Interstitial Cystitis


Last I was on here was complaining about having Hives,. They did eventually clear up with short course of prednisone. I have since seen dermatologist for a get to know meeting. She said that she was familiar with hives affecting Lupus patients in a more aggressive manner than the norm, after all it is all histamines. I was fine from that point last year up to August when I had another flare up of face and muscles while on holiday with family. Poor kids, they are starting to blame themselves for not being more careful with me on holidays.

Today I am looking for information or experiences of Intersitial Cystitis. I use to get attacks quite regularly before my lupus diagnosis, but after starting treatment it has not been a problem for 6 years. For the last three days I have been suffering a lot, was so unexpected and disappointing after going so long without. I have found "Lupus Interstitial Cystitus" on-line but not a lot of help. Has anyone else had this kind of flare?

Thank you for any input.


20 Replies

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  • Are you sure this is interstitial cystitis? I suffer it occasionally - but just once in a while it is an infection. I don't have lupus but another autoimmune disorder where it isn't uncommon.

  • Thank you PMRpro for your contribution. In the past I was treated for bladder infections that most of the time showed no infection, but because I have chronic micro hemaurtia doctors assumed I must be getting infection so treat anyway. Am I 100% sure it is not infection, no but my urine looks great with no bad odour, no burning and no fever. The pain I am having is spasmodic while laying still but difficult to walk without pain, and bowel movements are painful. I will try and get dipsticks from pharmacy today to make sure no infection. Pain is in pelvic area, hips and lower back.

    Thank you again, and if you have any suggestions please let me know.


  • Sounds good - but sorry, I have also never really found a good way of dealing with it either! Luckily mine never lasts long.

    I'm assuming other causes of pelvic pain have been ruled out?

  • Dear... everytime I read about microhematuria with lupus I say the same: please go see a nephrologist, this could be kidney inflammation due to lupus.

    It is commonly confused with infections, 10 Drs even specialists made that mistake with me and only 1 rheumatologist sent me to do more tests. (They see the urine with a microscope and if the red/blood cells are spiked or acanthocyte is because of a kidney problem). When I finnally went to a nephro he said I was poorly treated during 12 years :/ please consider this and talk to your rheumy or GP to run this kind of test.

    If you read about "lupus nephritis symptoms" you can find there are similar to cystitis. Even if it means a possible organ involvement you deserve a better treatment and be pain-free. Stay strong! Hugs


  • Thank you, 1sam

    Apparently my hemaurtia is not the right kind, they say it just happens to some people and not to be concerned about it.

    I know what you are saying,

  • What would you suggest, I am my doctor for the weekend.

  • Is there any chance this is a flare of sacral synovitis with pelvic girdle pain +'the urological etc elements you've mentioned?

    I ask because my lupus is infant onset, and I have been managing a complex mix of overlapping Pelvic/abdomen issues for decades which gives me signs & symptoms very like those you're describing

    Over the past 6 years a NHS Pelvic Multidiscipline approach to understanding this mix (involving rheumatology, immunology, urology, gynaecology, gyn onc, Women's Health Services Physio and now gastroenterology) has more or less figured out this combination of underlying predispositions causing my version of this:

    - Sacral synovitis & pelvic girdle pain (relieved by daily low dose pred + moderate dose myco)

    - Interstitial cystitis/urethral syndrome related to SLE + Sjogrens combined with chronic pockets of bacteria driven sepsis due to primary Immunodeficiency preceding immunosuppression causing complex persistence pattern urinary tract infections with pyelonephritis (relieved by low dose daily prednisolone + daily coamoxiclav antibiotics ongoing)

    - Endometriosis (this element seemed to reduce its effects with menopause, but even so flares continue to damp down somewhat on mefenamic acid 500mg)

    - Vascular Ehlers Danlos laxity giving rise to rectocele & cystocele (managed via WHS Physio rehab etc)

    All pretty much par for the course in a 63 year old with my version of early onset immune dysfunction + connective tissue disorder, apparently

    I too am a highly reactive patient prone to hives, urticaria etc etc

    You're a very experienced patient, but maybe something in there can be useful

    πŸ€πŸ€πŸ€πŸ€ coco

  • If not IC then I would consider your first option of Sacral Synovitis, I had bursitis in my hips in 2015 which is synovitis inflamation, right? What I am experiencing now, although is bad girdle pain, is not as bad as the bursitis was. I have just had my 63rd birthday and it is hard to know sometimes what is old age pain sneaking up and what is lupus, but some pain you just know is not normal.You are an encyclopedia of knowledge Barnclown. Have you read or seen (videos) of the work of Dr Donald Thomas, he is very easy to follow and makes our issues easier to understand.


  • πŸ‘πŸ‘πŸ‘πŸ‘ my tendency would be to stick with the possible interstitial cystitis while checking whether your pelvic girdle is playing up alongside any bursitis flare. I do recall your checking that's a sensible beginning.

    And oh boy do I ever agree: the effects of aging overlap with all our lupus & co-related issues πŸ˜‰ BUT we must resist medics' tendency to fob us off with "that's down to your age"! E.g. If I'd given in to that theory, I wouldn't be getting my current lower GI investigations from gastroenterology...

    In lupus, experts say, only synovial joints are affected...the synovial spinal joints are at the top of the spine adjoining the skull & in the sacrum. my forefeet bursitis diagnosis was confirmed by MRI. I often ask my consultants: how do you know my bursitis isn't also synovitis & even capsulitis...after all, inflammation in synovial joints can affect all these parts of the joint (they all work alongside one another)? but I never get a straight answer. I bet our πŸ¦‰πŸ‘©πŸΌβ€πŸŽ“πŸŒŸ PMRpro could explain this! Hope she is continuing to follow your thread. also, i hope bursitis-experienced forum friends reply to your question: am sure their comments will be vvv helpful

    I'll just add that the experts at my lupus & vasculitis clinic tell me lupus inflammation is attracted to any site of inflammatory activity in the body: lupus can't resist joining in. So, one way or another, lupus can be involved in nonsynovial joint-related issues

    Am going to check out dr Thomas today, many thanks!

    Please let us know how you get on


  • Hi Coco, I'm so glad you mentioned sacral synovitis, I had not heard of this and have just read about it and now I'm wondering if this is my problem, I've had many of the symptoms for years , sciatica since I was a teenager and awful hip pain for the last 7years, I was told I had Fibro but of course now I have finally got my diagnosis of SLE (maybe there is an element of fibro but I've never felt that I quite fitted into the Fibro category) I am piecing so much of my past history together much of which has been ignored or dismissed as Fibromyalgia! . The hip pain was the first symptom back then and I was put on arcoxia which helped but more recently had to stop because of my kidneys. I have awful lower back pain too which with my hips becomes unbearable the further I walk, I fractured my sacrum in a fall years ago too which healed well, I've recently been getting knee pain, I have lots of thigh pain too. When I rest everything eases although I can't stay in one position for long whether sitting or lying down, pottering around the house is ok but walking out is when it all gets much worse. I was told it was probably bursitis back in 2009 and had my hips injected which helped and I'm now waiting to have them both done again, but reading this I'm now wondering if the pain is coming from my SI joints, they appeared normal on plain X-ray but I've read that it doesn't show up on plain X-ray. I had physio for my hips in the summer and some of the exercises make it so much worse to a point where I can hardly walk or sleep but the physio said it's ok just keep doing them and to push through the pain and that exercise is all I need! this was before the confirmation of SLE in December! I've since seen a pain consultant who is very happy to inject my hips so perhaps when I go I should mention my SI's strange because the other day I pointed out to my husband this thick pad at the base of my spine that feels weirdly swollen!

    Sorry this is long and off bladder topic but just had to reply.


  • I like the way you're thinking diane! πŸ‘πŸ‘πŸ‘πŸ‘ The signs & symptoms you're trying to figure out could well be due to overlapping underlying causes, like mine, including sacrum joint inflammation. I read a paper last week on how many cases of synovitis go unrecognised because imaging techniques aren't as good as they might is a link

    Please keep us posted while you look into this


  • This is interesting thank you CocoπŸ‘πŸΌ, gosh it's been a battle getting as far as I've got and yet I feel like it's only just beginning 😩, I'll definitely bring this up with the pain consultant.

    Many many thanks and happy Sunday❀xXx

  • Hi chapter

    Lovely seeing you back on forum but sorry you are suffering a lot suddenly!. Been following this discussion with interest as I can agree that basically our problems are to do with inflammation not being controlled enough. Different areas of the body are affected and given different names but the basis is the same. You can tell if you have bursitis by touching the outside of your hip. If a particular spot is painful then you do and I'm sure you know you can have injections of steroid or local anaesthetic for the pain. I've successfully had these!. Interesting about I. C suddenly coming back which it can because stress can bring it on. I too have the condition and used to take an anti histamine for it and it worked. My GP suddenly discovered it as a treatment!. Had you ever taken one and then stopped which is why it's returned?. Alternatively, there's always a short course of steroids if you don't already take them but first you do need to ascertain whether you have an infection or not!. Hope my thoughts might help and your better soon. X

  • Thank you misty14. Like I said I haven't had an IC for 6 years, and have told my rhuemie before that I believe the Plaquenil was taking care of that, and really bad shoulders, and I would keep taking it for those two things alone. She agreed.

    Misty14, my hip bursitis in 2015 was very painful for a couple of months, I did get the shot which helped a lot but it has never gone away completely. I can place my fingers exactly on the spots where it is waiting. . . for its chance. If I pump against counter, or wear pants that are tight there, or walk a bit to far, you know it is there waiting. It all makes sense, inflammation can start anywhere in our bodies and the surrounding area where it starts is very jealous and joins right in.

    I have a small supply of Prednisone from my "Holiday" supply, and was thinking about taking yesterday but if it was infection prednisone could possibly make it worse. We were committed to go to my brother's for dinner last night so I took 2 Aleve. It did help a lot with the pain and I did manage to be sociable. Just took two more so looking forward to a more productive day today.

    I read this forum everyday, do not always comment because usually what I would say has already been covered by all you experts out there.


  • Hi Chapter, sorry you're suffering with your bladder, I have suffered with IC for years starting with recurrent infections but much better in the last few years until recently it's all been niggling again, I find bladder pain one of if not the hardest pains to deal with. Whenever I take a urine to be dipped it's always negative and nothing shows on the lab test so I struggle on praying it'll ease sooner than later but I'm aware of my bladder pretty much all of the time! I'm 56 and have post menopausal atrophy and a cystocele and just started a course of oestrogen pessaries. When my bladder is 'playing up' I take detrusitol and desloratidine to help calm it down and Nitrofurantoin after intercourse. I use a hot water bottle between my legs or against my tum to help ease it and when it's been unbearable the only position to ease it is lying on my bed with pillows under my butt and legs up the wall!! 😩

    My urologist used to say that the lab tests don't always pick up an infection and he would say if it felt like an infection it probably is and to hit it hard and fast because if it takes hold it can take the bladder a long time to settle down hence the inflammation continuing for a long time after, he used to let me keep a two week course of antibiotics by me but I haven't been under him for some years now and my gp will always want to test my urine before giving antibiotics. I find it quite difficult psychologically to tell myself it's NOT an infection when nothing has shown up on the test and yet it feels like one! Oh and I have to drink lots of water but not overdo it because that overworks my bladder. I also notice that if I'm doing anything where I've been bending my back like gardening for example my bladder will start to irritate, and I think stress plays a part in it too.

    I'm looking into probiotics at the moment for gut health and noticed that the bladder/vagina comes up too, I also drink rooibos ( red bush) tea as this is suppose to be good for bladders.

    I really hope you get some relief soon.


  • Interstiticial cystitis is inflammation of the bladder lining..i have had this since I was 17 did not get diagnosed until 22.. I am now 29... I find that it can happen the same way a lupus flare can happen with and immune response it is caused by auto immune disorders ... for me good is the number one trigger and if I am fighting illness ... find out what foods may be affecting you you may have to change your diet... e.g. I had to trade margarine for real butter .. I use grape seed oil ald olive when cooking (mostly ) I No longer at all use vegetable oils...corn or canola at all... I may use sunflower and safflower at times.i strive to eat while foods as much as possible and limit tin canned goods.. ..a herb I use regularly is marshmallow herb pills and the disease doesn't ruin my life like it used to. All the best!! I truly hope that you find something that works for you.

  • Yes, Cina, I agree that a good diet is very important. I believe that if you can not name a food with one word then you probably shouldn't eat it. Real food, not preserved - unless you did it yourself - is the way to go.

    I think the IC flare that I am having now was caused by sitting in a vehicle for two long (6 hours). My lupus flares are usually brought on by overdoing the sun and not getting enough quiet time and of course STRESS. If I go back and review my flares, they never started while I was quietly sitting at home resting - always during holidays and after stressful events. So, I should have learned by now to avoid these things 😟. Probably not going to happen 😊

    Thank you Cina

  • Hi Chapter I to suffer from this unfortunately it got so bad I now have to self catheterize twice daily because the bladder does not want to empty fully. I have a permanent e-coli infection to which never goes away, I am so fed up with everything even my bowels are a pain in the arse pardon the pun.

  • I am so sorry julie 1234, that this is a part of your life. I have got my bowels in a bit of a stand still now, usually very regular but these past days Because of the pain I have become quite constipated. I am going to have to take something to get things moving before that becomes its own problem.

  • Hi Chapter,

    I'm afraid I do not have any information about Interstitial Cystitis in lupus specifically. According to the NHS Choices page about IC ( it has been suggested that it can be associated with lupus, but beyond that there isn't anything more.

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