Natural Remedies for Interstitial Cystitis

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Natural Remedies for Interstitial Cystitis

http://wellnessmama.com/60032/remedies-for-interstitial-cystitis/


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Remedies to help with interstitial cystitis

September is Interstitial Cystitis (IC) Awareness Month. As the month draws to an end, I want to take this time to shed light on a bladder disease that affects millions of Americans as well as several of my close friends. Unfortunately, it isn't as easy to remedy as a common cold, but there are some natural things that can help.

What is Interstitial Cystitis?

IC is a bladder disease characterized by chronic pelvic pain, a persistent and urgent need to urinate, (often throughout the day and night and sometimes more than 50 times a day), pain or discomfort while the bladder fills and relief after urinating, and pain during sexual intercourse.

IC symptoms may come in flares, with periods of relief for some people and for others it may rage constantly. Often times, symptoms of IC mimic classic urinary tract infection (UTI) symptoms but there is no sign of bacteria or infection and antibiotics do little to nothing to alleviate the pain. IC affects men and women but is much more common in women.

Because IC does not have a cure and is a chronic pain disease, successful treatment is typically limited to reducing the symptoms of frequency, urgency, and pain. When those symptoms are reduced IC patients are able to live more comfortable lives.

Much of this is trial and error for IC sufferers. What works for one doesn't always work for another, and often a person must try many options before finding something that works. Also, what works during one flare may not be effective during another, so it's good to have a toolbox of possible remedies.

This video explains IC, what it does to the bladder and how it affects the lives of those who suffer from it.

Types of IC Flares

There are typically 3 types of IC flares: bladder wall flares, pelvic floor flares, and muscle flares.

Bladder wall flares are most often characterized by a feeling of ground glass or razor blades scraping the bladder. During these flares the bladder has often been irritated by a food/drink sensitivity and becomes more inflamed than usual.

Pelvic floor flares can be a product of sexual intercourse, long periods of sitting, or something seemingly as simple as riding a bike. They are more of a burning feeling in the urethra, vaginal area, or any part of the pelvic floor. They can also feel like something is falling out of or being pushed into your vagina or urethra.

A muscle flare is typically when the bladder muscle goes into spasms and will often cause a severe aching feeling in the bladder. The pelvic floor muscles can also become tight, spasm, and ache.

Because conventional medical therapies have not been shown to offer much long term relief for IC patients, sufferers often turn to alternative means to treat their ongoing pain. These therapies include heat/cold therapy, physical therapy, diet changes, regulating hormones, water intake, reducing stress, and supplements such as marshmallow root and aloe vera pills.

Heat/Cold Therapy

Sometimes heat/cold therapy are the most effective treatment to relieve the pain of a flare. Depending on the type of flare, heat may be more effective, or cold, or even a combination of both.

Bladder wall flares react well to heat as do muscle flares. The easiest thing to use is a simple heating pad or hot water bottle over the abdomen when the bladder is in spasm. The heat helps the tight and spamming muscles to relax and soothes the bladder wall.

If treating a pelvic floor flare with heat, it may be helpful to use a longer lasting portable heat pad (with a protective layer over it) inside pants or underwear.

Numbing the area, especially during a pelvic floor flare, is very effective. With extreme urethra burning, a frozen water bottle (with a layer of protection over it) placed against the urethra provides quite a bit of relief. The cold helps to reduce inflammation.

It is important not to leave either the cold or hot on too long, alternating or removing evert 20 minutes or so.

Pressure/Support Therapy

The Mama Strut is a promising new product for IC patients. It wasn't designed to treat IC but rather was invented to help women heal in the post-partum period after childbirth but seems to have the potential to be quite effective in helping many other pain/healing issues including IC.

The Mama Strut has several compartments where hot or cold packs can be placed on the back, abdomen, and perineum...Perfect for IC flare pain! It's a bit pricey, but for some women would be well worth the cost to be able to place hot/cold packs where needed and also be able to move around instead of needing to lie down during flares with ice or heat.

The Mama Strut is also less bulky than other similar products so you can easily and discreetly wear your clothes over it. This video shows how the Mama Strut works.

Another line that provides many different options for heat/cold therapy is Pelvic Pain Solutions. Their products are a little more bulky but they also offer many different solutions for pelvic pain including pelvic seat cushions, intimate care items, and muscle stimulators.

Physical Therapy

Many IC patients find that their pelvic floor muscles are very tight. Physical therapists work on releasing those tight muscles and the tender trigger points by using techniques such as deep tissue massage (also called "myofascial release"), trigger point release therapy, and nerve releases.

Biofeedback is also used by some therapist by placing probes into the vagina or anus (or electrodes on the body in these areas). These probes or electrodes show on a computer screen how tight your pelvic floor muscles are. The readings from these can help you to learn how to relax your muscles.

Often times IC patients don't even realize how tight their pelvic floor muscles are until they see it on the computer screen using biofeedback. They have become so used to living with these tight muscles and now need help learning how to relax them.

When most people (especially women) think of pelvic floor exercises they think of Kegels. This is the opposite of what you want to learn to do for IC. Doing Kegels teaches your body to tighten your pelvic floor muscles. IC patients need to learn to relax their pelvic floor muscles and working with a physical therapist they can learn how to do this using certain exercises on a regular basis.

Many physical therapists use transcutaneous electrical nerve stimulation (TENS) therapy to treat IC. This article explains how it works.

In TENS therapy, mild electrical stimulation is applied to the lower back or pubic area. These pulses may increase blood flow and strengthen bladder wall muscles. The electrical stimulation may also help block pain.

TENS units can be used outside of the physical therapy office by patients once they are shown how to use them and can be purchased for a reasonable price. They can provide daily relief from symptoms. Some patients find so much relief from the TENS therapy that they have a similar device, called Interstim, surgically implanted in their lower backs so that they have constant electrical stimulation to treat urgency-frequency syndrome as well as urinary retention when other treatments have failed.

Many physical therapists also teach bladder retraining exercises so to help reduce urinary urgency and frequency as well as learning to more completely empty the bladder. This is often done by systematically spacing out the frequency of urination in order to train your bladder to go longer and longer between urinations.

For IC, it's important to find a physical therapist who specializes in pelvic pain issues or women's health. The American Physical Therapy Association's website can help find a PT who specializes in IC (choose "women's health") and so can the International Pelvic Pain Society's website.

Interstitial Cystitis Diet

One of the most popular methods of treating a UTI is drinking pure cranberry juice. This treatment can actually prove detrimental to IC sufferers. Cranberry juice is very acidic and acidic foods can often inflame the bladder.

Some common acidic bladder irritants are coffee, diet soda, alcohol, cranberry or other acidic fruit juices, tomatoes, chocolate, and lemons. Many people are able to pinpoint which foods, if any, cause flares to worsen but by trying an elimination diet.

Some IC sufferers take a product called Prelief when they know they will be eating an item containing an acidic bladder irritant.

The active ingredient in Prelief is calcium glycerophosphate, a dietary mineral that combines calcium and phosphorus in a 1:1 ratio. When it is added to acidic foods, the mineral acts as a base agent, actually bringing the pH of the food toward a neutral level. (1)

Other IC sufferers find that an anti-inflammatory diet is helpful as IC is an inflammatory disease. Often times this is a wheat or gluten free, low sugar diet with little to no processed foods.

Marshmallow Root

Elmiron is a popular pharmaceutical drug used to treat IC. It is thought that it acts to coat the bladder wall and offer protection to IC patients.

Marshmallow root is used to naturally act in a similar manner as Elmiron, but without the possible side effects of pharmaceutical drugs. The marshmallow root can be taken in capsule form or prepared as a tea.

Aloe Vera

Many OB/GYN's are now recommending the use of aloe pills to their patients to help keep IC flares at bay.

Freeze-dried Aloe Vera Capsules have been shown in clinical trials to effectively reduce urinary frequency, burning, and pain that are a part of many bladder disorders, but especially interstitial cystitis/painful bladder syndrome (IC/PBS).

It is theorized that the aloe plant helps IC patients in several ways. When processed correctly, the powder maintains its high levels of the glycosaminoglycans (GAG). The first lining of the bladder destroyed by IC is a GAG layer. It is possible that aloe vera is working much like Elmiron, but with no side effects from a man-made drug. The aloe plant is also a natural anti-inflammatory, antibiotic, analgesic, and anti-microbial agent but only when used in its super-strength form.(2)

IC patients should use caution when consuming liquid aloe vera juice. It is often preserved using citric acid which can be an irritant to the bladder.

Regulating Hormones

For many women IC, pain can flare with changes in hormones. Some women find that their IC flares are the worst around the time before ovulation and then subside after ovulation. Other women find that the time from ovulation to the beginning of their menstrual cycle to be the worst.

Pregnancy will sometimes relieve the pain of IC until the third trimester. It's also not uncommon for women to have a big flare at some point during their post-natal period as their hormones are in major flux.

Working to balance hormones can help ease the symptoms of IC, Essential oils can also be used to regulate hormones as well as acting as pain relievers and anti-spasmodics.

Natural progesterone creams such as Progest can also be helpful in balancing hormones. I plan to write an in depth article on this in the future (stay tuned). (3)

Water Intake

Water intake gets a bit tricky for an IC sufferer. It is important to drink at least 6-8 glasses of water per day to stay hydrated, staving off constipation, and keeping urine from becoming too acidic. The problem is that many IC sufferers worry about their frequency and that drinking too much water will make them have to urinate more often which can cause more pain.

Finding the right amount of water intake can be a balancing act. Sipping water throughout the day seems to be the best option to stay hydrated and still keep urgency/frequency to a minimum.

During a flare, some IC patients opt for alkaline water to make sure that their urine isn't too acidic. Another trick to balancing out the acidity in the urine is to drink 1/2-1 tsp. of baking soda mixed with a full glass of water (Some caution is advised if you have high blood pressure. If this is the case, check with your healthcare provider).

Reducing Stress

Stress can trigger inflammation in the body and IC is an inflammatory disease. It is important find ways to relax and de-stress, which can help decrease inflammation. (Easier said than done for someone in constant pain!)

Simple steps like taking time to meditate and relax can help. Help pelvic floor muscles relax by laying in an inverted position on the floor with legs up on a chair or ottoman for 10-15 minutes daily while working on relaxation techniques (listening to relaxing music, meditating, or using guided relaxation).

An Epsom salt bath can help to relax pelvic floor muscles as well as the bladder muscle. A baking soda bath used as an external soothing agent is another great way to reduce bladder pain and aid in muscle relaxation.

Do you suffer from IC, reoccurring UTI's or pelvic pain? What natural remedies have you found helpful?

Filed Under: Natural Remedies
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Reader Interactions
Reader Comments

Fiona says:1
September 28, 2015 at 11:50 AM

I have had cystitis on and off for most of my life and , when it's a bad bout, can make me feel about as miserable as I can get. Sulphur seems to be the main treatment I have found but many people are allergic - I am one of them. Since taking cranberry capsules, I have not had another flare up - about 10 years now.

I know your article says that is counter-productive (and you are right about so many things) but it works for me. That and lots and lots of water to flush it all out.
Reply
Sharon says:1.1
September 28, 2015 at 1:07 PM

There is a difference between Cystitis and Interstitial Cystitis. Cystitis I believe is the urinary track and IC the bladder. Classic IC has cracks and some have ulcers in the bladder which can only be seen with cucystoscopy and hydrodistension under anesthesia
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Sharon says:2
September 28, 2015 at 11:59 AM

Kudos for addressing this. Most doctors don't know about it...it's one of those diseases it pays to research. Out of desperation I researched and discovered this and went to my dr asking if it could be my problem ( I couldn't sleep because of the pain and had to lay in a recliner with a many pillows putting me into a V position with heating pads and still feeling the urgent painful need to urinate every 15 minutes). I was told I needed to see a Urologist. IC is virtually unheard of so I just don't talk about...besides who wants to hear about another person's bladder. But it is extremely painful and the urgency/frequency is exhausting (especially at night) and embarrassing. So we suffer in silence. When I was first diagnosed I asked if there was a cure, the response was "there are miracles". Not very hopeful. But following a lot of the tips you mentioned I've been able to get off the drugs and live fairly symptom free. I also take alkalinizing supplements from Source Naturals everyday. A great tea is from Traditional Medicines called "Throat Coat". I drank this every day for a few years. I stumbled upon this in thinking that the mucosal of the throat is very similar to the bladder. My new doctor has mentioned Corn Silk tea but I've not tried it. Prelief really does work as does an alkalinizing diet...reading what foods are acidic is very informative. There are a couple of IC websites that are very helpful even with food lists. Thx for discussing this.
Reply
Mary says:2.1
October 6, 2015 at 10:34 AM

I have IC and was diagnosed by a wonderful urologist at The University of Michigan Medical Center. She told me that a lot of her patients use baking soda. I bought some large gelatin capsules, and I fill them with natural baking soda (Bob's Red Mill). I take two before bed every night. This has helped me more than anything else I've tried.
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Karen says:2.1.1
October 14, 2015 at 7:29 PM

In what ways does it help? Do you still get up at night to urinate? If so, how many times?
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Molly says:2.1.2
February 6, 2016 at 11:38 PM

Mary,

Where did you buy the gelatin capsules?

Thank you
Reply
Aimee Tyner says:2.2
March 14, 2016 at 3:08 PM

What are the websites that you like? I'm currently getting diagnosed. I'm having the scope done under anesthetic. Already doing most of diet with no relief.
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Dana says:2.3
April 3, 2016 at 4:50 AM

I have been using Desert Harvest Aloe Vera capsules for several years now. I would not be able to live without this supplement. When taken regualrly, i have little to no pain. If I am in a flare, I take 6-9 capsules 3 times a day to get it under control. When I take this regularly, I can consume most acidic foods and beverages that I am told to avoid except for Coke. I cannot drink that at all! But I have found other sodas sometimes are OK. The Desert Harvest brand are specifically made for people with I.C., so they can be taken in high quantity without side affects. I think I took them about 2 - three weeks before all my symptoms completely subsided. Now I just deal with flare ups when I skip doses and consume the wrong foods/ drinks. Overall, its been a lifesaver.
Reply
Fiona says:3
September 28, 2015 at 1:16 PM

Didn't know that. Thanks Sharon.
Reply
Callie says:4
September 28, 2015 at 2:43 PM

Thank-you for posting about this!!! I was just diagnosed with IC two weeks ago and it is one of those diseases that makes your feel very alone, so seeing that you are bringing awareness to it is very encouraging! I think the hardest part of all of this is having hope that it will get better. There are so many negative things said about it, so when you are first diagnosed, you honestly feel like your life is over! I am still wondering, "will I EVER feel normal?!". As a breastfeeding mom, I have been pouring over the Internet to find natural and safe ways to heal my bladder, because worrying that it will never get better is not doing anything for me. It was great to read an article focused on GETTING BETTER! And not the doom and gloom that I commonly find. Also, as you mentioned, IC is very common, and yet we are told by many that it is rare! I think so many women may be able to help themselves if they only knew what was going on with their bodies! I am hoping that my current (7 weeks now) flare will get better as my hormones regulate and as I try out various methods. I wanted to add that I am taking fish oil supplements. I have no idea if it will help, but I am trying it all! Much love to all of you with IC! This is a tough disease, but let's encourage one another to have hope, don't give up, and maybe, just maybe, one day... We can have a cup of coffee again!!? I know it's acidic, but, hey, a girl can dream.
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Sharon says:4.1
September 28, 2015 at 3:53 PM

Fish oil is anti inflammatory so that's good. I am able to drink coffee now. But I have substitute that is fairly good. Teeccino Java flavor. I got it on Amazon but I've seen it in some health food stores. Have you tried tge Prelief? Take it before every meal and more often. Try the tea I mentioned in my previous post. Keep searching and reading. Knowledge is power. I'm in menopause and no doubt it helps, I'm also doing a Progesterone cream therapy. I'm sure hormone issues add to it as any extra pressure in the pelvic region is a killer.
Reply
Callie says:4.1.1
September 28, 2015 at 8:38 PM

Yay! There is hope! I have started taking Prelief everytime I eat, but since things still haven't calmed down for me, I am sticking to the elimination diet for now. I want to try the tea! Thanks for the tip! It's so hard with breastfeeing, as many of these herbs haven't been tested/researched in breastfeeding moms. I will have to check out the one you mentioned, though. I haven't heard of it yet and I will try anything that could help! Do you generally feel ok? I am so scared that I will feel like this forever, as some people never get relief. The fact that you can have coffee is SO encouraging! As a mom of three kids all 5 and under, I REALLY miss my coffee. I actually cried walking by Starbucks today. I bought Teeccino! I love it! It's not coffee, but it at least makes me feel like I am "doing coffee". I'll have to give the Java flavor a go. Thanks, Sharon!
Reply
Sharon says:
September 28, 2015 at 10:17 PM

Yes there is hope but it will not be overnight. The elimination diet is a must and when things have settled reintroduce slowly. You may want to think about a diet that would be similar for leaky gut. gluten free, eliminating all grains initially..rid yourself of anything inflammatory, estrogen is inflammatory so you may want to look into Estrogen Dominance, it's one reason I began Progesterone therapy. Yes, now I generally feel ok but I spent years in agony. I was on Elmiron, pain pills, Valium, sleep meds, frequency/urgency meds...you name it...I think IC led to my fibromyalgia diagnosis. But you are already way ahead in what you know then what I knew. I'm not a huge coffee drinker and only began recently so I feel well enough that I could begin enjoying it once in awhile.
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Michaela Noojin says:
October 6, 2015 at 9:27 AM

Callie,
Hey! I was diagnosed almost a year ago and just three moths after having my second baby. Like you, I thought my life was over. Like you, I read ALL of that doom and gloom as well. My bladder was on fire and I had to pee every minute of every day. I found an amazing urologist who treated me very aggressively. Slowly, very very slowly, I got better. I quit breastfeeding due to the medications but I felt I had no choice. We all have to make our own decisions, ya know? Anyway, I took meds, went to the chiropractor, acupuncture, and physical therapy with biofeedback. I did a stem cell transplant in May and do instillations twice a month. I'm now down to a low dose of one medication and my instillations. I drink coffee and wine. I stay away from a lot of acidic food and drinks otherwise. You can go back to a "normal" life. The pain will end. I'm on all the FB groups for IC. I read and read and asked question after question to get educated. But then I would get off the sites if I were you. I did and that was a good thing. There is so much support our there which is amazing, you need it. But, there is a lot of negative doom and gloom too. Sometimes its just mentally healthier to avoid that. I hope you find what helps you. Give yourself time and grace and things will get better! Good luck!
Warmly,
Michaela
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Callie says:
October 7, 2015 at 7:12 PM

Michaela,

Thank-you!! Your post made me cry, because I just feel so alone in this. Other moms are running around having fun with their kids, and running, for me, is torture. I just want my life back. It's so encouraging to hear that someone just like me is improved in just a year. I have been doing bladder instillations for three weeks now, along with the diet. I keep hoping that things will magically get better, but I do know it is a process. I had no idea stem cell transplants were an option. Where did you find out about it? I am afraid to google anything these days. Like you mentioned, it is pretty much better for me to avoid forums and the awful stories at this point. Stress definitely doesn't help!! Did the transplant help you? Ok, sorry for all the questions! Your story is so encouraging to someone just starting this journey! (Particularly the coffee and wine part) ;). Thanks!!
Callie
Kristin says:
December 18, 2015 at 11:55 PM

I'm so sorry you're dealing with this! My sister is an IC sufferer so I know how debilitating it can be. I have a different issue that prevents me from having coffee because it is so acidic. So you bet I researched my little heart out to find some coffee that is low acid :) I'm drawing a blank on the name at the moment but you can find it on amazon by searching "low acid coffee". It is a red and white bag. Starbucks also has a lower acid coffee... I believe it is pikes place. Perhaps you could try the prerelief with one of these varieties. Best of luck to you and may you drink coffee again!
Reply
Debbie Bragg says:
February 8, 2016 at 4:30 PM

There is a coffee made by Folgers called Simply Smooth. It's low acid and it taste great.
Patti says:
March 6, 2016 at 12:14 PM

I buy puroast, it is very low acid coffee.. Also cold brewing coffee removes a lot of acid.
Reply
becky says:4.2
December 23, 2015 at 9:51 PM

Thanks for your encouraging post Callie :)
Reply
JENNY says:5
September 28, 2015 at 7:24 PM

I was just diagnosed with IC this month and had never heard of it before. I can't believe it's IC Awareness month! God works in mysterious ways... =)
Thanks for posting this. I'm eager to try these remedies next time I have a fare up!
Reply
Sarah says:6
September 28, 2015 at 9:02 PM

I had an IC diagnosis for which they said there was no cure. Went to a Lyme Literate Medical Doctor (LLMD) for other issues. Turns out there's Lyme & Bartonella in my bladder making those symptoms. The IC is going away with Lyme/ Bartonella treatment. Maybe IC is one of those things that Lyme masquerades as. It's worth getting a proper IGeneX test by a LLMD if you have a diagnosis. http://www.lyme-symptoms.com/LymeCoinfectionChart.html
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brooke says:7
September 28, 2015 at 10:44 PM

I pretty nuch cured my IC, after years of barbaric, painful, useless treatments, with a strict low acid diet and "the baking soda trick". Baking soda got it under control to begin with (I read you coukd take up to 3 tsp daily for a short term) and was key to nipping flares in the bud (I judt coukdnt give up chocolate entirely. When I succumbed to a craving, baking soda was a lifesaver.) After seven years, I drank a little wine one Thanksgiving and was delighted when I had no pain! I've been essentially cured ever since. My rare flares seem to come from dehydration.

IC is very common among people who have toxic mold illness, also known as Chronic Inflammatory Response Syndrome (CIRS). CIRS causes rampant inflammation (elevated TGF-b1 is typical) and chronic dehydration at the cellular level (it depletes the antidiuretic hormone), among other things. So if you struggle with IC, check your home and workplace for water leaks, condensation or humidity problems, especially if you also have any of the following common symptoms: brain fog, lethargy/fatigue -- especially mental fatigue, joint or tendon pain, racing or overly strong heartbeat, disturbed sleep patterns, muscle weakness or contractions, "anxiety" or depression.... Mold wreaks havoc on the body and brain through inflammation, and very few doctors are trained to recognize, diagnose or treat it. See http://www.survivingmold.com.
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JUNE says:8
September 29, 2015 at 8:05 PM

I have had IC for about 3-4 years now, and am happy that I am improving and can eat foods that I could not before. I have been on a gluten-free, non-GMO diet and try to eat organic vegetables and fruits on the IC diet list (melons, blueberries, pears & lemons). I have also studied Western Herbal Medicine, and drink organic herbal teas specific for IC, including marshmallow root. Whenever I eat out at a restaurant, I ask the waiter not to put any seasoning, sauces, and anything spicy (no condiments) on my food. I have learned to eat bland, boring foods. Whenever I am invited to lunch/dinner/wedding/shower/etc. I would explain to the host/hostess of my condition, and thankfully, everyone has been very accommodating. I am also currently getting acupuncture for my IC as well. So everyone, there is hope. Do not despair. Good Luck to all of you.
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Christina says:9
September 29, 2015 at 8:37 PM

Thank you for addressing this issue. I was in the process of being diagnosed with interstitial cystitis when I found out I was pregnant with my 4th baby so I had to forego my cystoscopy until after the baby arrives. I will say pregnancy is helping me and has before and mine is worse when I'm not pregnant especially prior to menstruation. I also have some endometriosis. Giving up caffeine definitely helped me but I still get bladder pain though not as much frequency.
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Ashley says:10
September 29, 2015 at 9:12 PM

Aloe vera leaf- cut in half with insides removed and blended with strawberries and tart cherry juice.
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Sharon says:11
September 29, 2015 at 10:23 PM

Both strawberries snd tart cherry juice are a killer for IC. Might be good for urinary track issues but I'd never try it with IC flaring.
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Ashley says:11.1
October 1, 2015 at 2:23 PM

You should give it a chance. I dont get UTIs. I have interstitial cystitis diagnosed during cystoscopy. But, what works for one may not work for another, but it changed my life.
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Sharon says:11.1.1
October 1, 2015 at 4:21 PM

Your absolutely correct.
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Mariana says:12
September 30, 2015 at 7:29 AM

I didn't know there was such a disease. I had UTI 3 times and feel so miserable every time I got it, I can't even imagine having such trouble in a chronic basis.
As I have researched, cranberry juice (or cranberry capsules) work in this way: it helps that the bacteria that causes UTI (which keeps "crawling" up the urinal tract all the way up to the kidneys) is not able to hold to the urethra and bladder walls, hence is eliminated with the frequent urination. Since IC doesn't involve the same system of bacteria going up the UT, there's no sense that cranberry juice or capsules would help.
But it work greatly when is UTI. I've cured it myself with capsules/juice once, and with dried cranberries (which I put on water to hydrate and then drank the water and ate the cranberries several times a day) other time, since couldn't find affordable and reliable cranberry juice in Brazil. The other time I had it I was pregnant and didn't associate the frequent peeing with UTI, so it was pretty bad when diagnosed, so I rather went into antibiotics.
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Dee says:13
September 30, 2015 at 7:39 PM

Anyone who has IC might want to look up the VP Foundation and also the yahoo Trying Low Oxalates group. Many people with IC find improvement with a low oxalate diet. A lot of IC people post what they find personally helpful during flares.
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Dee says:14
September 30, 2015 at 7:41 PM

People with IC might want to look up the VP Foundation and also the Trying Low Oxalates yahoo group. A lot of people with IC find improvement with the low oxalate diet. People with IC post what they find personally helpful during flares at the Trying Low Oxalates group.
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terry says:15
September 30, 2015 at 11:00 PM

Thank you so much for this article! I was diagnosed with IC over 10 years ago. I started with the holistic approach first then went with the traditional medicine. After 3 years of having bladder "cocktails" taking all kinds of meds including Elmiron, and my last resort botox injections I am done!!!! I went back to my Better bladder book written by Wendy Cohan RN who also suffers from IC. This time I feel like I understand it better and thanks to this article I ordered a few supplements that I'm hoping will help. I'm trying the gluten free anti-inflammatory diet. It really does help to have other people to talk to that are going through the same things. One other thing I need to say, I'm now praying for God to heal me. I've always thought it was selfish to pray for yourself but this disease has become so debilitating that I'm not able to live a normal life. I feel like He has led me back to the natural way of healing!!!!
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Dee says:16
September 30, 2015 at 11:44 PM

Forgot to say that for UTIs, 50 ml of cranberry juice 2 x day and 500 mg of l-methionine 3 x day can be very effective.
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Erin says:17
October 2, 2015 at 5:55 PM

Just after the birth of my second daughter I kept suffering what I thought were bouts with UTIs. I would go through a cycle of pain and antibiotics and heavy cranberry use followed with urine cultures that showed no bacteria. Only after I got diagnosed with IC, stopped the cranberry suplements, went on an elimination diet and started a low acid and low sugar diet with supplements of fish oil, probiotics and anti-inflammatory and immune supporting herbs like tumeric, ginger and Sinatrol did things start to improve. Now I'm flare free and can occasionally eat coffee, chocolate, lemon and alcohol (wine is still a no go) with my prelief tabs. I still have to pay attention and be careful of hydration, but things are so much better now. There is hope! Just over 2 years ago I was miserable and going to doctor after doctor with no help and now life is back to normal . . . crazy but no pain :)
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Jenna says:17.1
March 15, 2016 at 9:22 AM

This is amazing and gives me hope
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Tina says:18
October 4, 2015 at 1:57 PM

I don't have IC but for those who have been diagnosed with it........have you considered trying Archangelica? (It has to be the one from Iceland and not the Chinese Don Quai) It's good for anything to do with the bladder, so I would give it a go. Also, I would check with FSM practitioners. FSM stands for Frequency Specific Microcurrent, and it's amazing for reversing/ healing many conditions, and for pain. Do the research.
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Alyssa smith says:19
October 4, 2015 at 4:23 PM

Thanks for the post. It is hard not to feel alone in this illness. I've been using powdered bovine colostrum for three weeks now and feel a noticeable decrease in my pain level. In addition, my lower abdomen is no longer swollen. I bought a brand called Synertek first six hour colostrum. It is supposed to help heal the bladder lining.
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Tricia says:20
October 5, 2015 at 8:01 AM

I use apple cider vinegar when I have a flare; 3 teaspoons a day.
I take a teaspoon at the first sign of a flare.
I need to take ACV every day; if I don't, I get symptoms and immediately remember to take the AVC.
I hope this helps someone.
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Brianne says:21
October 7, 2015 at 1:10 PM

i was in remission for almost 4 years and then it came back and worse! Well it came back and then I found out I was pregnant so not sure if pregnancy is just making it worse. But I find it interesting that you said levels are bad. I definitely have the pelvic floor flare but my pelvic floor muscles are so weak! I can't even stop my flow of urine. The feeling like my bladder might fall out I thought would be helped by kegels!
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Natalia says:22
October 7, 2015 at 1:14 PM

Thanks so much for this informative post:)! I found it googling Elderberry and IC (I think Elderberry is mentioned at the end of the article in a separate article). I got diagnosed with IC in February but it started in July-Aug 2014. I had a Mast Cell attack in July from antibiotics (MCAS is known to cause IC) and then my first flare was in Aug. It was just diarrhea and then really bad pelvic pain (I have IBS with it) after drinking a cup of coffee. I cut caffeine out (except for chocolate) but it continued every month during ovulation and sometimes during my period. My GP was like "it's just your period, it changes in your 30's". I was like this can't be normal, none of my friends in their 30's have mentioned this and I'd think they would. So I went to my Obgyn and he diagnosed me with it. I'm so lucky it only took 7 mo to get a diagnosis, some people are forced to wait years and their bladders are horribly damaged by then. My IC is a lot better now than it was but I still have flares on occasion. Cutting out gluten and dairy has worked really good and drinking lots of marshmallow root tea seems to help and being on a low amine diet is working good(pretty much the IC diet but it's a little more restrictive). ACV didn't help me at all though it caused a pretty bad flare (made my indigestion go away though) but from what I've gathered what works for some with IC sometimes doesn't work for others.
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Kim says:23
October 13, 2015 at 11:53 PM

Thank you Katie for this post, and to all of you who have shared your comments. I've had both IBS and painful urination literally since my (over 2 months premature) birth. The pain and other symptoms got worse during puberty; and after the birth of my first (of five) babies at age 20, the pain continued to escalate, becoming unbearable. I'm 50 years old. This matters because in the 80s, IC was treated as a psychiatric illness. I will spare all of you the degrading, patronizing, often abusive treatment I received at the hands of western medical professionals for 15 years.

I was finally diagnosed via potassium challenge test (which is no longer used because it's barbaric); followed by cystoscopy and hydrodistension in the mid 90s. I was given every FDA approved treatment. All failed. I was given every experimental treatment (including having my entire bladder lining dissolved with acid under general anesthesia in the hope that "maybe it would grow back whole." It didn't.)
My first acupuncture treatment was the first day of my 35 year life at that point that I was ever pain-free. It worked for several years, then stopped working after a traumatic event.
I've tried every alternative treatment I know of (after having acupuncture change my life, and Chinese herbal medicine combined with acupuncture save my life after being diagnosed with an untreatablr form of terminal cancer, I became an Acupuncture Physician and herbalist myself). In my case, the treatments would work for awhile, then stopped working. In order to be able to function (I was regularly blacking out from the pain because it was so intense), I entered pain management -- a decision that flew in the face of everything I believed in and stood for as a natural healthcare physician.

Last year, the cancer same back worse (15 years after being put in remission and being told by my oncologist that "God handed me a miracle" - I can't say I disagree); and the IC flared so badly that even on very string meds, I was only sleeping 15 minutes at a time for over 4 months! As awful as this sounds, I was in such agony from the IC and so exhausted from extreme sleep deprivation, I felt blessed that the cancer was back so I would be free of the pain and exhaustion soon.

Lawyers shouldn't represent themselves. Doctors shouldn't treat themselves. It's impossible to be objective. But when neither my western doctors, or natural healthcare doctors were able to help me, it was time to help myself. I'd been studying the medicinal properties of essential oils, and used them as part of my treatment plans for many of my patients for over 20 years. To me, they were simply a more bio - available form of the same type of plants I used in Chinese herbal medicine. I put what I knew to formulate a blend that deals with the physical, psychological, emotional, hormonal and immune aspects of IC to be used topically on my pelvis over the area where my bladder lies underneath, hoping to even just take the edge off.
The first time I used it I went from sleeping 15 minutes to 4 hours. By the 7th night, I slept 9 hours straight through, and have been doing so ever since (almost 3 months).

When I shared this with my urologist who specializes in IC, I asked her for sterile syringes and catheters to put the blend into my bladder before bed. I have tears streaming down my face as I type this, because I am pain-free again after being in agony for over a decade since the acupuncture stopped working for me (also a difficult thing to say as an acupuncturist by profession). My urologist asked me for 100 samples and information sheets and consent forms to give my blend to her IC and OAB patients.
Katie,
This blend (and the one that made 5 nodules/tumors vanish from my thyroid, along with over 40 pounds and all of the hypothyroid symptoms I'd been battling for 5 years, that my Internist is now giving to his thyroid patients) has given me my life back. I don't say that lightly. I belong to your community because I respect and admire you; and love the information you provide for people. I'm not here to promote myself or my products.
That said, I also believe that MANY members of your community could benefit from these organic plant based topical blends. I have not been able to find a way to contact you directly to offer you samples and information about them. I know you recommend products that work for you; and I'm sure you are flooded with unsolicited requests daily. My heart and my Purpose is genuinely to Pay Forward the miracles that I have been granted in my life - using whatever tools and gifts I've been given to do so. Will you please tell me how I can help your members who are actively seeking help I may be able to provide?

Regarding cranberry juice, ACV, coffee, tea, tomatoes, and other acidic foods, every person is different; and all cases of IC and Overactive Bladder and Painful Bladder Syndrome (all related disorders) are different -- what helps some feel better may cause agonizing pain in others. Nobody knows your body better than you - no matter how educated or experienced; no matter their credentials - YOU are the expert on your body because you have lived in it all of your life. Listen to it, and do what it tells you is best.

Something I haven't seen mentioned on any of the posts is a supplement called D mannose. It's basically "wood sugar." It is not digestible by (nor is it harmful to) the human body. It is processed through the kidneys and excreted in urine. Bugs of all kinds -- including bacteria -- LOVE it. Cystitis is a bacterial bladder infection. IC is a chronic inflammation of the bladder lining in the absence of detectable bacterial infection. However, some people with IC are more susceptible to UTIs and cystitis (many of us were over prescribed antibiotics based on presenting symptoms before being diagnosed with IC, compromising immune function). Further, since so many IC symptoms mimic cystitis and UTIs it can be difficult to know if we have an active infection until it is very far progressed.
I've been taking D Mannose on a daily basis to prevent UTIs/cystitis for years for the reasons stated above. What happens is the D Mannose ends up in the urine and the bacteria "jump on it to eat it" and the bacteria are excreted in the urine along with the D Mannose before they have an opportunity to colonize and cause an infection.

Home made organic bone broth (the recipe, along with a suggested IC diet and a ton of other very useful information can be found in Phillip Weeks' book "Painful Bladder Syndrome) has also helped me significantly.

For the trauma aspect linked to well over half of all IC/PBS cases, Dr. David Berceli PhD, has written a book called "Revolutionary Trauma Release Method" and a companion book Trauma Release Exercises that both I and my patients have found to be an invaluable resource. I use it myself; have incorporated it into my clinical practice; and for my patients who are string enough physically and emotionally to do this work on their own, I recommend they purchase the books, find YouTube videos demonstrating the exercises, so they can continue their work in this area between their visits with me. (I do everything I can to empower my patients in terms of self-care; so they only see me for things they cannot fix on their own with the tools I teach them or they've learned elsewhere). I do not have an affiliate relationship with either author; nor with any D mannose distributors. I am simply grateful for the positive changes in my life and the lives of my patients that have come about by using the tools they have provided.
Wishing you all love, peace, health, joy, abundance and many blessings,

Dr. Kim Marie DOM
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Karen says:23.1
October 19, 2015 at 7:06 AM

I'd like to know more about your essential oils blend. How can I get more info.?
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Linda Kavitz says:23.2
March 19, 2016 at 4:44 PM

Dear Dr. Kim , I am very interested in your oil treatments. I have had a Goiter and thyroiditis for many years. Always looking for natural means to heal. I feel lost in the world of drugs and often feel helpless with no hope. I've obtained two degrees trying to help myself, so I understand your journey. I would be grateful beyond belief to try these oils. Your post was a while ago so I pray you get this, I'll leave my information in hopes that we can connect. Thank you in advance. Linda
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April says:24
October 28, 2015 at 12:43 PM

I believe, based on my own experience and lots of research, that a large percentage of women who believe that they have IC, or have been diagnosed with it, actually have Pelvic Floor Dysfunction.

I thought I had IC for months, after what I thought was a urinary tract infection. What I actually had was Pelvic Floor Dysfunction brought about by extreme stress. When we're stressed we tend to tighten certain muscles in our bodies. Everyone is different, some people tense their neck muscles or their back muscles. Others (like me) tense their pelvic floor muscles. I had no idea that I was even doing it!

I'm in my early 40's and had never heard of IC or Pelvic Floor Dysfunction until it happened to me. I had lots of tests done: Urine, an Bladder Ultrasound, X-Ray and CT. My doctor thought I had IC and referred me to a urologist who didn't think I had IC. Luckily I had done my research and brought up Pelvic Floor Dysfunction. The urologist thought it might be a possibility.

Luckily I live in a big enough city that there is a physical therapist who specializes in Pelvic Floor Dysfunction. I went through two months of weekly therapy. It was painful. I had to learn to relax my pelvic floor muscles. I still have flare-ups, but I know what they are and how to manage them.
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Brianne says:24.1
October 28, 2015 at 1:07 PM

Would love to know what your symptoms were/are like? I'm not 100% sold on IC because something's just don't fit. I went i to remission without even trying but it came back years later.
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April says:24.1.1
October 28, 2015 at 1:27 PM

When I first had symptoms it was exactly like a very bad UTI. Extreme urgency and burning when urinating. My bladder felt very irritated and so did the surrounding pelvic area. Sometimes it was a burning feeling. Sometimes the feeling extended up into my lower abdomen.

After having the physical therapy, I now get the urgency more than anything, and it can feel uncomfortable "down there" at times. Sometimes the flare-up will only last a couple of hours.

I've noticed that it flares up before my period starts, but I've had that happen for years and didn't think anything about it. And it flares up when I'm very stressed. It never hurt to have sex and no activity seemed to make it worse. My physical therapist told me that some people will go years with no flare-ups after treatment, but then something very stressful will happen and it will start again.

I also found that going through hypnotherapy and learning to really relax my body helped. It really is, for me, about learning to relax my mind and my body. Also knowing what it going on helps, because I know that it's temporary and I do have control over it on some level.

Good luck!
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Brianne says:
October 28, 2015 at 8:52 PM

Thank you for responding. I'm definitely going to look into physical therapy. My first round with it started right after sex with a feeling like I was getting a UTI not full blown yet. I had many doctors visits and antibiotics but nothing helped. I had to pee a bit more often but no urgency and no burning. Just when my bladder was full it would be painful. I got pregnant and miscarried and had a D & C procedure and it vanished. Then again after sex about 4 years later it started again. But now I have urgency, burning if my bladder is not full and soreness here and there. But like you no pain with sex or any activity. The IC diet has no effect and my bladder feels best when full! Which I found is a pretty rare occurrence. Very frustrating!
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April says:
October 29, 2015 at 1:22 PM

I definitely sounds like it could be pelvic floor dysfunction. Your symptoms don't really fit IC, especially your bladder feeling better when full. I hope that you can find a therapist in your area!
Erica says:
March 4, 2016 at 7:02 PM

Hi April and Brianne,
I know this was written some months ago, but I thought I'd check in and see if you've had any improvements. Brianne, I have your symptoms: basically a feeling like I have to pee, the burning seems to come on when my bladder isn't full, but just at the urethra and it does seem to feel better when my bladder is full. The urologist I saw today prescribed me 10 mg Oxybutynin, but I'm not so sure about it. He said he thinks it's overactive bladder that will clear up, that maybe I had a uti that didn't quite clear?
Brianne says:
March 4, 2016 at 9:17 PM

Erica-

That is exactly what my first urologist said. He thought I did have a UTI but my bladder was just still irritated from it. He said it can take a few months to get better. Umm ok. I had uti's before. Anyway he gave me meds for an overactive bladder. I took one pill and felt very off. Like I had to peer but couldn't. I didn't take anymore. I have sen any improvements yet but since I'm pregnant I'm not doing much to help it.
April says:
March 5, 2016 at 3:50 PM

I've never tried medication for overactive bladder. My urologist did tell me that UTI's can cause irritation for a long time after the infection is gone as well.

My pelvic floor dysfunction is slowly getting better on it's own since I did physical therapy almost three years ago. It's really about managing my stress level and actively relaxing my pelvic floor.
Sarah says:24.2
December 21, 2015 at 3:18 PM

I find your post really interesting as i have been struggling with this still undiagnosed issue for about 3 years now. The closest a dr has come to diagnosing it is mentioning painful bladder syndrome or interstitial cystitis. i have had tests but my bladder is fine. i cannot prevent or predict when the "attacks" as i call them will happen. It started randomly and i hadnt had any for about a year and now they are coming back again which is very upsetting. Basically i get uncomfortable "down there" sometimes it just feels uncomfortable then goes away, other times it runs into a full blown, burning when peeing, need to pee urgency uncomfortable want to cry horribleness. nothing works to numb the pain etc other than strong painkillers like codeine etc which i hate taking.
ive tried to think of patterns or things causing it but i cant, nothing is consistent. it can occur anytime during my period cycle, when im stressed and when im not so stressed, i have cut down my alcohol alot so i know it cant be that although i will continue that anyway, as for food i dont know as ive eaten the same way for a long time and it comes and goes. its so frustrating and uncomfortable and difficult to manage without knowing what is causing it and how to treat it!
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April says:24.2.1
December 24, 2015 at 3:46 PM

It sounds to me like you have PFD and not IC. Those are the exact symptoms I have and they come and go. Sometimes during a really stressful time I won't have a flare and wonder why, but then I realize I'm tensing my shoulders or neck instead of my pelvic floor.

With PFD you have to learn to relax your pelvic floor muscles. It's when you start clenching them that the symptoms happen. I would see if there is a physical therapist in your area that can help you and also try to actively relax your pelvic floor muscles.
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Erica says:24.3
March 6, 2016 at 4:51 PM

Thank you both for the input! I've wondered about pregnancy and this condition as well.
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Paula says:25
November 1, 2015 at 5:58 PM

I am a Certified Aromatherapist with additional credentials in the use of medical and therapeutic grade essential oils.

My 89-year-old mother suffers from chronic Cystitis and/or IC. I created a few treatments for her that she has told me help her more than anything that has ever been prescribed for her by a doctor.

Aromatherapy can minimize the discomfort of cystitis and speed recovery. Aromatherapy may also prevent recurring bouts of cystitis. Essential oils such as benzoin, bergamot, cedarwood, cypress, elemi, eucalyptus, frankincense, juniper, niaouli, pine, sandalwood, tea tree, and thyme oils are especially effective against bacterial infection. In addition, benzoin, cedarwood, chamomile, cypress, eucalyptus, juniper, pine, sandalwood, and thyme oils are diuretics and increase urination which cleanses the bladder. This is helpful if cystitis makes urination difficult.

SITZ BATH FOR CYSTITIS

2 drops tea tree oil
1 drop bergamot oil
1 drop cypress oil
1 drop thyme oil

Add the oils to a shallow tub filled with warm water. Sit hip-deep in the tub for fifteen minutes. Repeat once or twice each day until your symptoms subside.

CYSTITIS MASSAGE OIL

1 ounce jojoba or other carrier oil
3 drops sandalwood oil
2 drops cedarwood oil
2 drops niaouli oil
1 drop chamomile oil
1 drop frankincense oil

Add all the ingredients to a clean container and blend. Massage the mixture over our abdomen, lower back, and pelvic area. Repeat several times daily until symptoms cease.

For the irritation to the labia and surrounding area caused by the caustic urine, we have found that the following is effective:

CYSTITIS SKIN IRRITATION SOOTHER

1 ounce jojoba or sunflower oil
2 drops laurel oil
2 drops lavender oil
2 drops tea tree oil
1 drop chamomile oil

In a clean container, add the essential oils to the carrier oil and blend. Apply the oil externally to irritated areas several times daily, as needed. You may also apply several drops to a panty-liner to keep the soothing blend against the skin, as long as you change them frequently, wash with a mild non-irritating soap such as castille, and have intermittent periods where air is allowed to circulate around the irritation. Avoid wearing underwear that is made from nylon or spandex as these keep heat and moisture in; wear cotton instead as it allows airflow.
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Sharon says:26
November 1, 2015 at 8:47 PM

I'm very interested in how essential oils could help IC. The concern I have with the post about EO is true IC does not involve bacterial infection so I'm not sure the suggestions mentioned would help.
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Paula says:26.1
November 4, 2015 at 1:12 AM

Besides being a Certified Aromatherapist with additional credentials in the use of medical and therapeutic grade oils, I am also a Certified Medical Transcriptionist with over 3 years of medical background. When I first studied about my mother's condition I consulted 5 different textbooks on medical applications of EOs, went online and did extensive research, consulted with the National Association of Holistic Aromatherapists (NAHA) of which I am a member, and spoke with a Naturopath and a Holistic Practioner. I was not about to treat my own mother half cocked with a mere recipe that I found in some book! Every one of my sources indicate that the treatments I described above are widely accepted in our field. Having said that however, I never claimed that this would cure the problem - only that it could help alleviate some of the symptoms. Chronic Cystitis and IC are not illnesses; they are conditions. My mother indicates that these have helped her more than anything she was ever prescribed or advised to do by a medical health professional, she is satisfied and so am I. If you are not comfortable using EOs for treatment then, by all means, don't do so. This was merely a suggestion for those looking for alternative treatments.
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Barbra says:27
December 14, 2015 at 11:03 AM

I'm wondering about a simple UTI in a 2.5 y/o toddler. We're working on natural healing but she's holding back urination, How long should we wait before we need to take her in to get cathed?
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Rachel says:28
December 16, 2015 at 1:52 PM

I'm glad these posts are so recent. I was just diagnosed with IC. So depressing. Ever since my symptoms began, my period has arrived a week early. I noticed that when I got my period, my symptoms just about disappeared. Then, they are not too bad until ovulation, and then my symptoms go up. I'm wondering if anyone has had relief focusing on hormones. I don't know if I have low estrogen or progesterone or what. I just know my GYN would probably treat me like I'm crazy if I ask him to check my hormone levels. But, it seems it is connected. I also had lyme twice in one year a few years ago. I wonder if there is a connection there. In the months leading up to my symptoms arriving, I was eating a low carb diet and using a lot of lemon juice on foods and citrus essentials oils in my drinking water. Also, dark chocolate and drinking muscadine wine. All bad for IC. Why wouldn't the lemon juice and lemon essential oil make my body alkaline? Except for the wine and chocolate, I was not eating much sugar either and staying away from processed foods (as much as possible). Here I was trying to be healthy and bam, I get this condition. I tried Hyophen but it didn't do much, also tried Elavil and couldn't deal with the side effects. How does exercise affect your symptoms? Luckily, my symptoms are not severe, I am doing the elimination diet and has worked very well. But, I feel so much uncertainty, not knowing what the future holds. The internet can be pretty depressing!
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April says:28.1
December 16, 2015 at 4:47 PM

I'm so sorry for your diagnosis Rachel!

I don't have IC, I have Pelvic Floor Dysfunction. Pelvic Floor Dysfunction can be wrongly diagnosed as IC and requires physical therapy. Mine was brought on by extreme stress in my life and I still have flares when life gets stressful. It also flares during PMS, so there is a hormonal component.

It couldn't hurt to have your hormone levels checked.

It could be that ingesting the citrus essential oils has damaged your bladder. Essential oils, especially citrus, are strong solvents and very irritating to the mucous membranes. There have been cases of people having esophageal, stomach and even gall bladder problems after ingesting essential oils. The bladder could be affected as well.

From the research I've done it's not safe to ingest essential oils unless you are under the care of a trained aromatherapist, and only for short-term use. Oil and water doesn't mix so every time you put some essential oil in water and drink it you are drinking the oil straight instead of diluted. I would completely stop all essential oil ingesting if you haven't already and see if that helps. I would also cut out citrus juices which you've probably already done.

I hope you feel better soon!
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Rachel says:29
December 16, 2015 at 6:04 PM

Thank you, April. I have cut out all citrus and am not ingesting the oils anymore. I hope they didn't cause the IC but it is an interesting idea. I had never heard of people suffering that kind of damage. I had not been warned about this by my chiropractor's office, who advised the use of them. In fact, my chiropractor told me after my diagnosis that I could probably still have lemon in my diet (because it's alkalizing). I thought, NOT. I do use the oils topically, not citrus ones, but I have found that some of them may help when used on my abdomen.

I am reading more about PFD, it's also very interesting, and I guess one can have both IC and PFD, oh joy! Reading this blog and the comments have been helpful.
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Callie says:29.1
December 16, 2015 at 9:47 PM

Rachel, I am with you! This IC stuff is depressing business, but there are many people who get better! Have you checked out the IC Network? They have a forum that has been helping me through my recent diagnosis. I hated going on there at first, but learned to stop reading the horrible stories and focus on getting support and the success stories. It may be helpful for you? I am still struggling, so I feel your pain (literally), but it just dawned on me today, that it will never get better if I believe it won't. Hang in there!!
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April says:29.2
December 16, 2015 at 11:59 PM

Unfortunately there are doctors, chiropractors, etc., who aren't properly trained in essential oil usage but prescribe them anyway and cause people harm. If you're interested in essential oil safety, there is a lot of information online. Search Robert Tisserand. He's considered the father of modern day aromatherapy. He wrote a book, Essential Oil Safety, that has over 4,000 references to studies and other medical information about essential oils. I follow his safety guidelines. There are great facebook groups about using essential oils safely.
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Janet J says:30
December 16, 2015 at 9:45 PM

I've had IC for about 10 years. At my worst, I wake up 5-6 times in a night to go. At my best, one time at night to go. Typically, it is 2-3 times a night. Recently, I've read about seeing a Physical Therapist for exercises. Not all PT's do it - so call first.
I've also looked on YouTube for the exercises to do. I'm going to try them first, and if they don't work then I'll schedule myself a PT appointment!!
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April says:30.1
December 16, 2015 at 11:54 PM

I went to a physical therapist for a few months for Pelvic Floor Dysfunction which sometimes coincides with IC, or sometimes people think they have IC but they actually have PFD. Most physical therapists don't do this kind of therapy. I was lucky that I live in an area where there is one that does. It's not easy and it's not fun, but it works. I hope you can find one that can help you!

Could you like the youtube video you watched? Thanks!
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Rachel says:31
January 12, 2016 at 8:02 PM

After trying different remedies to help with my IC, including seeing a Urologist and Gynocologist, I decided to back track to see what I had changed in my diet. About 3 years ago I started drinking almond milk thinking it was healthier for me, I noticed that I was worse during the morning through early afternoon. I blamed it on the coffee in my almond milk latte. Then I had a couple of nights when I could not sleep well and decided to warm up some almond milk to help me sleep. Instead, I woke up a bunch of times to urinate. That's when I realized that it was the almond milk that had caused my IC. I have since gone back to drinking my lactose free milk again. Maybe since Almond milk is being used more, and it's a fairly new thing, no one has researched to see if it is a bladder irritant. I'm happy I made that discovery, it has made a big difference in my life.
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Wellness Mama says:31.1
January 13, 2016 at 1:50 PM

Thanks for sharing!
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Toni Hills says:32
January 26, 2016 at 12:49 PM

So much pain out there, it's so sad and YET you are all still fighting! I have Lupus and Sjogren's which attacks my bladder and also causes extreme dryness. I have all the symptoms of I.C and am going through all the usual tests - but meanwhile, the docs don't seem to care much about the pain I am in! I have asthma so can't take much without getting side-effects, so I have to experiment with other methods of pain-relief. Thanks for all the information above, which is brilliant. I was told by my doctor recently that there is a connection between I.C and atrophy of the vagina and/or dryness generally. I think she is right and realise now that the pain I suffer comes from 2 sources: the bladder and inside the vagina. I'm now using lubricants such as coconut oil and other stuff and can honestly say that things aren't so dire as before. I also drink marshmallow tea....
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Sandra Cline says:33
February 5, 2016 at 8:49 PM

I have had IC for a year. Nothing helpedthe horrible pain ontil I stumbled onto diazepam (valium) which I insert rectally. This completely calms down pelvic and bladder area. Which then allows dessert Harvet aloe vera, cpsules to work. You only need diazepam for short period. I take 6 desert harvest capsules a(3 morning, 3 evening) If any pain or discomfort stars I take extra capsule plus prelief. I now have contol of my life and body again. Also I eat no sugar or prepared foods. Research is showing that during flares, yeast is being found in urine. Remember yeast loves sugar and starchy foods. Hope this helps. Good luck Sandi
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Treasia says:34
March 9, 2016 at 12:01 PM

Hi, I have had IC for almost a year, and yes you feel like a very isolated and lonely person, my family is very supportive, but how can they understand this PAIN. Dr.'s are just trying one thing after another, and as far as I can tell, this is something that only you and others who suffer can help through trial and error. I read all the time, and so many people that share their remedies help me more and more each day. Thank you all. Just to let everyone know that EGGS are the most horrible for me, I haven't tried anything else that is supposed to be a caution food, so everyone is different!! I am going to try the marshmallow tea, and crossing my fingers, would love to have something soothing and warm in the morning. God Bless each and every person that suffers with IC!
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Chrissy says:35
March 13, 2016 at 6:02 AM

IC can actually be "cured" with natural therapies. I am proof of this and know several other people who have managed to do the same with the help of a wonderful Integrative/Chinese Dr in LA by the name of Matia Brizman. Dr Brizman believes that at the root of IC most patients have leaky gut and candida amongst other issues which in turn have caused inflammation of internal tissues and led to the breakdown of the bladder. Her protocol uses a strict diet (similar to the anti-candida diet minus certain foods that are known irritants to ICers and that may be too abrasive for the lining of the gut while you heal it), probiotics and natural herbs and supplements to clear candida and toxins from your body and slowly heal the tissues of your bladder and your gut. The most important thing to start with is diet! It's a long road (depending on severity I've heard it takes people 6 months - a few years) but it sure works and is worth the patience!!
Meanwhile for those of you who may not be able to get to LA to see Dr Brizman I found that fish oil was a wonderful anti inflammatory and a cup of bone broth each day helped heal up my gut which in turn meant my bladder started to heal...
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http://wellnessmama.com/60032/remedies-for-interstitial-cystitis/

*****


Interstitial Cystitis

http://www.ourhealth.com/conditions/i-cannot-get-a-diagnosis/urethra-itching-and-pain-no-std


Discussions By Condition: I cannot get a diagnosis.

Urethra itching and pain - no STD
Posted In: I cannot get a diagnosis. 16 Replies
Posted By: AnonymousJune 5, 200707:29 AM
A few times per year I get pain in urethra (only inside the penis, usually only in the very end, but still not visible to the outside). If I ejaculate in this time, I get nasty burning pain that lasts for a day or two and then subsides.
I have this problem since I was a kid and since I didn't have any sexual partners yet, I doubt it can be STD. My symptoms:
- urethral pain, that GOES AWAY for a short time during peeing
- really bad reaction to ejaculate
- it feels good when I warm the penis, but the pain gets worse after that
- it goes away in a few days
- happening a few times a year (maybe there is a connection with the food, but I haven't found any - no 'hot' food, drinks,..)
I have been to my doctor, but she was clueless and prescribed me the cream with clotrimazolum, but it only helps in a way, that it cools the area.
This problem is very annoying. At the beggining I even cannot sleep at night because of the pain. Please help!

Best regards,
Matthew

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16 Replies:


Same Problem here mate. The reason I came here for to find a answer for this horrible probelm.At the moment, I have to EMPTY my FULL urine bag, but I cant due to the stupid pain if I urinte.The highest I urinate is ONE SMALL DROP! And pain goes like electricity in my penis. AAAAA!!!!!!Anyone help us out here please?
Anonymous 42,789 Replies
June 9, 200703:34 PM 0 0 Flag this Response

Same Problem here mate. The reason I came here for to find a answer for this horrible probelm.At the moment, I have to EMPTY my FULL urine bag, but I cant due to the stupid pain if I urinte.The highest I urinate is ONE SMALL DROP! And pain goes like electricity in my penis. AAAAA!!!!!!Anyone help us out here please?Sorry, mate. It doesn't seem that we have the same problem. I don't have any pain during urinating but before and after and goes away in a few days. I tend to go to the bathroom as may times as possible, because the pain goes away a few moments during urination...Good luck in finding the cause to your problem.Mathew
Anonymous 42,789 Replies
June 15, 200708:17 AM 0 0 Flag this Response

I have exactly the same symptoms. Its keeping me up. THis time around it hasn't subsided for two days now. Its horrible. Have you had any luck finding the problem.
Anonymous 42,789 Replies
September 14, 200808:52 AM 0 0 Flag this Response

Hey guy I have the same systems the worst was the other day. This is new for me over the last two years i am 39 now. my doctor told me there is probably a small bed in my Urethra that stuff gets stuck in and there is nothing to be done and sending me to the uroligist would be painful and they cant do anything. If you get a differat answer let me know A few times per year I get pain in urethra (only inside the penis, usually only in the very end, but still not visible to the outside). If I ejaculate in this time, I get nasty burning pain that lasts for a day or two and then subsides.I have this problem since I was a kid and since I didn't have any sexual partners yet, I doubt it can be STD. My symptoms:- urethral pain, that GOES AWAY for a short time during peeing- really bad reaction to ejaculate- it feels good when I warm the penis, but the pain gets worse after that- it goes away in a few days- happening a few times a year (maybe there is a connection with the food, but I haven't found any - no 'hot' food, drinks,..)I have been to my doctor, but she was clueless and prescribed me the cream with clotrimazolum, but it only helps in a way, that it cools the area.This problem is very annoying. At the beggining I even cannot sleep at night because of the pain. Please help!Best regards,Matthew
Anonymous 42,789 Replies
December 29, 200804:55 AM 0 0 Flag this Response

It sounds to me like it's a problem at the meatus,which is the very opening of the urethra.I would see a urologist to be safe though.:)
richard wayne2b 1,232 Replies
December 30, 200800:43 PM 0 0 Flag this Response

I've searched several urology sites and can't really say that your Sx fit anything I've read.Are you circumcised?Do you have any discharge?Any blood in the ejaculate?
richard wayne2b 1,232 Replies
December 30, 200800:56 PM 0 0 Flag this Response

The pain is new to me (About 3 weeks) I also have itching on the lower side, about an inch from the tip/head of the penis. The comment referencing of some type of blockage makes sense however, I noticed that when ejaculating inside my wife, her vaginal contractions squeeze my penis to the point where it is painful in the exact same area where I have the pain/itching. I'm thinking that here squeezing actually caused some type of injury
Anonymous 42,789 Replies
December 23, 200910:07 PM 0 0 Flag this Response

The pain is new to me (About 3 weeks) I also have itching on the lower side, about an inch from the tip/head of the penis. The comment referencing of some type of blockage makes sense however, I noticed that when ejaculating inside my wife, her vaginal contractions squeeze my penis to the point where it is painful in the exact same area where I have the pain/itching. I'm thinking that here squeezing actually caused some type of injuryI posted this as a reply but it is for all of these postings: This most likely a yeast infection, or a yeast infection in your bladder (Interstitial Cystitis.) Your urethra is connected to your bladder so if your bladder is angry your penis will be too. For men, yeast infections can be very tricky. By the time you notice pain during urination or ejaculation, you may have a yeast infection so bad that it has taken over your bladder and maybe even your kidneys and testes. It is hard to convince your doctor that you can have this type of a problem as there isn't too much info about male yeast infections out there but it does happen. Try a Google search for Interstitial Cystitis. That may shed some light on the situation for you and your doctor.I had to take 4 weeks of Ketocanozole (not sure on the spelling there) at 200mg per day before things returned to normal (pain started to diminish to almost nothing by day 7.) Before that I tried Doxycycline, Diflucan and Avelox to no avail. Make sure you ask your doctor for a opiate based pain med like Vicodin, Codene or Percocet to help with the pain. Also, take the recommended 800mg of Ibuprofen every 6 hours. That will help with the inflammation. Mine felt like ******g thumb tacks and razor blades; sometimes crippling pain. A male doctor will kick down the meds you need for sure.If you do have a yeast infection in your bladder, DO NOT DRINK CRANBERRY JUICE!!! Everybody will tell you to do that but it does not work for this particular issue. Cranberry juice is good for a Urinary Tract Infection but not for a yeast infection in your bladder. It will make matters worse by acidifying your urine which will make it burn like ***l if your urethra is irritated from a yeast infection (urethritis.) Stick to water only until it clears up and increase your intake to 1 gallon per the first 10-12 hours of every day.You must get on a anti fungal medication immediately and try like ***l to talk your doctor into giving it to you for more than 2 weeks. Your bladder needs time to heal or it will come back. Ketocanozole worked for me but I have read that Nystatin works for some folks as well.If you do have a yeast infection in your bladder and not a STD or bacterial infection, it will destroy the quality of your life for sure. What makes it worse is there isn't much info out there so it's hard to get it fixed and it's hard to find a shoulder to cry on.I feel for you guys. Good luck!!!
Anonymous 42,789 Replies
March 5, 201010:18 AM 0 0 Flag this Response

Definitely look up interstitial cystitis. It is more common in women, but also occurs in men. However....interstitial cystitis is NOT a yeast infection of the bladder. Interstitial cystitis is not an infection of any kind, but rather an inflamed bladder that is believed to be an autoimmune disorder, although not much is actually known about it.
Anonymous 42,789 Replies
March 14, 201008:39 PM 0 0 Flag this Response

Definitely look up interstitial cystitis. It is more common in women, but also occurs in men. However....interstitial cystitis is NOT a yeast infection of the bladder. Interstitial cystitis is not an infection of any kind, but rather an inflamed bladder that is believed to be an autoimmune disorder, although not much is actually known about it.I don't know what this is; I *****d up blood twice when I had this, and I have had it since 17. The condition strikes AT RANDOM, and can be slight to severe in pain. Docs don't know what the bleep it is, and I'm a virgin so STDs are out. After nine years, I'm at my wit's end. HELP!
Anonymous 42,789 Replies
March 29, 201007:49 AM 0 0 Flag this Response

Same deal here! On and off for the past 10 years, last year things really flared up thinking it was a UTI "from where I didn't have a clue", so to the doc I went, done an analysis and found blood and protein in the urine, sent it off to be tested, no bacterial growth.So this is the 4th time this year and at the moment I'm taking the risk and riding it out with no antibiotics "as if this is a yeast infection antibiotics would have to be a bad idea".Note: Look at your tongue and see if its covered with a thin white or yellow film, this is the deal for me so I'm wondering if I have a yeast infection.If that's not bad enough I have Crohns and was just on Flagyl which I think is the culprit for the yeast to go wild this time round.Told the doc about it and he gave me a bottle of tablets which I had to chew for Candida/Yeast around 8 weeks ago.Like some of you guy's its driving me nuts, it itches and sore when you first pee, ejaculation makes my eyes water and feels like your passing acid then its OK.I was on the cranberry juice, so now I'll stop that for now as I'm convinced it's not a UTI or a STD as there is no plausible reason how it could be.The next docs appointment is in a few weeks so I'll really put the pressure on.Best of luck finding out what's going on - seems like this is not an isolated thing either.PS: Don't we have any medical experts coming into this forum, thought there would be?
Anonymous 42,789 Replies
May 25, 201008:14 AM 0 0 Flag this Response

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Same Problem here mate. The reason I came here for to find a answer for this horrible probelm.At the moment, I have to EMPTY my FULL urine bag, but I cant due to the stupid pain if I urinte.The highest I urinate is ONE SMALL DROP! And pain goes like electricity in my penis. AAAAA!!!!!!Anyone help us out here please?-Ok guys here is some light about to be shed on the subject. Ever since I was born I hated going to the bathroom because it would burn when I peed. There was one point where there was blood in the urine also. I have recently undergone a surgery to fix this and I am now 18. So you can see that this would have upset me. It would also hurt to ejaculate. The surgery I have just undergone is called a "urethro plasty buccal mucousa"! And what they did this for was a stricture, actually two! So they found one stricture (narrowing or pinching off of the urethra) down where the penis bends into the body and they found the other one right under my bladder. So what they did is they cut out both strictures (urethro plasty) and then reconstructed me a new urethra made from SIX INCHES of my cheek! This has happened almost two weeks ago. I have a foley catheter in, and will for about another 3 weeks due to the severity of my strictures. The procedure took 8 or more hours to do. I highly suggest you go talk to a urologist about your problem.Oh and by the way We (doctors and I) have been trying since I was about twelve to figure out what was wrong with me. So I have been waiting a really long time to finally have a normal life.Thanks, and I am sorry about this I know how sucky it is!Just consult with a urologist ASAP! Don't put it offP.S. Your condition might not even be close to this so don't get freaked out and assume you will have this procedure done too. Good Luck Sincerely,J.P.B.
Anonymous 42,789 Replies
June 8, 201009:43 AM 0 0 Flag this Response

I have the same problem also. Mine started with a rash though. Tested negative for all STDs including herpes. Antibiotics have done nothing and I've had constant urethral discomfort, burning urination and testicular pain. I'm convinced It's a fungal infection, but I haven't been able to convince the doctor to give me an oral antifungal. Had you had any tests or cultures confirm a fungal infection?
Anonymous 42,789 Replies
August 7, 201007:55 AM 0 0 Flag this Response

Any idea if any of these problems can cause complications with fertility? I have some of the same symptoms as described here. I have had pain in a distinct part of my urethra toward the head on the left of the inside. The pain often increases after ejaculation and it cannot be an STD since I have only had sex with my wife and we were both virgins until we were married. Also, I had this problem before she was even my girlfriend. I also occasionally get a pinkish tint to my urine right after I void my bladder that is probably a small bit of blood. I went to a doc a few years ago, but found this to be embarrassing and I didnt finish the complete cycle of meds. Ultimately, my concern is my fertility. The pain is not terrible by any means but I really want to be a father in the near future.Thanks from the western US.
Anonymous 42,789 Replies
November 17, 201007:19 AM 0 0 Flag this Response

I have the same problem also. Mine started with a rash though. Tested negative for all STDs including herpes. Antibiotics have done nothing and I've had constant urethral discomfort, burning urination and testicular pain. I'm convinced It's a fungal infection, but I haven't been able to convince the doctor to give me an oral antifungal. Had you had any tests or cultures confirm a fungal infection?exaxtly the same thing that im going through i get real mad at times bc it started in my teen and i still cant get no help
Anonymous 42,789 Replies
December 20, 201003:14 AM 0 0 Flag this Response

Hi Guys:

... been there done that and I also believe that I had (on and off) a fungal infection.

Here is my solution: If you live in the US, Canada or the EU there is a simple thing you can try:
Get thee to a pharmacy and buy a vaginal yeast infection treatment for the ladies. It is a single dose over-the-counter. prescription free pill (Canesten or Diflucan, 500 mg ORAL) both of which contain fluconazole, which is a fungal specific cytochrome P450 inhibitor with very few side effects. Cost ~ 20 $ or so.
Since the dosage is design for ladies your male metabolism and larger liver will handle this likely without any problems. Just as with any medication, don't drink alcohol for 72 hours after/while you take it.
If it works you should see improvement with 12 hours or so.
Works for me !
Disclaimer: At your own (but very low) risk! I am not an M.D., but do know my way around some biochem ...

Bonne Chance !
Anonymous 1 Replies
June 12, 201503:40 PM 0 0 Flag this Response





http://www.ourhealth.com/conditions/i-cannot-get-a-diagnosis/urethra-itching-and-pain-no-std