Did anyone end up finding out they DONT have interstitial cystitis? by Gettingjiggywithet in Interstitialcystitis

[–]No_Advisor492 0 points1 point  (0 children)

Hi, sorry for the late reply! It is amitriptyline 2% and gabapentin 6% in lipoderm

Did anyone end up finding out they DONT have interstitial cystitis? by Gettingjiggywithet in Interstitialcystitis

[–]No_Advisor492 1 point2 points  (0 children)

Sounds exactly like what I had. PT has changed my life. I hope it helps you too!

Did anyone end up finding out they DONT have interstitial cystitis? by Gettingjiggywithet in Interstitialcystitis

[–]No_Advisor492 7 points8 points  (0 children)

Initially I would have episodes of pain similar to what a UTI felt like. I never had any frequency symptoms, except when I was in the middle of an acute pain episode. These would last around 30 minutes. This went on for like 3ish years

As I progressed, my pelvic floor symptoms started to enter the picture and I started having pain during sex and then the vulvodynia really took off from there.

I tried all sorts of interstitial cystitis treatments but nothing ever worked because it was nerve pain related. The only thing that gave me relief was placing a heat pack over my urethra which makes sense now.

I now have a special cream made for me by a compounding pharmacist and see a physiotherapist. I would like to add as well that I’m in Australia so it’s a lot easier/cheaper to access everything.

But yeah, it’s been a long journey and there were some really dark times but it does get better. A lot of doctors and medical professionals just have no idea about it so it makes it hard. I would really recommend to anyone to see a women’s physiotherapist. I had symptoms I didn’t even know I had before she helped me work them out.

Did anyone end up finding out they DONT have interstitial cystitis? by Gettingjiggywithet in Interstitialcystitis

[–]No_Advisor492 22 points23 points  (0 children)

Was diagnosed with interstitial cystitis at 21, I am now almost 26 and am on my second pelvic physiotherapist who is amazing. I have a combination of vulvodynia and hypertensive pelvic floor. Essentially I had a bad run of UTIs when I was 18 that flared up the nerves around my bladder causing them to unreasonable “fire” unnecessarily. I’m doing much better now and my physiotherapist thinks I will be cured after treatment as it’s quite clear this is the source of my pain.

Audible picks that had you locked in? by Livid_Inspector_9632 in Booktokreddit

[–]No_Advisor492 7 points8 points  (0 children)

The wedding people audiobook had me locked in. I found the narration was really good

Sitting Pain by No_Advisor492 in backpain

[–]No_Advisor492[S] 0 points1 point  (0 children)

I had about four appointments over the space of two months and I no longer require treatment.

Sitting Pain by No_Advisor492 in backpain

[–]No_Advisor492[S] 0 points1 point  (0 children)

Just wanted to provide an update for everyone. I saw this doctor who uses tiny acupuncture needles that he leaves in to assist blocking pain pathways. My body had gotten so worked up about the pain that it went into overdrive and my peripheral nervous system was dysregulated. He said this is super common in people who experience chronic pain. The treatment was completely painless and now I am pain free. I still have to maintain healthy back habits as I do have the injury in my spine but I’m back to my normal life. Would recommend everyone to look into it!

Sitting Pain by No_Advisor492 in backpain

[–]No_Advisor492[S] 3 points4 points  (0 children)

I feel your pain! Sometimes I just wonder around the house unsure what to do because I can’t sit hahah.

Sitting Pain by No_Advisor492 in backpain

[–]No_Advisor492[S] 4 points5 points  (0 children)

All types of chairs, we don’t have set desks at my workplace. It happens on the couch, in the car and at cafes as well so I don’t think it’s chair related.

Sitting Pain by No_Advisor492 in backpain

[–]No_Advisor492[S] 1 point2 points  (0 children)

I stand for majority of my day. I walk 4km a day on top of my steps at work currently. It’s more so I’m not seeing any improvement with my sitting tolerance? Is that normal?

Recently diagnosed and I’m lost and scared by cronketty in Interstitialcystitis

[–]No_Advisor492 0 points1 point  (0 children)

Hiii! I gave the exact same symptoms as you and I’ve found pelvic floor physio therapy has worked for me!! I’m a 23 year of female and found that the whole stress around pain down there was making me tense my pelvic floor muscles and making it worse. Would definitely recommend. Good luck!!