5th course of antibiotics in 5 weeks!!! Ready to explode or runaway, totallt fed up!!

[gillianc14]

Im just back from emergency appointment as im in so much pain in my pelvis and back and yet again they tell me I have a urine infection!! I have been bleeding for the padt 5 weeks on and off, im also passing big clots and they just keep giving me antibiotics and painkillers. Im currently on tramadol, codydramol, mefenamic acid and diclofenic and its not helping the pain. Im so fed up with it all as every time they send urine away its not showing infection but shows blood obviously as im bbleeding but the dr doesnt seem to get it!! Really dont know what to do next, just needed to rant x

[daffodil]

So sorry you are suffering so-there are so so many posts on here re endo being confused with UTI,mine own included.Endo can get into bladder,kidneys or coat the organs causing infection or extreme agony as the endo bleeds.It may well be a UTI -I managed to go about a month thinking it was my endo flaring,when actually it was both and I ended up with bad kidney infection.Only after a month of being tested UTI did anything show in urine.It is well known that endo causes blood in urine or stools and you are right that many doctors will treat it as UTI,when it is not.

There is a supplement that you can take for frequent UTI- called D-Mannose.It can be bought on Amazon as a powder or capsules to add to water,juice.Google for more info.I have managed to stop my uti pain by having a months supply of this.it is similar in effect to cranberry juice.I had 4 different courses of antibiotics -each helped a few days then back pain came even worse.Ended up hospitalised in December.On this occasion I think it was infection,but I am resistant to or allergic to many antibiotics( due to the number of years my endo has been treated as UTI!) but on many previous times I know it was endo.

How many days treatment are you getting - 3 days is not enough.What antibiotic is it.You absolutely have to insist your GP sends a specimen to be cultured as you need to know the correct bacteria involved.Most are e coli,but not all.The one I had eventually cleared with 14 days of Nitrofurtonin.

Have they ruled out pelvic infection or bleeding /leakingcyst as that is another thing not picked up.

I have learned the hard way that if pain is unbearable and not improving with treatment doled out you just have to make a fuss.Call in out of hours Dr or go to A and E.We endo ladies are brave and I think we have high pain thresholds,so just grin and bear it.I have only ever gone hospital when I have passed out with pain.

Are you on any other endo "treatment" or are you having periods?

[Triples]

This is so similar to my experience when I first got diagnosed with endo. I ended up being on various courses of antibiotics. By the time I took the last 14 day course the gynaecologist agreed to do a lap and found endo and removed and I had a few weeks pain free (other than surgical recovery). Unfortunately it returned pretty quickly but like the above response said, uti causes similar problems to endo so difficult to diagnose. Also check with the doctor that you don't have intersitial cystis - not sure you how easy it is to diagnose, but be pushy with your Gp and ask for referrals if you don't feel better. Good luck and let us know how you get on.

[gillianc14]

Thank you very much for your replies, it helps to know im not alone. Im getting Ciproflaxin and its 5 days course, I had trimethoprim to start with. Ive had endo since 17 im now 32, I also have pcos, im currently on the pill for my endo treatment but im bleeding while on the pill. Im in constant pain its just horrible x

[Joey_Eds13]

Hi, sorry to hear you're having such a rough time, it's awful! I'm similar to you in that I was going back and fourth to my GP and being prescribed antibiotics for uti, I also had blood in my urine. After scans, and a lap and cystoscopy (camera into bladder) they found that the endo is inside my bladder, (god knows how it got there). So I'd keep on at your GP because you need to see a specialist, mine showed up on U/S so that would be a good starting point for you. Hope you get things sorted, and feel better soon xxx

[gillianc14]

Thank you! Im just back from another gp and im glad to say she said there is no way I have an infection, she has reffered me back to gynaecologist and for an urgent scan. Was such a relief to be listened to and taken seriously x

[daffodil in reply to gillianc14]

Really pleased to hear you have been listened to.Do keep us posted.Sending you a hug,x