Newly Diagnosed

[DMBrown]

I have just recently been diagnosed with IC. I have also learned that it is related to my endometriosis which I was diagnosed with almost 3 years ago. I also suffer from IBS as a result of my endo.

I am currently in a insurance situation which will not cover treatment or diagnosis for the IC or IBS because they are related to my endo, which is a pre-existing condition for me (its a long story).

Anyway, I am looking for some good OTC relief for my IC.

I deal with frequent urination on a daily basis. I pee anywhere from 20-30 times a day and 5-10 times a night.

During my flare-ups the number of urinations increase to abou 40-50 times a day and 10-20 times a night with lots of pain during urination and soreness in my pelvis. The flare-ups usually last about 4-7 days and come about every 1-2 months.

I had problems like this before I discovere the endo, but never really put two and two together until I dealt with infertility and had by lap to remove the endo. Most of my symptoms of IC, IBS and endo went away after I had the surgery and I got pg. Now it is 20 months since I had my baby and the symptoms are back with a vengeance. They are much worse then before.

I am so grateful to have found this messageboard.

Thanks for reading

Dianah in Dallas

[vm]

Hi, Dianah and welcome to the boards. :welcome: Endo and IC may coexist and endo can cause symptoms similar to IC if it is on the bladder - but it does NOT cause IC. If your insurance company is not covering IC b/c you were previously diagnosed with endo and they feel it is related - it isn't. It is a separate disorder.

I am so sorry to hear you are feeling badly again. Have they checked to see if the endo has gotten worse? :(

[SharonA]

Hello Dianah and :welcome: to the ICN.

Don't know if you have had a chance to check out the ICN Patient Handbook. You can find it at: www.ic-network.com/handbook (http://) You will find all kinds of information about IC there. You can also find the IC Diet there. Many people have had significant reductions of their IC symptoms just by learning what foods and drinks cause them trouble and avoiding them.

You can also find information here about Prelief. It is an OTC tablet that helps to reduce the acid in foods and drinks if taken right before ingesting them. You can purchase it from this site or find it at most drug stores. It has helped me.

I know you said you already urinate, alot. Therefore, you will think this suggestion crazy, but drinking a lot of water does help. It dilutes the urine...which reduces the acid in the bladder... and flushes it out of the bladder, quickly.

:) :) :)

[Stephanie2004]

I don't have insurance coverage for my IC, either. I'm doing well with the following: Effexor (antidepressant to help with pain) $95 per month, Atarax (antihistimine to calm down mast cells in the bladder) $47 per month, OTC Desert Harvest Aloe Vera capsules (MAY help coat the bladder lining in a similar way to Elmiron, works for me) $62 per month, OTC Prelief (acid reducer) $10 per month.

I also tried a series of ten instillations, which cost quite a bit. I'm not sure that they helped me very much. Everyone is different.

[traceann]

Hi Dianah! I wanted to get my Welcome in here too!:) There is lots of info to be found around here, it's just amazing! I have learned so much in my few short months I have been hanging around, it just does wonders for my ability to deal with it all!

Here's a link right to the IC diet list of foods, I found it very helpful, and the diet has become one of my biggest tools in managing my symptoms. For me personally, between my meds (I currently take Ditropan, Elmiron and Vistaril) and the diet, I went from days of 20-30+ trips to the bathroom back in Oct/Nov of '04, down to 10-11's and 12's. It will go up occasionally due to my cycle (goes up at ovulation as do my symptoms and right before my period, ugh)

http://www.ic-network.com/handbook/diet.html#list

I started with the "usually ok" list, and just ate from that for about 3-4 weeks, until the bladder started to finally calm down, then I started adding in one thing at a time from the "may be ok" list. If a food bothered me, it's put on my no no list, if no increase in symptoms, it's a keeper. On my no no list I also have ones I wish to retry at some point, since they were questionable at the time. It's slow going, but very well worth it. It's helped me more than I can say. And at first I thought it was hopeless, never going to be able to eat like I would like, but that has proven false, as I have discovered I can eat alot more than I thought I would be able to. :)

Other things I have learned here keep me pretty much on an even keel. I have yet to have a problem I haven't been able to take care of myself, knock on wood! :) If my bladder/urethra starts to act up, drinking a tsp of baking soda in a big glass of water will help most times, but be careful if you have salt/sodium health related issues, like high blood pressure. Or, eating a couple of Tums will work for me too. I too am a big user of Prelief, I never leave home with out it! LOL! (and am never at home without it!) My heating pad is my best friend, when the bladder is either aching or the constant need-to-pee feeling shows up, that can help. The Thermacare Heat Patches are great too, for when you need to be wireless, for work or travel, or sleeping! And I have also found that for me, 800 mg of OTC Motrin works wonders also when my bladder aches, or the constant need-to-pee feeling is there, if nothing else seems to be working. My very last thing is OTC pyridium, either the Uristat brand or AZO Standard. They are an anagesic for your bladder, and work well on me for the frequency/urgency and sometime bladder pain, if all other measures haven't quite done the trick. I only use it as needed, since you aren't supposed to use it long term or more than a couple days, with out talking to your doc first. But it numbs things up nicely, but makes you pee orange, ick. Oh well, it works, for me anyway.

These are just a few things I have discovered that work for me, quite well too. I know by hanging around you too will find all sorts of things that work for you too!!

Take care of yourself, and hope to see you around the boards!
Hugs,
Tracey :)

[Katrina]

:welcome: I agree with KIm here and this makes me very mad. Many people have endo that do not get IC!!!!!!!!!!!!!!!!!! Since I am currently updating my IC pain relief methods list and adding a lot more self help list and have currently added many herbs but not updated the post yet I am giving you that info. Most importantly are the diet and some calcium....check out the ICN store and look at the alternative section http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html
Some other helps are heat and a wet wash cloth at your pelvis. . Baking soda is very helpful...check out the pain relief list is has more ideas. I hope you feel better soon.
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.

Herbs (please be as careful with herbs as you would a med.) start with a very small amount….we never know how we may react to something….never give up searching for a way to feel better.
burning for me was 500mg Quercetin, 500mg Bromelain every 12 hours.
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
Aloe Vera (Best kind Desert Harvest Aloe) http://icnshop.com/cgi-bin/ustorekeeper.pl?command=goto&file=Alternatives.html
Flax seed Oil (soothing to any inflammation and a rebuilder) Best if taken with food…can be good for constipation
Mullein soothing, healing, and protecting
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses. http://www.ic-network.com/handbook/herbs.html#black I have been warned, "Black Cohash and can cause strong uterine contractions " Pregnant women should not take this and should always ask doc before taking any herb.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, reduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
cornsilk tablets are unreal!!!!! Good

[DMBrown]

Thanks for the all the advice. I am going to check into that info ASAP.

I also decided to go ahead and make an appt with a urologist (so far I have only been seeing my internist). My appt is on Monday. Hopefully, I can get an official diagnosis and rule out any other problems/issues.

I also plan to see a homeopath. I really would prefer to use herbal remedies as opposed to prescription drugs.

I agree with you guys on the endo/IC connection. The problem is getting my insurance company to agree. Its going to be an uphill battle.

I do have one more question. Are any of you guys nursing while taking these medicines? Are there any medicines/remedies that I shouldnt take while nursing? My son is 20 months old, so I dont nurse alot, but he also isnt anywhere close to weaning yet.

BTW - I also picked up some Prelief last night. I am hoping that provides soem relief.

Dianah in Dallas

[ICNDonna]

I have to agree that endo and IC are two separate diseases. Your physician may be able to help you with an appeal to your insurance company's decision.

Donna