Endometriosis and Interstitial Cystitis warriors out there?

[Catness]

Hi everyone,

I hope you're having as comfortable a day as possible.

So I was diagnosed with IC years ago and it went in remission of its own accord (no idea how!). Anyway 5 weeks ago I had a major lap to remove stage 4 endo and I believe the surgeon was quite aggressive in his approach. A week into recovery I got a UTI and this has flared my IC off like never before. I'm trying to stay calm as I know stress and anxiety play a massive part in dealing with this disease but was just wondering if anyone had any tips for when they're in flare? Weirdly antibiotics do seem to be helping for a couple of days and then the IC takes over.. I'm very sleep deprived and confused about the whole thing.

I am finding I can hardly eat anything at the moment so I'm following the endo diet PLUS the IC diet plus a bit of the candida diet as I seem to have a bit of thrush. I've lost a stone in weight since my op.

I'm also in the position where I have been able to book an appointment with Professor Malone-Lee in Harley Street for a couple of weeks time as he is an IC specialist so I am hoping he will have more news. But would be so grateful to hear from anyone who has anything remotely constructive to tell me as I am desperate!

Thanks so much,

Kitty

[123happym]

Hi so sorry to hear you are dealing with this on top of your op. I'm not sure I can offer much advice as only recently diagnosed with IC in Feb following some bladder trauma post hysterectomy last year.

I am starting Cystitat treatment tomorrow, had antibiotics in Feb which helped for a short while. Quickly came back though and getting progressively worse. I think my histamine levels are v high as have started getting severe urticaria linked to newly developed food allergies. Been prescribed steroids and strong antihistamine. Had a good day today, bland diet - hard to want to eat if not sure of the consequences.

Please let me know how your consultant appointment goes. Take care Mx