Best products from r/Interstitialcystitis

We found 32 comments on r/Interstitialcystitis discussing the most recommended products. We ran sentiment analysis on each of these comments to determine how redditors feel about different products. We found 58 products and ranked them based on the amount of positive reactions they received. Here are the top 20.

Top comments mentioning products on r/Interstitialcystitis:

u/vsnie · 1 pointr/Interstitialcystitis

Hi! Oh wow, you're the first person who's said they too got it at around 20. Can I ask -- did doctors think it was every single STD in the book (given the age) and treat you wrongly for all sorts of crap? That's what happened to me, was terrible lol.

My symptoms differ with each flare up, but right now I get a sharp or dull pain on the left side of pelvis which then resonates through my back on the left hand side. I get burning sensations / sharp pains in my inner thighs and generally that pubic area feels very heaty. It gets itchy from time to time. After I go to the bathroom, it feels like that area got a workout. Some mornings, it really stings when I go to the bathroom and that stingy / burny pain really just knocks me out. I have to lie down for a bit to get over it. I try to drink tons of water before I go to bed to avoid that.

There's a general idea in Ayurvedic medicine that some bodies are prone to what translates in English as "heatiness". That body type should consume certain foods and drinks that suit it to avoid inflammation.

The Chinese also believe in maintaining a balance of hot and cool, too hot and its cystitis, too cool and another host of issues show up. There is a traditional Chinese drink called "Three Legs Drinking Water" which is normal water with a Chinese mineral that relieves heatiness and cools the body, this has worked well for me in the past: https://en.wikipedia.org/wiki/Three_Legs_Cooling_Water

Basil seeds are a common ingredient in desserts in the Middle East and in India, where it cools the body after heaty or spicy food. You can get these in the US (if that's where you are) on Amazon: https://www.amazon.com/IndianBlend-T5-V1N4-QIZ2-CA-Takmaria-Basil-Seeds/dp/B004XTDRMM/ref=sr_1_11?s=lawn-garden&ie=UTF8&qid=1538429238&sr=1-11&keywords=basil+seeds

Just dissolve it in big glass of water, a tablespoon or so, leave it overnight and just down it. Do it for a few days and see how you feel.

Just wanted to point out these are things that have worked for me, that may not work for everyone, but both are natural and harmless to try.

There's a lot of great information to understanding through the body through Ayurveda or TCM (Traditional Chinese Medicine). If you ever have the opportunity to visit a Traditional Chinese Medicine doctor, I highly recommend it because for chronic, autoimmune conditions / inflammation, they have a mapping and understanding of the human body that has truly helped me the most. Not saying do acupuncture or anything like that, but they can recommend adjustments to lifestyle and diet that make a world of difference. Because I can't always follow their lifestyle / diet advice, even though I really should, I can almost always predict when my body will react thanks to what they've told me.

Hope you feel better!

u/eliseliot · 1 pointr/Interstitialcystitis

i am so so sorry you’re experiencing this; i know how maddening it can be when you get fixated on the ONE thing you know would bring relief and you don’t have access to it.

the bathtub helps me a ton too, and i’m not sure if this would work for you but often it helps me to put something warm directly on the vaginal area/perineum (through a layer of fabric of course!! don’t burn yourself!). it seems to relax the area and somehow sort of mute the pain signals down there.

i’ve had good results with a hot water bottle, but i’ve also now commandeered my bf’s bed buddy (he originally bought it for shoulder tension lol). it’s weirdly a good width to sort of lay between your legs, and i think the weight of it seems to help too. it’s also great because if you find out that a cooling sensation is more helpful, you can pop it in the freezer!

https://www.amazon.com/dp/B0722HW6PK/ref=cm_sw_r_cp_api_i_51sADbF6AGT0K

having IC while unemployed can be brutal (i’ve been there! solidarity <3). if you can’t get the bed buddy right now, you can also literally just fill a sock with rice and microwave it.

good luck!! hoping you get some relief soon.

u/gonzo_attorney · 1 pointr/Interstitialcystitis

Ugh...internet hugs. Your urologist sounds like a clueless ass. I can't believe he would go from a dismissive "you have a bladder infection" to "let's implant a device!" I saw a male urologist who didn't know a whole lot about IC. He wasn't the worst, but he was far from the best. Actually I've seen many doctors, but I'd recommend finding someone who actually specializes in pelvic pain disorders, if at all possible. I just saw someone new at the Cleveland Clinic, and she was incredibly knowledgeable about IC (apparently it's been renamed "painful bladder syndrome"). Anyway, it took me two hours to drive there, but at least I knew she wouldn't be giving me the "you're making this shit up" face or dismissing my problems as imagined or something they absolutely aren't. You seem to be just starting this journey, but it took me about five years to find decent health care providers, and I'm not sure I'll ever recover from my fear of new doctors dismissing my misery as unimportant. Two hours may seem like a long way, but since you have to wait months to see someone, it may as well be someone good!

Did your doctor suggest physical therapy or bladder instillations to you? I'd HIGHLY recommend trying either of these things. I've had the best results with PT and the therapists I've seen are always about 100x more knowledgeable about my condition than the doctors. There's a searchable database [here] (http://www.ichelp.org/physicaltherapy#find). It usually takes a long time to get in with a PT, but once you do, you're golden. The long wait times always amaze me. Like, how many women are there who have these problems, and why haven't I met any of them in real life?

Anyway, that turned into a bit of an opus. I feel like I'm constantly shilling this stuff, but it makes a huge difference for me. If you have decent insurance, you might want to try Elmiron, the prescription drug.

I really can't get over the inadequate options your doctor gave you. Unless he's the only urologist within 300 miles, please dump him.

Edit (second opus): just wanted to add an encouragement. It can get better, so don't be completely discouraged. Right now you have no idea what's causing your pain/flares, and figuring out what your triggers are (not to mention getting a real diagnosis) will put you on the path to recovery. I never thought I'd have sex or sit comfortably again, and I used to drag a cushion around with me everywhere like some 80-year-old disabled person. Now I'm active like a rabbit and the cushion has been consigned to a closet. Stress always makes me feel exponentially worse, and it sounds like you're going through a helluva time right now. When I'm feeling especially terrible, I tend to clench all my muscles and that makes it much worse. Relax, breathe...all that cheesy, worthless-sounding crap people tell you to do. Savasana and a muscle relaxer can work wonders! Please feel free to PM me if you have any questions or just want to vent. I know it can be tough talking to people about this stuff because (a) it's awkward and (b) they have no frame of reference, dude.

u/keenie82 · 2 pointsr/Interstitialcystitis

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>Overall I'm interested to hear what the more medically minded people in this sub have to say because it was difficult for me to evaluate some of the claims this book makes.

Unfortunately I am not 100% medically minded but I felt the first half of the book did a good job of explaining the correlation between High ACE and then subsequent poor health.

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>(Side note: This book's explanation of meditation and how it works was really interesting to me and I would like to read more about it. I've been hesitant to add meditation to my daily routine because I find it hard to motivate myself to do something that I'm not sure has scientific backing as I hate wasting time. If anyone knows of a book along those lines, about proven health benefits of meditation and how it works, I'd like to read it. I read "10% Happier" and it ended up just being a memoir.)

Have you ever looked into Jon Kabat-Zinn? He has a really good book that talks about the health benefits of meditation. https://www.amazon.com/Full-Catastrophe-Living-Revised-Illness-ebook/dp/B00C4BA3UK/ref=sr_1_2?keywords=jon+kabat+zinn&qid=1558459638&s=gateway&sr=8-2

His book resonated with me and has helped me through some tough times.

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>I have an ACE score of 3 and am well aware of my trauma's impact on my mental health but I had never considered how it may impact my physical health. I think that was a valuable thing to learn and I'll probably try journaling about it soon. There have definitely been times in my life where I was marinating in stress, and that can't be good on the body.
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>Really curious to know what others think!

I can relate to your comments, and I feel like for the past 4 years since I had my son I have been marinating my body in stress and it has definitely caught up to me.

u/ifeelnumb · 4 pointsr/Interstitialcystitis

https://nutritionfacts.org/video/chicken-out-of-utis/ Click on the "View transcript" button below the video if you don't want to watch. It has the benefit of being evidence based.

**Edit to add: https://nutritionfacts.org/video/avoiding-chicken-to-avoid-bladder-infections/

I got my bidet off Woot, but Amazon has them for under $30. You'll want to get a better connector than the plastic one they come with, but it's been a godsend for me.


https://www.amazon.com/TP70-Handheld-Personal-Portable-Capacity/dp/B00O92IF6Q/ref=sr_1_7?crid=7YUMED4AGJKQ is a cheap and easy tester for the portable ones.

https://www.amazon.com/Luxe-Bidet-Neo-120-Non-Electric/dp/B00A0RHSJO/ref=sr_1_4 is what Woot.com had for about the same price, and I love it.

u/HakunaYaTatas · 2 pointsr/Interstitialcystitis

I have this one. I've had it for two years now and so far so good. It gets nice and warm, but not too hot for warmer days which I like. It's easy to store back in it's case even without folding. We did have to change out the outlets in our car to accommodate it because our car outlets weren't 12-volt, so you might want to check that before buying. But for the money I definitely think it was a good buy!

u/schoftscherve · 2 pointsr/Interstitialcystitis

In addition to what people have suggested above, to relieve your pain symptoms you can drink Ural. I have chronic IC and it doesn’t have any negative interactions for me but definitely helps soothe the bite. Please note I do not use this for IC flares, only when you know you have a bacterial infection.

https://www.amazon.com/Abbott-Ural-Effervescent-Granules-4Gx28S/dp/B0105SVRQC

They are sugar free and will tie you over pain wise by stabilising your urine PH, but will not cure the infection. I hope you get into PP asap for some antibiotics!

u/SayWarzone · 2 pointsr/Interstitialcystitis

Hang in there! I was diagnosed a year ago, and I definitely get lower back pain. Ice and heat both seem to help, I am learning from my body when to use which. I got something similar to this from my local CVS and it's PERFECT - https://www.amazon.com/Back-Gel-Pack-Wrap-Microwaveable/dp/B016ISQ6XW.

Diet is everything - I cut out caffeine (honestly it was hard but I feel so much better overall having done it), tomatoes, juice, anything with a lot of acid and I notice it helps. Carbonation seems to bother me too, so I cut out soda. It sounds awful but I make herbal iced teas and I found some great natural flavors on Etsy to add to water and I really don't miss soda. And I was a slave to Diet Coke most of my life!

For me, Uribel works really well for flares. It doesn't work for everyone, but I notice relief really fast with it - faster and more complete than Azo/pyridium. I am working my way towards Elmiron, but trying everything else first because three times a day sounds like something I'll be really bad at remembering to do. I know it takes awhile to start working, but it seems to help many so keep us posted!

u/pumpkinpuppet · 1 pointr/Interstitialcystitis

"Uva ursi, or bearberry, is an alternative and natural approach for treating urinary tract infections. This herb contains active ingredients, such as hydroquinone and arbutin, which provide antiseptic, anti-inflammatory and antibacterial properties useful for treating urinary tract infections." - link

It's an ingredient in a supplement called Bladder Ease, available on Amazon. I've tried Bladder Ease and seen little-to-no improvement, but many people swear by it.

Here is the info I could find on juniper berries:

"Juniper berries have both antibacterial and antifungal properties. (3, 4) One of the most popular homeopathic uses for juniper berries is using them to prevent or naturally remedy urinary tract infections and bladder infections.

The berries are also a natural diuretic, which helps the body flush out excess fluids from the bladder and urethra. (5) This has the potential to reduce bloating."
source

u/hhhnnnnnggggggg · 1 pointr/Interstitialcystitis

Tricalcium phosphate is the one that I keep seeing. I looked it up already and it says its just a form of calcium. The list you give is interesting.. but I wonder if anyone can actually narrow it down to one of them if it does happen cause a flare?

Natural flavors are also iffy for me.

I enter remission often, but I attribute that to never eating something with an ingredient that I didn't know what it was.. so I'm super careful.

https://www.amazon.com/Pacific-Foods-Non-Dairy-Beverage-Original/dp/B000R7829M/ref=pd_day0_325_4?_encoding=UTF8&pd_rd_i=B000R7829M&pd_rd_r=2JXV6R8ATEHNF3B0BA9S&pd_rd_w=LWK4V&pd_rd_wg=ZUiRB&psc=1&refRID=2JXV6R8ATEHNF3B0BA9S

This one is looking pretty good.

u/o11_11o · 1 pointr/Interstitialcystitis

I wasn't aware it was a tea? The only version of it I was aware of was in capsule form.

The hardest thing to give up for me diet wise was diet coke. I LOVED that soda. There was nothing better than that delicious crispyness. I have become more sensitive to foods/drinks over time. Used to be able to drink champagne with barely any side effects, and now I can't drink a flute without being in pain for a week. No carbonated drinks, no highly acidic drinks, no wonderful champagne. Still trying to get used to it and avoid temptation as much as possible.

u/elisha_gunhaus · 3 pointsr/Interstitialcystitis

I have struggled a lot with this. It got to the point where I thought I could definitely tell the difference between a UTI and a flare, but I would go to the doc for a urinalysis just to be told that there was no sign of infection.

This product saved me many a time. Super cheap and way cheaper than what I thought was the only similar product on the market.

u/angiemo2419 · 2 pointsr/Interstitialcystitis

I have had the same yucky experience with fish oil with lemon. Gross!! I'd been taking Now brand omega 3 from Amazon for years with absolutely zero fishy taste. I only tried the fish oil with lemon recently because it was cheaper. NEVER AGAIN! I'll attach the Amazon link. I promise you'll like it 1,000 % betterAmazon omegas

Good luck!!


https://www.amazon.com/NOW-Ultra-Omega-3-90-Softgels/dp/B0015L2LBE

u/CARosas · 1 pointr/Interstitialcystitis

Ugh, we're really similar and I'm so sorry for your struggles. I am also ragingly allergic to nickel. As for mint/cinnamon - I pondered whether I might be allergic to these. I've always hated mint and loved to use fennel toothpaste with no fluoride. My dentist told me I really needed use fluoride (even though I've only had one cavity in 33 years) so I started using hubby's Tom's. Instant rash all over my lips. It turns out I'm actually honestly sensitive to fluoride, which can also be related to perioral issues. For perioral, I have battled it off and on and thought I had it totally under control when it flared up again when I was 31-32. I went to the doctor but refused oral antibiotics as they had caused me so many problems before, so instead she gave me a topical for rosacea. The first week it seemed to be working but then it raged back and wouldn't budge. At that point I remembered a prescription that has been discontinued called Rosula, and how I had had fantastic results with it when I was a teenager. It was a sulphur-based topical. I was living in the UK at the time and sourced this cheap soap on Amazon - https://www.amazon.co.uk/Revitale-Vegetable-Advanced-Sulphur-Treatment/dp/B078TM3C6X. Ordered it and within literally like 3 days the outbreak that even prescriptions could not conquer was gone! I took about 10 bars with me back to the US when we moved and I still have so many that I've been giving them out to friends and a girl at my local coffee shop who suffer with perioral, LOL. Look into it if you ever experience issues again!

u/kitkat2495 · 3 pointsr/Interstitialcystitis

It's all so confusing haha I feel you. My PT appointment was definitely promising! I'm in NYC and go to Beyond Basics Physical Therapy, the head woman there is very invested in pelvic pain and came out with this book that I also bought! you should check it out if you're waiting to get in to see a PT as it has alot of exercises and massages in there, and the reviews are also very promising.

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https://www.amazon.com/gp/product/0071546561/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

u/swamped_lc · 1 pointr/Interstitialcystitis

> I was told it was pelvic floor tension, and slowly over the years the flare ups just kind of became less and less.

That's interesting. Who told you this and what did they recommend for you at the time?

If the pain you're having is a recurrence of that issue, I'd recommend the book "Heal Pelvic Pain". Hopefully it's available in your country. There's a digital version you can read right away. It's effectively a home PT/physio program of gentle stretching, which is almost identical to what I was taught in PT.

It would make sense that you're continuing to experience breakthrough pain if the underlying condition isn't being treated. It's possible there may be more to it given the pain coinciding with your implant, but that's a good place to start.