Its been a while since I posted, I am currently doing a degree so don't have much internet time on my hands (unless it revolves around Shakespeare or Linton Kwesi Johnson). Anyhow, I recieved an email from my fellow ICer (who we shall call B), B was very upset because she recently went onto the forum where we both met and found it has now turned into an overly controlled and unrealistic environment which moreso than ever focusses on the medical profession as the answer to our problems....this is not so!
Like myself B has found that various lifestyle and dietary changes have made the WORLD of difference. I don't know about her but I am now 100% pain free most days, I get the occasional bout of 25% pain (usually lasting a few hours or less), the odd day of 4% pain and a few niggles now and then. This is a massive difference compared to my months of daily pain at about 75% and bad days of 90-100%. I haven't cried on the toilet for about 3months. In this time I have had no days in bed nursing my poor bladder unable to face the day, no days going to the loo every 10mins, no days where my bladder feels like its on fire. I can do things like go for long walks/run/swim/cycle without any pain, sometimes if I push myself too far then my pelvic floor muscles tense up and I get some twinges but relaxation soon helps that to subside.
I feel like a new person.
If I were to list all of the things I have tried to help myself in this situation I would be here for hours. But here are a list of things which have helped me tremendously...
- Taking my diet right back to basics - brown rice, eggs, meat, green veggies, water, peppermint tea (I did 2 months of that and have gradually started introducing things back, starting with vegtables one at a time, totally avoding any kind of processed foods or additives)
- Drinking 1/4 of a teaspoon of bicarb when in pain
- Probiotics (Natren 2x daily)
- 2litres of water per day
- Castor Oil Packs
- Changing ALL body products to ones with 100% natural ingredients (including sanitary towels, deodorant, soap, shampoo, moisturiser etc)
- Bowen Therapy
- Homeopathy (Histamine 30c, Causticum 30c)
- Coconut water
- Stopping taking the pill, stopping using condoms of all sorts (I had tried in the region of 50 different brands and all of them set my bladder off)
- Relaxing my pelvic floor muscles conciously, deep breathing focussed relaxation
- The Better Bladder Book by Wendy Cohan
- Writing poetry
- Talking to others going through similar things - this has helped me BEYOND all else, without the support and kindness of various people I have spoken with I would not be at the stage I am at now, there are people out there who unknowingly have given me the determination and strength to say 'I can get well, and I WILL get well.'
Take Care
Love
little_ducks x
This is B here, so saying wow thanks for starting this up. I was really dissapointed to see the degeneration of what was a very positive and cheerful forum, the COB forum is now quite negative and seems to only promote conventional medicine. Litte Ducks and I met through the forum and I can honestly say that thanks to her input and friendship, I have now been 99% fine since November of 2010. I have moved from feeling suicidal, desperate and alone with this awful problem to feeling that life has begun again.
ReplyDeleteI followed a completely natural path, and since October last year have not touched an antibiotic, a pain killer or an anti inflammatory. I started with accupuncutre, herbal teas (Redbush is the cure-all for me) diet and water. I temporarily followed a wheat and grain exclusion diet which seems to have been the turning point for me. Even though I have now re-intruduced these foods I have still been fine.
I even took the step of refusing medical intervention when it was offered. I just did not want to mess with what I felt was a winning formula.
Well done Little Ducks here's to a great blog and lets hope many more visitors.
:) I am really glad I found this blog. I am 23 and just finishing University so I know what it is like to fight this battle along with school. I some how managed to keepit all together and will be graduating in June. I have alo come a long way since my symptoms started in Nov 2010. I think I do have a long way to come though, but hopefully I will ge there. Gives me hope that you feel better! I have done alot of the same things you have with elimination of foods to stopping the pill...I wanted to ake the natural root as well, and for the most part have been with the exeption of Elmiron. I would like to eventually get off this med, imnot even sure if it is working yet, but I wanted to give my bladder as much help as I could to start healing. So I hope I can ask you questions! :) The ICN netowrk has been really helpful, but its always god to talk to someone your own age with similar experiences etc.
ReplyDeleteQuestions:
---Do you still pee a ton( I still go ever 30 min to an hour and I HATE it)
---Do you feel |normal most of the time
---Do you constantly have that feeling of neding to pee 15 min after you go (this is the worst)
---Have you found another form of birth control or have gone back on the pill that doent big your bladder( I really would like to go back on BC pill).....
I also have the Better Bladder Book by wendy cohen, and I have just ordered aling the healing path by catherine simone, I am hoping this helps me further!
Thank you for writing this blog, and please continue to write!!!!!!!!!
Jinny Jean
Hiya,
ReplyDeleteI read several times many posts in the COB forum and I tried to post in the forum that there are natural solutions other than traditional medicine. But unfortunately I have been always banned from the responsible of the forum.
I am distributing a very good and efficient product composed of natural elements only and I wished all the women based in United Kingdom to be helped because I know what those pains with cystitis mean.
In United Kingdom and Ireland this problem which is affecting 20% of the female population is not so seriously faced and as a matter of facts I wished to do something more to help women.
The product is called Ausilium made of d-mannose and morinda citrifolia better known as Noni.
Have a look at www.bestfromnature.com
and I do hope to be back with you soon.
Little ducks you are eventually doing something very good and hope you are better now but please should you ask me any further information do come back with me
Bestfromnature
Ec
info@bestfromnature.com
Thrilled to see this post from you! We were in email correspondence for a while but I stupidly lost your details. I'm having a rough few days but reading this has made me feel a lot more positive. If you do have time can you drop me an email (my initials HL)...I'd love to hear more about how you've got yourself so sorted!
ReplyDeleteHi Little Ducks,
ReplyDeleteI am 22 and a recent graduate. I have had problems with my bladder since my teens and it has gradually gotten worse over the past few years to the point of being unbearable. Two years ago I had a cystoscopy and a bladder stretch. After the procedure the doctor informed me that I had signs of interstitial cystitis and gave me an information sheet that explained how a strict diet may help. This is the only help and information I received and as you can imagine I was highly dissapointed. The procedure left me in agony for about a week afterwards. I stuck to the strict diet for a few months following the procedure but only found a slight difference in my pain/frequency etc.. so decided that it wasn't worth continuing. Whilst living and studying at university I found it so disruptive to have such a strict diet to follow as I couldn't socialise with my friends whenever it involved food or drink (which was a lot of the time!) I now receive monthly treatments at the hospital as an outpatient where dialurel is inserted into my bladder via a catheter. It is a natural liquid that is intended to form a protective lining around the bladder wall therefore relieving painful symptoms. When I first began having this treatment a while ago I did notice temporary relief but as time passes it's almost as though my bladder has become immune to the treatment. My symptoms are now returning and I am beginning to get extremely down about my situation. It is so hard to go about normal every day tasks and go to work when you're in agony and every slight movement feels as though it is shaking your bladder like a rattle. I did a 9 hour shift at work this week and had to go to the toilet ten times. It was a nightmare and it is driving me around the bend. It is especially painful when I am due on my period as obviously it is more inflamed but I can't cope with the pain anymore. It's such a sensitive and personal subject that I hate explaining it to my work colleagues etc.. and I am sure people become suspicious about you going to the toilet ten times during one shift! I am at a loss of what to do, I take solifenicin a muscle relaxant daily and I take sodium bi carb with water when I am in agony like today but when I am having a severe episode such as now, nothing seems to provide relief. I am sorry to bombard you with all this info I was just relieved to find a forum where other people are going through the same thing as I don't know anyone who has this condition other than myself. Any advice that you can offer me would be greatly appreciated.
Thank you,
Anonymous.
I am so miserable tonight. I have not been diagnosed with IC but do believe I have it. My diabetes causes urinary infections which really complicates things. I am so tired of going to doctors and being in pain that I sometimes feel suicidal. I have fought this for years. The longest I have gone with no pain is 2 months. It really hurts to urinate and I believe my left kidney is now involved. I have been told I have urethal stenosis whicj causes me to not completely empty my bladder and tests have shown that my bladder does not completely empty. I have been put on Rapaflo but have seen no change.
ReplyDeleteConsidering going to a urogynecologist. It's miserable to be me. I am 62 years old and am getting tired of fighting this thing. I think it's a matter of finding the right doctor something I have never been able to do.