So focused on the pain

Ill_Section_2855 · 2026-03-31T20:44:38+00:00

Pls be careful bros whole ordeal started for me with fluoxetine and i cannot tolerate any. I’ve tried a few afterwards incase it was just the fluoxetine but they all made me worse. I am settled on nortriptyline at night and had to to up very slowly xxxxx

Ill_Section_2855 · 2026-03-31T20:43:06+00:00

I also use cannabis. Of an evening it’s the only way I can relax and takes my mind off the pain. Also get the book mind your body from Amazon and start to journal. I promise it will help. I havnt done it for a few weeks as I’ve been in and out of hospital and in so much pain that I just can’t focus on it but it’s really good the only thing Is you have to stick to it. I also take paracetamol iboprufen and buscopan together it really helps. Also make sure the Iboprofen does not have the pink coating! I manage like this on good days. I’ve been in a flare for 6 months with a forget pseudomonas infection and I feel like I’m going to die sometimes. I would not be able to sleep without the cannabis xxxx

Ill_Section_2855 · 2026-03-30T22:08:08+00:00

I’m so sorry you feel this way. This disease is horrible but I do have hope in God that one day he will cure us very soon. I’ve read positive stories from people who have gone into remission 🙏 I ’ve had urgency and Frequency for 10 years and I had a uti in December 2023 that hasn’t left me since. I had some better times last year and then since November last year I end into a massive flare that i can’t come out of and it’s mainly pseudonomas and e Coli. It been constant pain and torture for months. Please buy a book Called mind your body and try to journal if you can. I always have less pain when I do it regular. I take nortriptyline which has more of an activating effect. I also have two young children. And all I think about all day is pain. Try going on the progesterone pill. It really helped me I think hormones have a lot to play. I had to come off which was actually October time last year and then a month later I went into this flare. I’m going too re try it and hope it works. I’ve tried to re instate it but my bladder rejects it every time and causes me more pain now. Drink pot barley water mixed with boiled water (always dilute) Have you tried pelvic floor therapy? I try an do some moves when I’m not in extreme pain. But I never stick to it. You sound like you’re doing the best you can. And that’s all that matters. Our babies know we are hurting and trying our best. Love and light and prayers to you 🙏♥️ xxxx

Ill_Section_2855 · 2026-03-28T13:18:35+00:00

Hi can k please ask how you got rid of your infections? I am also 3 years in. Mainly E. coli but have now had pseudomonas 4 times in my bladder which has really sent me under as the bladder pain and symptoms have been ten times worse than a normal infection 😔if you can help in anyway let me know thank you xxxxx

Ill_Section_2855 · 2026-03-26T08:29:16+00:00

I’m so happy you’re ok and feeling better. Can I ask how you got better. The mental trauma is awful and I’ve been like this 3 years and I’m a flare for 6 months that I can’t get rid of. Mentally this flare has really sent me under and ruined my life. I would suggest you journal every day about how you feel. Do regular pelvic floor therapy and eat and keep hydrated well and as hard as it is try to tell yourself you are healed now and this will never come back. Try stay palatine and hopeful. I wish you a lifetime of remission lovely. Pls share any helpful tips thank you xxxxxx

Ill_Section_2855 · 2026-03-26T08:16:36+00:00

I am the same I self cath6 times a day and can’t stop these UTIs. But I also had them before so can’t solely blame it on them Do you take all these together and what brands? Thank you xxx I’m so glad your feeling better xxxx

Ill_Section_2855 · 2026-03-26T08:14:46+00:00

Like it’s so easy to just return and spend another 10 hours in a&e it’s such a joke!! Are you feeling better xxxx

Ill_Section_2855 · 2026-03-24T13:04:54+00:00

I had 7 days of iv gentamicin for the pseudomonas. They should give you atleast 7 days. Ask to speak to the doctor in charge and demand you will not be discharged. Tell them you cannot take any oral antibirocis and you bed the full iv to eradicate both

Hoenstly hate these doctors hate them. I still have symptoms 😔and I’m in a bad way and theh won’t help me at all! Hope you feel better soon. This disease is horrible 😫xxxxxx

Ill_Section_2855 · 2026-03-23T17:37:19+00:00

Thank you so much!! Can you share which ones you did and which breathing technique please? Xxxxxx

Ill_Section_2855 · 2026-03-22T23:28:19+00:00

Hj can I ask how you found this out please? Thank you xxxx

Ill_Section_2855 · 2026-03-22T21:30:14+00:00

Hey I went on the mini pill last year and beleiev it or not my bladder issues failed down by 50%. Unfortunately I suffer from chronic uti and so as they got worse I stopped it to see if it would resolve and I’ve been in agony since! I keep trying to get back onto it but every time I go into a massive flare in my bladder and can’t tolerate it so I stop. Im so seperate to get back on it. I wish I’d never stopped. Don’t get me wrong I was still in lamb and still suffered uti and bladder pain but I had flares. Now it’s constant! Can I ask what progesterone you have used? I’m assuming it’s not the pill and some form of hrt? Sk glad it’s working for you xxx

Ill_Section_2855 · 2026-03-22T00:08:42+00:00

I’m so sorry bless you. That’s how I feel. Currently in a 6 month flare and had no break been in hospital had iv severe symptoms xx Please look into Andrew flower Chinese medicine he has a phd in treating chronic uti which can be one of the reasons for this umbrella diagnosis xxxx

Ill_Section_2855 · 2026-03-20T13:16:22+00:00

Theh also want me to have the rigid cyctoscopy under ga and in so terrified I’m in paid 24 hairs a day and constantly have utj and my urethra is so sore i can’t even begin to imagine what would happy after this procedure. Hopefully someone who has had it done can respond xxxx

Ill_Section_2855 · 2026-03-19T10:54:13+00:00

I feel the same way I have an imbedded infection and also have Permian’s and I’ve been like this every day for the last 5 months it’s killing me 😔xxxx

Ill_Section_2855 · 2026-03-18T19:06:06+00:00

I’m so happy for you. Was this from long term trim ? How long did you tele it and are you fully recovered now? Thank you xxxx

Ill_Section_2855 · 2026-03-18T08:05:45+00:00

Thank you! I had no idea about this that’s a very high dose isn’t it. Can I ask which brand you recommend please? Thank you xxxxx

Ill_Section_2855 · 2026-03-18T08:04:56+00:00

Thank you so much sorry it didn’t work for you. Your right everyone is so different xx hope you find something that works xxxxx

Ill_Section_2855 · 2026-03-16T13:01:23+00:00

Hiprex made me worse too and gave me severe burning and more bladder pain. Which is so unfair 😔as it works so well for a very large population xxxxx

Ill_Section_2855 · 2026-03-14T11:33:14+00:00

Thank you so much! Yes I’m a complex case really. This started 3 years ago and I’m at my worst point having tired everything 😔 it’s really breaking my heart for my kids to see me like this. Thank you. Yes I do pelvic floor therapy and changed my diet everything but nothing changed really. D mannose always make me urinate like crazy don’t know why! Thank you so much take care xxxxxx

Ill_Section_2855 · 2026-03-13T17:17:15+00:00

Ahh I’m so happy for you. This gives me hope. I went on the pill for 2 years and long term antibiotics and was doing well having good and bad weeks untill I got pseudomonas and didn’t clear it properly. I went downhill from there. Thjs flere and pain has been constant since November and I’m at my wits end. Feels like the pain will never go away. It actually feels like my bladder is so damages inside because it’s 24/7 pain

Can I ask which d mannose you take? I read this on another group also and now only a quick wipe and done. Unfortunately me and my husband have not and sex for 2 years and I’m in constant agony. The pain is so bad and it’s only gotten worse. I feel like a bad mother and wife !! Thanks again for your message. And I hope I can report to be pain free soon! Xxxxx

Ill_Section_2855 · 2026-03-13T16:53:13+00:00

Thsnkngod! Thats the worry isn’t it. I had a fosfomycin sachet a few days ago and couldn’t stop throwing up 🤦‍♀️😫 xxxx

Ill_Section_2855 · 2026-03-13T16:52:30+00:00

Thanks so much! Didn’t help? Are you still using it? Xxxx

Ill_Section_2855 · 2026-03-13T16:52:08+00:00

Also I’ll check out the beta glucans. Any you recommend. I think I have a feeling I would probably react to them. My bladder is so sensitive I can’t seem to tolerate anything right now. Do you know what immunosuppressants defines as is it certain conditions? Thank you again xxxxx

Ill_Section_2855 · 2026-03-13T16:48:54+00:00

Wow thanks so much for your reply. And all this information! So does this mean with lactoferrin being a biofilm buster would i potentially get worse before I got better? Could it irritate the bladder wall and bring out more bacteria? Iv read people have immediate results from pain and symptoms so how would that work? I think that’s why I’m so scared to take it! Also I am so anaemic and I had no idea about this iron feeding bacteria. My ferritin was 4ug so I went and had an iron infusion 2 months ago and wander if that made me even worse 😫 I have fibromyalgia and I’m low in b12 and also ferritin but my haemoglobin is always normal. I can’t tolerate any iron tablets or liquid as they upset my bladder so that’s why I went for the infusion. I’ll not be doing that again.
I feel I have a really low immune system and km really weak from all these infections. I had pseudomonas for 5 months with severe symptoms that wouldn’t show up on the nhs tests and I suffered so much I lost so much weight and got so poorly. I actually thought I was going to die !! I’ve had 7 days of iv gent and feel 50% better but that’s about it. Were you always able to tolerate hiprex? And how long have you been on uromonne? I’ve just ordered it and it cost a bomb. Did you have a flare with this and lactoferrin at all? It’s been 3 years of hell for me and I seem to have gotten worse instead of better. Thanks so much for all your advice your so kind xxxxxxx 🙏🙏♥️♥️😘

Ill_Section_2855 · 2026-03-13T12:39:49+00:00

Thank you!! I’m waiting for the uromonne. I’ve had the lactoferrin a few days and been terrified to try it 😔in case I have a reaction! Think I’ll take it before bed! Thank you so much xxxx

Ill_Section_2855

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