IC, urethral syndrome or just rotten luck?

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.   

 

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 

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. 

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.

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.