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Original poster

UTI nightmare…need success stories

135 replies

Rochyella84 · 02/01/2023 08:46

I have had a chronic UTI for 2 months now. Short courses of Macrobid have helped but it comes back within 2 days each time. Trimethoprim didn’t help at all. I suspect a chronic/embedded infection and am waiting for an appointment with a specialist.

I am currently on a 2 week course of Macrobid and I have also started Hiprex and still symptomatic. My only symptom is urethral burning after weeing which can last several hours. I take d mannose regularly too.

On the chronic UTI Facebook group I’m on there are so many disheartening stories of people on long term antibiotics for years and still suffering. I keep thinking surely there must be people who need more than a weeks course but manage to shift this thing with something a little stronger and longer.

Im just feeling hopeless and need to hear something positive.

OP posts:
Bigtitsbetty · 25/04/2023 16:14

I had chronic UTIs for years and then had a urethral dilation and have not any problems since.

SinisterBumFacedCat · 26/04/2023 18:44

Signing in. I have had this problem for years. It now constantly sting/burns all the time. I take antihistamines, drink only water and 1 coffee a day (1 treat, will probably have to knock that on the head) no alcohol, I use ovestin and the internal peseries every night, and hrt patches. In the words of my dr I am doing everything right. It used to get triggered by sex, now it’s triggered by breathing. My urethra looks like there are bright red streaks around the opening, but apparently it looks normal to anyone who examines it! It’s getting progressively worse, spent a lot of today at work trying not to cry because of the pain.

Atmywitsend23 · 26/04/2023 20:14

Just replying in solidarity today @SinisterBumFacedCat! Was told by a GP today that embedded UTIs don’t exist, there’s no need to be on long term antibiotics and I wasn’t that ill when hospitalised as I wasn’t septic! Also spent most of today trying not to cry! It’s so awful isn’t it 😢

Original poster
Rochyella84 · 26/04/2023 20:41

Hi, I’m the OP and want to update as I’m now in the clear. I was so sold on embedded infection. I was in so many groups and surrounded by such negativity and I truly believed I had this infection I couldn’t beat. I took a LOT of drugs to try and beat this thing.

I’m now pain free and medication free and 100% now believe this was a mind body issue. I realise it sounds insane, trust me, I thought the same at first. But it’s true. I started to wonder how much my mind could be impacting on my symptoms and decided to explore. I found the curable app and from there the podcast Tell Me About your Pain. From there I found Nicole Sachs podcast and her episodes with ladies with my EXACT issue. And I listened in utter disbelief to it all. About how so many types of chronic pain are actually neural pathway pain and stem from viewing symptoms through a lens of danger. And then I started to do some work on it myself and in the space of a week things began to improve. It’s 2 months on and I am almost pain free. The mind is so powerful - I get occasional burning and tingling and all I need to do now is to tell myself that I’m safe, that this isn’t something that needs to concern me, and it goes. Since then I’ve discovered so many women the same who are also finding a way out. Again, I realise how crazy it sounds. But I’m happy to share specific resources with anyone interested if you want to DM me.

OP posts:
Original poster
Rochyella84 · 26/04/2023 20:45

I’m actually embarrassed reading back my own thread as I now think embedded infection is probably exceptionally rare and most of the women in that group I was a part of actually are on antibiotics for no reason and are just like I was - nervous system in a permanent state of fight or flight can create a whole host of symptoms. But anyway….a learning experience for me.

OP posts:
Temporaryanonymity · 26/04/2023 20:57

My UTI developed into sepsis so I’ve been looking for us as much info as possible to avoid future UTIs.

I spoke to my GP this month as I had another and she’s asked me to try a vaginal oestrogen pill. I’ve been on it now for a month (I also take HRT) and it seems to be making a difference.

Fluffycloudsblusky · 26/04/2023 21:04

What I thought was continuous Utis - had three sets of antibiotics - was actually and overactive bladder.
i had many symptoms - needing to urinate frequently, small amounts, pains. But cultures were always clear. I couldn’t understand it. Like the Op I was so worried I had an embedded uti.
thankfully my gp referred my to a urologist. She scanned my bladder. Told me it looked very healthy. Then a catheter which showed my bladder was overactive and that was the reason for the uti symptoms. Tablets prescribed and it has changed my life. Now it’s possible a uti triggered the overactive bladder. But now with these tablets - which I took for 3 months - I am pain free and even better my life isn’t rules by needing the toilet!

LancashireSquirrel · 26/04/2023 21:04

I@Rochyella84 that's unbelievable! I'd love you to share some of the resources with me please, OP.

Original poster
Rochyella84 · 26/04/2023 21:10

LancashireSquirrel · 26/04/2023 21:04

I@Rochyella84 that's unbelievable! I'd love you to share some of the resources with me please, OP.

PM me, I’ll send you the things that helped me. I really believe in this stuff and I would have laughed in your face if you had suggested it to me in when I wrote this post.

OP posts:
LancashireSquirrel · 26/04/2023 21:39

@Rochyella84 I have done Smile thank you.

Atmywitsend23 · 26/04/2023 22:46

Thanks so much for updating OP! You might well be on to something in my case, I have PTSD so have a VERY overactive nervous system! I’d be so grateful if you could share some of your resources. Did you also find temporary relief with antibiotics? That’s what’s convinced me it’s an embedded UTI but perhaps not if you can have the relief without infection

Minierme · 26/04/2023 22:54

I had years and years of this. Went private for another issue (fertility) and was on estrogen and the problem disappeared overnight.

Original poster
Rochyella84 · 27/04/2023 06:39

Atmywitsend23 · 26/04/2023 22:46

Thanks so much for updating OP! You might well be on to something in my case, I have PTSD so have a VERY overactive nervous system! I’d be so grateful if you could share some of your resources. Did you also find temporary relief with antibiotics? That’s what’s convinced me it’s an embedded UTI but perhaps not if you can have the relief without infection

Of course, PM me and I’ll send some stuff over.

I got some relief from antibiotics but not fully. I think probably because they reduce inflammation and also some element of placebo effect too. I got much more relief from calming the hell down 😂

OP posts:
SinisterBumFacedCat · 27/04/2023 10:01

I’d love to be able to calm the hell down but I can’t even walk right now due to pain.

Original poster
Rochyella84 · 27/04/2023 12:41

SinisterBumFacedCat · 27/04/2023 10:01

I’d love to be able to calm the hell down but I can’t even walk right now due to pain.

I honestly get it. It’s horrific and I’ve been there. This worked for me and a lot of others too. I hope you get relief.

OP posts:
Atmywitsend23 · 27/04/2023 15:43

Thanks so much OP, I’ll send you a DM later today. I’ve been given another course of cefalexin and overnight have went from being in agony to pain free. The issue seems to be that as soon as I stop them, the pain comes back. This is the only antibiotic that works but no GP will give me a prescription longer than a week.

Tra06 · 06/05/2023 15:02

Hi OP- could you please send me more info? I have the exact same issue. miserable.

@Fluffycloudsblusky coyld you tell me which medication you went on? And did you just take 3 months of it and now you’re fine?

Fluffycloudsblusky · 06/05/2023 16:05

Hi it was an anti bladder spasm medicine. I forget the exact name. But my bladder was telling me it was full when it wasn’t. This medication stops this feeling and retrains the bladder.
Hope you can find a doctor to help you

SinisterBumFacedCat · 07/05/2023 16:02

Is anyone else completely pain free during your period, then it comes back as soon you stop bleeding? I am 3.5 weeks of chronic pain/stinging/burning and about 5 days of peace a month. I’m 47 and dreading my period stopping.

weegiemum · 07/05/2023 16:51

I had continued utis, pyelonephritis and kidney stones in and after pregnancy. Was pretty grim, I was given the usual antibiotics but I react badly to trimethoprim and nitrafuratonin and ended up on long term Cipro. Constant thrush because of that didn't help!

Time in the end was my friend, but 2 years after my last pregnancy (dd2 is now 19) it all suddenly resolved.

I'm still prone to a uti, in fact I've had one this week. The biggest help has been really focused cleanliness I think - I shower 2ce a day, and also after sex. I also drink huge amounts of water - 8 pints/4 litres a day, to keep everything moving along swiftly! I can't bear the thought of going back to peeing every 15 mins to get nothing out!

I hope you get an answer to your issues, it's the most debilitated I've ever felt, and I have a neurological disability developed later in life, that doesn't restrict me as much as uti did!!

Atmywitsend23 · 07/05/2023 21:01

@SinisterBumFacedCat I had the opposite problem throughout my teenage years! Every time I got my period I would get UTI symptoms. Have always been prone to UTIs but this specifically turned out to be cytolytic vaginitis. Might be worth looking into that! The only thing that helped me with this was coming off the pill

SinisterBumFacedCat · 10/05/2023 09:48

Mine has got so much worse now, it’s gone from being ok in the morning and building through the day to constant and unending pain. I ended up in A&E but they could only give me numbing gel (doesn’t work) and antibiotics even though my urine is pretty clear. I am waiting for gynaecologist to ring me but they can’t see me. I’m drinking only water, barely eating, can’t walk properly anymore and I’m so scared I am going to feel like this for the rest of my life.

VioletCharlotte · 10/05/2023 19:34

SinisterBumFacedCat · 10/05/2023 09:48

Mine has got so much worse now, it’s gone from being ok in the morning and building through the day to constant and unending pain. I ended up in A&E but they could only give me numbing gel (doesn’t work) and antibiotics even though my urine is pretty clear. I am waiting for gynaecologist to ring me but they can’t see me. I’m drinking only water, barely eating, can’t walk properly anymore and I’m so scared I am going to feel like this for the rest of my life.

If you can afford it, I would book in at Harley Street. I think it's £250 for a first appointment, but it was the best £250 I've ever spent. I suffered for years with UTI's and saw numerous urologists. Long time antibiotics were life changing. I took them for 18 months, now on Hiprex only.

It makes me so mad that so many women suffer with this, yet Drs refuse to accept embedded UTIs even exist.

LancashireSquirrel · 10/05/2023 21:43

SinisterBumFacedCat · 10/05/2023 09:48

Mine has got so much worse now, it’s gone from being ok in the morning and building through the day to constant and unending pain. I ended up in A&E but they could only give me numbing gel (doesn’t work) and antibiotics even though my urine is pretty clear. I am waiting for gynaecologist to ring me but they can’t see me. I’m drinking only water, barely eating, can’t walk properly anymore and I’m so scared I am going to feel like this for the rest of my life.

What did your GP say?

How old are you? Symptoms like this can be perimenopause and sometimes Vagifem or similar can help.

LancashireSquirrel · 10/05/2023 21:45

@SinisterBumFacedCat I've just seen your age further down.

Could be something similar to this?

www.londonwomenscentre.co.uk/conditions/vaginal-atrophy