Anyone out there suffering with intersiastal cystitis?

[Jcwy]

Hi , I'm Jessie, I'm about to turn 34(😓) I have endometriosis (have had it seems forever) and I was recently diagnosed with intersiastal cystitis. It seems no one understands endometriosis and absolutely no one understands intersiastal cystitis . Anyone out there suffering with this ? I'm having my 2nd surgery this Monday,for endo and for i.c .

[Starry]

I started my endo journey with this. It was fairly mild though. I got it under control with antihistamines, SLES and paraben free toiletries, organic lady towels, manuka honey, avoiding coffee , reducing alcohol, drinking lots of water and loose clothes.There was some plaques of Endo on the outside of my bladder and my bowel was squishing my bladder so that was part of the problem.

[Jcwy in reply to Starry]

Thank you so much for replying! I have absolutely No one who knows how much I suffer in pain! My husband is my biggest support and my rock but still he doesn't understand the pain (he tries though) my Dr had told me about i.c before I had my first surgery. But I didn't think that is what it was. He found stage 3 after the first surgery . I changed my diet, I don't drink alcohol to begin,only drink water. I can only wear summer dresses or "yoga" pants. I can't have anything tight against me. Did you have any relief after the surgery?

[Starry in reply to Jcwy]

The hot pain and irritation went with the things above and I reduced frequency a little. It took the surgery to improve my frequency issue significantly though. I am probably only up twice in the night for bladder rather than 4 or ,5. I'm not sleeping well though due to post op pain as it's only been 3.5 weeks since the op.

[Jcwy in reply to Starry]

It is so cruel this "disease" . I as well have to get up , up to 6xs at night. If you don't mind me asking where are you from? I joined this group because I have no support groups and no one that can understand what I go through . I live in America.

[Starry in reply to Jcwy]

Hey x like you I have no support group so visit here a lot as there is only so much I can burden my lovely hubby with. I live very rurally in Norfolk UK.

I feel for you. Bladder pain and frequency was one of THE worst symptoms for me and the one that drove me absolutely insane and triggered me to get to the GP to get diagnosed finally.

At its worst I was going 18 times a day. Yes there is next to nothing out there on IC. These were the two sites I used. I was lucky the antihistamines worked.

ichelp.org/about-ic/what-is...

ichelp.org/about-ic/associa...

mayoclinic.org/diseases-con...

[Jcwy in reply to Starry]

I should keep count of the amount I go. I'm so scared ,anxious and nervous for tomorrow. Thank you for the links!

[texasbamagirl]

I have found the staying away from gluten helps me. When my spasms get bad, I rub cypress and clary sage essential oils over my pelvis. It seems to help.

[Jcwy in reply to texasbamagirl]

That is a big thing with me, I need to remember to look at labels. There is so much crap in everything. I will try anything!

[Summer143]

Is your IC only being controlled by diet? I have IC and alongside the diet I am on daily meds and monthly bladder instills. I too had both but had radical excision of the endo. Has your IC been accurately diagnosed his cystoscooy?

[Jcwy in reply to Summer143]

Hi, tomorrow I'm having cystospy done! Along with lap for endo, d&c and ablation . This will be my 2nd surgery for endo. I had a test done in Dr office where he inserted a catheter into my bladder and I can only say the pain from that was worse than labor! I was in absolute agony!! As I stood up to procede with the testing after about 30 seconds i felt as I was going to fall to the floor. He told me to sit on the comode. I got this indescribable intense nasusness, dizziness like I've never felt in my life. He had to stop the test and from what he gathered from everything he said he is 95% sure I have i.c. I was drenched in sweat from head to toe . I never want to feel like that again! Tomorrow will be diagnoses.

[Heloo85]

Im sure i have this .. although not 100% and had no formal diagnosis. Ive always had a weak bladder to point i have to starve myself of fluids if im going out. That went on for years! Plenty of Drs visits for it! Had investigations, kidneys stented, not much said other than signs of kidney disease. Fast foward 6 years and had excision surgery for Deep endo, fallopians, ovaries, bladder, sigmoid colon, womb. Anyway, now im 1000% worse. Some days urinating upto 50 xs a day. Awoken 3+ times at night. I mentioned it to my gynae who said "its not endo related" then looked at my notes and realised i had bladder endo! So god knows but i feel your pain! My endo is back and is definitely effecting my bowel having had severe constipation/impactions starting a month post op, i am not sure what my bladder problem is.

Could yours not be endo related again. I have Drs try fob me off with IBS and such, but in reality all these seperate diagnosis is ridiculous. I know its Endo!

[Starry]

Good luck for tomorrow. Fingers crossed that the Surgery will help. Let us know how it goes, we will be thinking of you. Xxx

[Jcwy in reply to Starry]

I read all the links you sent me! Yes the evil twin is a perfect name for endo and i.c!! Before I had the surgery 2 years ago he told me about i.c and endo correlate with eachother should have listened then!

[Jcwy]

I just realized I didn't respond to my own post. I was diagnosed with I.C . The pain and all the agony that goes with it took awhile to get better. I feel like I may need to go back soon .