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!

2 likes, 36 replies

36 Replies

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  • Posted

    Hi,

    Hope i am not too late on this topic.I have been diagonosed with IC for over a year now, but justa few days ago had a flare up after months of been ok.For me it always starts with pain in my lower back then the pain increases and then i start having burning in the uretha area along with the bad lower back pain. Idk what caused my flare up maybe chocolate or spicy foods not sure. Anyways anyone else here get the lower back pain as well as the burning? And what are some things to use/consume that will help??? I'm in so much pain sad and i just have to wait to see a urologist hopefully soon. Any help would be appreciated!

  • Posted

    The little pills that turn your pee orange are Azo.

    I think they help with urgency.

    Also, drinking a teaspoon of baking soda in a cup of water helps with the burning. 

     

  • Posted

    Hi Kelly

    I am experiencing very similar issues. I notice that your post was 4 years ago. How are you now? 

  • Posted

    This is an old post and I hope you are well, but for the others.  Anyone who has sensations of shards of glass should google oxalates.  The IC groups talk about limiting oxalates bc of the shards feeling.

    The worst offenders are spinach, beets, and almonds.

  • Posted

    I have flare ups all the time. For absolutely no reason despite antibiotics and painkillers. I have sex and that will cripple me for 2 weeks, with no help from medication. I have access to send my urine and dip stick. I have no infection, so in that case my long term antibiotics won't relieve my symptoms.

    I have lived like this for many years. It's very bad now and the pain is much worse. I have problems with my stomach through all the Non steroidals I take on a regular basis. This helps me so I can still carry on working. Eventually, this will stop working.

    I am currently trying to get a cure. I am going to trial the cannabis oil for swelling. I know it's swelling I can feel toothache in my urinary tract only at the top of my urethra that is pulsing with pain. My bladder is ok, I have no abdo pain.

    Your sex life will be non existent as it only gets worse. I go away on holiday, the heat causes swelling, and I have cystitis, even after a bottle of wine ill have cystitis for up to a week.

    Laura.

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