its been awhile I know but this winter has been a hard one between my husbands problems and the damn weather, covid etc. Anyway; I was having Pelvic Floor Therapy with my physiotherapist and boy did that really help my I.C. so glad I went. Have even found that I can now enjoy things like tomato and chocolate as long as I don’t go overboard with it. My new problem is what I believe to be Litchen Sclerosis I have terrible irritation over most of my body especially in the vaginal and anal areas. Hoping to get it verified soon although from what I have read there is no cure because they don’t know the causes just use of creams to ease symptoms. Wondering if anyone else suffers from this irritation too.
Happy New Year to all here’s hoping it is going to be a good year for all and with the help of vaccine they will get Covid under control.
The end of 2020 was particularly bad for me with one UTI after another sometimes with only a weeks break in between I have had to do the full spectrum of antibiotics, which I don’t like doing because it so interferes with the natural bio of the body. I am still doing the vaccine against the bacteria that causes UTI’s and just praying that it will kick in and start working for me (like I have said before it could take up to six months to be affective).
I just bought some pumpkin oil seed to try because I seen on one of the I.C. site that it is suppose to help but, I think I am getting a rather bad allergic reaction to it, don’t know if it’s interacting with the rest I take or the vaccine but yesterday I broke out in rash all over and had to take Benadryl for some relief, so I have stopped using it for now anyway.
I am always on the look out for more information on anything that may help with the I.C. Next week I have another appointment with my physiotherapist and hopefully she will be able to do more to help me because of the constant infections she hasn’t been able to do much other than offer exercises which do help.
Till next time take care, stay safe, and hopefully we will all have a wonderful New Year.
Hi everyone sorry it’s been awhile since last I wrote but been dealing with constant UTI’s there’s been 5 in the last 6 months; so I was picked to take part in a clinical trail for Uromune with Dr. Curtis Nickel here in Kingston. It is a vaccination against the top 5 bacteria causing UTI’s and although called a vaccination you actually put drops under your tongue. I started this on the 16th of October and you take it for 3 months and then followed for a year to see how you make out with the vaccination. During this time so far I have had no side effects with the vaccine. I had a UTI at the very start of program and I now have another. While talking to Dr. Nickel’s nurse practioner this morning she informed that because of taking the vaccine in small measures it takes up to 6 months even to take full affect and that it is showing that those living with bladder wall pain are getting ease from the pain. So I am praying that this will be the case for me and that these UTI’s will stop.
Dealing with Covid lockdown and not being able to walk regular or go for rides because of all the UTI’s and the affects of them it has really brought me down and I’m having a very hard time dealing with everything. Doing my best right now to get into the spirit of the season and especially trying to count my blessing for the good things in my life which first on my list is my husband who is always so supportive of me even though he is dealing with his own disabilities of COPD and Arthritis. I always try to keep in mind those so much worse off than myself, those dealing with other diseases along with I.C., those with Cancer and more; along with those front line workers that are dealing with Covid 19.
I wish everyone the best of the season and keep you in my prayers, hope you have a very Merry Christmas in spite of lockdown and send out big hugs to all.
As I have told you in the last month between UTI’s and a massive flare up I have been in total misery and not getting any sleep. Well I finally went back to my CBD oil I have been taking 4 drops in my tea in the morning and after supper at night and also started Aloe Vera so finally between the both although I think mainly because of the CBD I have reduced my pain significantly and been able to get a decent nights sleep.
Just to update on things; I went for my Cystoscope yesterday but unfortunately was unable to have it because they think I still have an infection. Getting really tired of all the infections I have had so many since last year. I have to go back now in about two weeks. One interesting thing I learned yesterday and I believe this is new so for those of you suffering like me with recurrent infections I would ask about this: there now is a treatment that covers the 5 most frequent UTI infections , it is taken orally under the tongue over a short period of time and will help stop the infections. I am hoping that they will give that to me or put me on a low dose antibiotic for a longer period of time.
I am now looking forward to the 22nd of this month when I finally get to meet face to face with my Pelvic Floor Therapist and I hope that there won’t be any infections stopping me from this. I will keep you all updated as to how things are going as they happen. Stay safe everyone and stay well I always like to say nothing lasts forever so we will keep the faith.
It saddens my heart to learn the statistics for I.C. deaths; but certainly understand with all the terrible pain we suffer (some way worse than others) why it happens. We need answers badly to prevent anymore of this happening. I know there has been some big breakthroughs lately but, there are still those doctors out there that do not understand or even know anything about I.C. My own doctor case in point; He told me himself he doesn’t know what is going on with I.C. and therefore don`t know how to treat me. so basically I am pushed aside. So I think it is up to us to put the word out there which ever way we can to make the world and these doctors aware. I know more about I.C. then my family doctor does which to my mind is very sad I have to educate him on what is happening.
In closing all my best wishes and prayers go out to my I.C. brothers and sisters.
well 2020 has been a miserable one mostly so far; At the start of the year I was doing really good my I.C. seemed to be so much better and undercontrol; then I don’t know what happened things started going to pieces.
Apart from Covid restrictions which I handled ok my I.C. restarted up big time. Another UTI. The first time I went to the hospital 🏥 they said I didn’t have an infection so went home trying everything to treat it like a flare and nothing was working. Couldn’t get hold of my doctors office and was really suffering so thought of my naturopath who had tested urine samples before for me and thank goodness I did because has she put it I lit up the board. Went back to Hospital and they confirmed UTI and put me on Cipro right away because they were worried about my kidneys having suffered this over a two week period. I also had what I thought was cold sores on side of my mouth so checked on that and the doctor said no not cold sores but a sign of low blood count. Previously I had tried to give blood as usual but they wouldn’t do it because they said my blood was low. Anyways started to feel a bit better with the Ciprofloxacin but my bladder symptoms didn’t completely go away. I also had an infected gum in my mouth that was sending pain up into my ear. I treated that myself and got it under control.
Well managed to contact doctor with over the phone appointment and explained what was going on about my blood and that I had visited the E.R. with UTI. It was the resident and she sent me to have my blood checked. Results came back that almost everything was ok except my RDW was high which means some of my blood cells were larger than normal and should be checked for underlying disease or infections. Never heard anything back from doctor. Then because I was still suffering with my bladder I asked to get my urine tested again. Results came back from that: 1) Escherichia Coli: The urinary (not systemic) interpretation for Cefazolin can be used to predict susceptibility to Cephalexin(Keflex) for uncomplicated UTI. Two organisms seen in culture; second isolate is of doubtful significance and also says Ciprofloxacin Resistant. once again no comment from doctor.
So really getting fed up with getting no info from doctor and I am still suffering and getting very little sleep in process. I will be having a Cystoscope on the 8th with my urologist so don’t know what that will tell because the last ones showed my bladder had no uclers. I have been video conferencing with my physio therapist that does pelvic floor therapy at the hospital and she is very nice and being as helpful as she can and will finally get to meet in person on September 22nd really looking forward to that and hoping she can help me.
I have been seriously considering looking to change doctors but not sure if that would solve any problems as I think part of the problem with my doctor is he knows little to nothing about I.C. and also I am so sensitive to Medications that he doesn’t know what to do for me and therefore; I’m kind of getting ignored.
At present debating with myself whether to go back to emerg. and show them the lab results as well or try and tough it out until I can meet with my urologist. I was supposed to have had a follow up appointment with him on Sept. 17th but that has now been cancelled until October 30th.
Well unfortunately for me I am once again in a nasty flare after a few months of being great. Not sure what brought this on it could be that I was not being as careful as I should with my diet, but another thing I am pondering on is my use of Premarin and is it causing my flare. I have been doing some research on it and even talked to Jill Osbourne on IC network about it and she did not have a good thing to say about it and from all I am reading on it beside the fact of what they are doing to horses to make it there are an awful lot of side effects with it and it is causing flare ups in some women. So I am going to look into alternatives hopefully some natural ones to replace it.
I have already told you about the Lichen Sclerosis that I was diagnosed with well happy to report that with the cream prescribed for me I am doing much better with that.
I am feeling optimistic at the moment and a little excited I finally am talking to a physiotherapist who does Pelvic Floor therapy. Right now we can only video conference because of Covid 19 and she has given me breathing exercises to work on until we can meet together face to face. I am really looking forward to that and hopefully getting some good results from it. Also, after a phone call with my urologist I will be going in early September for a Cystoscope and examination to see if there has been any changes with me. So fingers crossed that these things will help and make things better for me.
Have a great day and take care of yourself.
Well as if I haven’t got enough to deal with having I.C. Today was given a diagnosis of Lichen Sclerosis another disease that effects the vulva. The irritation is almost unbearable. They say that wearing incontence pads or panty liners but in my case that’s something I can’t avoid. Been given a prescription cream to use twice a day. I’m wondering if anyone else with I.C. Is suffering from this, will have to pu t the word out there and try to find out.
After putting word out on the IC sites and talking to my nurse practioner is seem’s there are more than a few people with this disease so it looks like it could be another part of the I.C. story. I feel so sorry for anyone suffering with this I was told I’m in early stages but was shown pictures of it in later stages and it looks terrible. I think the Taro-Clobetasol cream I have been prescribed is starting to work. Thank God after 2 years of trying to find an answer and suffering with this I finally have an answer.
Well thank God I have not gotten Covid 19 and I pray all my friends and anyone reading this is staying safe and practicing all the necessary rules.
I was doing really well there for a little while then I started suffering some of the symptoms of my I.C. again mostly the burning and irritation and getting up more at night again, There for awhile I was actually able to sleep for up to 4 hours at time and a couple of times actually slept through the night. I have so many questions with my IC and the cause of my problems. Last time I had a scope done it came back that my bladder was looking normal; if this is so then does that mean I can eat the things I love without suffering and its something else that triggers it. I know Stress plays a big part and I truly believe all the years I lived with the stress of living with an Alcoholic played a big part in my getting I.C. After reading “Breaking through Chronic Pelvic Pain” I know that I have had many of the things happen to me that could explain why I suffer but it is so expensive to go to a Pelvic Floor therapist I just can’t afford that and unfortunately since I have retired I can’t even afford the monthly cost of the natural medications I used to take.
One of The worst thing of all I have been suffering with in the past couple years is the terrible irritation I have. I have asked the doctors and have gotten no real answer what I can do, to what is causing it, and what I can do about it. I was given some cortisone cream by one to use which helps a little. I have tried everything I can over the counter without much luck and from what I understand you shouldn’t use any of them long term. I wish someone could give me an answer because it is literally driving me insane and I am so sore. I figure some of it is due to Menopause and dryness but I do use a vaginal cream for that. if anyone out there is reading this and can give me an answer I would be forever grateful.
Well that is enough of my complaining for one day; Hope you all stay safe and well out there and keep practicing your social distancing and hopefully this will be all over some day soon.