posted
I was diagnosed with Lyme and POTS after experiencing intermittent debilitating fatigue about 3 weeks into radiation for breast cancer in December.
Around that time, I started to have pelvic discomfort, particularly in the urethral area.
My gynecologist thought it was pubic bone separation, but I was not pregnant and had not even been exercising.
I finally figured out it was interstitial cystitis (IC).
Anyone here dealing with IC? If you have been able to resolve it, how did you do this?
Posts: 116 | From USA | Registered: Jun 2016
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Water, only water, and a good amount of it. It is counterintuitive to drink more water, but it helps.
Gluten and casein free diet.
30 minutes of pelvic floor exercises daily is imperative. I didn't notice anything for many months, then it hit me and was a huge help. To this day, I can tell if I slack off on pelvic floor exercises too long bc IC symptoms flare.
My pelvic therapist said I was one of the worst cases she had ever seen and only told me this after I started making marked progress that she had doubted I would ever get better. IC is now the least of my worries.
Best wishes.
[ 07-03-2016, 09:27 PM: Message edited by: 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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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
My nurse had it .and blames it on borrielia vinconii. She is working now after 1 yr abx 1 yr h202 , 3 yrs bvt ,rife l,ots of other things ...its a decriptive dx..as lyme loves the kidneys bladder adrenals
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Thank you all for responding. It is interesting that this started at exactly the same time as my intermittent, crippling fatigue, right after the radiation therapy.
bluelyme, I am hoping that my Douglas Coil that's on order will help.
I have done so many different dietary changes, and right now with all the antibiotics I am on, I'm hoping I don't have to change my diet yet again (currently on the ketogenic diet which should help prevent yeast overgrowth).
Oxalates are a definite problem for me--I avoid tea and anything containing green tea extract and doing my best to keep high and medium oxalate foods to a minimum.
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posted
I've found the worst offender for me to be coffee, even decaf. I can have an occasional cup but if i have it two days in a row its BAD and everything is stirred up for days.
MYCOPLASMAS - INFORMATIONAL LINKS SET -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What helps me with UTI and similar issues:
Green Tea, I drink this pretty much from late morning to late afternoon - reusing the same strainer of loose tea. Caution that tea bags often additives including "natural flavors" that can be very neuro excito-toxic. Best to avoid all "natural flavors".
However, oxalates are in all teas so consider that in the mix. Oxalates are higher in the dark teas such as oolongs and black teas, though.
posted
garnet... It's good that you know about oxalates... Read the info in the link I gave earlier about "dumping" .. sometimes your IC will go crazy as you dump the oxalates.
(see info posted on July2)
It's good to know what is going on so you can adjust your diet.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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me
Frequent Contributor (1K+ posts)
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posted
I've had a few PMs regarding my IC symptoms, progress, and what I did to make progress.
I know some people are more comfortable talking about this more privately, and others don't mind posting IC questions publicly. If you aren't comfortable posting to this thread and have questions about IC, I can tell you my experience. Just send me a PM.
Like I said above, my IC and associated symptoms were severe, and my pelvic therapist said I was one of the worst cases she had ever seen. She told me after the IC started getting better that she never thought I would get better.
A good book to read is "Beyond Kegels."
[ 07-03-2016, 09:26 PM: Message edited by: 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The book "me" just suggested reminded me that, for some - or for some at times - Kegels & pelvic floor exercises just won't work at all if the pain is so severe from UTI &/or vulvodynia or Vulvar Pain Disorders.
Other than severe pain, the nerve endings can also be so inflamed from various infections in the nerve fibers that "rest" is essential. So for anyone in this situation, general guideline would be don't do anything that causes pain or irritates.
Don't try to push through pain or irritation. Think around it, instead, and treat any underlying infections, administer wise topical gentle ointments, though NO steroids, no harsh chemicals or petroleum in the ointments.
Imagine having shingles virus in the nerves around the waist and being told the "Twist" dance or hula hoop exercises are required. No way. -
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bluelyme
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posted
Thanks for the correction keebs ...yes vincentii
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
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posted
quote:Originally posted by Keebler: - The book "me" just suggested reminded me that, for some - or for some at times - Kegels & pelvic floor exercises just won't work at all if the pain is so severe from UTI &/or vulvodynia or Vulvar Pain Disorders.
-
Yes, as always, good insight Keebler. Thank you for chiming in.
Just as we all respond differently to Lyme treatment and there are different levels of severity and symptoms, same with IC, pelvic floor dysfunction, and vulvodynia (all of which I experienced).
So what may work for some, including myself, may not work for others. However, I'm happy to share my experiences and if it helps someone or gives someone an idea for treatment options to explore, that would be fantastic.
-------------------- 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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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< garnet' >>>>>,
Sorry to hear that the IC is bothering you, it seems it is a common problem with people who have Lyme Disease. I have it also, and will be undergoing some various testing starting this week.
I see a lot of great advice here on your post's replies. I know for me, lots of water, helps ease it,and is important.I found I cannot eat tart apples, and other acidic fruits and veggies,are a problem. I am finding D-mannose very helpful.
My dietary lifestyle is rather limited,but worth it to keep the pain at bay,and get to a healthy weight.
Will keep you in my tho'ts and prayers.
Jus' Silverwolfi
Jus'
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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