The Interstitial Cystitis Athlete

International Women’s Day. Celebrating women’s achievements, raising awareness about discrimination and taking action to drive gender parity. Today I am celebrating the achievements of Women who support Women. Having receive support from women and having women “friends” turn their back on me, I know the positive power that a group of supportive women can create and the destruction that a group of spiteful critical women can do. To quote Amal Clooney “The worst thing that we can do as women is not stand up for each other, and this is something we can practice every day, no matter where we are and what we do- women sticking up for other women, choosing to protect and celebrate each other instead of competing or criticising each other” . To all who suffer from , May you have a pain free day.

The Queen of Start Over is starting again. I was planning on completing the 100km Noosa Ultra at the end of March, but between an ankle issue, interstitial cystitis and Graves’ disease, 2023 is not going to be my year for achieving what is proving to be a difficult goal to reach. Running that 100km ultra! But I am not one to give up and there is only one option:- to start again. So this week, I am back to the beginning of a 15 half marathon training plan, followed by a 18 week marathon plan , followed by a 19 week 100km plan. There is some wiggle room in that plan in case anything flares up but hopefully in 54 to 56 weeks , I WILL BE at the starting line of that seemingly elusive 100km race.

I’ve had a few people ask which aloe Vera product I use here in Australia. I use an inner leaf juice (yes I know we get told to avoid the juice but hey, this works for me and it has no citric acid in it) from and I combine it in a drink with Gut relief which also has aloe it and other IC soothing Ingredients such as slippery elm, curcimum and marshmallow plus others and some prebiotics. This combination works for me. I have bladder centric IC with hunners lesions. Remember this may not work for you, it could flare you up or heck, it could help settle things down. Our life with IC is one huge experiment with what we eat and drink. I shall also put an apology here. My short break from social media has turned into a two year break and I’m still not in the swing of things yet but i feel this maybe the start of my social media full time return. Wishing you all a pain free day.

𝐒𝐨𝐦𝐞 𝐝𝐚𝐲𝐬 𝐈 𝐭𝐡𝐢𝐧𝐤 𝐈’𝐯𝐞 𝐠𝐨𝐭 𝐦𝐲 𝐬𝐡𝐢𝐭 𝐭𝐨𝐠𝐞𝐭𝐡𝐞𝐫, 𝐲𝐨𝐮 𝐤𝐧𝐨𝐰, 𝐈 𝐝𝐫𝐢𝐧𝐤 𝟐𝐋 𝐨𝐟 𝐰𝐚𝐭𝐞𝐫, 𝐞𝐱𝐞𝐫𝐜𝐢𝐬𝐞, 𝐞𝐚𝐭 𝐦𝐲 𝐯𝐞𝐠𝐠𝐢𝐞𝐬, 𝐬𝐨𝐜𝐢𝐚𝐥𝐢𝐬𝐞 𝐰𝐢𝐭𝐡 𝐬𝐨𝐦𝐞𝐨𝐧𝐞 𝐰𝐡𝐨’𝐬 𝐧𝐨𝐭 𝐦𝐲 𝐮𝐛𝐞𝐫 𝐞𝐚𝐭𝐬 𝐝𝐫𝐢𝐯𝐞𝐫-𝐁𝐮𝐭 𝐨𝐧 𝐨𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬, 𝐈 𝐫𝐞𝐚𝐥𝐥𝐲 𝐛𝐥𝐨𝐨𝐝𝐲 𝐝𝐨𝐧’𝐭.𝐎𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬,𝐈 𝐰𝐚𝐤𝐞 𝐮𝐩 𝐰𝐚𝐧𝐭𝐢𝐧𝐠 𝐭𝐨 𝐜𝐫𝐲 & 𝐬𝐜𝐫𝐞𝐚𝐦 𝐎𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬, 𝐚𝐭 𝟗𝐚𝐦 𝐈’𝐥𝐥 𝐬𝐢𝐩 𝐰𝐢𝐧𝐞 𝐭𝐡𝐫𝐨𝐮𝐠𝐡 𝐚 𝐬𝐭𝐫𝐚𝐰.𝐎𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬,𝐈 𝐠𝐞𝐭 𝐬𝐢𝐜𝐤 & 𝐭𝐢𝐫𝐞𝐝 𝐨𝐟 𝐬𝐩𝐢𝐧𝐧𝐢𝐧𝐠 𝐬𝐨 𝐦𝐚𝐧𝐲 𝐩𝐥𝐚𝐭𝐞𝐬.𝐎𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬, 𝐈 𝐜𝐫𝐲 𝐚 𝐥𝐢𝐭𝐭𝐥𝐞. 𝐎𝐭𝐡𝐞𝐫 𝐝𝐚𝐲𝐬, 𝐈 𝐰𝐢𝐬𝐡 𝐈 𝐜𝐨𝐮𝐥𝐝 𝐭𝐡𝐫𝐨𝐰 𝐚𝐰𝐚𝐲 𝐦𝐲 𝐩𝐡𝐨𝐧𝐞. 𝐈 𝐠𝐮𝐞𝐬𝐬 𝐈’𝐦 𝐬𝐚𝐲𝐢𝐧𝐠 𝐢𝐬 𝐈 𝐫𝐚𝐫𝐞𝐥𝐲 𝐡𝐚𝐯𝐞 𝐢𝐭 𝐭𝐨𝐠𝐞𝐭𝐡𝐞𝐫 & 𝐈 𝐰𝐚𝐧𝐭 𝐬𝐨𝐦𝐞𝐨𝐧𝐞, 𝐬𝐨𝐦𝐞𝐰𝐡𝐞𝐫𝐞 𝐭𝐨 𝐤𝐧𝐨𝐰 𝐭𝐡𝐚𝐭. 𝐓𝐡𝐚𝐭 𝐝𝐞𝐬𝐩𝐢𝐭𝐞 𝐰𝐡𝐚𝐭 𝐬𝐨𝐜𝐢𝐚𝐥 𝐦𝐞𝐝𝐢𝐚 𝐬𝐮𝐠𝐠𝐞𝐬𝐭𝐬 𝐭𝐡𝐚𝐭 𝐰𝐞’𝐫𝐞 𝐚𝐥𝐥 𝐫𝐮𝐧𝐧𝐢𝐧𝐠 𝐦𝐚𝐫𝐚𝐭𝐡𝐨𝐧𝐬, 𝐠𝐞𝐭𝐭𝐢𝐧𝐠 𝐩𝐫𝐨𝐦𝐨𝐭𝐞𝐝, 𝐞𝐚𝐭𝐢𝐧𝐠 𝐚 𝐬𝐚𝐥𝐚𝐝.
𝐍𝐨𝐭 𝐞𝐯𝐞𝐫𝐲𝐛𝐨𝐝𝐲 𝐢𝐬 𝐝𝐨𝐢𝐧𝐠 𝐭𝐡𝐚𝐭, 𝐚𝐥𝐥 𝐨𝐟 𝐭𝐡𝐞 𝐭𝐢𝐦𝐞. 𝐒𝐨𝐦𝐞 𝐩𝐞𝐨𝐩𝐥𝐞 𝐥𝐢𝐤𝐞 𝐦𝐞 𝐚𝐫𝐞 𝐣𝐮𝐬𝐭 𝐭𝐫𝐲𝐢𝐧𝐠 𝐭𝐨 𝐬𝐮𝐫𝐯𝐢𝐯𝐞, 𝐣𝐮𝐬𝐭 𝐭𝐫𝐲𝐢𝐧𝐠 𝐭𝐨 𝐠𝐞𝐭 𝐭𝐡𝐫𝐨𝐮𝐠𝐡 𝐭𝐡𝐞 𝐝𝐚𝐲 𝐰𝐢𝐭𝐡𝐨𝐮𝐭 𝐬𝐞𝐥𝐟 𝐜𝐨𝐦𝐛𝐮𝐬𝐭𝐢𝐧𝐠 𝐨𝐫 𝐠𝐨𝐢𝐧𝐠 𝐭𝐨 𝐣𝐚𝐢𝐥.
𝐀𝐧𝐝 𝐭𝐡𝐚𝐭’𝐬 𝐨𝐤𝐚𝐲. 𝐈’𝐥𝐥 𝐚𝐝𝐦𝐢𝐭 𝐈’𝐦 𝐚𝐧 𝐚𝐦𝐛𝐢𝐭𝐢𝐨𝐮𝐬 𝐩𝐞𝐫𝐬𝐨𝐧. 𝐈 𝐬𝐞𝐞𝐤 𝐨𝐮𝐭 “𝐜𝐫𝐚𝐳𝐲” 𝐠𝐨𝐚𝐥𝐬 & 𝐨𝐜𝐜𝐚𝐬𝐢𝐨𝐧𝐚𝐥𝐥𝐲 𝐬𝐮𝐜𝐜𝐞𝐞𝐝. 𝐁𝐮𝐭 𝐭𝐨 𝐦𝐞, 𝐛𝐞𝐢𝐧𝐠 𝐬𝐮𝐜𝐜𝐞𝐬𝐬𝐟𝐮𝐥 & 𝐢𝐦𝐩𝐞𝐫𝐟𝐞𝐜t 𝐚𝐫𝐞𝐧’𝐭 𝐦𝐮𝐭𝐮𝐚𝐥𝐥𝐲 𝐞𝐱𝐜𝐥𝐮𝐬𝐢𝐯𝐞. 𝐘𝐨𝐮 𝐜𝐚𝐧 𝐛𝐞 𝐢𝐦𝐩𝐞𝐫𝐟𝐞𝐜𝐭 & 𝐬𝐭𝐢𝐥𝐥 𝐬𝐮𝐜𝐜𝐞𝐞𝐝.𝐒𝐥𝐞𝐞𝐩𝐢𝐧𝐠 𝐢𝐧 1 𝐭𝐢𝐦𝐞 𝐝𝐨𝐞𝐬𝐧’𝐭 𝐦𝐚𝐤𝐞 𝐲𝐨𝐮 𝐥𝐚𝐳𝐲.𝐄𝐚𝐭𝐢𝐧𝐠 𝐩𝐢𝐳𝐳𝐚 1 𝐭𝐢𝐦𝐞 𝐝𝐨𝐞𝐬𝐧’𝐭 𝐦𝐚𝐤𝐞 𝐲𝐨𝐮 𝐮𝐧𝐡𝐞𝐚𝐥𝐭𝐡𝐲.𝐌𝐢𝐬𝐬𝐢𝐧𝐠 𝐚 𝐫𝐮𝐧 1 𝐭𝐢𝐦𝐞 𝐝𝐨𝐞𝐬𝐧’𝐭 𝐫𝐞𝐯𝐨𝐤𝐞 𝐲𝐨𝐮𝐫 𝐭𝐢𝐭𝐥𝐞 𝐚𝐬 𝐚 𝐫𝐮𝐧𝐧𝐞𝐫. 𝐒𝐨 𝐝𝐨𝐧’𝐭 𝐛𝐞 𝐭𝐨𝐨 𝐡𝐚𝐫𝐝 𝐨𝐧 𝐲𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐚𝐥𝐥 𝐭𝐡𝐞 𝐭𝐢𝐦𝐞.𝐘𝐨𝐮’𝐫𝐞 𝐝𝐨𝐢𝐧𝐠 𝐲𝐨𝐮𝐫 𝐛𝐞𝐬𝐭 & 𝐭𝐡𝐚𝐭’𝐬 𝐞𝐧𝐨𝐮𝐠𝐡.
Credit in comments

And remember there is always outliers. And combinations of various aetiologies as well.

e.g I have horrendous hunners lesions and often my most excruciating pain is after I urinate .And yet my pelvic muscles are in pretty good shape. So I don’t fit in with the post below from the IC network. And that’s okay.

Interstitial Cystitis is simply a crap disease that needs more research.

It pays to remember that Interstitial Cystitis is an umbrella term covering a range of causes, symptoms and triggers. It’s proabably a too broad of a term that causes confusion. What are your thoughts?

Ever wonder why some IC patients can eat anything while others are down to eating just a few foods? Totally confusing, right?

Not every IC/BPS patient is food sensitive and, in fact, food sensitivity helps to identify your unique “subtype” for IC. Patients with Hunner’s lesions are the most food sensitive because they have open wounds on their bladder wall. Patients with estrogen atrophy or chemo cystitis will have food sensitivity because their bladder wall is irritated and/or struggling with dryness . Patients with pelvic floor dysfunction and/or pudendal neuralgia usually have less food sensitivity because their underlying problem is not their bladder but their muscles and/or nerves outside of the bladder. Patients with chronic overlapping pain conditions (IC, IBS, vulvodynia, fibromyalgia, TMJ, migraines, etc.) may also have some food sensitivity, especially to foods that contain caffeine that will irritate their already sensitive nerves.

- If you have pain after urination rather than as your bladder fills with urine, that suggests that your pelvic floor muscles are the problem rather than your bladder wall.

- If you do not react to any foods, this suggest that your bladder wall is healthy and that your symptoms and pain are coming from beyond your bladder.

Ask your urologist or OB/GYN for a pelvic floor assessment to determine if you have pelvic floor dysfunction (aka tight muscles, trigger points, etc.). It would be wise to avoid some of the strong risk foods, particularly coffees, teas and sodas, until your diagnosis is clarified. Bladder wall irritation and pelvic floor tension often co-exist and patients may sometimes have bladder wall flares or pelvic floor flares. Your short and long-term goal is to protect the bladder wall, relax the pelvic floor muscles and restore good circulation in the pelvis.

https://www.ic-network.com/interstitial-cystitis-diet/frequently-asked-questions-about-the-ic-diet/

.•°¤*(¯`★´¯)*¤° 𝕋𝕣𝕒𝕚𝕟𝕚𝕟𝕘 𝔻𝕒𝕪 #𝟛
4 days post cystoscopy
My first few days after the cystoscopy, I took the dogs for a walk for about 40 minutes. It was a lovely relaxing way to get the body moving. Walking is an underrated form of exercise.
Today, I felt strange. It took me awhile to work out what I was feeling. I actually had no pain. After years of having some form of unpleasant sensation around my bladder, to have no pain was the best feeling in the world. I may have cried with joy.
So to take the advantage of being pain free and a beautiful winters day, I went for a very gentle mountain bike ride.
The bladder handled it perfectly.
Graves’ disease however, is still causing some heart rate issues and as a consequence quite dramatic shortness of breath. To take it easy, I decided to stop and walk when my heart rate hit a pre determined rate. This allowed me to safely ride around for an hour. I managed 8kms in that hour. That’s a far cry for the kilometers I would have down in the past, but now is not the time for comparison of past rides. Now is the time to be gentle and keep slowly moving forward. °¤*(¯´★`¯)*¤°•.

My cystoscopy, hydrodistention and steriod injection was yesterday. This is a day surgery procedure. Unfortunately my bladder loved urine too much and wouldn’t release any after the procedure. This meant a catheter and an overnight stay in hospital.

To be discharged, I need to do three wee’s and have no more than 150mls of urine left in my bladder after voiding. Two wee’s down. One to go. Come on bladder! Do your thing.

The doctor has reported my hunners are quite evident with substantial damage most likely due to persistent UTIs. Despite not having an UTI for almost 18 months now. I have to admit, I was hoping to see a reversal in the damage…a more healthy bladder. But this wasn’t the case. It is what it is and I know what I am dealing with, which is half the battle.

Today should have been day 1 of slow returning to consistent structure training for both an ultramarathon and mountain bike marathons.

So instead of being day 1. This is now day 0 and all the fun can start tomorrow.

Well I guess it’s been awhile. Awhile back I was heading down the path of complete overwhelm. There was no one event that caused this, rather a combination of events and along the way I lost myself. After a social evening with a group of women that should have uplifted me, I came home a complete shell of myself. My husband made the decision there and then to move us back to our homeland so I could heal in familiar territory. I would not say I was broken, but I certainly had changed. It was a change I did not want people to see. So I’ve spent the last few years licking my wounds metaphorically. Social media was not an ideal place to navigate during this time. Moving countries during a covid pandemic also kept be away from the socials. But I’m back to tell my story of my journey of dealing with IC and Graves Disease while maintaining an athletic lifestyle. I sincerely hope my story and my experiments of n=1 can bring some relief and comfort to others diagnosed with these hideous diseases. So where I am at now? I am trying to settle down a bad flare of Graves Disease and my IC is showing up as daily pain. My fitness level is now at an “off the couch” level. I’m working with an exercise physiologist and I will soon have a steroid injected into my bladder wall to reduce the inflammation. Tomorrow I will officially start a low histamine diet to combat the over abundance of mast cells in my bladder. This is my own experiment with a sample size of 1. I will never give up on my goals of running an ultramarathon and being competitive in my age group for mountain bike marathons. I have just adjusted the time of when it’s going to happen. Magic can and will happen.

Have you tried immunotherapy to help you with recurrent UTIs and interstitial cystitis? I am about to start another round in hope Of getting my UTI’s under control while I save up for my iAluRil treatment.

I love . My membership has been on pause after my hydro distention at the beginning of August . Not because of the hydro distention but because of an expensive vet bill followed by the realization that my instillation treatment is going to cost me $6500 as medical insurance does not cover it. F45 is not a cheap gym. It’s worth every dollar that I spend on it but hey priorities! However one of my needs is to exercise and my dearly beloved sees a massive rise in happiness when I regularly attend F45 classes. So I AM BACK. And what better way to rejoin F45 that with a challenge. I might quietly smash this one out of the park. 😉

So what’s your favourite social media platform? Mine has to be Instagram as I like looking at photos. Thing is, I am not all that consistent with using social media. Sometimes after a long day at work and I have bladder pain with a long to do list to still complete , sitting down to look at social media doesn’t cross my mind. So if you are short on time, I would love to know which social media platform you engage with the most.

134 days to go. Day 6

Endurance Run.

Bladder Status. Mild pain all day

I missed a day of training yesterday due to work and bladder pain. I had to get the big guns out in regards to pain relief.
I’ve been asking myself was this an excuse or was it a justified reason why I didn’t train. It’s a topic that I write about in my training and trigger journal.

But today! What a wonderful day. One of my needs in life is to cycle regularly with my husband. Today we explore new trails at a mountain bike park in a neighbouring town. We did a short 20km ride with 346m of elevation.

In the afternoon, I headed into the forest for a run while hubby walked the dogs.

I think that made up for my lost training day yesterday. Legs are a little sore but it’s that feel good sore

I run to give faith that better is possible .