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In reading a past post I realized that there are actually quite a few people here with Interstitial Cystitis.  While I wouldn't wish IC on anyone I am glad to have found other people fighting the same (or similiar) fight and hope that if we all touch base with each other we can help each otherh with information and support.

 

  Please feel free to introduce yourself and tell us as much about your IC and/or Whole30/AIP journey as you would like as well as providing any information that you have learned along the way.  I learned about an app from another IC'er (on this board) called The Food Allergy Detective, you input what you eat and make notes when you flare, when the app has enough info it starts to make correlations for you about which foods are your kryptonite- pretty awesomesauce, eh?  I'm not sure if the one I downloaded is the same, it's called FoodDetective it has options for including tons of health and lifestyle data- it will even take your pulse every morning with your camera (wow!) and wants to know how you are feeling- blue or bouncy.  I haven't had the chance to use it yet and onbviously I am not in any way affiliated with it since I don't even know how to use it yet but I'll let you know in a week if it tells me anything interesting.

 

  I'll introduce myself now- I am a married momma of two young boys in my mid- alright late thirties and I have had IC for 18 years. If anyone wants to know about child bearing and IC I have lived it and am happy to chat with you.  I have tried just about all that the medical community has to offer with minimal to dismal results. I've been in trials, I've seen nutirtionists and acupuncturists.  I've been around the treatment block so to speak.  At this point I mainly treat the pain and hope they come up with something new soon.

  

   Though he is an attorney now my husband has a degree in biochemistry and his former life as a scientist put him off chemicals in his food or home so when we moved in together a decade ago he brought me over to the darkside and we have always made an effort to feed our family whole organic foods and use natural products in our home whenever possible, avoiding plastic and the microwave etc.  I coudln't really argue since eating prepared foods is one of the worst thing I can do for my IC ( I am only speaking for my own bladder- what your bladder likes is between you and your bladder). 

   While eating paleo for about two months my health improved dramatically.  I also got into the habit of making bone broth (I was researching GAPS)  every week and was doing a great job of drinking a mason jar of it every morning.  I fell off the wagon and slipped back into my old habits and my health is back in a pretty dismal place.  I am back to my bone broth but I need to recommit to Paleo and while I am at it I might as well go Whole30/AIP.  I know that the best chance I have at compliance is to do a onceamonthmeals.com style cook and freeze session so that even when I am sick, tired, don't want to cook, or have two little boys hanging on my legs I can still grab something nourishing and have it in my tummy in 30 minutes or less with little to no actual effort on my part.  Unfortunately onceamonthmeals.com does not have a Whole30/AIP/IC friendly meal option- just Whole30 so I am going to have to cobble together a menu plan on my own- or with the help of this community.  I know that if I have the meals prepared I will eat them and be successful- otherwise it is unlikely that I will stick to it- I just get too worn out and will eat anything if it means I can lie down sooner.  ONe of my sons is on the autism spectrum and of course there are lots of people that belive there is a correlation between ASD and many of the foods that a paleo lifestyle does away with so its a big fat benefit that I can bring him along for the ride.  Luckily my boys are very adventurous eaters and he actually said that he would do this with me- yay him!

 

  If anyone wants to work on a month of freezable menu options with me let me know (or if you want me to send you links to what I find).  Best of luck to everyone B)

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  • 2 weeks later...

Hello. I have IC and new to this board.  My IC is mild and I have not been on any medication since it started five years ago. I have not wanted to change my

life and so have not really tried the diet until recently. I went strict for three months but it did not make any difference so I am now trying this diet along with

the IC diet to see if it helps.  I have mostly constant burning (mild) and frequency. Only thing that noticeably makes me worse is alcohol but not so bad that

I cut it out! I have decided to take steps to get well and am going to see another urologist next month (first time in nearly five years). I am finding this hard as

both diets together are very strict and I am not a cook. Only three days in and really really tired.

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Hello folks with IC,

 

I was diagnosed about 10 years ago. After not wanting to go on the meds that would make my hair fall out, I saw a Naturopathic physician. He suggested I take Marshmallow Root. Apparently it coats the bladder and makes it less sensitive. It had worked great for me and I am only on pain when I have foods that irritate my bladder - tomato, lemon, vinegar, mostly acidic foods. Sugar also bothers me but I have not had that in quite awhile.  One big issue I have is painful orgasms. They feel like bad nerve pain. Wish I could find something to deal with that!

 

I don't know if my case is mild or severe but the Marshmallow root really helped me. It is very cheap also.

 

I understand about the food prep. I have been doing this plan for two months and spend so much time cooking. Even when I cook on the weekends for the week, it still takes so much time. I am grateful for the results though. So far I have lost 14lbs and several inches. It's nice to see results finally.

 

Take care and hang in there...

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W

 

Hello folks with IC,

 

I was diagnosed about 10 years ago. After not wanting to go on the meds that would make my hair fall out, I saw a Naturopathic physician. He suggested I take Marshmallow Root. Apparently it coats the bladder and makes it less sensitive. It had worked great for me and I am only on pain when I have foods that irritate my bladder - tomato, lemon, vinegar, mostly acidic foods. Sugar also bothers me but I have not had that in quite awhile.  One big issue I have is painful orgasms. They feel like bad nerve pain. Wish I could find something to deal with that!

 

I don't know if my case is mild or severe but the Marshmallow root really helped me. It is very cheap also.

 

I understand about the food prep. I have been doing this plan for two months and spend so much time cooking. Even when I cook on the weekends for the week, it still takes so much time. I am grateful for the results though. So far I have lost 14lbs and several inches. It's nice to see results finally.

 

Take care and hang in there...

Where do I get the marshmallow root?  How do I prepare and dose it?  Is it whole 30 complaint?  I have never tried it but I keep hearing about it and want t give it a try.  So glad this is giving you some tangible results- am I allowed to ask how long it took to lose weight on this?  the Duchess

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I get Marshmallow Root on line from Lucky Vitamins because it is cheap. I think $4.75/bottle.  Any health food store should have it. It is only organic Marshmallow Root and the gelatin capsule.  I'm not sure how much I started out talking. I only take one capsule now but I might have started taking 3 a day, one at each meal. As far as I know, but please research it, it is a perfectly safe herb. It has been a life saver for me. I'm so grateful for the doctor that told me about this. I wish you the very best. This condition is horrible and if it gives you relief it will be terrific!

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To The Duchess - I forgot to say that I lost the 14lbs in 2 months. 11 the first month and 3 the next month. I tried to combine this plan with the adrenal reset plan and so far it is not working well. I feel better on whole 30 but perhaps I need to stick with whole 30 compliant vegetables rather than adding some from the other plan like green peas.

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hmmm well I will cross my fingers for you that you find the magic combo of adrenal and whole30.  I am about a week in right now and am feeling much better.  I am not so tired that I sleep all day and started working out like I used to (when I was eating paleo).  All I did was walk 3 miles (took me almost an hour) so nothing strenuous but its better than being asleep, right?  Thank you for sharing your results- I would do this regardless for my health but I REALLY want to lose 20 lbs in 6 1/2 months- which should be reasonable (I think?  its a little less than a pound a week I think.  ALso thank you for the marshmellow root info- I'm ordering it!!  I think I already asked- can I take it on whole30?  I guess if its for medical reasons then it is a yes- can't be worse than prescription meds.

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The Duchess, 

I would love to talk to you about IC and pregnancy/ childbirth.  I actually did a W30 while trying to get pregnant ( back in November 2014). Well, it worked! We are expecting our first in August.  I am so excited but feel like my excitement is thwarted a bit because of some unusual urinary symptoms. I have NOT been officially diagnosed with IC. It all started out with feeling I had a UTI, went to the OB/GYN and tested positive for Ketones ( which means you are dehydrated, NOT that you have a UTI) but they put me on antibiotics anyway.  This was Feb 23 2015.  After the round and still feeling no relief I went to a urologist who told me my urinalysis was neg but, by the way, here's another prescription for antibiotics! This has been driving me crazy.  I talked to my OB and she said my urgency and frequency ( constant urge and usually going every hour at least) is not normal even in 2nd trimester pregnancy. 

 

I have another appt. with a urologist on Friday and one the next Friday with one who treats IC.  As I said, I have not been fully diagnosed but feel there is something bigger going on.  Maybe I'm being crazy ( I feel crazy a bit).   I'm afraid because I want to be excited and able to take care of my baby!

( I will get through this no matter what it is!!!!) I just guess I wanted to hear from another Mother how things are. :) Thanks.

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Hi Kya,

 

  First off congratulations on the impending birth- I also have an August baby conceived in late November. 

 

     I think you are very wise to get further opinions and information especially if they want you to take multiple courses of antibiotics.  I would definitely be wary of continuing to take antibiotics if they aren't working.  If you are in California I can give you some references. 

 

  I think the most important thing I learned about pregnancy and IC is--- take care of yourself.  During my first pregnancy I felt so stressed and guilty that I had to take medication for my IC t that I stopped taking it for the first trimester and soon couldn't eat or sleep.  I still feel like the stress and lack of care I took of myself becasue I allowed myself to endure too much pain contributed to the difficulty we had with the pregnancy ( early labor at 32 weeks, partial abruption and five weeks of bed rest culminating in a preterm c-section of the biggest preemie you have ever heard of 7 lbs 8 1/2 oz) (the doctors claimed there was just no more room for him but they were probably trying to make me feel better). 

 

  Another important piece of info-- Don't let anyone tell you that you can't have a vaginal delivery becasue of IC.  I had a VBAC the second time around and it was the best choice I have ever made- awesome experience.  Marie Mongan Hypnobirthing helped me tons during labor but also helped me with my IC and made sleeping and napping much easier for me.  I stopped my meds in the first trimemster and when I got myself into the OB office for my check up he immediately told me to get back on my meds bc I wasn't doing anyone any favors- least of all my unborn baby- by subjecting myself to that sort of pain and stress- to the point of not being able to eat or sleep.  This is a totally crunchy doctor that will happily tell you about herbal remedies to try before a prescription and hangs out at doula and midwife events just to keep current with what they are doing and meet them so they can work well together.  I let the stress and the guilt go and had a wonderful pregnancy and birth.  I am 5' 1" and when I got pg weighed about 118 and baby #2 was 8lbs 11 oz) the first time around they told me my hips were too narrow etc.

 

    I loved my VBAC- our outcome was sooo much better- I left the hospital 24 hours later (and made a stop at the grocery store the next day) instead of being hooked up to machines for 5 days and having to be heavily medicated at all times  Thank goodness for c sections, when you need one you really need one- its probably a good thing I had one becasue of the abruption (bleeding risk) and I ended up having a huge cycst they removed durng and had no idea that I had (could have made another pregnancy difficult to achieve) but IC is not a "need one" situation AND according to the physical therapist I saw for IC related pelvic floor dysfunction, V birth (I was trying to figure out a more family friendly way than writing about anatomy) can help reduce the pain of a particular part of IC- and for me it TOTALLY has. There is a whole type of pain I used to get that I don't get anymore (we would have to PM if you need more detail on that- kwim).  Also many women go into remission during pregnancy and it lasts to some extent till you wean from breastfeeding.  It really helped me- It is probably hormone related but I don't know if it is becasue you aren't getting your monthly cycle (which often causes a flare or just the hormones in your body but it works for many people and for some it never comes back (I wasn't that lucky).  Well I hope for your sake that it isn't IC and they can just give you a pill and make it all better but even if it is there is no reason that you can't have a totally healthy pregnancy and child- especially since it doesn't sound like you are in such pain that you need medication.  Please contact me with any questions you have or anything I can help you with.

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  • 1 year later...
  • 2 months later...

Hey! I am on Day 2 of Whole30 for the very first time! I have Interstitial cystitis/pelvic floor dysfunction with related chronic pain, IBS, my docs also think I likely have endometriosis (they co-occur quite frequently!), also have ADHD, horrible seasonal allergies that affect the IC, allergic asthma, and possibly fibro.  I've been diagnosed with IC since 2009- recently after actively pursuing acupuncture (not just going for flares, but going for maintenance), seeing an herbalist, in addition to my PCP/specialist, I've been getting a lot better.  I'm a nurse practitioner by day, musician/composer/performer by night, 32 yrs old.  

This year alone I've gotten down from around 12 meds to 5 meds (YAY!); my full time day job is nuts, so it has been very challenging to get enough time to take care of myself- but this year, I promised myself I would find the right path to healing.  

I'm really excited to see how this helps the gut/bladder/more importantly the immune system heal, as I feel at this point I have an overall problem with my immune response/neuroendocrine system.

I am kind of expecting to pee forever in the first couple days or so of this diet- it is only natural with this level of metabolic shift- but eventually, does the constant feeling dehydrated/drinking tons of water/endless-Type-1-Diabetes-level polyuria (peeing A LOT) fade away once the body adjusts to the new metabolic reset?  Luckily, my pain so far is controlled, just frequency/urgency gets so annoying- but I will follow through with it if it will help me heal!   :D

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Things do change a bit in the early days. Have you seen the Timeline?

http://whole30.com/2013/08/revised-timeline/

 

The days themselves are not exact, everyone is different, we all start from different baselines.

I do find though that the stages are fairly consistent in order, although some can be tougher or milder than others.

 

For me, once I'm past the KATT stage, I find everything settles a bit :) Hangover stage depends quite a bit on your starting situation.

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  • 4 weeks later...

Hey! I am on Day 2 of Whole30 for the very first time! I have Interstitial cystitis/pelvic floor dysfunction with related chronic pain, IBS, my docs also think I likely have endometriosis (they co-occur quite frequently!), also have ADHD, horrible seasonal allergies that affect the IC, allergic asthma, and possibly fibro.  I've been diagnosed with IC since 2009- recently after actively pursuing acupuncture (not just going for flares, but going for maintenance), seeing an herbalist, in addition to my PCP/specialist, I've been getting a lot better.  I'm a nurse practitioner by day, musician/composer/performer by night, 32 yrs old.  

This year alone I've gotten down from around 12 meds to 5 meds (YAY!); my full time day job is nuts, so it has been very challenging to get enough time to take care of myself- but this year, I promised myself I would find the right path to healing.  

I'm really excited to see how this helps the gut/bladder/more importantly the immune system heal, as I feel at this point I have an overall problem with my immune response/neuroendocrine system.

I am kind of expecting to pee forever in the first couple days or so of this diet- it is only natural with this level of metabolic shift- but eventually, does the constant feeling dehydrated/drinking tons of water/endless-Type-1-Diabetes-level polyuria (peeing A LOT) fade away once the body adjusts to the new metabolic reset?  Luckily, my pain so far is controlled, just frequency/urgency gets so annoying- but I will follow through with it if it will help me heal!   :D

 

I have almost the exact profile you do--long time pelvic pain in the form of vulvodynia and hypersensitivity to candida, then eventually I.C.   I also have bad allergies and have more pain during grass season.  I took meds for ADD about 20 years ago but stopped when the stimulants made me too shaky.  I didn't seem to need them as much at that time but I just turned 60 and have been feeling like I might need them again.  I have flares that I know would get me a diagnosis of fibro but I have not gone to talk to a doctor about this.  Its frustrating to have a really great highly active day followed by one where I can hardly stand up.  I, too, have a very stressful day job involving helping distressed children.   So...all of that together and we got problems!!  

 

I am about 80% pain free and when I do have some pain it is mostly an irritation not a medical emergency (like it has been in the past).  I worked with a naturopath who specialized in gyn/uro pain issues.  We did extensive elimination diets and used various supplements and traditional meds.  I follow three food lists--low histamine, IC low acid, and a fairly low oxalate diet.  Luckily, the food lists are remarkably overlapping.  I eat virtually no processed foods, no wheat.  However, dairy is my go-to food.  It is one food that has never bothered me as far as all the pelvic pain issues, plus calcium binds with the oxalates and helps with that issue.  I can't eat any nuts.  I had to give up bananas after they caused almost immediate blisters in my mouth.  Same with any virgin coconut products--they give me paper cuts on my vulva.  So much fun!  

 

I've been 95% Whole Foods compliant except for dairy which I am not willing to part with long term.  As far as supplements and meds I'm off almost everything except estrace cream.   The worst one I was on was very low dose of amitriptyline as I gained weight like crazy.  Even being off it for 1.5 years I still can't lose any weight--my body just adjusts to lower calories.  I have to watch everything I put in my mouth these days.

 

Take care,

Ann C.

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  • 1 month later...

Hi!  I was diagnosed with IC about 3 years ago.  I am addicted to food (on day 6 and seeing a difference) and wasn't able to follow through on the IC diet.  I was able to determine that eating gluten, stress, and UTI's are my main triggers.  And I found a direct correlation to my GI health and flares.  I don't know what flipped the switch for me and made me ready, but I am.  I currently have a UTI and am experiencing major bladder spasms, I am hoping that since I am following Whole 30 now it will subside easily without the need to go in for an instillation. 

 

I would love to hear how other people with IC have found improvement with this food plan!

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  • 3 months later...

Hello, My name is Kelly aka Keldog!

I was diagnosed with IC on Wednesday this week following a bladder biopsy. Acute symptoms for the past 4weeks then the Urologist thought he should take a look. He found some gallstones and inflammation. He put in stints? I guess I really don't even understand what is going on in there. It all happened so fast. He assured me I would feel 100% by Thanksgiving day. Well, NOT!!! It is now four days later and I still have the pain and cramping. Blood still in urine? I see him on Monday so I guess I'll ask all the questions then. Anyway, I think I am beyond frightened reading all the posts on people who have lived like this for years! I want to live a healthy life as I'm sure we all do. Is the Whole30 the answer?

I am ready to give anything a try. I am not a good pill taker, so the less Meds the better. I already have the books from whole30 (my summertime "i can loss weight for the Beach Trip idea") Never lasted 4 days, after I wanted to have wine with some friends one night and turned into wine and cheese, chips and salsa, and junk food all around.

Anyway, If I can help this go away or at least less pain..Well, I'm in! I would not wish this on anyone. I cried myself to sleep several nights waiting for the pain meds to kick in.... I'm so over that! I do not feel good enough to go shopping today, but I have some starting things on hand. I guess I just need some support that I am doing the right thing.

My Family is all for it and will help support me, but I really like the fact that someone else understands how I feel.

Any and all suggestions are needed and accepted with pleasure.

Wish me luck,

Day one: whole30/IC plan begins!

Keldog

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HiI Kelly-   I won't lie - if you do indeed have IC this is a tough row to hoe.  I am not someone who likes to take medications and I often laugh at the reality of me carefully checking the labels and making sure there aren't any chemicals in my food right before I swallow a handful of pills becasue I really can't function without them- the pain is such that I can't eat, sleep, or really function without them- and sometimes even with them.  BUT there is hope and there is relief even if it is hard to get and doesn't always stick around.  First off make sure you get diagnosed by a qualified doc by biopsy under anesthia (check the group I will tell you about below for full instructions on proper testing or pm me) and consider starting with some of the first line of defense options.  Instead of pills you can have instillations and distensions (do read up and consider what some feel are cons to these procedures as some people feel the scarring caused by the act of the repeated catheterization is not worth it- other people feel they are a life saver and do instills at their own home a few times a week).  Know that what works for one person will not work for all and that often it will work for a period of time and then stop working at which point you just start looking for another option.  Be very careful before you do anything permanent or invasive- there are lots of people with great stories about how interstim or taking their bladder out or anything else has changed their life fof the better- there are also people who wish they had never done these things so read up and make your own educated choice on those things- really know what limitations they will come with- bc they do come with limitations and for some people they are not acceptable- it depends a lot on your age and lifestyle.  Check out the natural options like Desert Harvest Aloe (they are about to have their big sale of the year and I am going to try it out). 

   For tonight baking soda is your friend- go put a teaspoon in a glass of water and drink it (not more than twice daily and not longterm every day -or so I have been told- of course consult with your doctor as to the safety of you and baking soda).  This should help take the sting out.  Are you drinking alkaline water?  Some bottled water has additives that will just flare the heck out of you and others are just really acidic.  Spring water is generally better than filtered water (Dasani has or had potassium chloride in it which is the sworn enemy of an IC bladder and I doubt Aquafina is much better).  Evian and arrowhead spring are often safe.  I drink "Carlsbad Alkaline water" from Cost Co.  You can get drops to put in water to make it more alkaline when you have no other choice and you can also get something over the counter called prelief to take when you go off diet a little to take some acid out- there is also something you can sprinkle into food- these are all little cheats for once you get things under control though- not ways to just keep eating the ame way bc that will catch up with you in a bad way.  Some people take Prelief daily, again research as some pople say it is dangerous while others (incluiding the company) say you can use it daily- fine to start with in your current flare as it is basically calcium- of course I'm not a doctor so ok everything with your dr.  There are dozens of supplements you can take; turmeric, magnesium, D Mannose, marshmallow root, aloe vera, and the list goes.  You have to take them one at a time and give them some time to work- then keep a diary of symptoms so you know which ones help and which ones flare you- bc it is different for each bladder and what helps one bladder makes another bladder so angry it cries (or the person feeling it cries anyhow).   Peppermint tea is often comforting and widely tolerated as well as teas made from marshmallow root or slippery elm- just make sure you don't do too many GI affecting things at once or you will give yourself an intestinal tummy ache- oh and make sure you are pooping regularly- I take a nightly probiotic (ortho biotic from amazon) and fish oil- recommend!  BLadder and intestines are connected and if you get backed up it will press on your bladder and HURT!   I assume you know that things like coffee and wine are pretty much across the board big no nos : (  You will find ways to cheat and get around it on occasion- when you aren't in a flare you can use a no acid bean and then cold brew it, use decaf and a lot of milk for instance and you might get away with it.  Sometimes I get away with wine, usually vodka is a better choice for IC bladders (most mixers are a no-no so a martini is a safe and classic bet).  If you go for wine most IC'rs choose a white that has little acid like a reisling or guerweitmer (spelling of German sweet white?) that is organic and lacks the nitrites & nitrates- honestly I don't really drink anymore becasue it just isn't worth it :( last night I told my husband it is my goal to be a mom who gets to have a glass of wine at night and a cup of coffee in the morning but that isn't likely to happen.  Maybe I should try to make a martini at home- that would be hitting it pretty hard though- LOL.  Not sure how socially acceptable it is to have a martini while your kids wind down for the day LOL.  Heck maybe you will be lucky and food won't be a flare for you.  I'm sorry I know it is overwhelming.  For a long time it was too depressing for me to be a part of support groups etc but now that they are online and I am a little furhter into this it really is nice to knwo how not alone you are and to hear people having the same symptoms and difficulties that I am having- so I don't feel crazy!  I also sometimes show my husband and it helps him realize I am ot being a big baby- that the symptom I am telling him about is the real deal (he is 99.8% super amazing and awesome but on occasion can get cranky about one symptom I have and how it affects him- it is kind of funny considering how amazing he is about everything else).

  Either way come check out this great FB group I am in called Interstitial Cystitis 101- there are lists of the first and additional lines of defense (in the files) and medications and treatments to ask your dr about as well as tons of just support, friendship and knowledge, there is also a natural IC group that I just joined that will have more info on supplements etc

  Check the IC network website for the exact suggested brands and of course if you aren't already on the IC diet you should start an elimination diet to see what your triggers are.  This is an illness which puts a ton of responsibility on your shoulders- the doctor isn't just going to cure you or tell you what you can do to feel better- you are going to have to work diligently to figure out what hurts your bladder and how to avoid those things while figuring out what will build your bladder back up and doing those things. Many people enjoy a baking soda bath with or without epsom salts (again this depends on if it makes you feel good or bad)- I like to add lavender essential oil, then slather in coconut oil.  I wipe the oil off with an alcohol wipe and put a lidocaine patch (aspercreme sells them over the counter- get the highest dose they have).  Azo without cranberries (no craberries no matter what-ouch!).  People love uribel and Valium vaginal suppositories- you can have physical therapy for your pevlic floor as well if you feel that your pelvic floor is a part of it (it usually is).

  I don't know what kind of stints he would have put in to be honest and I don't recognize the things he did as things I have done during my 20 years with IC so I'm hoping maybe you have something else that is curable.

  PS- I did feel really good on the Whole #0 diet and was able to eat things I am not normally able to eat- like vinegar on my salad.  Most of the Whole 30 foods- especially if you follow the auto iIt will relax those muscles- there are also stretches you can do at home with a tennis ball that we can hook you up with in the group.  Some ladies like ice and even ice popsicles for ummmm inner comfort if ykwim.  Sorry this post is so all over the place but its late and I'm tired :) I don't even know if I am going to edit it  ;)  and I wish you luck!!mmune version are pretty IC friendly.  I would def take a look at the IC diet before you start the whole 30 though and maybe blend them together.  Your best bet though is a full elimination diet with you introducing foods slowly and noting flares.  Also consider every single thing that touches you- lotions, laundry soap, makeup, one IC'er realized they were flaring every morning at the same time and it turned out t be her toothpaste.  You just have to be a detective.  I'm still figuring it out- sometimes I am doing awesome, sometimes I am cheating and getting away with it- sometimes I am being perfect and in agonizing pain- I just have to roll with it.  See if insurance will give you a tens unit- I'm trying to think of anything else that will help you at home besides meds- acupuncture, aromatherapy, self hypnosis- anything that will calm you and relax your muscles.  Some love yoga or pilates but you need to be careful as some poses or stretches may flare you.  Gentle hugs, I would be happy to chat with you if you want to pm on FB or something.  Dont forget your heating pad! 

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