IC, urethral syndrome or just rotten luck?

Kidney and urinary tract
1

Sorry guys, this is a LONG story.

Before 2011 I had had the occasional very mild case of cystitis. Maybe once every couple of years. Then on a family holiday in the US I developed extremely painful cystitis. You cannot imagine (or some of you probably can) the burning sensation and urgency. We had a doctor out twice on our travel insurance and she gave me two lots of antibiotics (the second once was stronger and eventually got rid), as well as some strange tablets that made my pee bright orange and took the sting off. I don't to this day know what these were because her handwriting on the labels was impossible to read.

Since then, back in the UK, I have had several severe flare ups that are just as painful. Most of the time I can connect these within 48 hours of sexual intercourse, since I have been in my relationship for 5 years and we were long-distance for 3 of them. It made it easy to work out what was to blame. Having said that I've had a couple of unrelated flare ups that might have been down to stress. I don't have periods since my progesterone only contraceptive pill has stopped them, so it's not likely to be PMS related.

7 weeks ago my partner and I moved in together and since then I've had two seperate flare ups with a couple of twinge-y days in between. The doctor gives me Trimethoprim and it seems to help almost straight away, however my dip-sticks and lab urinalisis always come back either negative or with just a few Leucocytes. After my last course of antibiotics I did a home dipstick and it still showed a moderate amount of leucocytes despite the symptoms having gone.

We have tried showering/peeing before and after sex and while it seems to help it hasn't this time around and I've woken up with lots of pain in the urethral department. I rarely get actual abdominal pain with these symptoms, only occasionally after the firsy couple of days there is a dull ache and the odd twinge. Instead I just have the most horrendous burning and urgency and when actually going it feels like I'm being sliced with a knife. It really depresses me and puts me off sex. Being in my 20s I feel pretty abnormal - I should be enjoying myself in that department

I had an ultrasound last November (lovely having to hold 1.5l of water in my bladder while the clinic was running late) and everything was normal. I've just recently been referred to the urology clinic for further investigation but haven't got an appointment yet. 

The main reason that I don't think I have IC is that my symptoms seem purely urethral for the most part, but I'm not sure. What do you guys think? Being extra clean, avoiding strong soaps, drinking lots etc do seem to help and once my symptoms calm down I feel basically normal until the next bout. I had read a few things and wondered if the bad cystitis in 2011 has left my urethra etc scarred and sensitive to even small amounts of bacteria. My relationship/sex life were very normal until then. Diet wise I haven't made any changes as I eat consistently and it seems not to cause anything. Beer before bed can also make things sting but other alcohol doesn't.

I guess I just wondered what fellow sufferers think of my symptoms as my GP has no idea!

2

Hi Kelly, 

I feel for you, as I've been through such similar episodes. 

I'm 44 now, but I had Chlamydia when I was 22, and sometimes I wonder if that scarred my urethra so much to cause ongoing problems. The chlamydia only presented with urinary symptomes, and for 6 months I was incontinent, with multiple trips to the dr for "uti s" and then treated with keflex. I was later tested & treated for chlamydia.

So I wonder about scar tissue, fragile areas of the lining of the urethra & bladder... how it doesn't seem to be much sort of friction which irritates the area, subsequently leading to infection.

Sometimes I wonder if anal sex would reduce the severity, because the penis would be rubbing on the anal wall, thenthere would be a double layer of vaginal wall before the urethra would be impacted. 

I also wonder about the use of some kind of muscle building appliance, to build up the area of muscle between all these openings, just so there's a buffer, and hence, less friction on the utrethra. So I'm going to find out about that. 

A friend of mine keeps telling me "don't chase the orgasm", which is pretty hard. I guess my uti problem is always made worse when I seek the G-Spot orgasm. 

Its so completely not fair. 

Incidentally, I never had a problem with utis with my first husband. He had a medium/small (but not tiny!) penis, and we just had normal regular sex. I never worried about soap, peeing, drinking water, etc. I was with him for 13 years.

As soon as I started seeing other men, some with large penis's, then my trouble started. And hasn't stopped. 

For me, it comes down to pure and simple rubbing of the urethra. Because I want an orgasm.  

If it's not the urethra, then its the sphincter, or the bladder. I don't know.

Does anyone know what goes on in the urethra to make it so unhappy?

I have at least 6 UTIs per year, and the last one was resistant to trimethoprim & then keflex, so i went on augmentin duo forte after it recurred with symptoms & fever.

Sadly for me, I love sex, but it comes at a cost.   

 

3

l think burning and stinging is often present with both bacterial and intersticial cystitus, though anti bs dont generally improve ic. After saying that research in recent years has shown women with ic have improved symptoms by taking one kefalexin daily, the women didnt respond to placebo,s, yet researchers cant explain why it helps, speculated there,s bacteria deep in bladder wall that doesnt show up in samples.  The most certain way of diagnosing ic is by cystascope with biopsy.  Its possible there can be some type of damage to urethra-bladder, l and many others started with ic after surgery, for me csections 2 and sterilisation, although l had occassional bouts of bacterial cystitus in the years before csections.  My main triggers to set of ic attacks were menstruation, and intercourse, though sometimes spontanieous, maybe stress or strain in area.

l think it is rubbing of the urethra in women whove a sensativety to start with,

l also enjoyed a good sex life, ic certainly put a dampener on it, if not causing pain at the time could set bout of ic off, used to just try at most settled times of month, for me usually week before menustration, but no guarantee if wouldnt cause probs. Beer or lager would also aggrevate my symptoms, g and t easiest for me to not cause problems.  Its also been shown that l arginine helps ic, which l use it for but think its often used as a muscle developer by gym people. Good luck 

4

Hi Kelly,

Sorry I am a bit late on this but I am exactly in your position. Hopefully what I've done to help may help you.

A year and a half ago I started experiencing really violent pain in my urethra and total discomfort, nothing could distract me or take my mind off it. (Like yourself, the only other experience was 2 years prior when I had really painful cystitis which lasted around a week, and was treated with standard UTI anti biotics). I got screened multiple times for any type of STI (all neg) ruling all those out before doctors could take it further. Over five months the pain only got worse and my GP kept throwing prescriptions at me, anything from Trimethoprim (he gave me that 3 times!), Metronidazole to oral thrust tablets. Nothing helped.

All my many many urine samples came back with no infection, the only comment was I had a high count of white blood cells.

After my GP referring me to a Urologist on the NHS and I was told the waiting list was 9 months, I decided to go private and paid £170 for a consultation with a Urologist who told me to put natural yogurt on myself due to the healthy bacteria found in it. I also had an ultrasound on my bladder and kidneys and all was healthy.

Over the space of 9 months since the pain came on so frequent and intense, absolutely no clue as to what may be the cause was found out. I kept a food diary, cut out coffee, alcohol, spicy food - no trend was present. I would wake up in the middle of the night crying in pain feeling like the only way to describe to pain to my boyfriend was saying it felt like shards of glass were there. We did not live together and there was no real correlation to us having sex and the pain coming on, it felt like it was just always there, waiting to flare up. This all was when I was 19, on the contraceptive implant, and like yourself, quite healthy, good diet etc but it was really affecting me and getting me down because there was no explanation offered.

For the next year the problem completely died down and I rarely noticed it, and if I did, it was nowhere to the extent of what it used to be. I would just become conscious and make sure I drank enough water. However, this year (I am now 20) it has seemed to be returning, again, nowhere to the level of discomfort it was, but I am back having the pain all day and drinking water does not seem to be releiving it. I'm sure you, like myself, have read many forums trying to figure out what causes it and from what I have learned from my personal experience, doctors do not neccessarily offer the same solutions if it isnt something that is easy to diagnose - for me they just ruled out the common causes and also made sure to check it was nothing serious, and when that was completed nothing else was said or done and I was left to my own explanations again. 

Hopefully things have got better for you, I would love to hear an update. 

5

Hi Mackenzie5460! Can you give me your email address? I have the same experience and would like to connect with you on it

6

The struggle is real, me too have had all of those symptoms starting at the age of 19, I'm now 22 and still with flare ups every 3 or so months lasting about a month.

Been to multiple urologists, who laughed at me, told me I was imagining it, and at firsf put it down to stress.

Tried to put me on multiple TCA antidepressants, and ive had multiple bladder installations of anesthetic.

I had this ongoing for a year when if stared, no infection present - I thought I must have had bladder cancer.

Anyway, i've been diagnosed with 'urethral syndrome' which like ic it's an autoimmune disease. Due to months and months of elimination of foods and other stuff I've found its at its worst when using hormonal contraception. I cannot take the pill or use any kinds of hormones as it makes it ten times worse.

I had multiple cases of cystitis when I was a teenager and I think It has caused some nerve damage.

Honestly the only thing that eases my discomfort is aloe vera juice.

I still get bladder spasms constantly and a frequent urge to urinate, although the pains only there when it's at its worst.

At first it was very frustrating and still is don't get me wrong, it has a huge effect on your life. Especially when you've got a constant burning urethra and there's nothing you can do to be out of pain other than sleep.

Hoping one day there's a cure for this stuff, also if you've got an autoimmune disease like ic or urethral syndrome, it could be more likely to have other auto immune diseases, for instance I also have celiac disease and they're linked not closely but they both have unknown causes, and no cures. Best of luck with your pain and don't give up until they put a name to what's causing your discomfort.

7

Hello kelly, reading the above is what experience every detail you have given I am going through. I have even thought About ending it as I'm on the verge of loosing everything and I have no quality of life. I use to be OK up until I caught ecolli ever since then... Iv never been the same. I'm riddled with it. I get rid of it then it comes back. When I'm tested negative I still get leucocytes in my urine and trace of blood.

Pr diclofenac works as a very good pain killer post rectal 100mg but it where's off. I carry it everywhere ready for when I have a flare up. I get flare ups 24hours exactly after sex and drinking alcohol. I have a boyfriend who must be getting fed up of me. All I talk about is this problem.

I get cystitis during my period, working nights, 24hrs after sex and alcohol. I can't win. I'm on prophalaxis antibiotics. I reckon it could be an inflammatory disease response to anything in the urethra or any kind of trauma caused.

8

Hello I have the same problem, my cystitis is the worst ever now come to think of it when I had met my boyfriend. He has a large penis and I am never away from the hospital. It's ruining my sex life, however I am the same, I love sex and I get a lot of pleasure from it, until 24hr post intercourse.

I will end up loosing my job my house and my boyfriend as I am sick every week.

9

Hi Laura.

I haven't read all the previous posts but I can  see the IC is driving your 'stir fry' mad. I understand why. What's helped me is a drug called ''Vesicare'' or (Solifenacin succinate).  initially I had some horrible side-effects, but the Doc told me to stick them out and they should dissappear after a week.  I did and I'm on 10mgs at night and it works a treat, unless i drink fruit juices (Orange particulary)  and I have the odd glass of wine which also sets it off. the other triggers (for me are sugary foods - chocolate etc)  but the pain was so bad that I'd have starved to get rid of it.  I know there are 2 other drugs on the market for IC treatment.  I don't know their names bt the one above has the least side effects.

hope you get help soon. it's a horrible condition, very poorly understood by lay people and not taken very seriously by the Medics.

C

10

Hi Caitlin, this is a terrible disease to have, no quality of life at all. It is poorly researched, it's a shame. I know the urethra is made up of skin cells, it's not actually what people think it is. It sounds to me what ever we are all suffering, there's a degree of damage to the nerve endings. Them nerve endings tell the brain to hold and release urine in the urethra.

I think doctors need to find a cure and conduct a nerve study on urethral dilation and constriction.

What actually works for cystitis for a short period is PR diclofenac, it only gives you and hour or so pain free, before you start feeling the niggle and stinging again. I swear by this drug and take it everywhere with me, ready to pop, just in case I start getting a sensation during a flight or on holidays or at work. It's an emergency pain killer. It's the only thing that's ever worked for me.

I'm considering to try a nerve pain killer gabapentin 1200mg, it's used for nerve damage. If anti inflammatory medication works, it's like a disease similar to lupus but with urethras.

I think the signals are transmitted to the brain as a false inflammatory response, causing the urethra to swell for no reason. I am going to see the urologist about the inflammatory markers around that area, because this is exactly what it is. I know this because anti inflammatory works for non infective cystitis pretty much immediately and works, it also works for renal colic, both very similar cases just in different areas of the uretas.

I will try and cure this some how. I work as a health professional myself, and I have every doctor baffled by my disease. As this is poorly researched. Nobody should have to alkaline there bodies just to be pain free.

More money needs to go into this I will try and contact more health professionals to see if there is anything they can do. This is becoming more apparent the more I hear other people's stories.

I will try all this medication but I need something like a pain killer that will work instantly other than diclofenac and then treat the problem long term, that will work without having to cut back on absolutely everything enjoyable to a human being.

I have no children and too scared to have them due to further damage caused by child birth.

11

Hi Laura.

so sorry to hear that you may consider not having children (that is if you want to), however, you could always have an Eective Caeserian Section under Epidural if you wanted to experience the baby's first breath etc.)

12

Hi Laura 

Think my last message went without my permission - gremlins in the system.  as i've said above, you could always have an Elective Caesarean Section, under Epidural if you wanted  to witness the birth.

 I totally agree with you that this condition is under researched, under acknowledged  & the medical profession don't seem to understand what a debilitating condition it is all round.

I don't know whether you're in the UK or the US, however, the ''Vesicare'' did it for me.  Think I'd have taken Arsnic if I thought it would help the pain. Yes it's an inflammatory condition and is understood to be an auto immune condition.  many people who get it also tend to have IBS and other inflammatory conditions. I have Cortochondritis as well, and the meds I take for that ''nerve'' pain, ''Nortriptyline''also helps the IC pain. So inflammation of the nerve endings are involved in both these conditions.  

 In the UK, as far as I understand (i used to be a Midwife but now out of touch with medicine) Diclofenac was banned coz, there's a higher incidence of cardiac disease in ppl who take  Diclofenac long term. I don't know it's status now.  Anyhow, I hope you get some pain relief sooner rather than later. 

all good luck on the healing journey.

C

13

Thanks for the above message. I am going to research this on a recommended British journal I have found on Urethral syndrome.

I see you have mentioned "used to be a midwife", I take it you can no longer practice with this condition? My sickness and absence is appalling, and I am in for disaplinery action this week. I have a mortgage and vehicle to pay for. I am suffering and I am alone tackling all the finances.

I am from the uk how about yourself?

14

Hi Kelly and all,

I'm a little late on this but I'm really sorry to hear everyone's stories. In some way, however, it's comforting to read that we're not alone in this confusing disease. I will say that I am very puzzled like most of you as to why we're experiencing these symptoms, which are more or less the same (I have pain ONLY in my urethra, and spasming which I believe to be attributed to a recent pelvic floor dysfunction that I have acquire during this disease, as the pelvic muscles tend to contract during pain).

And like everyone has said, it's like feeling glass shards deep within your urethra. Sometimes it hurts during peeing, sometimes it hurts afterward, however it will hurt even when not peeing for me as well.

This feeling started ever since the first time I had sex when I was 15. I am now 24 about to be 25 and furious, tired. It's very hard for me to untie these two events in my px history, which I explained to a urologist. Of course she didn't believe that they were correlated. She ran a few tests and told me that I had interstitial cystitis due to the lack of bacteria in urinalysis run by urgent care clinics. This pain has come and gone ever since I was 15. 

What begun as extremely treatable with antibiotics (Macrobid), has now--a decade later--become nearly unmanagable. I have had several positive UTIs over the past decade but continued to experienced symptoms of UTI (micro and gross hematuria, dysuria, some frequency/urgency), with and without bacteria present. As of this past year and a half, it has gotten acutely and progressively worse. This does not sound like interstitial cystitis. It doesn't follow most of the guidelines of it either (I do not have dietary triggers in large, I pee anywhere from 3-7 times per day with lack of nocturia, and my hormonal cycle doesn't effect my symptoms). 

If anyone out there reads this, please let me know what you're experiencing and any solutions you've found. Like Laura, I work in the medical field and am very frustrated. I have my own ideas about what is going on, but to self-treat is never a great idea. I'm concerned because I'm afraid many of us are being treated on secondary illnesses and not the primary illness. This means that we will NEVER improve as patients, and only stay the same or get worse, because we are being treated based on secondary symptoms of a root cause that is unidentifiable. 

Again, like Laura said, no one should have to alkalize their urine in an attempt stay pain-free. Going the bacteria route, a lot of bacteria cannot thrive in alkaline environments and may go 'dormant' in these situations. Certain bacteria may stay dormant in an endospore state during unfavorable conditions such as this, causing a latent infection. Also alkalizing urine will prevent acidic conditions from irritating an already irritated urethra. On the other hand, this may be the body's misguided reflex, resulting in an autoimmune disorder described by others here. Over time, this does damage to the tissue and it becomes more and more sensitive to damage. 

Whatever the issue is, I really hope that some of us find relief through treatment. I've been treated so badly by urology and gynecology that I'm trying to find a pathologist to take on this case. I will keep anyone update who is interested. It's hard enough to figure out what is causing this and to get adequate treatment so this issue LEAVES our lives alone for good. Lord knows I wouldn't wish this on my worst enemy : (

 

15

Hi Abby

Wow I have something that sounds super similar to this. Urethral pain, pretty much constant in varying degrees. Started just over 6 months ago. Antibiotics helped a bit but later tests negative for bacteria with pain persisting. Another doc said thrush causing urethritis. Treated that and helped for a few weeks before coming back. Gyn thought hormonal, i.e. Low oestrogen like in the menopause. I'm mid 30s but been pregnant/ breast feeding for last 5 years. Tried oestrogen cream but didn't help for long. This is a frustrating element. Things help briefly and for a few days / weeks I live life normally then it creeps back. I do feel hormones may be a factor. Seen a few people comment birth control changes make a difference. Had similar for a few weeks when breast feeding first two kids but came and went. With this one it's hanging around. Like you & others have said maybe some nerve damage / sensitivity making it worse as been going on and on. Luckily doesn't keep me awake at night so not sure about Ic. Should probably quit caffeine but with 3 kids I need my morning coffee. Frustrating to feel only solutions may lie in giving up pleasures in life, coffee, sex, wine. Hoping will just go away....

16

Hello Kelly and all, I actually just came back from the pain specialist with my wife, we already went to a few urologysts and other specialists and they said they can't do anything and all the tests came back normal. She has the same symptons as Kelly and they said she has "Urethral Syndrome" and they can't really treat it. It has been really hard during the flare ups and we are still looking for answers. Does anyone have any update on effective treatmant or way to relieve the pain, or at least what pulls the trigger for the flare ups?

17

Hi,

I've had Interstitial Cystitis for over 18 months now.  the pain can be awful.  I've been put on a drug called ''Vesicare'' and it works well for me.  It doesn't get rid of the pain completely but makes it manageable  I find sugar and citric foods cause flares, so I avoid them. 

18

Hi Laura, I have been reading online for weeks about urethral syndrome and came across this thread. After a 2 year battle with doctors, seeing 4 different urologists and having every test in the book, I was just recently diagnosed wtih urethral syndrome. I have been told there is nothing that can be done. I can relate to everything in your posts and was wondering if I could contact you via email to discuss. Please let me know. thank you smile

19

I hope you are doing much better now. I had similar problems for a number of years. My doctor prescribed Methenamine Hippurate. I took it for about 6 months and helped enormously. I was infection free for ~3 years when I changed jobs and had added stress levels. I did another ~4 mo course of treatment and things improved.  I still take it before or right after intercorse.

20

I can almost say positively you have  cystitis it may not be Ic but it's a form and yes it sucks! I suffered for yeeears not knowing what the hell it was and yes absolutely sex irritates the urethra, get it from the back 😊 Do not have sex when you have a flare up it will only make it worse... believe it or not what you eat can trigger it look up a diet for IC and you might find some foods your eating that are contributing. Stress contributes too ... see a urologist just to rule out anything and with IC you will get negative labs because it is phantom symptoms ofbaUTI but not actually one.  No cranberry juice anything acidic will make it worse. There are over the counter drugs that help when you have flare ups Azo which turns you pee orange and Cytex both work good ... hope that helps I feel for anyone suffering with this I haven't had a flare up lately but I ate too much chocolate and I can feel a twinge 😳