Interstital Cystitus in Remission by roselavender ..... Interstitial Cystitis Forum
Date: 9/5/2012 10:30:28 AM ( 9 years ago ago)
Ok Guys. Im gonna tell my story and share all my research about Interstitial Cystitus, a Horrifying, HORRIFYING disease, it feels alike a curse from God,and I promised myself if I cure myself Im gonna share with the world, maybe this is why this happened to me.
It started 6 months ago, in April after a sexua| relationship that only lasted a couple months. The guy slept around, with less than savory people. However, I have always been prone to UTI's since having my daughter 6 years ago. But taking a probiotics everyday, sometimes twice a day, (Femdophilus, Jarrow brand) awesome stuff, always kept UTI's away. I hadnt really had a problem with UTI's in the past 2 years since I startted taking this stuff, the only time I had a problem, is when I was sexually active and missed a few days or doses, than I would immediately get a UTI.
This Happened again, in April, I missed a couple days, got lazy and was at the same time, sexually active, and got a reeaallly bad UTI, very severe, to where I went to the emergency room in pain. Got a scriipt for Cipro, no big deal, worked great for me before, but this time, it didnt work, then I went back, got another script, did nothing, then I knoew I was in trouble.
I love to do the natural route first and try to avoid Antibiotics when I can, and I started on all my natural stuff but none of it was working. all the things that were failsafe for me before wernt even touching this and I was in extreme pain. I broke it off with the guy I was seeing, cuz sex was impossible ofcourse. I went to my family doctor,gave me 10 days of Augmentin, helped me get out of bed, and function again. By the end of the script, I felt alot better but still didnt feel cured.
Then. They started NOT detecting bacteria in my Urine, and thats where the nitemare really begins. I couldnt get anyone to help me, and they said I would have to see a Urologist. I saw a Urologist here locally, and he said I would have to be tested and diagnosed, and I REFUSED to do those horrible tests as the pain I was in, it was completely out of the question. He said I would have to go on Elmiron, I was devastated.
Meanwhile I did TIRELESS research on the internet. Tireless, tireless research on the internet.
I had, had many UTI's before, but this felt different. It felt constant, It was buring, and spasming, and I would "wake up in tears" as they say. AFRAID of the day, knowing it meant pain. It was insane.
I figured my life was over. I knew my life was over. Sex was over, (not that it was ever great for me anyway, as I also have Vulvodynia) (but thats a whole other story)
I read ALOT about Diet. Many, many women claim to get positive results by changing their diet. But this meant, no acids, no sugar, no fruit, nothing spicy, nothing fried, no curry, or cheesecake, no dairy, basically, brown rice, steamed vegetables, and nuts, and nut Butters, with no fat, WHAT???!!! No sex, No more eating the food I need and want, plus I am very poor, and, my life has been a struggle up until this point anyway, and Im not young, it was so unfair, and so horrible. Any kind of pleasure in this lifetime, in this body, was gone,and over with forever. without question,as women live with ths for years, so I faught. And I prayed to GOD. I got down on my knees and prayed, and my Mother prayed with me.
Tomatoes, and spicy foods did affect me, but I somehow knew intuitively this was bacterial, even tho I did question if this was a physical problem. I used to drink apple cidar viegar alot, for the health benefits and also straight to cure UTI's in the past. I figured I DID INJURE my bladder with these things for awhile, but when I took the Augmentin, I felt so much better, I just didnt get a high enough dose, or wasnt on it long enough? So, was it really bacterial????
Up until now, I had no idea a disease so life ruining and crippling existed, or that I could get it, and so easily and unexpectedly, it was crazy. There were times when I couldnt even think, couldnt balance bills, or make a shopping list the pain was so distracting. I couldnt understand how this could not be a bladder infection of some kind. My entire abdominal area was swollen,I wondered if I had cancer.
I eventually made my way to Cleveland Clinic. She tested me for STD's, also informed me, surprise, surprise, no bacteria in my Urine. She said shed do a broth culture and get back to me in a week. She later informed me I had ureaplasma mycoplasma. and prescribed a z pazk, she said the bacteria, (which is not normally considered an STD, and rearely tested for, cuz it is expensive, difficult to test, and also, EVERYONE, I guess somewhere between 40 to 70% of people have this bacterium in their urogential tract) has been linked to non specific urethritis, or painful swollen urethra. Breakthru!! OMG!!
The medical community is split on this issue as many doctors feel it is a part of the normal flora for eveyone, and cant possibly cause problems, but then again, your not born with it, you get it thru sexua| contact, and most sexually active people will aquire this at sum point in their lifetime. However, Ureaplasma is linked, to infertility, miscarriage, and interstial cystitus. Any good fertility specialist will test for it, first thing. Especially if you have a history of early birth or miscarriages.
This also could be a cause for Vulvodynia. My LIFELINE struggle with vaginal buring pain, and yeast infections that NOTHING SEEEMS TO CURE. since I lost virginity at 22, Ive had a constant vaginal infection, low to high grade. Its a wonder I got pregnant, but i spent my lifetime tryin to control this issue with oils, and herbs, so I can function like a normal women with out a burning, afflicted, vag, but interstitial cystitus was different. The pain was so unbearable, and sex so completely impossible aswell as even holding down a job, fergitaboutit!
So she gave me a mere Z pack,a nd I took it, and guess what, i felt better than ever, felt almost nor,al again, but then, once I finished the Z pack, it came back. and she wouldnt give me another one, unless I went down there and retested for it, which was impossible as Cleveland was outta town!
Thru reasearch I figured out that Mycoplasma is hard to cure and requires, strong, and long term Antibiotics to cure, as it is so small, and stubborn. As I haunted the feertiltiy boards on the web, I read numerous posts of women retesting positive over and over again for Ureaplasma, and having to take atleast 2 sometimes 3 z packs to clear the infection. husbands too.
So I got desperate, I got creative, as I was so close to a cure! I went to the emergency room, and lied and said I had a bacterial sinuc infection and they gave me another z pack. Too it, felt EVEN better.,
But it was still there, so I eventually went back to my family doctor and BEGGED for a scriipt of z pack, instead he gave me 2 weeks worth of doxi at 100mg twice a day, morning and evening. Doxicycline.
Harsh, harsh antibitiotics, but it works. I read that azithromycin, and Doxi, are the only things that will be effective for Mycoplasma, Ureaplasma.
2 weeks, and Im still in pain, and there were nights where it was extreme, and I wondered if either I wasnt getting better, or I was Herxing?? But the next day, i was better, and my flares less and less, so I presevered. He upped my dosage by the end of the second week, to 400mg a day, 200mg morning and evening. Altho, it harsh on my physically, I was tired, slept all the time, gained wieght, headaches, felt bad, and also got a terrible sunburn, I felt almost cured, but by the end of that 2 weeks, I started having really cloudy urine, and it seemed the pain was coming back. So 4 weeks on Doxi, felt better int he beginning, feeling worse int he end, scared it was coming back, the doctor gave up on me, and told me to go back to the urologist, I had incurable interstitial cystitus.
Now, Ive always had cloudy urine, for years and years even when I didnt have a current infection, everyday, but this urine was so cloudy in the morning, you couldnt even see the bottom of the toilet bowl. and it smelled really bad, and I never had a smell like that.
After getting off the doxi for about 3 days, I was in tears, it had come back full force,a nd all my hard work,a dn time, was flushed down the toilet (literally, lol!).
I ended up in the ER, and long story short, I got a scriipt for macrodontin, or nitrofurantoin. 100mg every six hours, about 3 or 4 times a day, for 10 days. Within 45 minutes of taking the first dose, I was better. so much better, it was like somthing released, and the cure I was praying for for so long, that would literally save my life, was finally happening. After the ten days the pain, was gone. But I was scared i hadnt been on long anough,so my doctor gave my a scriipt for six refills. His argument being, that Nitrofuratoin(Macro) is normally used to PREVENT Bladder infections after intercourse, at 50mg a day. However, you can use it to cure UTIs, as well, so i tool another ten day dose and 100mg every six hours and Im in remission now.
The Doxi seemed to cure my chronic vaginal vulvodynia, as that feels completely gone, and my vagina hasnt felt this normal since I was 20 years old. But the bladder thing weasnt gone, the Macrodantin cured that. Crazy huh? Did I have some kind of Antibiotic resistant UTI???
Whatever it was it put me on the poath to cure for my Vulvodynia aswell, something I thought Id have to live with, the rest of my life.
What Im doing now, to make sure this doesnt happen to me, ever, ever, ever again. I will never, ever, miss a dose of femdophilus. and I am also taking D mannose, atleast 2 teaspoons everyday. (D mannose wont let bacteria cling to the walls of the bladder) and from what I read its the most efective preventative for bladder infections for alot of women. Also, Lugols Iodine is also gonna be incorporated into my daily regime as a preventative measure.
God did this , no one else. I was doomed. My life was ruined, it was Evil and Horrible. I almost feel I dont deserve this cure, this miracle.
I give credit to God for curing me. God Bless you guys,a nd I Love you all, hope this helps
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