IC, urethral syndrome or just rotten luck?

Posted , 29 users are following.

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 sad

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!

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  • Posted

    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 : (

     

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    • Posted

      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....

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  • Posted

    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?

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    • Posted

      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. 

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  • Posted

    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.
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  • Posted

    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 😳

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  • Posted

    Hi Kelly, it may be time for you to see a specialist. It's a safe bet this is beyond the expertise of a GP. A urologist can hopefully help you. On this forum there was another woman whose worse pain/flares came after sex. I am not sure what the specialist did for her. I have heard, however, that painful sex and IC are related. When I am having a bad flare it's hard enough to go to the bathroom let alone have sex. when I am not having a flare I almost feel normal and it's easy to forget the various ways a flare can be brought about. I think you could possibly have IC even though my Gyn has repeatedly said that without the proper amount of bacteria in the urine (100,000 units, I think) then it is not considered IC. When I first got this nearly a year ago she told me there wasn't enough bacteria to constitute a bladder infection or UTI...therefore, antibiotics will not help. For me, diet, water and some exercise help me. I would think that for you to have a more definitive response from a doc it might be good for you to get checked out by a urologist. When I have a flare it doesn't just hurt when I go. I get cramps, pain and sometimes the area is so sore and I feel pressure. I know the symptoms can vary. I hate having this. Whatever they diagnose, I hope they can give you some relief. Best wishes! 

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  • Posted

    Hi all, I need to tell you my discovery for keeping cystitis at bay...at last. Hi, I really do feel your pain. I've been getting cystitis regularly since my early 20s and I'm now 50. I've taken all sorts of antibiotics, always needing stronger and stronger ones. However, recently I was told about turmeric for cystitis...while sceptical at first...I tried it. Once I noticed initial symptoms...needing to pee more often, slight burning and some water retention after pee-ing...I took three capsules, then after an hour, I took three more, then after another hour, I took three more, then fell asleep...and when I woke up, my symptoms had gone. First time ever I have got rid of cystitis without antibiotics...It has happened again since (about a week ago) and I did the same...and my symptoms left me...I am so happy and eternally grateful the person who told me about this...thirty years of disgusting antibiotics...I hope i never have to take them again for this. 

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  • Posted

    Hi Kelly, I haven't heard about tumeric being an effective pain killer for IC and I'm glad you are getting relief from it but pls be mindful that tumeric does have mild blood thinning properties and should be taken with this in mind. I have tumeric which I use for me and my family just as a supplement but I don't give it to them every day for this reason.  Tbh I'm not sure how much is too much but given the milligram content to your tumeric I would just caution you to not overdo. I would say check with your urologist to get their opinion of a safe amount but honestly you'd probably do far better asking a nutritionist. The other strange thing about tumeric being effective for IC is that most spices are considered inflammatory to IC patients...in other words your doses could trigger a flare but in your case it does not. Weird in a way. Take care.

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    • Posted

      Hi Marylh, I did not use turmeric as a pain killer, I used it to counteract the infection itself, as that is what I had read it was to be used for. Turmeric is a spice that fights inflammation and while it may be counterintuitive for it to heal something like cystitis, it has done on two occasions for me. If we lived in asian countries such as India, I'm sure we would be taking huge amounts of turmeric in our cooking...probably good for folks to check with a good nutritionist, but as I am an otherwise healthy 50 year old woman with a fairly robust constitution...I just went with what I thought would help me personally, and it worked. Turmeric can in no way be as damaging to the human system as antibiotics. 

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    • Posted

      I also take three turmeric capsules a day to help with not only prevention of cystitis, I also take it to keep any inflammation at bay...it's super. 

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  • Posted

    Hi Kate, thanks for clarifying. I know it is true that tumeric is very good for inflammation so I'm happy it's working for you. I have read that the spices out there that have heat and/or bitterness/pungency, are very good for inflammation so I wish you well with that. I also try to use them as often in my cooking as possible, especially considering I am vegetarian and they give these dishes lots of flavor, also. I only meant to let you know about tumeric's blood thinning properties.  Thanks for writing back.

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    • Posted

      And I thank you for that...my mother is on blood thinners (warfarin) and she gets cystitis...i had read somewhere in the past that too much turmeric wouldn't be ideal for her along with those meds. Like you, I am veggie, and turmeric is often popped in the pot in my house...thanks again. God knows I have tried everything in the past...extra strength cranberry tabs, which were no use for me...I had some luck with iodine...it helped a bit but didn't actually stop the infection (it just dragged it out longer and I eventually had to get antibiotics). I have found getting this horribly infection so many times in life throroughly depressing, and I don't really believe anyone who hasn't experienced it can really understand the pain and discomfort from it. 

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    • Posted

      I just wanted to mention two things to you...when I went to my Gyn last year around this time, when these awful symptoms first came to torture me, she had given me a list of foods and bevs to avoid. This is when I first discovered that acidic foods were bad and to keep to a mostly alkaline diet and also to drink lots and lots of water. One of the items on the list, believe it or not, was cranberries which I know you mentioned in your last comment. The other thing I wanted to share, there are these freeze dried aloe Vera capsules that some ladies I have corresponded with in England are swearing by. They are made by a company called Pukka. Over here in the states we have access to their teas, of which I have many...but try as I might I can't seem to get the Pukka aloe Vera capsules. We do have a brand here called Desert Harvest but they only work intermittently. Anyway, I mention the Pukka brand because it might be easy enough for you to try, if you'd like. As I said, I've been hearing good things about them. Also, good to speak with a fellow veggie! 

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