressing when you feel the pain but doctors act dismissive.
I also got diagnosed with interstitial cystitis (IC) and then that changed to inflamed bladder with a little bit of retention.
Thing is that IC like endo is a mystery to doctors so some will never recognise it as a real thing and some will. It is extremely painful and there isnt a cure but the good news is it isnt necessarily permenant.
Whether it was IC or chronic inflammation, mine has been managed using profolactic medicine when needed and lots of Vitamin D (weirdly helped). I also had a cystoscopy done with the intention being to stretch the urethra to help peeing.
im sorry if this isnt much help as I didnt have to catheterise. but I am convinced bladder symptoms and endo go hand in hand.
They do go hand in hand -there is certainly a known link between endo and bladder probs - specifically with ecoli and biofilm.
ncbi.nlm.nih.gov/pubmed/230... we have discussed it a number of times on the forum - use the search box and hunt down biofilm as a key word - or ecoli.
After my laparotomy op in 2011 - I'm afraid to say yes the urinary retention plagued me for 17 months afterwards. It was a very very unpleasant and unwelcome bonus to the surgery. I wasn't prepared for it and it was not fun.
But ...and there is a but... for some reason at 17 months I woke up one morning and my bladder felt normal. I went to the loo - normal full evacuation. I was sooo scared it was a blip but I decided to not take my pills and see how far it would last... I didn't dare tell my family for fear of jinxing my good fortune..till 2-3 weeks later. And that was that. my bladder took little longer to build up the strength to hold in for hours and control the peeing - at first it was a bit of a dash to the loo, but I am now definitely back to normality again. Can drive several hours without needing to go pee or feeling like i need to go but cannot.
The urinary retention is quite a common reaction to surgery and cystoscopy. Partly from the stretching or the urethra and also because the bladder operates on a set sequence of electrical impulses. They must be firing in the right order for a normal loo trip to take place. These medical procedures mess about with the bladder and can knock the electrics out of whack, causing what is called bladder spasms.
You cannot feel a badder spasm - it's just the term used for the miss-firing of the electrics if you get my drift.
Now most people who suffer with this after surgery will recover in 2-3 weeks... then there re the rest of us, that can continue to have a lot of problems - but the majority will eventually recover.
What triggers recovery I have no idea.
I had completely given up all hope of recovery - which made that special day so amazing to me. The one where I woke up and went for my 1st normal pee trip in 17 months. I cannot begin to tell you how exciting that was - but terrifying too, because I was so fearful it was a one off and I'd be back in trouble by lunchtime.
I had only had 1 UTI in over 40 years prior to the op. I've had 4 I think since then... each time taking several bouts of antibiotics in order to zap it.
Use the search box on the green bar to type in Biofilm as a key word - because I have posted on the forum all about how the bugs in the bladder can hide from antibiotics and no sooner do you think you are cured of a UTI you get another - only it is the same old one come bck again because it wasn't killed off entirely. The master breeding bugs hide behind biofilm in the bladder.
That is a separate issue to the bladder retention problem. The connection being that you are self catheterising for the retention issue which at some point allowed the bugs to get in.
Have you tried any of the tablets yet?
They relax the bladder muscles - yes they can make you incontinent or rush to the loo, but as you will know that is a small inconvenience compared to the retention pain which is horrific when you cannot go or if you can go - it's only a dribble and your back to the loo 6 times an hour peeing a drop or two at most as a time.
After several different ones - the one that worked best for me was Oxybutinin (Ditropan) - I was on it all day and night and woe betide me if I forgot to take them.
It did not stop the muscles spasms - it was not cure in that sense - but it did relax the bladder enough to allow me to pee (no control over when or where much of the time but at least I could go.)
I had to wait -and wait -and wait for my own body electrical impulses to get back in to synchronisation again so that the trigger to say the bladder was full and needed emptying was followed by holding it in till on the loo followed by open up the urethra and stay open till the bladder is definitely empty followed by closing up the urethra again.
With spasms - it's chaotic. the messages to go to the loo happen whether you are full or not. the messages to open and close the urethra seem sporadic.
Further more with IC or with endo in the bladder (which is my problem and remains an issue)
the longer you are holding wee and blood in the bladder the more irritated the lining becomes
and you are in a vicious circle.
There is hope - please don't think it will be like this forever and ever. Even I had given up all hope of normal loo trips inspite of reading that most people do eventually get to the point of recovering naturally.
It may take a long time - a lot of pain and mess and faffing around - but there is every possibility you can one day get back to normal.
Do have a word with your GP about trying out some of the pill options and give them a go to see if you can get yourself off the catheter - even if you end up wearing incontinence pads for a while it is better to be going than retaining pee even if you don't yet have much control over that.
You can change things in the diet to reduce the likelyhood of extra irritation in the bladder- avoiding citrus fruits is an example. Have a look as the diets for IC - because that does mainly deal with reducing inflammation even if you don't have IC causing the inflammation it will not hurt to follow the IC diet.
I did watch some youtube videos on IC which talked about the diet. They were very informative.
I have had several bouts of kidney stones and post stone kidney infections over the years - besides antibiotics - drinking and drinking and drinking water is the best way to flush out the infections.
As the jug of water the hospital gives you is far from tempting to drink - ask a relative to bring in some black current juice to flavour the water and make it more drinkable. Force feeding yourself plain water is very boring, so do add something to it and you'll be more likely to keep on taking the fluids onboard that you need to flush this bug out or the system. Vital to do this while you are catheterised as there's no limit to how much you pee you just keep an eye on the bag and get it emptied as and when needed.
There are now fab super concentrated juices in little squeezy bottles and you just drop a few drops in to the water glass to flavour the water. They are pocket sized concentrates cost about a couple of quid and make about 20 drinks. Avoid the citrus ones unless you really are in need of that flavour.
Ribena, Vimto and Oasis Mighty drops etc are all in on the new craze for super concentrates.
so with a few small bottles of those by your bed - you have a choice of flavours to make the drinking fluids more interesting.
Really hope things take a turn for the better soon, it sure ain't fun to have every aspect of daily life taken up with the pee issue. It is so soul destroying ...... but I am living proof that it can get better. Took such an age to get there, and I still have to be very careful with the UTI extra risk after the urethra has been stretched, but I am living normally again most of the time.
Cyber hugs to you Natalie. I do know what you are going through and am sending my very best wishes through cyber space for your very speedy recovery from all of this.
This is really interesting to me as I feel like I need they wee all the time-even when I have only just been, within 20 minutes I have a huge pressure to go again, Is this urinary retention?
I have just tried Waterfall's D- Mannose. A powder you put in warm water. It's really helping. My GP thinks I've got IC but it hasn't been diagnosed so the problems could be from the endo I had excised 13 weeks ago. My bladder was not in a happy state after the surgery. Worth having a look at and reading the reviews. Quite expensive but if your bladder hurts it's well worth a shot. I was happy to try anything to get rid of the pain.
I have been suffering from cystitis for 2 years. I had bleeding in my urine. I had lumps burned of inside my bladder in June this year. I was fine for a week, and then it all started ago, the pains, burning stabbing pains, lower back pains. I've been on so many antibiotics and non of them help. I hate going to the loo now, I go even if I don't drink anything, I can always feel like something is pressing down on my bladder, the pains are becoming so unbearable. I'm going to see my consultant today at 11am to see what they will do next.
I know my right ovary is stuck and my bladder pulls to one side not sure if that's stuck either.
Hi Natalie, sorry to hear you are suffering. I too suffer from pain when urinating, and the pelvic pain is a lot worse when I have a full bladder. My Gynae says it sounds like IC but I have not yet had it confirmed by a lap.
Sorry, this isn't much help but just wanted you to know you are not alone. Big hugs x
Sorry to hear you are having such a difficult time, I find that my bladder feels full all the time and use the toilet a lot more than usual around my monthlys. I have my appointment next month to address my Endometriosis. I have suffered with it for 16 years on and off , and will be having my 3rd operation soon
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