Just a thought. Yet another one. Can anyone out there help, I would be really grateful. After all these years still constantly looking for answers to my pain. Along with fibro, underactive thyroid, kidney disease and irritable bowel, plus all the other extras we get, has anyone experienced interstitial cystitis. Had pain problems down lower right side of abdomen and groin area for years. Checked out for suspected appendicitis, for bladder, ureter and even kidney infections at various times, but nothing to really explain the constant (variable) pain. Eventually, (think doc is out of ideas) I put it down to suspected adhesions after complete hysterectomy for extensive endometriosis over 30 years ago. or possibly remaining bits of endo (although doc says this not possible) or even maybe a kink in lower bowel causing pressure on bladder.I am open to all other suggestions , or failing that any ideas for pain relief other than hot water bottles and paracetamol. Take care everyone and stay safe. xx All responses gratefully received.
Another query?: Just a thought. Yet... - Fibromyalgia Acti...
Another query?
This could be Diverticular disease. Although pain is usual in left side, I have it in my right side. This can be managed by diet. Hope this helps
I'm not sure if mine is the same thing but I am currently waiting on investigation into my bowels as I have the same pain. Been experiencing it for 6 months or so now Long with other things. I havent had a hysterectomy but I have had 3 c sections, gall bladder removal, bernia removal and 3 laparoscopies, a doc has suggested its scar tissue from all the surgeries. Im not convinced! Waiting on the camera to have a look at my bowels and hoping to find some answers as the only thing to combat the pain for me right now is tramadol (which isn't the best thing to be kn while working full time in a nursery and raising 4 kids at home!). Not sure if its something you want to try but it does take away my pain but I also need laxatives to go with them or that can lead to more pain and issues.
Thank you Scottish-Lass. I do take fibergel for constipation which does help a bit. Not sure I want to try tramadol route but then again anything is worth a try when in pain. Hope your tests are successful.
Thank you. Hope you manage to find something that works for you as there's nothing worse than being in pain all the time. Take care.
xx
I have a form of endometriosis, called ademomyosis, where the uterus and bowel are fused together. This can occur after surgery such as a C section. I normally take painkillers and apply a hot water bottle. Don't know if this helps - just a thought!
Thank you Ninapod. To be honest wouldn't be surprised if I hadn't got 'ademomyosis' sounds plausible, although it's never been mentioned and haven't looked it up yet. Been suffering for years but once labelled with fibromyalgia pretty much everything is put down to that. I'm the same as you. Best friend hot water bottle and over the counter painkillers, although they don't help much, but then, I have problems with medications as well as everything else. thanks again and stay safe. xx
I often get cystitis when working as do not drink enough and get constipated with ibs as well. I find Buscopam helps, this works on smooth muscle like bladder and bowel. Stops ibs cramos also. I get right side pain a lot with ibs and was told the full colon can irritate appendix and mimic appendicitis but no fever. I also drink Cistease when get burning and its eases fairly fast.
I think a lot is all linked, like you I was told had endometriosis although going through the change so would think that had settled as well as having an IUD and no periods since.
My ibs has been murder since lock down prob due to drinking more and chronic insomnia.
I hope that buscopam helps and ibuprofen if you are able to take may work as that's often good with bladder pains too.
Good luck x
Thank you Julesubu. I am grateful for all suggestions. Fed up with suffering just like the rest of us so am willing to try just about anything. Must admist haven't tried CBD yet although I think some have tried it for fibro pain. Take care. x
For the ibs , I was diagnosed with this and given buscopan which did seem to help , I was also suffering with heartburn indigestion, I done a lot of research and this is what I came up with, 1 tablespoon of apple cider vinegar (raw organic) half a lemon and half a lime squeezed into 200mg of water, first thing in the morning and last thing at night , 3 months later I am off the buscopan, and the omeprazole , no issues with stomache pains or indigestion , reduced cholesterol, and blood pressure and lost 2 stone 7 pounds , it is a disgusting taste but if you google the benefits of taking this you will put up with it, make sure you research this but my ibs seems to have disappeared, all the best please let me know how you get on ,
Hi Davesplace. Thank you for the information. Anything is worth a try. I am glad you have found something which helps. Think I might give it a go. Just at the moment I am struggling with a load of other problems, so even though I am in pain, it will need to go on the list. Thanks again.
I phoned the doctor about 3 months ago saying I thought I had interstitial cystitus, she agreed. Or bladder pain syndrome as it's known as too. She said it's very commonly found with fibromyalgia and IBS patients. I was classed as having an overactive bladder before and given a laparoscopy when I was a teenager it came back clear. I had cystitus after both births of my children, probably bc I was catheterized. When the infection went the pain didn't. I'm an insomniac and not sleeping irritates the bladder as well bc essential processes that only occur when you are asleep obviously dont happen if you don't sleep. By morning I can be in a lot of pain.
The doctor wasn't very helpful, she wouldnt give me any meds bc she said I was already on Amitriptyline and that's one of the things she would prescribe for it anyway. She suggested barley water might help although she said there was no statistical evidence it would help! Giving up caffeine has helped a lot though, I used to drink quite a lot of coffee. I also noticed it's much worse after I eat tomatoes so sadly I don't eat them anymore. There are diet suggestions for interstitial cystitus, but what with the IBS fodmap diet and everything else I'm not good at following these things! I take buscapan in the afternoon bc I think sometimes the interstitial cystitus triggers IBS as well, but I would never take painkillers for it as it aggravates my stomach/guts/ and whatever else is down there!
Thanks for responding. I can relate to all you say. Trouble is the docs are at a loss a lot of the time if you have any problems not straight from he text book. I asked about natural remedies and she hadn't a clue. Said to ask the chemist !
Yup I think GP's are as jaded as we are about our inability to be helped! However there are a lot of treatments for institial cystitus but a lot of them are quite invasive and involve catheterization, sometimes several times and some where you have catheterize yourself that sound like a nightmare! Also none of them seem to cure it but can help for while. When I've looked them up before there were at least 10 different treatments. Trouble is people have even got to the point of having their bladder removed entirely and this still hasn't taken away the pain. I assume it's rather like phantom limb syndrome and I'm too tired from all my other problems to go down complex treatment routes plus I'd probably have to harass the GP's before they'd give me access to further treatments anyway and I'm not good on phones!
I agree Catoo. After years of trying to get it sorted I think I have now given up! I really thought 30+ years ago when I was diagnosed with endometriosis (which I hadn't heard of at that time) that things would be fine once I had had the hysterectomy . Prior to this I was told I had irritable bowel. But they weren't OK and no matter how much I have banged on about the pain, the docs seem to have their own agenda and I was eventually diagnosed with fibromyalgia 10 years ago. I have had several tests over the years, but always at my instigation and obviously they haven't discovered anything relevant. Interstitial cystitis has never been mentioned, so once again it is a case of patient diagnose yourself. There is no wonder we end up depressed and suffering with anxiety. The worst part for me is that my family really don't understand just how bad the pain and mental stress is, to be honest I think they think I am a hypochondriac, so it is never discussed and I solder on as best I can. This is also a disappointing to me as I have always had empathy for anyone with problems, but I know my family and nothing will change their ideas. Sorry about the rant. Don't know where it came from. I didn't intend to ramble on. Take care!
Endometriosis is a nasty condition I feel for you! It's funny my family tried to understand, teachers at school and university just thought I was lazy. It wasn't til my mother developed a chronic pain condition herself, polymyalgia , 3 years ago that she could really understand!
Hi Cat00. Thank you for replying, It is good to hear from someone who truly understands. I feel like a total hypochondriac but will just mention that I was treated for polymyalgia for 12 months with steroids before they discounted that and said it was fibromyalgia. I am starting to think I have had far more than my fair share of chronic illnesses. Take care. x
Thank you for your reply and tips. I am happy to take them all on board. Whatever helps!
Hi ShelWhit.
I have been very ill for years & can at times go to pass urine every other hour. I was put on every single bladder med but none really work, but they might for you, so see if you can get any prescribed. I get amitriptyline which can help for night time. I done the exclusion diet too, but just stopping caffeine, sugar etc helped. I used intermittent self catheterisation, but pain & urge still there. I have a very narrow urethra they said after I had two cystoscopies. I'm on cocodomol too. Tbh, a uerologist might be better as it's them who can diagnose you. Try heat pads on your lower back too. I'm so sorry I cannot be more help, it's so frustrating when you can't get proper diagnosis, but it is a process of elimination. Hope you get more results from uerology. Best of luck. 💯
Thank you cassduffy. I can well understand what you are saying. I have problems with medication (another reason I think the doc has all but given up!) I especially can't take amytriptiine, although I have had several attempts as this seems to be the drug of choice for fibromyalgia and several other conditions. At the moment I stick to hot water bottle and paracetamol and the occasional diazepam. So many of us suffering, wouldn't you think there would be help out there? Take care.
Suggest you check out Ileo Cecal Valve dysfunction. It may be of interest. It is often overlooked but can cause a myriad of problems that mimc other conditions. There is a lot of info online, the following is just one example.
naturalhealthtechniques.com...
The following is a self help technique that can be helpful.
nrg4u.org/mystuff/downloads...
Wishing you good health.
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