Natural Remedies for 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 Interstitial Cystitis Flares

There are typically 3 types of interstitial cystitis 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 interstitial cystitis 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 interstitial cystitis 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 it works.

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 interstitial cystitis 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 interstitial cystitis 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 interstitial cystitis 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 ½-1 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.

This article was medically reviewed by Dr. Michelle Sands, ND. She is double board certified in Integrative Medicine and Naturopathic Medicine and is also a Board-Certified Holistic Nutritionist, and competitive endurance athlete. As always, this is not personal medical advice and we recommend that you talk with your doctor.

Do you suffer from Interstitial Cystitis, reoccurring UTI’s or pelvic pain? What natural remedies have you found helpful?

About Katie Wells

Katie Wells, CTNC, MCHC, Founder of Wellness Mama and Co-founder of Wellnesse, has a background in research, journalism, and nutrition. As a mom of six, she turned to research and took health into her own hands to find answers to her health problems. WellnessMama.com is the culmination of her thousands of hours of research and all posts are medically reviewed and verified by the Wellness Mama research team. Katie is also the author of the bestselling books The Wellness Mama Cookbook and The Wellness Mama 5-Step Lifestyle Detox.

Comments

170 responses to “Natural Remedies for Interstitial Cystitis”

Stephanie

May 4, 2016

What about drinking kombucha…is that bad for IC?

Reply
Paula Emigh

May 4, 2016

Hi, I was wondering if you would share where you received your information regarding taking aloe during pregnancy. I am a midwife and was under the assumption aloe was contraindicated during pregnancy. One of my pregnant mama has IC, I am doing my research to find as many botanical remedies as possible for her to use during her pregnancy.

Thank you
Paula

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Jen

May 4, 2016

Just wanted to address coffee. Trader joes coffee concentrate. It’s low acid cold brewed and concentrated. One bottle last me a month. I make hot coffee with it and iced sweet coffee. The only coffee I can drink. Thank heavens I found one! And it’s yummy!

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Paulette Lawrence

May 1, 2016

I have IC for quite a long time but it was not diagnosed until recently. Over the years I have tried some remedies which have helped.i.e baking soda and avoiding spicy food ..However I still have flare up . I also made an interesting observation which I would like to share with you. Avoid eating late at nights or go to sleep with a full stomach. The acid seem to build up and somehow cause bladder irritation.

All the best

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Melissa

April 18, 2016

I’ve had IC for over 17 years now. Up until recently, mine has been easily managed with a few natural remedies, no soda, etc. Recently, the flare ups have become almost constant! I’m approaching 40ish so I wonder if things are just changing?…..

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Chrissy

March 13, 2016

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…

Reply
1. Annie
  
  May 23, 2021
  
  Chrissy, How long did it take you to heal from IC with the methods you used?
  
  Reply
Treasia

March 9, 2016

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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Sandra Cline

February 5, 2016

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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Toni Hills

January 26, 2016

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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Rachel

January 12, 2016

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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1. Wellness Mama
  
  January 13, 2016
  
  Thanks for sharing!
  
  Reply
2. Lara
  
  September 2, 2016
  
  I came to this forum after googling “almond milk pelvic inflammatory disease.” I have a similar suspicion. Going to cut it out and see if things get better. Will report on it next week.
  
  Reply
Janet J

December 16, 2015

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!!

Reply
1. April
  
  December 16, 2015
  
  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!
  
  Reply
Rachel

December 16, 2015

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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1. Callie
  
  December 16, 2015
  
  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!!
  
  Reply
2. April
  
  December 16, 2015
  
  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.
  
  Reply
Rachel

December 16, 2015

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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1. April
  
  December 16, 2015
  
  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!
  
  Reply
Barbra

December 14, 2015

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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Sharon

November 1, 2015

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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1. Paula
  
  November 4, 2015
  
  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.
  
  Reply
Paula

November 1, 2015

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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April

October 28, 2015

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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1. Brianne
  
  October 28, 2015
  
  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.
  
  Reply
  1. April
    
    October 28, 2015
    
    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!
    
    Reply
    1. Brianne
      
      October 28, 2015
      
      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!
      
      Reply
      1. April
        
        October 29, 2015
        
        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!
      2. Erica
        
        March 4, 2016
        
        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?
      3. Brianne
        
        March 4, 2016
        
        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.
      4. April
        
        March 5, 2016
        
        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.
2. Sarah
  
  December 21, 2015
  
  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!
  
  Reply
  1. April
    
    December 24, 2015
    
    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.
    
    Reply
  2. Yianna Batchelor
    
    April 18, 2018
    
    I feel exactly the same. I haven’t had an attack for a couple of yrs, just burning here and there, but the last couple of months I’m going through a lot of stress and it’s killing me. Urgency, pain, heaviness, burning. My husband keeps st me to give up coffee. Why would coffee not bother me for 2 yrs? Spicy and citrus kill me so I really avoid that like the plague. I’m 60 and I’ve been dealing with this since my late 20s. I took a hell of a lot of unnecessary antibiotics thinking it was UTIs. Only the last 3 yrs I realized what it was after googling my symptoms but no infection!!
    
    Reply
3. Erica
  
  March 6, 2016
  
  Thank you both for the input! I’ve wondered about pregnancy and this condition as well.
  
  Reply
Kim

October 13, 2015

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

Reply
1. Karen
  
  October 19, 2015
  
  I’d like to know more about your essential oils blend. How can I get more info.?
  
  Reply
2. Linda Kavitz
  
  March 19, 2016
  
  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
  
  Reply
3. Fiona
  
  May 9, 2016
  
  Just came upon your amazing post and although it is from last year, I just wanted to tell you how much it touched me. What a warm and courageous woman you are. Your journey has been long and arduous and filled with terrible things but your spirit shines through.
  
  My thoughts and prayers are with you.
  
  Reply
4. Skye
  
  August 7, 2016
  
  Dr. Kim:
  
  I too have IC and have found little that works long term. I would like to find out about the essential oil treatment you spoke about. Also, I have know idea how I found this blog. Your help and information would do do greatly appreciated!
  
  Blessings,
  Skye
  
  Reply
5. Kathy
  
  January 6, 2018
  
  Dr Kim,
  I would like to know more about oil blend
  
  Kathy
  
  Reply
Natalia

October 7, 2015

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.

Reply
Brianne

October 7, 2015

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!

Reply
1. Megan
  
  August 17, 2021
  
  How are you doing now? How do you get into remission? Thanks
  
  Reply