Is endo causing my cystitis?

Hi. I was diagnosed 2 years ago with endo at age 26 and had major op last year to remove a 4cm lump from sticking my bowels to my cervix and nodules growing in to my upper vagina. Despite my consultant being hopeful it wouldn't grow back, after stopping zoladex injections pains started to get bad again and I had another lap 3 months ago which confirmed endo back and need more surgery at some point.

My main question is: I seem to have. 7/8 week cycles at the moment. (I have PCOS too). Last month I ended up at my docs as I was peeing frequently and felt burning and twitchy 'down there.' I was put on antibiotics. Made no difference pains got worse and into back and kidney and groin area so another doc switched antibiotics. Considering I pay for prescriptions it's annoying! Made no difference so another doc took me off them then tarted me for thrush because of the antibiotics so more money! She mentioned the possibility of interstitial cystitis to me caused by my endo. Anyway I felt worse so another doc decided to send me for a scan as thought I had a kidney stone as my urine samples were inconclusive for bacteria but showed blood. I remember having lots of pain one weekend and even at night when I peed but my period started so put it down to this. Things seemed to settle after period.

I am now 3 weeks back into my cycle and yesterday I work up with the burning sensation down below again and today my bladder feels all jumpy and hurts when I pee. I can't face doctors dismissing me again and trying to shove more antibiotics in to me. Could the one GP be right? Can endo cause interstitial cystitis and can it by cyclic?

Thanks.

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  • I Have cystitis like always although my gyni say it actually that as if it was it could be treated with medication. They say I get them cystitis like symptoms because I have endo on my bladder. I just jump In baths all day long to ease the sting and grab a hot water bottle. I hope this helps sorry I'm not more informative. Hope it gets better for you xx

  • Yes endo inside the bladder is cyclical-just as it is elsewhere, and the bleeding when it gets going can irritate what ever it lands on.

    Very important that when it is active to keep drinking water to flush it out asap, but better still is to stop your period bleeds. If you can stop the endo from shedding its menstrual lining and bleeding then you should be able to prevent this happening each month to a greater extent. In that sense it is more controlable than for someone with unexplaind IC.

    The Depo-Provera injections are every 3 months and should stop your periods within a few months, and stay that way while you are having the injections.

    For quicker fix Norethisterone tablets you take 3 each day with no more than 12 hours between any two of them and that should stop your next period till you either want to have one or accidentally miss tablet or two, which will trigger the period to begin a couple of days later. it is very heavily dependent on you religiously taking the tablets, but in the immediate time frame can help stop the next period so long as you start taking them at least 5 days before you are due on, but better started closer to ovulation if you can.

    Certainly worth trying that and if that doesn't resolve the problem or delay the cystitis kicking off then it's less likely to be endo and more likely to be bacterial in which case staying on antibiotics or trying one after another after another is the only way to hopefully eventually find the one that your bugs are not resistant too.

    Having pee checked for infections after course or courses of antibiotics is unlikely to give a conclusive result on the bacterial infection possibilities. Use the searchbox on the green bar and look for 'biofilm' as a key word and you'll find previous discussions on how ecoli bacteria especially, just loves to live with endo in the bladder and how it can be a devil to kill off.

    There are also a number of excellent videos on you tube about IC interstitial cystitis and how to self treat and alter your diet to try and reduce the pains of it.

    Don't give up pestering your GP for anti-biotics or for period stopping drugs, I know the antibiotics cost a fortune and when you need to keep taking new batch every week or so it soon mounts up in cost.

    I spent May and June battling to find an antibiotic to rid me of a UTI. Gone now thank goodness.

    The NHS does have a prepayment prescription program £29.10 covers 3 months and all the prescriptions you would need in that time. Saving a fortune if you are on repeat antibiotics.

    The yearly version works out at £2 week. Even better value if you need long term prescriptions.

    Hope you can find some way to ease the bladder problems. From my own experience they are more painful than endo pains are and there's no escape as you have to pee so often every day. Very best of luck.

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