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Cystitis problems again and again

(44 Posts)
mrsgreenfingers56 Mon 01-Jul-19 15:21:52

Know this is a medical problem really but any help or advice would be so much appreciated. After intimacy with my husband I am having cystitis type problems again and again. I go to the Drs. and take a water sample and always showing the same being no infection. Then sample sent to hospital for further testing and again no infection. I am having stinging, urgent need for a loo, uncomfortable feelings down below and generally it's miserable. We both have a daily shower, I pass water after sex and wash with cold bottled water. Always wipe from back to front. It isn't as if we are doing this constantly and not rough in any way but and still have this problem. The Dr. gave me antibiotics just in case and advised use of a vaginal lubricant and said HRT would be the answer but as had breast cancer out of the question. This has now gone on since March and my life is around the loo, hard when you go out and mix socially. It's so miserable and really getting me down and of course we are on a sex ban now which isn't good for a marriage. Any help or info or advice please. Maybe I need to go back again to the Drs and ask for further tests. Thanks.

Franbern Tue 16-Jul-19 10:26:15

I have just ordered some D Mannose. Do hope they can help me.
So fed repeated attacks of UTI's. Last Thursday my latest started. Down to GP surgery first thing Friday morning to see a Nurse, taking sample. She gave me a weeks course of ab's. By Saturday, I had to give in to the thought that, not only were these anti-biotics doing absolutely nothing to rid me of the infection, but they were making me feel pretty unwell. No major allergic signposts, but I was definitely being poisoned by them!
Rang 111,spent 40 minutes of phone to them and they decided I needed to go to Urgent Care to see a Doctor. Unfortunately, my nearest one is part of the A&E at the hospital. A&E on a Saturday night - horrendous.
Needed to get mini cab there and back, as I felt that I was not safe driving, the way I was feeling.
When I finally managed to negotiate their booking in system (which took three quarters of an hour and took me way past the 9.00 pm time I had my appointment - and finally made it into the Urgent Care unit, they were brilliant. Yes, the infection I had was resistant to the ab's I had been given. Eventually, they gave me different ab's and I got home at 12.30 am.
However, even these new ab's are not really working, (although with 48 hours of stopping the original tablets I am feeling so much better), and yesterday, following a visit to my GP, I have now been given a third type.
I am so careful and do drink a great deal of water every day. Just seems that as soon as I am even slightly run down or stressed then one of these infections occur, and are getting harder and harder to deal with.
Some years ago,a locum GP put me on a course of HRT pessaries for this. I was not totally convinced at first, but they worked like magic and I had nearly three years infection free. Wonder if Vagifem is something similar to this? May give it a try.

luckyrose62 Wed 17-Jul-19 08:21:40

I also had the misery. I was sent to a urologist the NHS was busy so I got a top consultant who did lots of tests all simple and quick. He suggested DMannose and vagifem. As I could not take HRT anymore due to womb thickening due to HRT which went back to normal when stopping HRT

D Mannose is expensive but you must take it every Day I kept forgetting after a while and yes I got an infection. Infections are not always picked up on the ordinary tests. Which is dangerous. I get my D Mannose in a pouch from Amazon and you can also get urine analysis sticks from there and I get Vagifem from GP. I have to use both every day. So I hope you get sorted and can have a relaxing sex life

Iam64 Wed 17-Jul-19 08:46:39

Vagifem did help me until I had a bleed and had to stop taking it.
Never heard of D Mannose, will google it.

Lazigirl Wed 17-Jul-19 09:10:57

D Mannose is a type of glucose I think, and there seems to be some evidence that it can help. It may stop bacteria sticking to bladder wall. If you are diabetic you should have medical advice before using as it may disrupt blood sugar.

Iam64 Wed 17-Jul-19 13:37:03

I googled and found its sugar Lazigirl, so agree with you, it may disrupt blood sugars.

dahlia Wed 17-Jul-19 15:28:01

When I was pregnant I had cystitis, and this recurred for about 20 years until I had a hysterectomy. After this the problem seemed to resolve, though I did drink daily cranberry juice, and plenty of water. I also confess to using wet wipes following using the loo, I suspect these may have kept my nether regions extra clean! It is such an awful problem, not life-threatening but certainly life-changing! Good luck to all of you who are suffering.

mrsgreenfingers56 Wed 17-Jul-19 15:57:36

Very interesting the latest posts on the D Mannose as I have just been on it for about 8 days now and things a bit better. When I saw the Dr. who ordered blood tests they phoned back yesterday to say my blood sugar levels are higher than normal and now wondering if it is the D Mannose from the latest info from ladies. Have to go and see the nurse and have this double appointment booked at the Drs.

Bordersgirl57 Thu 18-Jul-19 20:01:56

Message withdrawn at poster's request.

mrsgreenfingers56 Fri 19-Jul-19 18:08:41

Will let you know Bordersgirl57 re the blood sugar level as appointment coming up soon with Doctor/Nurse. See what they say.

Franbern Sat 27-Jul-19 10:38:35

Very fed up. After all the problems when I started my latest UTI infection, with being put on ab's to which I turned out to be allergic, then change to different ab's at hospital.
Finished that course last Sunday, then on Thursday afternoon ínfection started again. Must say, that the ab's the hospital gave me did not seem to hit this infection as I would expect them to. But for three days I did feel better.
Had follow up appt with Nurse at GP Practice on Friday morning, and she confirmed urine infected again. Has given me double strength ab's this time, which really worked quickly.
However, I am now being referred to a Doctor for some proper checks as to why I am repeatedly getting these.
At the beginning of this year I fractured my spine in a fall, and although it has improved expedentially, I am still getting very bad back pain on standing or walking - Doctors are checking this out, saying I might have done some other damage in that fall. However, I am now wondering if they are missing something with my kidneys, so am going to try to get them to refer me for some tests for that.

Franbern Wed 21-Aug-19 16:37:05

After four lots of anti-biotics in five weeks, with little or no improvement in this UTI condition. I sent a letter to my GP surgery asking for referral to hospital. Problem is that UTI's are dealt with by a Health Care Worker, who tests for infection and then gets AB prescription signed by a doctor.
Should think that with these being so continuous for so long, there should have been something in her procedures to have sent to a GP.
Anyway, upshot has been, that I handed the letter detailing the continuous problem and some past medical history to the receptionists on a Monday morning -she said she would give it to the senior female partner at lunch time. Phone call that afternoon to say urgent referral being made to urology department at local hospital with a copy of my letter.
Phone call within 48 hours giving me an appointment at hospital a week later. Internal photos showed lots of blood and a tumour in my urinary tract. Have now attended for a pre-op assessment, going Saturday for Ultrasound, and then wait to be sent for for a TURBT procedure to cut out all or most of this growth etc.
Shows how important it is to be pro-active and not just be too patient.

WOODMOUSE49 Wed 21-Aug-19 18:00:14

I'm in late 60s and a new marriage (3 years now). I had same symptoms during sex and having had cystitis for many years in my 20s I was worried. My cystitis was due to a kidney problem. I later had the kidney removed.

However this time, no inflection. Doctor said it was a PH imbalance. I did a bit of research and this fitted my symptoms. I had a fishy odour as well as the stinging etc. The medication he prescribed solved it. Wish I could remember but it was a few years ago.

Good luck. It's miserable.

sharon103 Wed 21-Aug-19 18:29:02

I totally recommend D Mannose. I've used it a few times and bought it from Amazon. A bit expensive but worth it.
Sugar free cranberry juice can be bought from supermarkets.
I don't know about others but I find that stress can bring on what feels like a urine infection. I've recently had two tests done and both came back negative from the hospital and glad to say the D Mannose came to the rescue.

clementine Thu 22-Aug-19 17:49:18

Franbern, I hope your surgery goes well, my goodness, that should have been picked up on long before this . As you say, it's up to the individual to be proactive with their own health.

DManoose is useless unless your UTI is due to E Coli infection.

Vagifem is excellent, as many recurrent UTI's are caused by lack of Oestrogen and Vaginal Atrophy.

Venus Thu 22-Aug-19 18:01:04

My samples also came back negative. I saw an urologist who prescribed Vagifem twice a week and a low dose antibiotic every night. That seems to do the trick.

Franbern Sat 24-Aug-19 18:18:14

My operation/procedure will take place on 11th September. NHS is brilliant - cannot believe how speedily they have reacted.

StMary Fri 30-Aug-19 11:01:36

Hi ..D mannose only works if your urine infections are from E coli infection..i have had urine infections for years , some times every month ..so i take care + Potassium citrate mixture in a bottle , not the powder one,for the burning when you wee or that awful feeling when you feel like you want to pee .. this can be bought online from a chemist .. don't pay through the nose at Asda Chemist it's twice the price .. I take 1000 d mannose 1, 3 times a day and when i feel it's coming on i increase to 2 , three times a day ..i buy F Max 5 from Ebay or their site ..I know lots of women swear by this product ..

GabriellaG54 Fri 30-Aug-19 22:08:52

You should always wipe front to back NOT back to front.