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Note to self: next time don't freak out...

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  • Note to self: next time don't freak out...

    I had a months long IC/PFD/atrophic vaginitis flare because I quit taking my Estrace cream (for atrophic vaginitis) and as a result I got a UTI - then the REAL "fun" began.

    I'm post menopausal so what happened to me is more likely to happen to an older person and I don't believe in taking any prescriptions, etc that I don't absolutely have to. Unfortunately, trying to get over a flare the "natural way" can be time consuming.


    I have moderate IC but without the typical cramp like pains. My bete noir is urge/frequency. Also burning and stabbing pains in my urethral area and very bad constipation with occasional diarrhea. (I have had ulcerative colitis for 10 years and take Asacol every day.)

    To make matters worse I stressed out as I thought I was long past flares (hadn't had one in years.) I have bad anxiety and 'am always at risk of my emotions running wild over some issue that I obsess about. As a result I tend to not sleep, lose weight - walk around looking like a cadaver and worry all day and night. This time I lost 15 lbs, last time 25.

    I developed a fear and loathing about going outside and stayed home for almost 4 months except for going to church, rides in the car and few times out to dinner. Surprisingly, I was able to have white chocolate martini's every now and then which were very relaxing. They were made with potato vodka. Any other kind of alcohol, wine, etc - made things worse.

    Even after I began taking the Estrace again it took months to get better. I thought I would never be better again. Note: Don't think like that. Halt all negative thoughts as completely unproductive and stupid!! I found out that it can take up to 6 months to replenish estrogen receptors. (I quit taking Estrace last spring it as I didn't think I needed it anymore and I am not big on taking hormones.)

    I found that these things helped me get over my flare:

    Resumed daily exercise. I'm a runner and I had quit as I thought it made things worse.

    Drank more water (Evian) than I ever drank even though it made me go more often - when I went it was pale in color and non burning (!!) so I believe it helped my poor tissue heal better. Two big swallows every half hour from the time I get up to about 9 at night. It works best for me to spread it out like that

    Meditating daily plus simple yoga routine.

    Eat simply. Find out what works and keep at it. I found that a simple pasta dish with olive oil and mushrooms, potato bread and a few veggies (carrots) worked well for me for dinner so I ate it every night until I got better. For lunch I would have a tofu dog with olive oil and whole wheat bread. Same thing every day. For breakfast - oat bran with raisins, hot water and maybe a slice of whole wheat bread with olive oil.

    Important to get your sleep!! I found that if I took one lemon balm capsule before I went to bed I would sleep pretty soundly and only have to get up a few times (at worst 3-5 times) during the night.

    Drink hot water in the morning. Its relaxing and it will help you have a BM. This is critical. Don't allow yourself to get constipated as it will make everything worse.

    Most important message to myself and anyone else is - try to relax and DON'T stress out if you can possibly help it. Just say that "well, I have a flare. I will survive it as I have in the past. What doesn't kill me makes me stronger. I'm not going to die over it. I will do what ever I can to help myself including prayer and relaxation tapes, long walks, simple eating according to the IC diet, etc and try not to let it completely disrupt my life. Try to read, relax, go out as much as I can and just ride it out without my nerves exacerbating things and, therefore, making it even worse.

    A few critical things I forgot:

    To reduce stress and stop over all muscle tension do slow, deep abdominal breathing. I count my slow, deep breaths up to 300. Can greatly reduce those painful urges to urinate.

    If the urge is strong remember to be sure you are breathing through your nose and not doing "mouth breathing" which is common among anxiety sufferers.

    Watch posture. Be sure you are standing tall and not slouching on the bladder. The latter happens when tired or anxious or depressed.

    When its really annoying - stick your butt out. It takes pressure off pressing on the bladder. Also, use an organic cotton pad inserted between the labia which breaks any chafing/irritation. If that area seems dryish - spray lightly with Vitamin E oil *Equaline from CVS.

    Don't forget good old baking soda for urge and or burning. Plus Urelle if its REALLY bad.

    Showers, not baths. Loose pants, comfy shoes (with a low heel are good to offset PFD discomfort.) Keep up with your appearance, i.e. go to the hair stylist more often, treat yourself to some new clothes, makeup, etc to cheer yourself up.

    Keep in touch with friends but don't be telling them you don't feel well. Sometimes its best NOT to talk about your troubles.

    3/3/11

    As this is a work in progress - I wanted to add one more critical thing - the importance of the "pour bottle" for women of a certain age who have atrophic vaginitis.
    I can't begin to emphasize the super necessity of protecting the super delicate genital area tissue. Acidic urine is our worst enemy. It can burn, or in a more subtle way, erode the tissue which leads to all kinds of burning, chaffing, stabbing, pinching type problems
    I use an old Evian bottle. Mild, warmish water poured directly over the urethra while urinating is very soothing and mitigates the acidic urine.
    I think I will carry an empty Evian bottle with me forever and just fill it up whenever I need to "go."
    Last edited by izazen; 03-03-2011, 03:33 PM. Reason: Wanted to add a few things to my "success story."

  • #2
    Glad to hear you can tolerate tofu. It is soy after all, which causes problems for many ICers. Good for you! Maybe too much of that instigates the flares. And don't care what anyone says, even postmenopausal gals get monthly symptoms sometimes. Our bodies are locked in such a rythym, and our minds are used to that "certain date" every month even years later. Have you tracked it to see if those flares do come then? Just a thought. Jill, wife of Bob

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    • #3
      Awesome post! Thank you.

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      • #4
        I am post-meno, too, and if I cut back on my dose of Estrace Cream, I get a UTI. My Uro told me that oral HRT will not usually be enough to keep everything healthy down there. Thank God for Estrace Cream.

        I wonder what poor women in third world countries such as Ethiopia do if they have IC. My heart goes out to them. I am so thankful to live in the U.S.

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        • #5
          Thanks for the compliment! I went back in and went over it today to add some "goodies" I'd forgotten.

          Tucker's mom- I could kick myself around the block and back for ever stopping that cream. I live in dread that one day I won't be able to get it!! I hate to be so dependent on it and wish there was an EFFECTIVE natural solution.

          What I can't believe is all the women I know my same age or near it who DON'T have a problem "down there."

          How come they are so lucky???

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          • #6
            Izazen, for whatever the reason, some women don't even have a clue except for the cessation of their monthly cycles. I don't know what it is that makes the difference. I don't like to think of having to use this cream for the rest of my life, but if I even drop to 1 mg. instead of the 2 mgs., I get a UTI.

            Thanks for editing your post and adding those helpful ideas.

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            • #7
              Its very frustrating that none of my same aged friends can relate to what I (we) go through. They look at me like I'm a nut if I describe my symptoms and feelings. Like its all in my head. Aaaarrghhh!!

              My husband is the only one who understands what I've been through - that and the wonderful women on the ICN who have kept me sane many, many times.

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              • #8
                I got quite goosebumpy when I read your posting, you could be me....you even have a similar way of talking/writing to me, our stories are identical. I found that most of my problems went away when I was put on oral HRT, I had stopped it due to my mistguided overworked and disinterested doctor, and when I changed doctors he nearly had a fit and put me straight back on it, said HRT or hormones are responsible for keeping so much healthy down there. By the way I am in the UK not the USA and really envy you all the research and resources you do have. We are not too badly off, but our doctors still have a hard time accepting IC at all.
                You know I woule be prepared to bet that women in etheopia etc dont even get IC - want to know why....they are not pumped full of antibiotics, junk food, fizzy drinks, caffein etc...like we are. IC is a modern syndrome, because lets face it, we proberby put more rubbish into our systems than anyone has ever done in the past. Seems unfair that only some of us suffer the consequences, but hey ho, at least I have my looks
                Like you I prefer to go the holistic wayl, my sypmtoms are exactly like yours, can go for a month or more feeling absolutly fine, but let me try one thing off the IC diet and I am back in trouble, but then at least I know what causes it.
                My mantra is to make the most of the good days, and when the bad days come, just keep calm, and as our local army regiment say "Stand firm - Strike hard"
                Every time things start getting tough, I just put on my Big Girl Pants and get on with it

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                • #9
                  Capey, you're probably right about women in third world countries. They have a basic simple diet, most likely with no additives. Still I don't think I'd trade places with them, even if it meant I'd be cured of IC.

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                  • #10
                    very helpful post. I copied down some of what you wrote so I can remind myself when i start freaking out out later tonight when my poor husband gets home. For some reason when he comes in, I lose it. I look at him and think,"What is our life going to be??"


                    wife, mom to three, theater professional
                    diagnosed- "mild" IC Feb 10, 2011
                    symptoms started on and off Nov 2010
                    urgency, frequency, general bladder discomfort,itching, and other nasty feelings
                    I am going completely holistic with herbs and diet to heal

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                    • #11
                      I can't believe even after I wrote this "thesis" that I had a little backsliding last week. Don't know what caused it - could have been the tiny cup of coffee I was sneaking for a few days in a row, or a new herbal anxiety concoction my TCM doc came up with OR it might have been the rush, rushing I did that morning (went for daily run but added on to it at the end to make it to the movie theater for a 2:30 movie.)

                      All of a sudden when we got to the theater - I had to "go" - ok, no biggee but during the movie I had to go again and then after it again and on the way home again.

                      Uh oh! I knew what that looked like!

                      I tried HARD not to freak out! I recalled something I read that IC'rs either get the pain or the urge. I'm an "urge'r" and the only thing that gets rid of the urge for me is several hours of good sleep. A heating pad is good,too and both are ideal. So I went to bed early and got up the next day - no more coffee - and had a big cup of hot water with 1/2 teaspoon of baking soda. I tried to remain calm and do my running, yoga and meditating and, luckily, I haven't been bothered with Mr. Urge since then.
                      I've been a little tweaky when I get anxious like when I'm out in a crowd but I'm doing better every day. I just have to remember to keep that lower abdomen loose.

                      I don't know what triggered it that day but maybe it was a good lesson for me not to be so over confident. No more coffee or crazy rushing! Slow and steady wins, too. One day at a time, girl!

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                      • #12
                        Such wise words !!

                        This is sooo true, I find when I run around and get stressed I feel much worse. I leave for work at 06:30 in the morning and dont get home until 18:00 at night, rush around all day, fight with people on the phone, my boss is a bully of the first order, I hate my job and only do it because both my kids are students (aged 26 and 30 - who should be out working but arn't) and I look at my life as one huge stressball.......
                        Added to that for the past 3 months we have been renovating a flat as an investment so every weekend was spent up to my eyeballs in plaster and copper piping, paint and newspapers, the weather has been foul and we have been short of cash (thanks to this new flat) - I live on a narrowboat and that inolves carrying a bucket of coal every time you want to light the fire, carrying cassetts and emptying them as this is the only form of loo, being frozen in over Christmas, having a monumental row with my revolting Irish mother in law who I swear has put some curse on me and I need to decide if I am going to commit to an Honours year at the Open University where I have been doing a part time degree for the past 5 years.

                        Anyone surpirsed I get a bit antsy now and again....wanna swap for a few weeks
                        Every time things start getting tough, I just put on my Big Girl Pants and get on with it

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                        • #13
                          Wonderful post izazen!

                          I am not a post menopausal woman, but there is invaluable information for IC'ers for all ages that you've listed...

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                          • #14
                            Thanks, Lonely Sole! Just speaking from the heart. I've been through heck over the past summer, fall and winter and a lot of it was due to stressing out and anxiety.

                            Sometimes I wish I could take a pill and just zone out but then I keep thinking about all those web sites with "side effects" and I think , Oh Lord - things could be worse.

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                            • #15
                              Capey, you certainly have your hands full. My life is bland next to yours.

                              You are probably many years younger than I (66) am I right? Just cleaning my house and doing my exercise routine fills up my day. Along with about a zillion hours on the internet, of course!

                              I'm Irish American so what is wrong with your MIL? LOL! Too bossy and opinionated? I can relate to that!

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