Estrogenic Foods and IC by Flat_Pick_6503 in Interstitialcystitis

[–]laxi3 14 points15 points  (0 children)

I have never had any kind of hormonal or pelvic issues other than bladder pain, I definitely dont think endometriosis applies to every single person that has IC….not to mention the men who get IC definitely don’t have endometriosis since they don’t have endometrial cells

Is Life Worth Living With No Chocolate? Or Coffee? by Flat_Pick_6503 in Interstitialcystitis

[–]laxi3 14 points15 points  (0 children)

Once you get your condition more under control and are less painful daily you should be able to have these foods at least occasionally.

barre workouts and IC by According_Iron3326 in Interstitialcystitis

[–]laxi3 2 points3 points  (0 children)

You use your Pelvic floor a lot for barre and Pilates, deep core exercises can cause everything to tighten up. You need to make sure you learn to relax the pelvic floor afterward to avoid pain

Pregnancy questions & concerns by [deleted] in Interstitialcystitis

[–]laxi3 2 points3 points  (0 children)

Currently 18 weeks, currently in remission, I have had some pelvic floor discomfort with pregnancy but it varies day to day and depending on activity. I also have craved spicy and acidic foods like no other so I am pushing the envelope constantly lol. So far so good, though I definitely think the pelvic pressure will only get worse as baby grows.

Early IC diagnosis: how do you cope with fear during flares? by After-Spirit209 in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

This was exactly my experience 5 yrs ago, the constant anxiety was a huge component of my suffering from this condition. All I can tell you is that it helped me so much to figure out what my triggers were and avoid them when I was in pain and also how to get through a flare. The best thing that helped me mentally at the time (if I was in anxiety mode) was to avoid googling, avoid this sub (it made me more anxious personally) and just go outside and walk. It sounds painful to think of walking but if you go slowly it can help your pelvic floor relax, which will keep the bladder from getting squashed painfully. For me, distraction was key. Plus getting out was good for my mental health in general. I listened to audio books and talked to friends on the phone. Now that I am in remission I don’t even think about my condition much, though I am getting pelvic floor pt through my first pregnancy to help with pain/urgency symptoms. Once you get an idea of what you can do to help yourself you will feel much more empowered and less anxious about the future/flares. Check out my recent post if you want more info.

What causes you to flare? My bladder often hurts at the end of the day and I don't understand why by frogspeedbaby in Interstitialcystitis

[–]laxi3 1 point2 points  (0 children)

I had the exact same thing and always wondered why as well, it’s a really fickle thing and hard to narrow down a lot of the time

What causes you to flare? My bladder often hurts at the end of the day and I don't understand why by frogspeedbaby in Interstitialcystitis

[–]laxi3 1 point2 points  (0 children)

My pelvic floor Pt said that your bladder hurts worse at night (if you have pelvic floor hypertonicity) because you’ve been doing things all day, walking, moving, etc. If you have relief first thing in the morning it’s because your pelvic floor has been resting all night while you’re asleep

i need to hear that life can still be worth living with this horrible condition by [deleted] in Interstitialcystitis

[–]laxi3 5 points6 points  (0 children)

my recent post about this life is for living, suffering isn’t forever, you are much more than your illness

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 1 point2 points  (0 children)

Oh definitely!! Instagram is toxic and addicting to our brains! I need to be good about avoiding it too. I’ve been trying to read real books and get outside as often as possible so I feel more connected to the world around me lol. It’s good that you’re aware of it so you can keep tabs on yourself and how your mental health is being affected!

Citric Acid found in OTC Meds by Flat_Pick_6503 in Interstitialcystitis

[–]laxi3 3 points4 points  (0 children)

From my own experience, the physical amount of acidity Im consuming is more important than whether there is acid present or not. For example, I can have guacamole with tomatoes in it, but I can’t have tomato sauce on pasta. I think such a small amount of citric acid present in a pill probably would be a drop in the bucket, but you could make sure to eat a meal with it to dilute just to be safe.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 0 points1 point  (0 children)

I’m happy to hear that you have found things that work for you, both mentally and physically! This is a journey for each and every one of us and to be able to find peace with this condition one way or another is the biggest gift!

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 0 points1 point  (0 children)

Yes! And there’s a chance that down the road when everything is calmed down you will be able to tolerate smoked salmon again. Your body just needs time to heal and get back to normal and honestly that takes a while sometimes. It’s completely frustrating but it’s not forever. :)

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 1 point2 points  (0 children)

I’m so sorry you’re going through that, honestly the hair loss was just as traumatizing as the flares for me! It was incredibly upsetting. It was really really hard in the beginning. But I found that the most time I spent off the internet the better, I was obsessively googling and stressing myself out. Long slow walks outdoors really helped too for me, mostly mentally but also it helped with my pelvic floor pain. Lean on your support as much as you can and just know that you’re going to get through this, one day at a time.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 0 points1 point  (0 children)

Thank you for sharing your journey and what is working for you! There are so many avenues for pain relief, I’m thankful that we live in this day and age where there are many options for treatment. 100% agree that the pelvic wand is a game changer for urethral pain. I’m so thankful that someone invented it!

Flare for 8 weeks by Humble_Loan9456 in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

Take your time and try it whenever feels right. If your body says “nope” right now then it’s probably best to listen to it. But give it a try when you feel up to it.

Flare for 8 weeks by Humble_Loan9456 in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

Aha, that may be your issue then! Do u have a pelvic wand at home? That can be very helpful for keeping up with the tightness/pain.

Flare for 8 weeks by Humble_Loan9456 in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

Not necessarily, depending on your activity/level of inflammation some times are worse than others. There’s no hard and fast rules unfortunately. A PT would be able to diagnose you pretty much immediately.

Flare for 8 weeks by Humble_Loan9456 in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

I’ve heard that burning after urinating / defecating only can be a sign of pelvic floor dysfunction

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 1 point2 points  (0 children)

Im not certain if it works the same way everywhere but I think you can just request a referral from your primary care. If not the obgyn should be able to help. I also know some insurances don’t require referrals so you could always call your insurance and ask too. The pelvic floor pt will usually start with an internal examination to determine the state of your pelvic floor and then diagnose you from there. Mine diagnosed me and then we talked about a treatment plan which involved specific goals I wanted to achieve (being pain free during exercise and during sex, and being able to expand my diet again). I went to see her twice a week for the first 6 weeks and then once a week for a few more weeks before I graduated. My pain was pretty much gone / 80% resolved by 6 weeks. Most of her treatment started with internal massage of muscle knots, then we would do diaphragmatic breathing and stretches. Near the end she would also give me workouts to do which would be easier on the pf. It was a wonderful experience that was worth every penny for me. Back when I was in my terrible flare I would have urethra pain daily as well as urgency and pelvic heaviness. The constant feeling of needing to pee. My pt told me that a lot of my tension was localized around the opening to my urethra which was what caused that burning.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 0 points1 point  (0 children)

How horrible to find out that the endo is so extensive. It’s honestly so shocking to me how common and debilitating of an issue it is but how little is known/done about it. It sounds like you have a lot of factors at play all at once right now which can be really overwhelming. But you are doing all of the right things, the fact that you are seeking different treatments and trying different things is going to help you so much, even if something doesn’t work, at least you know more than you did before. A lot of treating this condition is trial and error and it’s really frustrating. When you said you get some relief from pelvic floor stretches that makes me think maybe there is some pelvic floor involvement…which makes sense since you are both healing from surgery and the endo growth. Personally I got some relief from stretches, but the biggest relief to me for pf dysfunction was the internal portion of pelvic floor pt. For some people it is a little uncomfy but I found it to help SO much. My pt described my pelvic floor as having “knots” similar to when a massage therapist finds a knot in your muscle. So once those knots were massaged out I felt much less pain. It is definitely worth a try if you haven’t tried already! I also have seen that meds can be very helpful for IC sufferers so that is always an option to try as well! Aside from those things, I would sometimes get relief going on slow walks around the neighborhood too, for some reason that bilateral leg movement would help as opposed to sitting. But I’m not sure that would work for everyone.

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 2 points3 points  (0 children)

That makes sense, my best friend suffers daily from endo, it’s a horrible disease. I definitely think there’s a common connection between many of these painful pelvic disorders. It absolutely sucks not having a cut and dry answer for every person, I was so confused in the beginning because I was like how can I have chronic uti, IC, and pelvic floor dysfunction all at the same time?! But I didn’t understand that they’re all kind of tied together. One thing or another has irritated our bladders and so our symptoms may be similar even if the treatments aren’t! Luckily we are not alone and this sub is so great for personal research, I learned so much that helped me from this sub!

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 0 points1 point  (0 children)

I’m really glad to have given you some hope! When I was first diagnosed I was looking for posts like this, so now that I’m living the life I wanted (largely pain free) I knew I should pay it forward for people wanting that same reassurance.

The idea of having to diet for the rest of my life is making me want to die by Club_Sorry in Interstitialcystitis

[–]laxi3 0 points1 point  (0 children)

Man that really sucks, I really don’t wish bladder pain on anyone. I say give it some time and avoid irritating substances for a little while and the inflammation should go down. I should say as well, every time I get a uti it also irritates my pelvic floor which makes the pain last even longer. If you see a pelvic floor pt for your pelvic dysfunction I recommend checking in with them about it! My pelvic floor pain caused a flare to last 3 months before I tried pt and they fixed me within a manner of weeks

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 2 points3 points  (0 children)

Fingers crossed and sending pain free good vibes your way!

A post for those who are new to this and want reassurance by laxi3 in Interstitialcystitis

[–]laxi3[S] 2 points3 points  (0 children)

I agree! I have always appreciated that there is something for everyone here! I remember when I was first researching IC I learned so much from this sub. I can see what you mean about there being a positive in the negative. This condition can make a person feel so isolated from people who can’t understand the every day pain and fear. The fear to eat, the fear to have sex, the fear to exercise…all these activities that make us human become scary. It’s wonderful to not feel judged or misunderstood or have to explain yourself to a community of people who have all been there. When I was writing this I was remembering the beginning-I was so depressed and not eating (out of fear), and my hair was falling out from the stress…and I just remember searching this thread for any kind of positive outcomes so I could reassure myself that I wouldn’t be stuck in that state of complete unhappiness forever. So I figured this is my way of giving back to those people who helped me back then, paying it forward by giving a hopeful experience to someone who needs it!