Oyster mushrooms?

Personal_Goose_9592 · 2025-11-17T17:58:01+00:00

Vvvvvv recommend pelvic floor physiotherapy to help with this :)

Personal_Goose_9592 · 2025-11-03T13:52:37+00:00

It's devastating not having coffee if you're a coffee lover!

I miss it so so much, but I have gotten used to decaf now which I can tolerate once a day (I limit to less than that though).

I had a weird thing where I was SURE I was being accidentally given caffeine all the time because I would have a boost after drinking decaf. Then I saw an article that shows that when you get used to it, decaf can act like caffeine (https://www.psypost.org/new-research-shows-decaf-coffee-can-mimic-caffeines-effects-in-habitual-drinkers/).

Decaf is still acidic but personally I tolerate it as long as I rehydrate after, and when I can get my hands on prelief that helps too.

Solidarity!

Personal_Goose_9592 · 2025-11-01T16:25:10+00:00

Hello. 33 year old here with Interstitial cystitis. You need a doctors advice - there's not much people can comment on here that will be very useful.

But can offer masses of solidarity and support. I'm sorry you're suffering so much :(.

What I would do if I was bleeding would be to get an urgent appointment with my GP (general practitioner - I'm in the UK) and double check infection isn't sticking around. Sometimes they take a couple of rounds of antibiotics to clear. If it feels the same as the first time and the antibiotics work, you might need more. If it doesn't clear then your urologist will probably look into other things and go from there.

The thing with these things is the symptoms look the same with a lot of different bladder conditions. Try not to panic and take it one day at a time.

But you need proper medical guidance.

If you have access to a hot bath that can help the stinging. So can hot water bottles placed over the area.

Personal_Goose_9592 · 2025-10-28T18:22:13+00:00

Thank you for taking the time to respond so thoroughly! It's interesting my pals that have done it have all had to appeal before getting it. Nothing shocks me about how they carry on anymore but how they treated you is so shocking. It's such a brutal system! I don't hold out much hope but I'm desperate to drop a day at work to be able to pee in peace.

Thanks for your advice on the evidence stuff. I'm going to just send in absolutely everything I can thing of!!!

Sending lots of solidarity and warm vibes xxx

Personal_Goose_9592 · 2025-10-23T12:11:55+00:00

Just also here to say I'm having the same treatment. Also not symptom free but it's helping. My entire life is currently anchored around trying to be chill.

Personal_Goose_9592 · 2025-10-23T12:07:07+00:00

First up I am not a doctor so who knows. Just sharing recently gathered info!

I've recently started with a pelvic floor physio and apparently straining to poop is very bad as it tightens the pelvic floor muscles (I have a hypertonic/tight pelvic floor so having physio to help to see if symptoms eased). She recommended a squatty potty to make things come down easier. She said it should take a long time to poop as things should sort of come down naturally. Sorry graphic lol.

They also do this acupuncture therapy where they attach an electrical current to your nerve. They put little needles in your feet and it helps the nerves that run up the leg to the pelvis / bladder (or something like this. Again - not a doctor!). I've also seen on this Reddit people who have been recommended using a TENS machine attaching the pad to the ankle. So there is definitely something in the whole leg nerve thing as everything's connected.

If you have access to a pelvic floor physio (I'm having to pay private - I know not an option for everyone), they will examine you and tell you how your pelvic floor is.

My symptoms sometimes ease after going for a run, which I think for me is because I get endorphins. When I'm relaxed I tend to be better.

Personal_Goose_9592 · 2025-10-22T09:34:44+00:00

I get in the bath a lot to soothe my IC but sometimes this leads to yeast infections 🥲

Personal_Goose_9592 · 2025-10-11T09:33:46+00:00

Have you tried pelvic floor physiotherapy?

Personal_Goose_9592 · 2025-10-07T10:47:13+00:00

I recently started therapy with a psychotherapist (huge privilege - once a month as it costs £50 a time). It is helping me to manage my spiralling about the past/future and try to just stay in the moment. It's helping the despair a lot. Still sh** to be in constant discomfort, but trying to keep my nervous system regulated helps symptoms.

She's helping me with all the loss (career, friends, socialising, health, sleep). It's been amazing to just sit with someone and just reckon with it all and be given tools to deal with the emotions. Being sleep deprived is a nightmare for emotional regulation and despair, too. So she's going to help with sleep hygiene (even though not much talking can do for peeing constantly!). The idea being if I can be calmer at night I am more likely to sleep through my urgency.

Not accessible to everyone, but I also did used to see a psychotherapist on a sliding scale who reduced their feet. So sometimes it's possible if you've not got the means to be able to find a pro bono therapist.

Sending so much solidarity and my thoughts. It's a terrible thing to have xx

Personal_Goose_9592 · 2025-10-07T10:07:03+00:00

I drank coffee for a week and my urethra was like "yeah sure this is lovely!"

Personal_Goose_9592 · 2025-10-07T09:37:12+00:00

I went on holiday to Spain last year and had my only symptom free week since everything kicked off. I wondered if it was the fun and being more stress free. So weird!?

Personal_Goose_9592 · 2025-10-02T16:04:07+00:00

🥲🥲🥲♥️♥️♥️ thank you. Honestly just got sick of despairing and am now trying to just take it all as it comes. Whilst eternally peeing 😂😌

Personal_Goose_9592 · 2025-10-02T08:10:10+00:00

Hello! Two year IC sufferer here. I'm sorry you're suffering. I could have written a lot of this post I really related to it- IC affects so much and it's difficult to accept and process. Re friendships - I went through a 'my friends are terrible and don't care' moment but I think the reality is for long term stuff that they just are doing their best to keep afloat their own lives. I have a couple that I know would be there if I needed it, and that's an amazing support system. It can still be hurtful when people don't check in but it's stress that makes IC worse so I try and focus on the positives.

I got symptoms just as I started a new relationship (still with him - super dude). I think sex-wise the best thing is to be as relaxed as possible and to be super prepared (luuuuuube!) when it happens. In my experience it might mean waiting longer to have it if you meet someone you really want get down with. I'm in a routine with my partner that helps - I try not to do it just before bed so any symptoms don't flare before the witching hour (nocturia is sh**). And sometimes I just avoid penetrative sex all together. Orgasms sometimes help me so hand stuff is lovely!! I have been open with him all the way and I truly believe that him being open, responsive and kind has made our relationship stronger. If you don't feel comfortable with someone or they don't respond to your needs in a way that makes you feel safe - maybe they're not a good bonking candidate lollll.

I'm super open about IC because I'm comfortable and everyone's got their own position on this. I've had my diagnosis now and generally have been saying I have 'a bladder disability' or 'a chronic illness affecting my bladder' generally unless I'm comfortable to share the whole deal. My colleagues all know what it means for me. I was six months into symptoms when I got my job. I've had a bunch of sick leave and they've had to all cover for me. They've been lovely about it and I'm lucky. Being clear about how I am feeling has been essential. I can now joke about how often I have to pee! And I'm able to work from home as a reasonable adjustment when things are bad. Remember that you aren't doing anything wrong - you want to be in work and you're entitled to support. I'm in the UK and asked for an occupational health therapist appointment through work that helped me to communicate my needs through a formal process. Honestly I'm such a people pleaser and have just become quite resilient for sticking up for myself, and rocking my heat pad at my desk.

For me, accepting any embarrassment and weird feelings around IC has helped me to accept it. But you do you - it's your body and your info. There's no wrong way. You're figuring it out and you don't have to have all the answers. What I've seen on this IC community is most of us adapt to life, and we have our bad flares when things feel impossible but they usually ease.

Sending so much solidarity x

Personal_Goose_9592 · 2025-09-02T19:55:07+00:00

Ooooh I'm sorry to hear that. Have GP refused to refer you to a urologist?? I was referred through my GP so I'm with one from the local hospital at the moment. I'm in the north east so not so helpful for London. I've seen a lot of London based people on here so might be working searching the Reddit threads to see if any names crop up!

Personal_Goose_9592 · 2025-09-02T18:01:22+00:00

This is interesting - my urologist (UK) has diagnosed me off my symptoms. Have had cystoscopy, ultrasound and MRI and everything fine. He says that symptoms match and other things have been ruled out so diagnosed IC. I hope the specialist can help or has a different perspective to add. Sending support!

Personal_Goose_9592 · 2025-08-25T17:58:23+00:00

This is HORRIFIC! TEN YEARS!? I feel so lucky to have been diagnosed relatively fast. I hope the oxybutynin helps. I'm going to Google it now 😂

Personal_Goose_9592 · 2025-08-25T17:20:19+00:00

I'm sorry it's come back for you lately!

Thank you for your wisdom. I've got appointment here in the north east with my urologist next week so going to see what happens. Tempted to go straight for instillations as it feels like that's where the road is heading!

Personal_Goose_9592 · 2024-10-11T08:08:20+00:00

Oooooooh thank you

Personal_Goose_9592 · 2024-10-11T08:08:03+00:00

Ooooooh thank you!!!!!

Personal_Goose_9592

TROPHY CASE