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does anyone else have interstitial cystitis?

(83 Posts)
LoveAndSqualor Wed 27-Oct-10 17:36:31

Wondering if anyone can help ... About two weeks ago, found I was needing to pee ALL the time. I went to the doctor's, thinking I had cystitis (though it felt different: no burning, just constant feeling of needing the loo), got antibiotics. They didn't help, so I went back on Monday, and he tested for a UTI, but all clear. He thought I might possibly have pelvic inflammatory disease (though highly unlikely, as no real chance of an STD) and stuck me on killer antibiotics for that. I've been taking them, but no better at all - constantly feeling like I need to pee, no relief when I do, general unomfortableness ... ugh. The other thing he mentioned was interstitial cystitis, and looking at the symptoms, it does seem a very close fit sad. I've also therefore cut out caffeine, alcohol, fruit juice and so on for a couple of days, but again no effect yet.

Does anyone else have it? How do you manage it? It's driving me NUTS at the moment and making me feel really miserable ...

OP’s posts: |
ilovehens Wed 27-Oct-10 17:49:19

You should get back to your doctor and ask for different antibiotics. I had all your symptoms and my msu came back clear, but I still had an infection.

My symptoms returned a few weeks later, but I started drinking cranberry juice like it was going out of fashion and also bought some cranberry powder sachets from the health food store and that managed to see it off.

You can buy sodium citrate powder from the chemists for cystitis and that's good as well, but won't get rid of any infection.

Which antibiotics were you given and how long was the course?

LoveAndSqualor Wed 27-Oct-10 18:15:05

Hey ilovehens, thanks for getting back to me. Can't remember what the first antibiotics were, but I'm now on two lots, in very high doses (apparently they blast you when they think you might have PID, as it can cause infertility) and these aren't having any effect ... which is what's making me think it might by interstitial cystitis, rather than bacterial ...

OP’s posts: |
ilovehens Wed 27-Oct-10 18:35:49

Trimethoprim? was that one of them?

Has your doc sent an msu away or just dipped your urine whilst at the surgery?

hobnobsaremyfavourite Wed 27-Oct-10 22:22:03

Love and Squalor you have my every sympathy at the moment . I have just finished 3 lots of antibiotics after developing similar symptoms to yours. My GP now thinks I may have something called an unstable or irritable bladder and has started me on medication called oxybutin. I have also done the cutting out alcohol/caffeine etc. I am currently awaiting an appointment with an urologist but the symptoms at their worst are driving me MAD! Hope you get yours sorted.
BTW there is a website with helpful advice if you google unstable bladder I think you will find it.

purplepeony Wed 27-Oct-10 22:36:39

You need to join this forum

www.cobfoundation.org ( might be UK at end of that)

loads of help and message boards.

BeenBeta Wed 27-Oct-10 23:06:19

LoveandSqualor - I have suffered from interstial cystitis for many years and eventually self diagnosed and self treated with a little support from a specialist who really understood the condition.

After going through many painful, distressing, humiliating and unecessary treatments (all of those listed by posters above and many more) and losing all hope I went to see the team at the John Radcliffe hospital in Oxford who are studying this condition.

I was told there is no cure but it is related in some way to certain trigger foods AND is a kind of autoimmune condition where the body attacks the bladder will and cause inflamation. I had also noted over many years that the bladder pain was often linked to IBS symptoms and muscular/joint pain when the attacks were severe.

I found tomato was a serious trigger food for me. I also found I was a coeliac a few years later and cutting out all gluten containing foods and dairy has dramatically improved my condition.

For many years I had told doctors that I knew it was related to what I ate because the symptoms disappeared entirely if I fasted 24 hours and just drank water but they just shrugged their shoudlers. It was so nice to eventually find a team of doctors who agreed with what I said and understood how I felt.

It ruined my life for quite a long time but by changing my diet, changing to working from home and occassionally wearing incontinence pants I find life is now quite pleasant again. It does not feature in my life hardly at all now after dominating it for years.

fourkids Wed 27-Oct-10 23:59:02

BeenBeta, is the link between interstitial cystitis symptoms and IBS symptoms a recognised one?

Thingiebob Thu 28-Oct-10 00:12:22

Hi
I have an auto immune condition that causes inflammation in my body and I regularly get bladder pain which I believe is related. I go to the doctors and all my urine tests come back clear yet it feels just like I have a bladder infection or cystitis. Interstitial cystitis or 'sensitive bladder' are two possible diagnoses.

The only thing that works for me is to use the sodium citrate powders as this seems to ease the pain and take Ibuprofen and paracetamol together every four hours otherwise it makes me so miserable. Gradually over time it goes away but I feel for you as I know how unpleasant it can be.

BeenBeta Thu 28-Oct-10 08:02:03

fourkids - yes I have read various research papers suggestng a link. A quick Google came up with this short summary to a research paper mentionng chronic pelvic pain in women and IBS and interstitial cystitis.

A major problem with this conditon is that it has such diverse symptoms and causes but the debilitating outcome and impact on life is undoubted.

LoveAndSqualor Thu 28-Oct-10 12:18:49

Hey everyone, thanks SO much for replying. Had a terrible long-dark-night with it last night, so uncomfortable and miserable. This morning, though, I've made an appt with a nutritionist who says she has some success in treating the condition.

Interesting about the IBS link; I've had that in the past, though been symptom-free for a while. I'm not in pain as such - more just feeling constantly as if I need to pee, and tingly and achey in the general area. Argh.

BeenBeta, good grief - you had to switch to working from home? Lordy, that's not really an option for me (single parent to DS, though have wonderful and supportive DP).

Also - sex. Is this a problem with IC? Any advice very gratefully received ...

OP’s posts: |
BeenBeta Thu 28-Oct-10 13:47:20

Yes sex with IC can be a major problem for women in particular and I have to say it aint fun for a bloke at times.

As link this suggests it is especially painful in the morning and like trying to pee razor blades. I used to say it was like peeing acid.

LoveAndSqualor Thu 28-Oct-10 14:15:26

Lordy - sounds deeply unfun. Thanks for the link. I may try to make an appt at that clinic, if all else fails ...

OP’s posts: |
LadyCharlane Sat 10-Feb-18 04:26:37

I notice it’s been a while since anything was posted- but - I’ve had IC for about 20 yrs. I’ve done it all. Was bedridden 2 yrs but while I struggle, I’ve learned to live with it and now travel all round the world. Remember it’s not a bladder infection. It’s a disease- antibiotic won’t help and may make you sick if you keep taking it. Your tissues aren’t growing naturally- Elmiron may help that (Med), best is diet and pelvic phy. Therapy. But if you’re nt feeling pain like a cross of kidney stones while giving birth, it’s not ic.

Mrbumpoid Mon 30-Sep-19 14:01:45

@LadyCharlane

But if you’re nt feeling pain like a cross of kidney stones while giving birth, it’s not ic.

What do you mean by this?

Hugsneed1958 Thu 10-Oct-19 14:57:08

Help had hysterectomy 15 yr ago now 61 have vaginal atrophy and use vagifem. Which helps ,but not sure if intestinal cystitis as no infection but dull ache above pelvis need to wee more.no one talks about symptoms. From what read comes and goes ad not much you can do.am I only one in world help please x

Hugsneed1958 Thu 10-Oct-19 15:00:18

confusedplease so confused by internal cystitis and vaginal atrophy symptoms. 😩😭

Mrbumpoid Thu 10-Oct-19 16:37:02

@Hugsneed1958

My symptoms are:
Frequency not urgency
Constant Pain in urethra
Constant Pain in bladder

Aleksandra1990 Mon 14-Oct-19 15:30:51

I started off few months ago having niggly type pelvic pains then a couple of months ago urinary infection type symptoms which were easy for me to recognise since I have suffered with cystitis every time after intercourse ever since I became sexually active. The doctors eventually prescribed me a single dose antibiotic every time after intercourse to keep this under control. Anyway I went to the doctors a couple of months ago and was given antibiotics although they said when the urine sample was sent away no infection was present. I mainly have mild irritation/discomfort in my urethra and sometimes pelvic pain in my bladder area, I am drinking plenty of raw organic cranberry juice, taking probiotics and also a supplement which is good for the bladder. A couple of weeks ago I had a cystoscopy which was awful and she said I had a red patch on my bladder and wants to look again in a few weeks time. I have been consumed with crippling anxiety that I’m going to have cancer and leave behind my two small children but the consultant assured me it didn’t look sinister. Since having that procedure it’s really aggravated things agin and just this morning our of no where I got this crippling pain in my lower abdomen and was on the floor in agony! I’m so scared something awful is wrong and don’t know what what to do.

Mrbumpoid Mon 14-Oct-19 16:44:03

Message withdrawn at poster's request.

Mrbumpoid Mon 14-Oct-19 16:47:00

@Aleksandra1990 do you have blood in your urine? Seeing red in there is normal for people with IC. Do you have pain when you actually wee?

My urologist thinks I have an underlying infection that the labs aren't picking up. Google it bc apparent 1 in 5 aren't accurate. She has now put me on a six week course of antibiotics followed by another six weeks of a different antibiotic. She will do a cystoscopy in six to eight weeks. I don't feel it is cancer bc it doesn't actually hurt as I wee only before and after and also I have no blood in the urine. I am going private tomorrow to a urologist for a second opinion to see if he agrees that I should wait for the cystoscopy.

With regards to your current pain, I think it is normal for his to flare up after that procedure for a few days?

Aleksandra1990 Mon 14-Oct-19 17:09:19

@Mrbumpoid no I have no blood in my urine and it doesn’t actually hurt at all when I urinate. It’s quite an indescribable feeling really. My urethra just feels out of sorts but the urologist examined me and said that looked fine, it’s just this area of red on my bladder and she said that’s not what cancer looks like but I’ve been reading about something called “carcinoma in situ” which I think presents as a red patch before cancer takes hold. I just have no idea what is wrong with me but it’s making me so miserable, like now for example I feel my bladder is full but if I go to the loo there won’t be much urine and it will be a trickle. I am spending my life unable to enjoy anything because I am so anxious something awful is wrong with me 😔

Mrbumpoid Mon 14-Oct-19 17:23:14

@Aleksandra1990 Well do also remember the symptoms of bladder cancer are the frequency of needing a wee but also blood in urine and pain whilst you pee. You and I aren't experiencing the last two so that's something.

I’m going to send another msg under this one bc I've forgotten your history so will look now

Mrbumpoid Mon 14-Oct-19 17:28:08

@Aleksandra1990 okay so perhaps in the meantime try to cut out the foods that irritate the bladder (this website is great - https://www.iurologist.co.uk/wp-content/themes/ypo-theme/pdf/ic-diet-sheet.pdf). I wouldn't Google too much but stick to the NHS website. D-mannose found on Amazon is great for many and also drinking marshmallow root tea mixed with marshmallow leaves (also found on amazon). Don't use any wash stuff down there either.

I would push for a long term antibiotic bc only 75% of infections show up on the lab results. There's a lot about it at the moment. Many people with interstitial cystitis may well actually have an infection. I'm on a course for at least 12 weeks.

Aleksandra1990 Mon 14-Oct-19 20:21:24

@Mrbumpoid it’s so strange because sometimes I feel the urgency like I said but little comes out and then other days I hardly feel like I need to go to the loo at all even though I am drinking plenty! I was feeling much better until I had that cystoscopy a couple of weeks ago! I have also had a lot of blood tests over recent months to check for so many things so I would have thought surely any signs of infection would have showed up on at least one of those? I don’t want to pump my body full of antibiotics if there isn’t actually an infection present. I am finding it so hard because I am someone that suffers with health anxiety mainly centred around cancer which all started when I was 13 and my best friend kept complaining of ear aches, the doctor kept saying time after time it was an ear infection and then months down the line she collapsed and they discovered it was actually a brain tumour. That really messed with me and also my mum was a nurse for 30 years so I would hear all these horror story’s! My anxiety has become so much worse since becoming a mother as my biggest fear is leaving them! I have been trying the D Manose stuff too and also organic camomile tea along with the raw cranberry juice but nothing seems to be helping! Thank you for the advise! Diet is definitely something I need to look in to.

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