Nothing seemed to shift the pain and urgency to urinate - I was drinking tonnes of water and people advised me to take cranberry juice and barley water. I have since found out that cranberry juice is terrible for UTI's as the high sugar content feeds the bacteria!! If you want to try cranberry, it's only a prevention not a cure and it would be best to stick to the cranberry extract in tablet form to avoid the sugar - it is thought to prevent bacteria from sticking to the bladder wall.
I have lost count how many times I took time off work to go to the doctors/out of hours clinic but I was eventually referred to a consultant at the hospital. A million different appointments and tests later, after a failed Urodynamics tests (they found my urethra too small to catheterise - maybe due to swelling or something in the way - a lump or cyst perhaps? They weren't sure), I was put forward for a Cystoscopy under general anaesthetic. I had to wait 6 months for this on the UK NHS - the deadline for the appointment passed so I had to chase constantly and was miserable with the pain - a great way to have spent my 30th birthday too. When I eventually went for the op. they dilated my urethra and all they found was that my bladder was "inflamed". 3 months later and I'm still waiting for my follow up appointment to discuss their findings.
Since the Cystoscopy, I have to say my symptoms got worse. In July 2010, I had another bad UTI which lasted 2 weeks and quite frustratingly ruined my holiday with family for my 31st birthday (which was meant to be my escape from all the health misery). Went to see lots more doctors who were absolutely shocking and no help at all - I was made to feel like a time waster and a hypochondriac. i was given more anti-biotics - this time Macrodantin which again was fine the first time I was prescribed it but the second time, I had a terrible reaction to them - they affected my lungs, I had fever and vomiting. I was then given Cefalexin..........during my holiday of misery, after the Cefalexin ran out, I was still massively in pain. I couldn't eat as this made it worse and I lost half a stone of weight in a week. I was also getting migraines all the time too. The pain was both in my bladder and particularly my urethra - I stopped walking as exercise because this made it worse, I stopped eating spicy food, tomatoes and citrus fruit as the pain following these foods was horrendous. Alcohol in the form of spirits seemed to actually make things better which is strange - I stuck to things like brandy and lemonade if I really wanted to drink..... wine was occasionally OK but dicey. Beer was usually out of the question. It's best to steer clear of alcohol altogether really and caffeine.
It was at this point I decided to do tonnes of research since UK doctors didn't have a clue and no sympathy what-so-ever and decided to go down the herbal medicine route. It was the only way I could feel less helpless and frustrated.......
I have come to the conclusion that I either have a mild case of IC (I don't want to insult people that get it really bad by saying that's what I have - I do think I only have it mild compared to some if that's indeed what it is) or the cycle of bladder infections and anti-biotics have completely stripped my bladder of all it's natural defences and left it raw thus making it more prone to yet more bladder infections - the cycle cotinues. I need to rebuild (and maybe you do too...?) the mucous lining in my bladder and rebuild it's defences.
In July, I began taking the following:
Marshmallow Root tea - tastes and smells gross but works at soothing and coating the bladder lining/urethra. I found the best way to drink it is to add boiling water, leave it to cool completely, strain it and drink cold (quickly!)
Uva Ursi tincture - mine includes eccinecea and a couple of other bit and bobs but I actually do think this helped clear up my last cystitis infection when anti-biotics failed - I don't think you're meant to take this for very long as they Uva ursi berry is toxic and xan damage the liver - I take it when I feel that the pain is more like a bladder infection or when I need an extra boost
Gokshura & Shatavari - I currently take 2 tablets 3 times a day and will continue with them for just 2 months as they advise. I wouldn't take these together with the uva ursi as they both are diuretics.
Bovine Colostrum - I have been taking these for about a month now and they are apparently better in capsule form - it's meant to be a good immune system booster (contains "good stuff" from calves first milk)..... I'll keep this up for a few months I think - hopefully they'll help rebuild my bladder lining as they're also meant to have healing qualities - none of this is proven though but I am trying anything!!!
Potters Antitis (UK name?) - I have only jut got these yesterday - I wouldn't take them at the same time along with the other diuretics mentioned above again, I think I will start taking these when the Gokshura treatment has ended but they have tonnes of great herb specific to urinary issues and are meant to be a Godsend when you have a UTI.
I've heard liquorice is good for healing the bladder so I have some of this tea on order to try and I also have Floradix Horsetail Organic Herbal Tea (may support the urinary system) and Fsc Gotu Kola Extract Tincture (meant to aid healing - this is another one to be wary of though a it's another which if you take too much, you can damage your liver)
I'm also currently taking cranberry tablets to attempt to ward off new infections and multivits with probiotics.
I also bought a self-help book - The Encyclopaedia of Cystitis, Sexual Cystitis and IC - I can't remember the exact title or author but she has some very good tips - the first aid tips involving bicarbonate of soda for when you have cystitis is particularly good. I'm trying to keep up with the "bottle washing" and it seems to be working - the bottle washing after sex is particularly good as it really does stop the burning sensation.
This may all sound crazy and excessive but for those who are truly suffering, you'll try anything!! I know how much these things can destroy your life!! I was depressed and stressed and although my partner has been very supportive, cracks were beginning to show after such as long time of being ill!!
I am amazed, delighted and excited to say that for the last 3 days, for the first time since my Cystoscopy, I have had long periods in a day where I have very little pain at all!! Is this the end of misery??????? I will not be seeking anti-biotics to treat any recurring infections unless there's blood in my urine or back-ache. I will stick to gentle herbal methods in future to avoid damaging things further - need to be careful though that infection doesn't spread to the kidneys.
I would definitely recommend doing plenty of research - be sensible with herbs and make sure you check out all the warnings before taking anything. Be particularly careful when taking lots of these things together as most herbs go by different names and could therefore be in several different treatments without realising - I'm not a doctor but I'm sure that overdosing on these things would not be good!!!!!!
I am hoping that this is the start of my recovery!! Can't believe I barely have any pain today!!!!! I wish everyone the best of luck - and be patient with the herbal remedies - they take a while to work (and cost a fortune!) but it could be worth it in the end - time will tell!
I read your message with interest as I have been dealing wtih horrid anti-biotic resistant bladder infections for years now. My doctor says he has never had a patient with a history as bad a mine.
One thing that is really helpful for UTI's that result from e'coli is D-Mannose. It works wonders and has no side effects.
I recently tried uvi ursi for the first time. I was concerned because of its toxic nature and the serious side effects, but it did help. All data I have read says not to take it more than 4 -5 times a years and never longer than 4 days. I plan to stick to those guidlines as I can't afford to trade one chronic condition for another.
I do want to share a treatment that is available and should be used all over the world. It is phage therapy. Phages are viruses that attack bacteria. They were used extensively prior to 1935, but with the advent of antibiotics, reseach and usage dropped. Now the primary means of obtaining this treatment is through The Phage Therapy Center in the Republic of Georgia. I went there for treatment. I had an infection that was totally antibiotic resistant. They cured it in three weeks. I continue to take the phages and they definitely are helping. For UTI's, it takes awhile for the treatment to truly cure you without reoccurence, but it does miracles. It is wonderful for cases of staph. It isn't inexpensive, but it works and the docotors there are wonderful. I was at the end of my rope prior to going there as I had run out of options for treatment. You may want to look into it before your infections get as bad as mine have been.
I have been reading up on what foods to eat, supplements to take, etc. to help IC. I have suffered much with IC. I also have been reading about Colostrum. Some say it helps but some seem doubtful about it. I also have read be careful what kind of colostrum you get and where you get it from (I have read there is always possibly of getting Mad Cow Disease from it if it comes from a bad source). Also it is quite expensive. I wonder what kind of colostrum is best and does it really help?
I hope you're staying well.
fellow IC sufferer
what is interstim implant i have ic and it very painful and the sensation to pee is horrible
Your story sounds much the same as mine. I am taking Bovine colostrum high IG and the research i have done on it is heartening. I am also having accupuncture,I've only had a few sessions so far and have been told I will need to give it some time before i will see the benefits but I've read on the internet of many IC sufferers who have completely healed over a period of several months so there is hope out there! x X
Thank you Pickletron !! I was diagnosed in Summer 2006 and since then have slowly lost everything. Your article was enlightening to read. My Boyfriend found your article and told me to take notes, as I am. Thank you so much for sharing your story and if you could, please email me your latest health update?
would love to hear the good news !!
I'm so glad my post helped and fingers crossed you find something that works for you! Since writing my post, I no longer take any herbal supplements and things seem to have calmed down a lot (famous last words).
I began seeing a specialist not long after writing my post and was having weekly bladder "injections" - this is where the doc inserts a catheter to administer a new drug into your bladder (called Cystistat - they have a website). This was the only thing really that definitely had a positive result. I could feel the drug cooling my bladder instantly. It was a while ago now but I seem to recall having 6 weekly treatments then every other week for a while. I then had to have a second Cystoscopy in winter 2011 as my urathra had become so small that they could no longer catheterise me. The second Cystoscopy was much better than the first - quicker recovery and the Consultant told me my bladder was no longer looking red and inflamed.
I felt great for a few months after but then had a bladder infection in March 2012 - I was given antibiotics.
Then the new problems began - I became pregnant the same month - March 2012 and was monitored regularly for infections due to the pregnancy and my history. They found I tested positive for Group B Strep (by accident as they don't routinely test for Strep B in the UK during pregnancy) and advised that it had caused a Group B Strep bladder infection. I was prescribed antibiotics but it didn't clear it up first time. After a second course of antibiotics, the ante-natal consultant decided to give me low dose antibiotics for the rest of my pregnancy.
I had my daughter in November 2012 and was fine again for quite some time until now - I've just been told I have another Strep B infection and even though I'm not pregnant they wanted to give me antibiotics as it was causing symptoms (more like thrush however - hadn't had any cystitis symptoms for a long while). I am now wondering whether the Strep B has been the issue all along? I'm not sure whether there's any point speaking with my GP about it as they don't seem to know an awful lot about the problem? I am now unfortunately experiencing a burning sensation in my bladder again and urgency issues - I am pretty sure this is due to the antibiotics however and can't wait to finish them. Nasty things.
In conclusion, if you can be referred for Cystistat, it's amazing - really sorted me out. Took a few weeks but worth hanging in there. I didn't even mind them inserting the catheter etc - any embarrassment or discomfort was completely worth it and the results outweighed any issues.
I will continue to cut out alcohol, caffeine and decaf tea (tannin) from my diet plus I've recently read that it helps to take probiotic supplements and to cut out sugar as much as possible from your diet too.
Fingers crossed the painful bladder goes away again once I stop taking pills.
Good look and fingers crossed for you!
Makes me feel so much better to know I am not the only person suffering from this. I am 23 years old (female) and have had a couple of UTI's a year since I was 18, one which became a kidney infection. About 3 months ago I got a really bad UTI while travelling in Indonesia and I haven't been pain free since. After 5 courses of anti biotics and 6 reoccurring infections I have turned to herbal remedies to try and ease the constant pain.
My pain feels like its just in the end of my urethra and is like a tingly, sore feeling the entire time, the only time it eases is when I am physically passing urine. My urine samples are showing no infection and I don't have a STD. My GP just told me that it will get better on its own, but it isn't
I am now taking D-mannose, probiotics, urinary tract pills, pro biotics and multi vitamins. The only liquids I drink are cranberry juice, green tea and water. I have been doing this for a month now and it in fact seems to be getting worse.
I am usually a really outgoing, fun loving person but I don't even want to leave the house anymore because of the pain and constant need to be near the toilet.
If anyone has any other remedies or ideas of what could be causing this I would really appreciate it.
Hi BelisabethH I completely feel your pain I really do and the symptoms sound so similar..... it really puts your life on hold and causes such misery. I was sure it was about to ruin the relationship with my husband. Awful. And going anywhere/ The first thing I'd do is check where the toilets were and make sure they're always close by. I think it's about 4 years or so now since my problems began. I can honestly say that things are so much better now - I still don't drink alcohol, limit myself to one cup of tea a day and have a pint of water by my side all day but I'd say 95% of the time now I'm pain free. In my experience, I was best steering clear of all the herbal remedies - I really don't think they work and in fact, they may make symptoms worse. I'm still taking probiotics when I remember but that's all. The best thing that worked was the Cystistat treatments on the NHS. Please Google it and then ask your doctor to refer you. It was an absolute life saver and I'm not sure where I'd be without it. I had the 6 weeks of treatment and then 2 weekly for a couple of months. I then had to have another cystoscopy as my urethra became too small again for the catheter and then since then, no more treatment and no herbal remedies. It gradually got better from then on - I really do think that herbal stuff just aggravates the condition... be brave and try to go as long as you can without it and try not to go to the loo until you really know you need to as I think that doesn't help in the long run - I think it just makes things worse. Have you also been tested for Strep B? I've recently had a baby and was tested positive for Strep B - I am wondering whether that also caused problems as that can cause bladder pain and bladder infections in rare cases. Anyway BelisabethH, please please please hang in there - your bladder will need time now to recover from all the infections and antibiotics - it's had a rough time bless it - try give it a break - eat healthy, stay clear of too much sugar and try cut down on the herbs. It'll probably take time but you'll get there. Big hugs x
PS. stay clear of cranberry juice - it's full of sugar!