This topic contains 15 replies, has 2 voices, and was last updated by Meagan 3 weeks, 6 days ago.
March 5, 2019 at 7:55 pm #832
I want to hear your story! Each of us has a story to share, and I would love to hear yours. Remember, this forum is a safe place where you can meet others who also have a story to tell. If you do not feel ready that’s OK, just share three interesting facts about yourself. I am excited you are here, and I can’t wait to connect with you ~ ElisabethMarch 5, 2019 at 8:34 pm #833
I’m Adriana, mom of two and marketing professional from Miami. I was just diagnosed with IC last week and the news rocked my world but finding Elizabeth’s instagram and story gave me peace and hope.
I just started on a strict diet, Elmeron and Myrbertriq last week when my diagnosis was confirmed and so far well my symptons have gone from 100% to 40%. Hope to find a natural way to deal with them but so far I feel very blessed by God that these medications have helped me. Already ordered my book! Thanks for openning this space for all of us to share experiences, everything I found online was horrible and hopeless testimonies, finding you was a bliss.March 5, 2019 at 8:45 pm #834
Hi my name is Emily Gammell & I was diagnosed with IC almost a year ago but i believe I’ve had the disorder for most of my 20s.
I am now 30. I recently had an amniotic allograft injected into both pudendal nerves & Botox into my pelvic floor muscles. I also had my bladder stretched & scoped. I was awake for this procedure due to insurance refusing to help on booking an OR. Due to the expense I opted to be awake to have the procedure done. I am thankfully feeling relief.
I was told at 27, by a female gyno that my pain was all in my head & turned away. She only offered anti depressants. I have never allowed any dr to prescribe opiates to me due to only masking pain & in return they create addiction & dependence.
The failures of our health insurance & pharmaceuticals within the US have lead me to feel my life’s purpose is to patient advocate.
I am no longer able to work full time as I’ve been a licensed hair stylist for 11years. I’m at a cross roads at 30 with feeling the pressure to make life & career changes due to IC.
I have read countless articles & research on IC & I’m saddened to know women are committing suicide due to this illness & health insurance companies controlling doctors course of treatments.
I can not count how many letters I get from insurance telling me that treatments my dr advises are deemed medically unnecessary.
I believe it is a basic civil right to provide quality care to our citizens thus the reason I felt urged to write to you after seeing an IG post of yours asking patients to.
I’ve followed you for a bit now & I would love to speak further & help in any way possible.
I am an otherwise healthy, vegetarian, no other known disorders, nor accidents, trama or addictions to of caused IC.
As you know most believe IC is an autoimmune disorder & also believe if you have one you probably have more than one.
I’d love to speak further.
Thank you for your work on helping women as ourselves & I look forward to speaking & possibly working together soon.
-Emily (Brooklyn,NY)March 6, 2019 at 3:03 am #835
I’m Jenn, 31 years old. I have many medical issues that try to manage each and everyday. I am a special education teacher, however, after getting sick a few years ago with pseudo tumor cerebri I needed brain surgery and went on disability. Since, I’ve gotten a lot more answers to medical problems I had been suffering with for many years and even decades in some cases. I finally got my IC diagnosis about two years ago. I’ve since learned to do my own bladder instillations and am also on uribel, and suppositories. I go for pelvic pt. I am finally sleeping through the night most nights which is huge. I do still suffer and and not sure if it’s always IC, fibromyalgia, endometriosis or pcos pain. I believe I’ve had IC for longer than the 2 years, especially because I finally got my endometriosis diagnosis and that took almost two decades!
I love my doctor who treats me for IC and now co-treats endometriosis. If it wasn’t for her and my great pelvic pt I don’t know where I would be.
I do like to know that I’m not alone and learn more about how I can help myself get better and that’s when I found this page and a few others. I was at a place with my anxiety and depression that I felt so stuck until I realized there is some hope out there and more I can learn to help myself. Thanks for the opportunity to share.March 8, 2019 at 2:04 am #838
Hi Adriana, Emily, and Jennifer! I feel incredibly privileged to be able to read your stories and learn about your individual journey with IC. Whether you were recently diagnosed (like Adriana) or are a long time sufferer, I want you to know that there is HOPE!
I was diagnosed thirteen years ago, and during my journey, I found that I was unable to separate myself from the notion that an answer existed- I just had to find it. Even on my most difficult days, the thought of letting go of Hope seemed far more painful than my current state. As some of you may know, I was eventually able to figure out why I was in pain which then allowed me to work towards restoring balance. I do agree with you Emily that it is an autoimmune condition and that by addressing it as such one can find their way back to health.
I feel like I already know each of you as our stories are all very similar. I wish we could sit down together and talk over a warm cup of tea. I would love to see your faces, hear your voices, and hug each of you. You are a warrior and an incredible blessing to your family and community. IC may have taken many things from you, but I promise you that your current state will not be the end of your story. Press on IC Warrior and fight daily to get your life back.
If there are any topics you would like us to cover on here or any questions you may have just let me know. Have a wonderful evening!
~ ElisabethMarch 11, 2019 at 5:02 pm #841
Elisabeth, I stumbled across your website and was struck by how much your story is parallel to mine.
My name is Caroline. I live in California. I am 29. I have suffered from chronic migraine since age 4. It has had times that were so bad where I would have a 3 week long migraine and be in and out of urgent care almost every day.
I have been diagnosed in the last 3 months with IC. I have food intolerances and clear triggers to migraines but have not figured out triggers for IC (even though I have avoided citrus, tomatoes, alcohol, chocolate, added sugar, gluten, soy, and dairy). I am doing Whole30 right now, which makes me have more energy but is not making a dent on IC. I am also doing Transform 20, which is a 20-minute a day workout I can do at home that fits into my schedule.
My migraines are under control for the first time in my life. This happened in the last few months, but then IC came my way. I really hope that the IC is not a side effect of the migraine shot that finally works for me. It is a newer medicine so is a possibility but none of my doctors think it is a strong possibility.
I, too, have increased candida growth for which I take weekly fluconozole and take daily vinegar baths.
I am looking forward to reading your book, which I just ordered. I am hoping to learn from your journey. All my issues seem to be tied to inflammation.
No medication has helped my IC yet. I am having a bladder distention with a steroid installation in the upcoming weeks and am hopeful. I am going to physical therapy. I am waiting to get into an integrative medicine doctor next month. I am meditating. I am really trying to attack this from all angles but with no success so far.
I am so tired of living most of my life in some portion of pain that disrupts my life. All of this has been very disruptive to my ability to work and I am blessed that my boss is so willing to work with me. I am very much hoping to find the answer, whatever it is, so I can deal with it.
All the best,
CarolineMarch 11, 2019 at 10:09 pm #844
Your story is overwhelming! I am so sorry that you have been struggling with your health for so long. It does sound like you are on the right path which is encouraging because I believe you will find your way to health and healing. Inflammation is the precursor to most degenerative diseases so getting to the root of what is causing your chronic inflammation is key. Migraines are often caused by inflammation but may also be due to genetic variants. I cover a chapter on the role of genetics in my book and how to test for variants so that you can help support pathways that are struggling. Identifying your key triggers is critical, and you will need to address Candida head-on. My book lays out a step by step guide, but if you have additional questions, please do not hesitate to ask. I am here to help!
~ElisabethJuly 28, 2019 at 5:46 am #1326
My name is Sherri, and I’m from Michigan. I’m 52 and was diagnosed with IC 6 years ago (2013), but I’d had mild symptoms off and on that would land me in the doctor’s office to see if I had a UTI (never did) for at least 10 years before that. (And before that I had vulvodynia and urethrodynia.) I also have Hashimoto’s (diagnosed 2006), Raynaud’s, pernicious anemia, and lupus. The last two were diagnosed just last year, although I’d had the same lupus symptoms 3 years ago but with negative test results that I had last year with positive test results.
When I was first diagnosed with IC, my urologist put me on Myrbetriq and Elavil, and that (along with no longer doing any crunches or other abdominal strengthening exercises) was enough to keep my symptoms manageable. I was even able to keep running marathons, although I often had to take prescription pain medication during or after a long run. Two years ago, I had my first long term, debilitating flare that had me in bed for 2 weeks and unable to run for 2 months. At that time, my urologist had me start seeing the nurse practitioner in his office, and I tried everything she suggested: Elmiron (didn’t do anything even after 6 months on it), the restrictive IC diet, bladder installations of heparin and lidocaine (bliss while the solution is in my bladder, mixed results for whether it seems to reduce pain otherwise), vaginal Valium suppositories, and physical therapy. I ultimately improved to the point where I felt almost normal a lot of the time, but continued to receive bladder installations as needed, no more than 5 weeks apart and sometimes weekly. I was able to resume running, even running several more marathons (my last one was this April) even though running still increased my pain temporarily a lot of the time.
But for the last month I’ve been experiencing a flare that’s steadily been getting worse, requiring lots of time in bed (and no running), and currently I’m in severe pain. (Interestingly, my worst IC flares and my lupus flares have always occurred during the summer, which is the least stressful time of year for me – I’m a college math instructor and have the summer off work.) I recently read the book “Eat Dirt” by Dr. Josh Axe, “The Autoimmune Solution” by Amy Myers MD, and I’m in the middle of Elisabeth’s book right now. That’s how I found this forum. I started on the AIP diet immediately and started taking a soil-based probiotic by Dr. Axe (but it contains apple cider vinegar so I’ve wondered if that’s partly why I’m getting worse – although I don’t know of any foods except clove that definitely flare me up and often when I’ve had something that I shouldn’t on the IC diet I feel fine), plus bone broth, digestive enzymes, and L-Glutamine. It’s been a week so far on those supplements and almost two weeks on the AIP diet. I also ordered many additional supplements from Amy Myers MD, including those to treat Candida and SIBO, and just started those today. But I have gone from tolerable bad pain to severe intolerable pain today, so I think something in one or more of them has likely irritated my bladder further. So I’m stopping all supplements for now but will continue on the AIP diet and bone broth. And I’ve come to the conclusion that I need to seek a functional medicine doctor to help me with all of this, because it’s just too much for me to figure out on my own. Even finding a doctor seems overwhelming.
Thank you for the opportunity to share my story. Sometimes I feel fairly hopeless, but I haven’t given up yet. I listen to the song “Even If” by MercyMe a lot.July 28, 2019 at 7:14 am #1327
Thank you so much for reaching out and for sharing your journey with us! Despite the hour I just read your post and couldn’t wait until tomorrow to respond. Since you read the Autoimmune Solution you are familiar with the autoimmune spectrum which explains the multiple health issues you have personally endured. As far as the worsening of IC symptoms, unfortunately, each of us is unique which means you will need to work closely with a functional medicine doctor who can get to the root of your inflammation. I will say this, The SBO from Dr. Axe is not well tolerated by those that have gut infections including SIBO because it contains prebiotics. If you are unable to tolerate apple cider vinegar it may be due to histamine intolerance. Considering how long you have been sick it is likely that you have multiple issues going on but, the protocol laid out in my book of detoxing, supporting liver function, cleaning up your diet, addressing infections, balancing hormone levels (checking cortisol and thyroid), and supporting pathways through genetic nutrition will definitely help in restoring balance to the body. The goal HERE is to restore balance to the gut and the bladder’s microbiome.
A probiotic you may want to consider is MEGA Sporebiotic by Microbiome Labs. The AIP diet may be the best diet for you at this point. Oil of oregano may help with the flareup and Quercetin may help reduce IC symptoms. Magnesium and Omega 3’s are crucial. I wish I was there with you to hug you and help you figure this out. A warning- The supplements from Dr. Amy Myers to treat Candida overgrowth may worsen IC symptoms for some so please proceed with caution. Whatever supplements you add in START SLOW!!!!
Don’t get overwhelmed and take things one day at a time. Bone broth can also bother those with histamine intolerance as can foods high in histamine. Again, I think you are on the perfect diet based on symptoms. You are on the right path and it’s incredible to hear you taking control of your health. All the reading you are doing is encouraging and gives me hope that you will find your way. If there is anything else I can do please let me know! Question- have you tried the recommended detox from Metagenics? I know that you are frustrated but the truth is that you had to get to this point to reach out and begin searching for answers (which is a blessing in disguise). There is a reason your body is in a state of chronic inflammation and you need to get to the root cause which is the road you are on! I wish you the very best and will keep you in my prayers. ~ ElisabethJuly 28, 2019 at 6:28 pm #1328
Thank you for your immediate response, Elisabeth. I didn’t sleep much last night and was surprised when I rechecked the forum in the middle of the night to see that you had already responded!
I have not tried the recommended detox from Metagenics, at least not yet. It’s only been two weeks since I first started reading up on leaky gut and how to heal it, and everything I’ve read has had some differences. I just bought a LOT of supplements from Amy Myers MD (before I came across your book), thinking I was on the right track. But with the increase in my IC symptoms yesterday after taking many of those supplements, it looks like I will be returning most of them, as they were quite expensive and I will need to take advantage of the 30 day return policy before I can figure out which I can tolerate and which I cannot. I should have taken things more slowly and gotten medical help with this. This is what I bought from her: For inflammation/immune support: curcumin, resveratrol, acetyl-glutathion. For gut health: her SBO probiotic, l-glutamine, collagen powder, leaky gut repair powder, digestive enzymes, betain with hydrochloride. For yeast overgrowth: caprylic acid, candisol (you already said this is not well tolerated so I will return it for sure). For SIBO: MicrobClear. For adrenal support: AdrenoMed. And her fish oil and bone broth protein powder. So if I were just going to start with the bare minimum, what is most likely to be well-tolerated in terms of IC plus most helpful? I’m thinking the fish oil, collagen, digestive enzymes, maybe her protein powder, and maybe her SBO (or I can return her SBO and get the one you recommended if there’s a reason to do that). Do you agree? Anything else? L-glutamine?
Plus you said I should take magnesium so I will look into that.
I don’t think I have a histamine intolerance (but of course a doctor would be able to help me figure that out better than I can myself). I just was wary of the apple cider vinegar in Dr. Axe’s probiotic because on the IC diet vinegar is not allowed and I have avoided it for the last two years.
Thank you again for your help. I really appreciate it.
~SherriJuly 29, 2019 at 4:41 pm #1332
You have a number of really good supplements and then you have a few that need to go back. It is tricky to figure this all out but you are trying and that’s good. This part of the journey is mostly trial and error, so be patient. I was told apple cider vinegar is safe for those with IC and that it can help with flare’s but again info is always changing and I never committed to drinking it regularly because it tastes terrible. I am currently working on the second edition of my book because I need to update supplements and information. I do recommend Dr. Myers supplements for candida in my books, but this is not the best plan as it can irritate the bladder. I was trying to provide an option other than medication and waiting for more research to come out. Currently, it looks like a low-antihistamine diet that is also rich in coconut oil is the best course of action along with curcumin which is antimicrobial. Apparently, research has shown that candida overgrowth and histamine intolerance are linked. I wrote a blog post on histamine intolerance and you may want to check it out to see if you have any of these symptoms.
Supplements that should be perfectly safe- curcumin, glutathione (you can you use NAC which is significantly cheaper and available on Amazon), l-glutamine, her probiotic is probably fine, collagen powder, digestive enzymes and HCL, fish oil, microbclear, and adrenal support.
Everything else should go back- leaky gut repair powder, caprylic acid, and candisol. I am not a huge fan of the protein powder but the only issue may be with histamine intolerance. There are a couple(liquid forms) on the market made only with carrots which may be your best bet- You can heat up a cup and drink it.
You definitely need to get some testing done to take the guesswork out of some of this. Remember to start slow with the supplements because you don’t want to overwhelm your body and you need to figure out which ones are tolerable and which are not. If you need anything else please let me know~ ElisabethSeptember 2, 2019 at 4:21 am #1506
I was both diagnosed and not diagnosed with IC. Three doctors, including and acupuncturist said I had it and my Urologist wasn’t ready to land there. But after no known infections and no relief, I’ve come to the realization that this has to be it. I’m now 30 but I remember countless times over the years where I thought I had a UTI and the tests would always come back negative. Then in April I thought I had one again, same thing…negative. So I went on 2 different courses of antibiotics and then 3 rounds of diflucan and nothing helped. My urologist made me to a bladder test and I cried the entire time, the catheter felt like needles and it made things worse. So did the countless bladder control meds he had me try. After that test I had had enough and started googling. I found your book and finally read it. I cried through most of it, my mom died a little over a year ago and I think in large part this all has to do with her. She had a terrible 4 year battle with cancer and I know my body was in survival mode, so now that she’s gone and I’m with a new boyfriend I feel like my body is shutting down, plus I have eaten a truly terrible diet and I feel completely depressed. This has also been a trying time to have a new relationship, I’m worried I’ll never be able to “be” with him ever, again. Then I do the whole spiral into hopeless oblivion. But I went out and bought a few of the items you talked about in your book as well as oil of oregano in hope of eating clean and starting somewhere. I also want to see a Pelvic Floor therapist, I can feel muscle spasms and I feel like the entire area will never be the same. I’m only 5 months in and I feel like I can’t imagine another 5 months.
Here’s to hoping!
VanessaSeptember 2, 2019 at 9:51 pm #1507
Hi Vanessa, thank you so much for sharing your story. You have been through a lot, especially with the loss of your mother. I can’t imagine the weight you are carrying, and I am praying for both your physical and emotional healing. Despite how painful your situation is, there is hope, and I promise you will find your way. You are on the right path, and though it may take you a while to get to the root of your IC, once you do, your symptoms will begin to quiet down. Take things one day at a time and remember that this is a process. Along the way, you will discover things about yourself, and in the end, you will emerge a different woman than you were when the journey began. This is a season, and it’s important to view it as that. IC is a beast, but it is not impossible to overcome, and you are an overcomer! Stay the course, and don’t give up. If you need anything, please email me- I would love for you to join us for Self-Care September (you can find the link on our IG and Facebook page). ~ ElisabethSeptember 23, 2019 at 6:30 pm #1526
I was diagnosed in May with iC after a few months of my primary being at a totally loss and begging to see a urologist. It started after two rounds of antibiotics and a yeast infection. I did diflucan and I believe that took care of my candida issue as I have been working with a functional medicine doc and neither my OAT nor my GI Map came back positive for yeast. The only things she found were H pylori and strep in my gut, low beneficial bacteria and low vitamins D, C and B6,B12. I’ve been treating with GI synergy for almost three months and have cut out gluten and dairy and sugar, but still having problems. Hormones have been checked and are normal expect for maybe being slightly low in progesterone. All cortisol and thyroid levels are perfect. I’ve been doing the sauna and epsom salt baths for detox with tons of water. I’m about to do a myers way food elimination because it seems like the healthier I eat the worse I feel and I have not been able to identify food triggers yet. I’m just scared to eat everything! Any other advice? For supplements I’m taking bladder rest ( quercitin), a vitamin D patch, the GI synergy for gut infections, and intermittently Thorne basic B complex and ester C. The last two may trigger me a bit, but not sure. I feel like I’m doing so much, but still symptomatic! It’s hard to be patient!September 23, 2019 at 9:21 pm #1528
So the thing to remember is that something is causing your IC and you will need to identify what exactly is going on. What brand of GI Synergy are you taking? I want to look up the ingredients. I have found that it is sometimes better to just take l-glutamine, NAC, and collagen separately. Also, B6 can irritate the bladder so it may be best to try methylated B12 with folate. I also recommend Dr. Amy Myers supplement EstroProtect. If you remove ester C do IC symptoms die down? I know Dr. Myers believes that you need to treat H pylori bacteria with antibiotics and she sells an antibiotic support wellness kit.
Don’t be afraid of food! I feel like this is such a major issue with IC patients and for good reason, but fear and anxiety around eating can actually make your symptoms worse. Relax and take a few deep breaths. There are plenty of healthy foods you can eat that will not bother your bladder. I have recipes on my website to help get you started and we have a cookbook coming out in the next month and a half. You are doing a lot and this is amazing. Here is the thing, IC is a bit of a puzzle and so you will need to keep going until you get to the bottom of it all. You really do have to be your own health care advocate, but I know you can do this. There is hope to please don’t give up.
1. try to sleep 12 hours a night
2. Go for a 20-minute walk and get some fresh air and sunlight
3. eat a really good meal
4. Try meditating
5. start a gratitude journal and write in it daily
Additional supplements that may help:
bromelein, berberine, digestive enzymes, curcumin, magnesium l-threonate (mood and sleep), l-theonine (anxiety), omega 3’s, reishi mushroom, liver support, NAC, Activated You Morning Complete, probiotic (megasporebotic).