interstitial cystitis

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I'm so sorry you're suffering with this, I've had very similar symptoms for years but finally getting a bit better. Have you tried D-Mannose? You can get it online or in Holland and Barratt, that seems to have helped me a lot. Also my consultant put me on long term low dose antibiotics for a while but I'm off them at the moment as he wanted me to have a break. I have also tried the oestrogen cream that you mention but that made things worse so I came off that. So all I am using now is the D-Mannose and no caffeine at all, low acid foods and I take Prelief tablets if I do want to have anything I shouldn't! Hope some of that may help you.

IC is not a diagnosis...its a symptom you may may a CUTI ( embedded uti which doesn't show on nhs tests....looks at chronic uti facebook pages ....I now take a daily hiprex ( antiseptic) and been symptom free for 15 months....I also take vaginal estrogen gel

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Hi labazs
I'm so sorry, I remember the pain only too well. I took had a cystoscopy and my diagnosis was IC.
Many urologists said it was a useless diagnosis because it was a poorly understood condition.

Hiprex didn't help me neither did long term antibiotics. I know they've helped others but both made me worse. Interestingly like you I flared badly with estrogen - high dose. I had an estring and the pain was through the roof. I now only use blissel vaginal estrogen which is a gel and the lowest dose of vaginal hrt. I've come off all other hrt, was on systemic bioidentical.

Ic can be linked to autoimmune problems and mast cell activation - a sort of histamine reaction. I found that a specific antihistamine called Hydroxzine really helped along with the blissel (a tiny dot applied twice a week - use more and I flare up).

I changed my diet and included more foods to repair my microbiome damaged by years of antibiotics.
Deep breathing, humming and pelvic hip opening stretches all helped as did counselling. The nervous system being on high alert really worsens the pain.

Sending a hug.

Oh and my urogynaecolist at UCL hospital recommended daily use of a specific oil called Victory oil. It's better than YES OB, and after a few months of using it I find my pain has settled along with other things mentioned.
Sorry to say this and I realise some would object but abstaining from intimacy until the pain settles is advisable.