Painful urination and external burning for 3 months

Kidney and urinary tract
1

Hi all! Apologies for the long post in advance but I am really in need for some help!!

But basically I was in India at the end of 2016 and I got a stomach bug and bladder infection. I went to the doctors there and they have me some medicine for the bladder infection but it seemed to just like reduce the pain but not really make it go away.

Anyway I was like that for two weeks until I got back to England - I went to the hospital and they said I had a stomach bug too (fever, vomiting etc) and gave me anti biotics for that but that they can't give me even more for the bladder infection but it should clear up. Anyway the stomach one was fine after but since then - like literally it's been 2 months now - I still have the same symptoms of a bladder infection like frequently needing to go to the toilet, burning while I'm peeing but it just seems to get worse and worse.

I've been to the doctors and hospital for this multiple times now and been on 4 courses of antibiotics and still nothing is happening. On top of that all going on down there last week a cyst (Bartholin cyst) started to grow. I've had one before but not in like 2 years. Anyway it got literally to the size of a golf ball and was so painful to like sit and walk.

I then had to go the hospital because I had such a bad fever and started getting really bad pains like on my side and also like what felt like in my uterus. They basically had to drain the cyst and said there's nothing else wrong externally. But because of my fever and blood pressure levels they gave me blood tests thinking it had developed in to a kidney infection. They said they results came back pretty normal so there's nothing else they can do. I said something is obviously wrong - I've been here more than 5 times in the last month and it's getting worse so I need something to be done. On top of that the burning has started like externally now which is always there whether I pee or not - that is what is super painful because nothing makes it go away (I've tried thrush cream etc just in case it was that)

After 20 mins of me complaining they said they'll refer me to get my stomach and uterus scanned and also to see a uro gynaecologist but I've decided to go private because it takes too long on NHS.

The specialist thinks it may be endometriosis however this doesn't link to the bladder problems. For the external burning I have been given a steroid cream which does nothing. I have had scans of my bladder, kidneys and uterus done and am waiting for another appointment to didsucss the results. I have had multiple urine tests, swabs, blood tests etc and they all come back clear.

The weird thing is the burning is really affected by how much water I drink. If I drink less than 3-4 litres throughout the day it comes back really badly.

I am only 22 and at the end of tether - can someone please help?

2

Hi Amy

Just thought I'd share my story with you as I've been the through the same frustrating lack of action or answers and long waiting times with the NHS. If I could afford private I would.

My pain when urinating problem began in October last year. After three months of being on and off antibiotics for a skin infection in my knee I had what felt like thrush within a few days of finishing antibiotics. It's known that antibiotics can really mess with your system and often cause thrush. So I used the cream and tablet to treat that but it led to intense pain, burning and urgency like cystitis. I've read a lot about thrush leading to cystitis so I think that could have happened. I've had both in the past a number of times. I took the powder sachets for cystitis which helped with the burning and urgency within a day but ever since that bout of what I thought was cystitis I have had a sharp pain when I release urine. Mainly the sharp pain is only when I release the urine and eases off mid flow to be fine by the end. Sometimes it's as I release urine and also again at the end. Along with this some days I also get a general feeling of burning/irritation in the area which could be around urethral opening. Some days it's really intense and I can't ignore it. If I drink pints and pints of water it eases off and is gone within an hour or so. After about 2 months of the urination pain I started to get twinges in my lower abdominal / bladder area whenever my bladder started to get full and after urination. One night I had severe cramps and pain in that area too which was around the time I would be ovulating. That may or may not be linked.

I have the same thing as you mentioned where if I drink a lot of water the pain is almost undetectable. It's generally worse after my first wee of the day, fine and manageable throughout the day, and sometimes worse at night. I always get pressure / irritation when my bladder is full now.

Since I first went to the nurse in October to discuss the issues I'd been having this has been my course of treatment:

- several urine tests showing no sign of infection (no nitrates)

- one urine dip test showed minor blood cells so that was sent for a culture and I had three days of antibiotics, culture came back negative for infection, antibiotics did nothing and were probably unnecessary

- 2 vaginal swabs resulting in no abnormal cells or stds

- nurse advised to continue using thrush cream to ease irritation (Boots own brand clotrimazole) and I requested a prescription for oxybutynin (a bladder muscle relaxant) to help with the bladder twinging. The painful twinging in bladder has gone since I've been taking those. I asked for these after reading loads of forums (like this one) from women who have been having similar issues. I'm sure you've done the same.

- An internal vaginal examination by nurse detected slightly 'bulky' uterus so she referred me for ultrasound (usual wait 8 weeks) but I chased the referral the following week and they booked me in around 2 weeks later.

- Ultrasound covered kidneys, bladder, ovaries, pelvic area. Internal ultrasound showed a 32mm simple cyst on my left ovary. I was advised this probably isn't causing pain when urinating but could be if the cyst is putting pressure on my bladder. All other areas were fine. They advise another scan in 8 weeks to see if the cyst disperses on its own, if it doesn't you get referred to a gynaecologist apparently.

- The nurse referred me to urologist after scan which I now have an appointment for in 2 weeks. Waiting list is 15 weeks at local hospital so I took an appointment in a farther away hospital.

So all of that has been going on for around 3/4 months. I've also been taking daily 'buffered Vit c complex' capsules and probiotics which I've read about on forums to help manage symptoms related to Interstitial Cystitis, Trigonitis and reoccurring thrush. It's hard to say if these work as such because supplements generally take a while to help, but since mid December I am able to manage and ignore the pain the majority of the time so I will continue to take them. I also now have to really push to empty my bladder fully. I don't know if this could be a side-effect of the oxybutynin.

I use thrush cream sometimes as I seem to get this itching/irritation occasionally around a week before my period so I've always put that down to hormones. So I do wonder if the whole thing could be to do with my internal system being attacked by a severe skin infection, followed by use of several types of antibiotics that didn't work leaving me weaker than normal to fight thrush/cyclists which may have then damaged my bladder lining / urethra.

As I say I'm awaiting an appointment with the urologist which I'll share my results of. I've spent literally hours scrolling through forums for people who have similar issues and I do get a sense of relief knowing that others are going through similar and I'm not alone.

I'm 26.

Jasmine

3

Thanks so much for your reply Jasmine.

Your experiences and symptoms sound just like mine. I have been to see the gynaecologist today and got the results back of my scans and they all came back normal and so they have ruled out endometriosis.

The doctor now said I need to see a urologist and so I am waiting for them to call me for an appointment for that (should be in the next week or two).

He said they will put a camera in to my bladder and take a look. He thinks it could be IC (interstitial cystitis). This is really not the answer I wanted as there is technically no cure for this, just things to help the symptoms and I'm only 22!

I'm still experiencing the external burning on the left side of my vagina- in terms of this the doctor didn't know what else to suggest at this point as I have tried thrush and over the counter steroid creams which haven't helped. So I have no idea what to do about this.

I'm just hoping I will get to see the urologist soon as it's been over 3 months of the agony now. I haven't slept a full night since before this started happening as now I have to wake up 2/3 times per night to go to the toilet.

Please do keep me updated on your progress- and thank you for taking the time out to reply again!

All the best, A x

4

Amy, it sounds like you are really having problems and the medical community isn't giving you much relief.  The only advice I have is in regard to the external burning.  I have for over 40 years (I'm 73) used a zinc oxide paste, Desitin, which is designed to prevent diaper rash on babies.  I have very sensitive skin and suffer with burning after having repeated bouts with diarrhea.  I also will sometimes get an irritation in the summer from heat in the pubic area, and the Desitin calms my skin.  I also used Desitin every day when my two children were in diapers and they never had a diaper rash.  Desitin also comes in a cream, but I strongly recommend the paste because it doesn't wear off as easily as the cream.  I live in the United States and this product is readily available.

I hope this information will help you.

Patricia

5

No worries Amy. I know exactly how frustrating it is to have something affecting daily life so severely and nurses/docs have no answers. Plus once they rule out infection you're pushed way down the priority list - but that's the NHS! It's great, but it's slow and inconsistent. Have you tried extra strong painkillers to try and help you sleep? Ibuprofen and codeine combination perhaps as it's anti-inflammatory? That's a short term fix obviously. But anything to help you sleep would be worth trying because stress makes these things worse- it can be such a viscous circle.

As I mentioned the only thing that helped with the burning for me was the clotrimazole. I read somewhere to apply it liberally several times a day. But I guess if your pain feels more internal that might not reach the area. Have you tried the internal pessary cream?

Patricia's suggestion seems useful, worth some research I'm sure.

IC will be a frustrating diagnosis especially as it seems to be what you're diagnosed with as a last resort if they can't figure it out.. lots of books/forums out there for managing it though so I guess at this point I'd rather have any diagnosis than not know what's going on. I'm hoping the camera at the urologist will be the last invasive experience I have to go through for this!

Keep you posted and likewise if you have any updates do share. xx

6

Hi Jasmine,

Where can you get clotrimazole from? Yep i have tried pessary's/ other thrush treatments in case it was that but it hasn't helped.

Weirdly enough though, i read online that prehaps putting natural yoghurt which is high in probiotics down there can help. I have been applying this externally and it seems to be helping with the burning (even though this is a short term cure).

Just to keep you updated, had a consultation with the urologist yesterday and he has said i need to have a urodynamics test done under local anesthetic and a cytoscopy done under general anesthetic. The urdodynamics test needs to be done first which i have booked for the 25th Feb - sounds so scary! I'm hoping this will provide some answers though.

Any update with you?

xx

7

Hi Patricia,

Thank you so much for this. I live in the UK but will definatley look in to a similar sort of paste i can perhaps get from here.

Thank you once again! x

8

Hey Amy,

Thanks for update. You can get Clotrimazole from any chemist over the counter. It is the same ingredient used in the Caneston cream, it's just cheaper because it's not branded. However if you've tried the thrush cream for a while it may not be any use.

Yep I've tried the yoghurt too! If it helps stick with it I guess. Other strange sounding 'home remedies' I've tried are:

- baths with unfiltered cider vinegar and bicarbonate of soda mixed in

- mixing a table spoon of bicarbonate soda with some water to make a paste that you put down there

- eating extra 'antifungal' foods like a table spoon of coconut oil twice a day and fresh garlic (yuck!)

All quite a lot of effort and messy! If you google any of these you'll find specific instructions. It's really hard to say if they do anything though as I've been doing that stuff on top of probiotic capsules, Vit C complex AND the oxybutynin so who knows which is the most effective in helping with symptoms.

That's great you've got a plan of action after seeing the consultant. Do you feel more positive? And have you got any bladder muscle relaxants yet? Mine is on the 9th so it'll be interesting to see if they offer the same route. I'm sure I'll have to wait another billion weeks on the NHS though! Did you got private in the end?

Totally understand your fears around all the anaesthetics.. I feel the same about the possibility of being offered the cytoscopy. Just hoping the results will make it all worth it.

Thanks again for update, I'll update once I've been to the consultant on Thursday.

xx

9

Hello,

Thanks so much for the other tips.The only problem is my burning is more external so im not sure what is affecting it.

I'm not sure if i would say im neccessarily feeling more positive as i have been let down a lot so i think i will only really feel better once i know what the problem is. 

I haven't tried any bladder relaxants and it says to not take anything a while before the urodynamics test to ensure nothing interfers with the results.

Let me know how your appointment goes!

xx

10

Hey Amy,

Feeling very frustrated today as the hospital messed up my appointment so didn't end up seeing anyone. Waiting for a new appointment. Grr - know the feeling of being let down!

Will let you know when I have update.

Hopefully you can continue with the yoghurt for relief. Sorry to hear you're having no luck.

Thanks

11

Hi Jasime,

Sorry it's taken me so long to reply! I didn't get to see your last message before it was deleted. Did you do a urine test privately? Did it show anything?

I have a cytoscopy booked this friday to see what's gonig on. I seemed to be ok for a few weeks with very few symptoms now all of a sudden it seemed to have flared again really badly. I've noticed I always get a flare before my period starts. It's strange that my periods also now seem to be affected. For the last two months i havent had my normal periods. Usually they are 4-5 days long with some pain. Last month there wasn't much pain but only lasted 3 days and this month there was a ton of pain and it barely lasted 2 days. I don't know if this bladder issue is affecting it or if it is something else and i am getting really worried about.

I keep researching and it seems i have something called IC. This is chronic and honestly i cannot imagine at the age of 22 having to live with this for the rest of my life. The last 5 months have been torture and i don't feel like myself any more at all!

The doctors who are doing the cytoscopy also suggested i have urethral dilation done. The is where they basically stretch where the pee comes out from. I don't understand though how this is meant to help me, especially if it is IC. They are under the assumption that it may be too tight meaning I am unable to get rid of all my pee when i go to the toilet which could be causing the burning.

I have no idea though. I have been following a low acid diet which seemed to have helped before and a few weeks ago decided i would try 1 alcholic drink (i haven't had any in months!). I did have a bit of a flare but not sure if it was because of that or that as i mentioned before this seems to happen anyway around my period time. I had a vodka and tonic water as i read online white spirits seem to react better with people with senstive bladders but who knows!

I got a letter from the doctor stating if the urethral dilation doesn't work that he will put me on antidepressents (these are commonly used for people with IC) but that's the last thing i want and i've read they have terrible side effects (weight gain, hair loss etc). 

I'm really really hoping it isn't IC and perhaps something alot more short term than can be sorted but we shall see after Friday.

Any progress on your end?

Thanks,

Amy

12

Hi Amy

just wanted to confirm if you received an update?

have you been sorted yet?

i also wanted to add that i'm having an issue with burning down there omw ... and seems to be worse befre my monthly

so i did a urine dipstick and found that my urine was acidic.

have you tried doing a urine test at home?

once i drink water and citra soda it becomes less burny and the acid levels turned back to normal but the burn is still there and hasn't completely left

so im going to the doc to check what i can use , im also changing my diet to eating healthy. i hope this is going to work cos im sick of feeling this burn

makes one miserable!!

13

hi amy, 

i am also having the exact same symptoms and right now the doctor has me on ditropan xl but to my knowledge this medication is only for frequency in needing to pee or having trouble holding in pee. neither of which is really my problem... im more concerned with how it burns so badly. all of my test results have been negative for uti, std etc. im also 22 years old and i can't imagine being diagnosed with IC but the doctor wants me to finish my 2 months supply of ditropan first before she does a scope. i'm just worried that in these 2 months the pain will not go away and just in general it is very irritating. recently ive been drinking more water and ive noticed that this helps compared to when i drink less water but i can still feel the symptoms there. lately, ive also noticed that the pain flares up around the time of my period but im not sure how this is connected. so with your scope results, was it positive for IC? if so, did they explain what could've caused it? i used to get utis maybe once every 1-2 months until the antibiotics seemed to stopped working and my cultures were negative so im not sure if the uti occurences had to do with this but it doesn't seem like it since those were bacterial and this isn't an infection...

14

hi jasmine,

i responded to amy's post but i also wanted to reach out to you to see if you have had any luck with your scope results... i know that you mentioned the doctor put you on oxybutynin and i am currently on it but to my knowledge this medication is only for frequency in needing to pee or having trouble holding in pee. neither of which is really my problem... im more concerned with how it burns so badly. all of my test results have been negative for uti, std etc. im also 22 years old and i can't imagine being diagnosed with IC but the doctor wants me to finish my 2 months supply of ditropan first before she does a scope. i'm just worried that in these 2 months the pain will not go away and just in general it is very irritating. recently ive been drinking more water and ive noticed that this helps compared to when i drink less water but i can still feel the symptoms there. lately, ive also noticed that the pain flares up around the time of my period but im not sure how this is connected. so with your scope results, was it positive for IC? if so, did they explain what could've caused it? i used to get utis maybe once every 1-2 months until the antibiotics seemed to stopped working and my cultures were negative so im not sure if the uti occurences had to do with this but it doesn't seem like it since those were bacterial and this isn't an infection...

15

Hello amy, I know is been really long since this post. I am having these exact same symptoms. Constant Burning did you find a cure for yourself?