Does anyone have advice on how to cope?

Kidney and urinary tract
1

Okay so here is my story, I'll keep it brief:

(19, female, UK)I have always been prone to cystitis. I used to get UTI's after sex. However as I was gertin together with my current boyfriend (about 15 monthess ago) I got a minor uti even though we hadn't had sex. The sachets such as cystopurin that normally get rid of kit didn't wdork, so I got some anti biotics off my doctor. I ended up having a small alergic reaction to them, so I was given a different type once the others had left my system. Those cleared up my uti, or so I thought until a few days later it came back. Since then, I've done constant urine samples, seen urolgogists who appear to be clueless, dome flow tests, ultra sounds, been on all kinds of anti biotics with only one type working (on a one off). All we know is that my cystitis is non bacterial and now, the waysnthat used to relieve my symptoms have stopped working.

So, I need advice.

My cystitis mainly flares after I have sex, its so incredibly painful (burning, urine frequency, fever, tired, depressed) that I can't brinfmtself to have sex. My boyfriend is so amazing patient but after over 6 months of no sex he's getting...a little frustrated, and so am I. Does anyone else have this problem? Any tips on how to stop it?

Any antibioctics that work best? I've only been on amoxicillin (the one that worked once), trimithprin (I cant remember the actual na!e its something similar) and one other that I can't remember. Any advice on ones to ask for?

How do you cope with flare ups?

Do any of you get itching? I got tested about 8 months ago for thrush and it was negative. I havwnr been given any creams and the itching has got worse and worse, its driving me crazy!!!

Do any of you feel tired? I feel tired all the time since developing this problem.

Even similar stories will help me, I would just really really appreicste some advice as I am new to this and feel so hopeless.

Doctors have given up on me and, without seeming over dramatic, it really is ruining my life.

(Sorry about typos and thank you for reading my ramble!)

2

Having suffered for years I was sent to see a gynecologist she was so understanding and perscriped 3 different antibiotics one of each to be taken at night for 6 month,the kept me on 1 antibiotic daily (cefalexin ) it worked.

In the past I have lots of test and investigations plus bladder repairs.

I don't get cystitis very often now but if I do I tske extra antibiotics,cystopurin,a hot drink.hot water bottle and go to bed or rest for 2 to 3 hours.

Drink plenty,I like to drink ginger cordial diluted with hot water,I think it helps.

I would advise you to keep going back to you Gp and if he can't help ask to be sent to a specialist.

Hope it helps a little.

3

l had simular problems for years, pain burning stingign  frequency unwell,  neg samples, a cystascope showed up intersticial cystitus, which doesnt show in samples, as no bacteria found. inflammation from auto immune or allergic reaction, it usually is aggrevated through intercourse, sometimes cyclical with menustration,  You need a cystascope to diagnose it.  There is a l ot of info on c.o.b. site with advice and forum. l was given cimetidine adn amitriptylene for it, also largine, settled it 90percent, but still aggrevated at times, and if its severe you can get very tired. You,d need cystascope to diagnose or rule out. good luck

4

Hi Becky, 

I understand your situation, and how it can cause such emotional and physical distress. 

I had many many many UTI's and have seen countless GPs, been on hundreds of antibiotics, and seen a urologist who recommended a bladder dilatation for interstitial cystitis (which I refused on the basis that she didn't enquire about my signs, sypmtoms,and personal insights). 

It is my total opinion that my UTIs were stress related. 

I am quite sure that my UTIs infrequently caused cystitis, but it was far more related to the actual urinary tract, the urethra. And I am also convinced that it was to do with my sexual organs, pertaining to the area around the vaginal walls and, more specifically the G-spot.  GPs and urologists were very quick to dismiss this, as it seems a difficult discussion for them to have. 

For me, there seemed to be a huge amount of  "inflammation" in the general area of the urethra & front wall of the vagina,  rather than in my bladder. This inflammation is, I believe, akin to auto-immune. 

Whenever I had sex, even just a quickie, no matter if I passed urine immediately after sex, drank lots of water, did the cranberry thing, etc, etc, etc, nothing worked. NOTHING. 

The UTIs were being caused by friction on the inflamed area, making it way more inflamed. 

.....however, I 18 months ago I was diagnosed with Graves disease, which is a typre of autoimmune disease of the thyroid gland in the neck. I am on carbimazole, and my thyroid levels are now reasonable. For many years I had a low grade goitre in my neck. This has disappeared, I am feeling well, and didn't have sex for a year. (I was too tired/sick and my partner and I broke up).  I also went off the pill (low dose). 

In saying that, we have just recently had sex a bit over the summer. I had the following things ready to go: trimethoprim, norofloxacin, ural, ceflex, valium (this is an outstanding thing to have handy for an attack, as I would feel the signs of a UTI, take trimethoprim, a litre or two of water, and two valium and try to minimise my distress/ have a sleep when it kicked in), specimen jars and path slips, etc etc, etc.    .......but I didn't get a UTI, and we had lots of good sex, which really seemed to rub on the area which always used to cause UTI's. Also some average sex. NO UTI....unbelievable. 

I believe my general health is better. I'm eating more salads. I'm on a few multivitamins and iron, and I'm on medication for my autoimmune disease. 

I also rested the general area of inflammation, which was easy since I didn't want sex with my partner, etc. 

I honestly feel for you, and hope you find the right GP who will listen to your whole story and symptoms, and think laterally and logically. Maybe there is something you can take from my story that will help...???

All the very best, and fingers crossed for my own situation too. 

5

Also, as far as the itch goes, I'm not sure. I did get itchy for a while and was given some aci-gel. That was kind of okay. I think I mixed it with canestan. 

...and maybe consider having STD tests. ? chlamydia. 

And....is it possible your GP should consider treating your boyfriend as well?

And...would you consider using condoms? Does your partner shower/wash first? (not that I think that's necessary, but maybe it would help ?)

And...maybe consider anal sex for a while instead? 

And...try to keep a bit of a diary of your UTIs and symptoms?? 

6

It's been quite a while since you posted but if you're still struggling I have plenty of advice with coping. I used to cry every day and not get up out of bed now I'm jogging every second day and generally pretty happy . 

7

Hey I'd be happy for some advice if you can please