Endometriosis and Interstitial cystitis

Does any one suffer with both endo and Interstitial cystitis. After my long journey with endo I've recently found out I also have interstitial cystitis. I'm only 23 newly married but really finding things tough at the moment. I feel extremely run down and spending more and more time in bed. Has anyone got any advice or ways to managing it? Any help would be appreciated, thank you xx

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  • I say it's like having to do a.wee through a straw I know that feeling very well.i also.suffer with my bowls

  • Hello :) I'm also 23 and in July last yeAr I with diagnosed with stage 3/4 extensive endometriosis and interstitial cystitis (as well as a couple of other things). I have found getting my head round the two diagnosis really tough as you will know they are both incurable. During my lap my consultant surgeon also did a bladder distension (one of the ways to diagnose IS) and this actually has provided some relief since. She also wants me to take low dose anti depression tablets which would act as nerve blockers however, this has made me quite uncomfortable as I think that taking them can be like opening a can of worms so have refused that method of treatment. I follow the endo diet (if you aren't sure what that is google endo-resolved) and I have found that this has also given me relief for my bladder symptoms. Cutting out a lot of sugar, caffeine, anything too acidic such as fruit juice from a carton has helped. I also think that cranberry juice from a carton is a bit of a myth for us IS sufferers as it has additives and sugar added to if that do more harm than good, freshly home squeezed is ok. I have a juicer and have a fresh vegatable juice every day and since I started doing this I feel a lot better overall. I have a really good diet (usually although I have the odd chocolate pudding!) which has helped with the endo pain. I tend to find that if one flares up, the other one does too so I'm obsessively mindful of what I'm doing to my body.

    Condoms, strong perfumed shower gel, non-breathable tights/ underwear can also flare up my IS so I have begrudgingly had to have a full life overhall!

    I think the worse thing for me is that I can't go anywhere or do anything without planning for either my endo or IS to flare up so I feel like I have to take a hot water bottle and pharmacy with me everywhere I go!

    What do you do to help ease your symptoms? Xx

  • Hi. My GP thinks I have IC too now. Big flare up last October which seemed to take forever to calm down but also linked to endo flare up too. I can echo the above post- avoid caffeine/alcohol/orange juice and anything spicy. Endo diet helps too. I think it's all about putting quality into our bodies not junk. White choc is better than others as no caffeine in apparently. So I have developed a love of milky bars! My brother asked if the diet came with a noose as it's so restrictive to begin with. However as you get used to eating differently and feeling better for it the diet just seems to make sense. Why put something in that is going to hurt. I haven't had an IC flare up since cutting out the above. Hope that helps. Take care.

  • Hi, sorry to hear you are suffering. I have endo, and like you, have only recently been diagnosed with interstitial cystitis. I am 25, and finding every day a constant struggle. Do you take pain relief regularly? I only used to take pain relief when I was having a flare up, but have recently been taking it regularly and not missing doses and this has helped a little. Are your gynaes going to suggest any treatment? I am waiting on my gynaes suggestions. Sorry this isn't much help, just wanted you to know you aren't alone :-) x

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