me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I've noticed several posts about interstitial cystitis lately. Although some of this may be repetitive for those who have read similar things I've posted, I'm adding new things and putting more info together for IC sufferers on this post.
I suffered from severe, and I mean severe, IC for at least 3 years-- Prolly more like 5? Who knows. My doctor and pelvic floor therapist said I was the worst case they had ever seen. I found out years later that a gynourologist I saw and a nutritionist I saw presented my "case" at a P.U.R.E. Hope (Pelvic Pain/Bladder Pain Group) conference with my anonymity in check.
My pelvic floor therapist told me the whole time she knew I was going to get better and there was hope for me bc I was hopeless. It was only AFTER I recovered from IC that my pelvic floor therapist told me that she thought I wouldn't recover.
Following are things that helped me, personally. Everyone is different, and your doctor may not recommend the following, so you can check with your doc first.
-gluten and casein free diet -no acidic foods -drinking lots of water (it is very counterintuitive and I was resistant to the idea for a while bc I was already urinating with such high frequency) -pelvic floor exercises are a biggie -seeing a pelvic floor therapist and doing pelvic therapy -NO caffiene
Also, if you smoke, know that smoking is a major bladder irritant.
I think going gluten and casein free, drinking only water and lots of it, and doing pelvic floor exercises consistently for 30 minutes a day helped *me* the most, personally. I go into detail about pelvic floor exercises below.
I had Botox in the bladder, pain blocker injections, and finally an interstim implant (like a pacemaker they put above your bottom and it shocks your sacral nerve to relieve pain and frequency).
My interstim battery is out (this was like ten years ago I think that I had it implanted), and I rarely have IC symptoms now. I am still gluten and caseine free, (although I admittedly have slips at times), can now drink caffiene, but I drink tons of water. I still do pelvic floor exercises regularly.
I am not recommending these treatments for anyone. I'm letting you know what helped me so you can gain knowledge and inquire about them.
Pelvic floor exercises (since IC deals with the pelvic floor, I am including information that has to do with it. I am not trying to be graphic or nasty):
Doing pelvic exercises religiously- 30 minutes a day. Sit on the toilet and urinate. Stop the urine flow and pay very close attention to what it feels like. *Don't do this too much as it can cause a UTI. *
When you do pelvic floor exercise, squeeze your pelvic muscles the way it feels when you stop the flow of urine. You should feel your anus move up/pinch up a little, unless your pelvic floor is super weak. But don't pinch up your anus on purpose. The goal is to squeeze the way it feels when you are stopping the urine flow. Again, don't do this a lot while urinating, bc it can cause a UTI. Only do it to get what it feels like.
Then, relax your pelvic floor muscles like you are urinating. Relaxing your pelvic muscles is just as important and squeezing them. They told me to visualize an elevator dropping down levels when I released/relaxed muscles.
Do not use your stomach muscles and do breathe normally (that was very hard for me to do at first).
Now- there are what they call (or called) sprinters and runners. One is for urinating less and one is for holding your bladder/incontinence.
I forget which is which, but both are needed. Squeeze pelvic floor muscles ten seconds on, release/relax ten seconds off. Do this for a total of 15 minutes a day. Then squeeze as hard as you can for 4 seconds on, and release/relax 2 seconds. Do this for fifteen minutes. You can break it up throughout the day if needed.
I couldn't even feel what they were talking about at first because my pelvic floor was weak. But I sure could feel what they were talking about after I did several months of exercises.
Do these exercises in different positions: Sitting up on the couch with feet on the floor and hands relaxed by your side. Laying down in bed with your back on the bed, feet on the bed halfway up--like when you do sit-ups, but your head would be on a pillow and your arms would be straight by your side. Do it standing up, feet about shoulder width apart and arms by your side. Body relaxed. Breathe normally.
Take opportunities to do the exercises while standing in line at the store, being a passenger in a car, watching tv, etc. But be cognizant that you are doing the exercises correctly and not using your stomach muscles, etc. And no one will know you are doing it--it can be your little secret.
It will take many months to notice a difference, but this has been a huge help to many IC sufferers.
Interstitial cystitis association has a card that looks like a credit card that you can keep in your wallet. It basically says that you suffer from a severe condition and it is imperative that you use a restroom. It is meant for when you are somewhere and the store says the bathroom is for customers only. It worked for me every time I used it. You can get it for a ten dollar donation.
IC sufferers-there is hope. I was hopeless. I thought other people could get better, but not me. Now the IC flares I have are rare an not severe.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Thanks, Lymetoo.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thanks for posting this. I saw one of your prior posts and I decided to go to a pelvic floor specialist. I do believe it is helping and the awareness of how tight those muscles are is amazing.
In some cases the muscles need to relax before you can begin strengthening certain areas.
I do believe that in my case it is related to my gut issues too, mainly constipation and infection. The times that I have gotten so bad where I literarily peed every few minutes was after treating parasites. I would get a bad UTI, which would stop showing up on cultures, but the symptoms remained.
I saw a few other posts that said that they had treated parasites or Babesia before the symptoms started. Is there anyone that has had this experience and if so what do you think the connection is? Maybe it is just the constipation that occurs which can press on the bladder.
Posts: 2232 | From USA | Registered: Aug 2009
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Haley, there you are!!! I've put up a few posts over the past few weeks saying your mailbox is full bc I've been trying to respond to your PM. Will you let me know when you empty your mailbox so I can respond to your PM, please?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
My mailbox should be available now. Thanks
Posts: 2232 | From USA | Registered: Aug 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Haley, I used to pee all night (could not get any sleep). I also peed frequently during the day (couldn't go anywhere without finding the restroom). I got UTIs too and nothing showed up on my cultures either.
You probably already know that when killing off parasites they release toxins/metals. Metals also have a yeast connection.
Fortunately I learned to muscle test and that has made a big difference for me. I know what probiotic or s.boullardi to take and when. I don't remember having pressure though.
You might have IC or like you said, maybe constipation pushing on the bladder, but the other stuff sounds like yeast and maybe parasites. Constipation is also another symptom of parasites. Binders might help to pull some of the metals out.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Thanks me, great info!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- D-Mannose
is essential to have on board. I scanned replies above but my eyes could not find that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
quote:Originally posted by Haley: Thanks for posting this. I saw one of your prior posts and I decided to go to a pelvic floor specialist. I do believe it is helping and the awareness of how tight those muscles are is amazing.
In some cases the muscles need to relax before you can begin strengthening certain areas.
Haley, thank you for adding this. You are correct in saying that some people need help relaxing their pelvic floor muscles prior to beginnning pelvic floor exercises.
I'm glad you are seeing a pelvic floor therapist. This was one of the essential components to my IC recovery.
Send me a PM if I can help in any way, Haley. Just remember to have enough room in your mailbox to receive it.
Best, "Me"
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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