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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!

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.

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.

I love Adagio Teas. Anything in the Rooibos category has been safe for me, and all of the herbals except Mate teas, it has caffeine. I think they include it in "herbal" because it is not from the tea plant. I recommend the hazelnut and caramel flavors to people who miss coffee drinks.

I didn't especially like the taste of marshmallow tea. It tastes a bit too "rooty" for me, but you might like it. I got this brand from a local grocery store that has a lot of eastern European foods. If you've ever had Hypnotiq Harmonie, that's what it tastes like.

It's important to note that marshmallow root tea interferes with absorption of oral medication.

The biggest help was using a Berkey Filter. You can also find them on Amazon, just be sure you are getting a official one, there are knockoffs that don't do the same thing. The reputable Berkey companie does sell on Amazon at Berkey On Amazon.

It filters out all of the chemicals that are necessary to cleanout the water.

Like I said, trying to have an alkaline diet is also important. How to do so is explained better https://howtoremovetoxins.com/how-to-alkalize-your-body-feel-better-by-being-less-acidic

We use Puroast Low Acid Coffee or Java Planet Organic Coffee.

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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.

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 % better

Good luck!!


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

There is a book meant for the partners of people with IC called "Please Understand" Link to amazon that is supposed to help the healthy partner get it and offer suggestions for both parties to navigate IC. I haven't read it but I know some people who found it helpful for a spouse who can't seem to understand. You might also bring him to a doctor's appointment with you if you haven't already so he can hear it from a doctor, it's shitty but some people take things more seriously when an "authority" person says them. He could also post here, we get that kind of post at least once a month and it seems like the healthy partner learns a lot from it.

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

> 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.

Chaste berry is supposed to regulate your hormones. My naturopath recommended it to me. Poster below recommend it too. https://www.amazon.com/Solaray-Vitex-Chaste-Extract-Capsules/dp/B0001VVGLU

I have an Anabox weekly pillbox. It's a rainbow! But it's also really functional and makes things much easier.

I do the weekly refill and I've also been trying out using an app on my phone called Medisafe. You can set reminders to take your meds and also track when you'll need to order refills etc.

You sound like you're in america. Do you have a Walmart or drug store nearby so that you can grab one of these just to have on hand? $9 is cheaper than an ER visit, but at this point it sounds like you need to go in.

Medical debt is just that, medical debt. If you're already in it, some more isn't going to make it worse. They're not going to send you away because you owe them money. They're going to treat you and add another bill to the mix, but all it is, is a bill. Go get help before you do something to yourself that will cost you even more.

$20.00 for a 12 pack of liter bottles.

Essentia Water; 12, 1-Liter Bottles; Ionized Alkaline Bottled Water; Electrolytes for Taste; Better Rehydration; pH 9.5 or Higher; Pure Drinking Water; For the Doers, the Believers, the Overachievers https://www.amazon.com/dp/B005HG9ESG/ref=cm_sw_r_cp_apa_i_Bm-XCbXKY273W

https://www.amazon.com.au/gp/aw/d/B00772AQD0/ref=ya_aw_oh_bia_dp?ie=UTF8&psc=1

Hopefully that works.

Prelief was very helpful to me while trying to get my symptoms under control during and after diagnosis. I would take it right before eating, and I do mean right before...it will upset your stomach and make you vomit if you don't eat within about 15 minutes of taking it... I also use Azo standard Maximum strength for the burning sensations. I provided the Amazon links here...but you can usually find these in grocery stores and pharmacies in the US.

The laxative components in some aloe vera items are called anthraquinones.

These other brands I've tried that are like Desert Harvest (in that they don't have the laxative), but they are less expensive:

[NOW Aloe Vera Gels] (https://www.amazon.com/NOW-Aloe-Vera-10000mg-Softgels/dp/B00772AQD0/ref=sr_1_3?crid=2JDGSG1XVAMI&keywords=aloe+vera+capsules&qid=1556543194&s=gateway&sprefix=aloe+vera+cap%2Caps%2C141&sr=8-3)

[Pharma-Aloe Capsules] (https://www.amazon.com/NOW-Aloe-Vera-10000mg-Softgels/dp/B00772AQD0/ref=sr_1_3?crid=2JDGSG1XVAMI&keywords=aloe+vera+capsules&qid=1556543194&s=gateway&sprefix=aloe+vera+cap%2Caps%2C141&sr=8-3)

I just ordered this one off amazon: https://www.amazon.com/Donut-Pillow-Orthopedic-Hemorrhoid-Pregnancy/dp/B07MXNFBMK/ref=mp_s_a_1_4?keywords=doughnut+cushion&qid=1574377629&sprefix=doughnut+cushio&sr=8-4

Someone else already mentioned the drugs, but other things you can try that have helped me:

• sodium bicarbonate - newest addition to my protocol, posted at https://www.reddit.com/r/Interstitialcystitis/comments/c8xi5f/effects_of_urine_alkalinization_with_sodium/
  
• flower pollen extract - based on studies in cernilton (e.g., https://www.ncbi.nlm.nih.gov/pubmed/26643109), I use Source Naturals Swedish Flower Pollen Extract Supplement
  
• quercetin - I use Jarrow Formulas Quercetin; search PubMed.gov for Dr. Shoskes at Cleveland Clinic to see studies
  
  I plan to try bee pollen extract next.
  
  I eat a very plain elimination diet, planning to use all in combination these in the next few days. I've been using flower pollen and quercetin for around 5 years and it's kept things manageable, but I want to hit pain-free status.

Read this:

https://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence-ebook/dp/B001FA0O96/ref=nodl_