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Interstitial cystitis hand hold

(27 Posts)
Widget123 Wed 17-Jul-19 19:48:17

So, I’m back. Some of you may remember a thread I had at the start of the year... basically I just need some reassurance....

I started getting a pain in my bladder last October, went to the gp got given trimethoprim... did nothing, 5 types of antibiotics, 1 operation to remove a small benign bladder tumour (ironically totally unrelated to my pain), 1 CT scan, 3 ultrasounds and 8 months later and I am still in exactly the same boat.

My bladder is burning 24/7, mornings and nights are worst... I wake in the night up to 8 times in agony bursting to wee, by the 3rd time nothing’s even coming out and my bladder is so sore in the morning from holding in basically nothing it takes hours to calm down.

I’ve turned down numerous social things this year for fear of not reaching a loo in time or from embarrassment of continuously going.

I’ve read every thing I can find on the internet, I’ve stopped eating everything from tomatoes to gluten, totally cut out alcohol and caffeine... virtually stopped having sex. Even painkillers seem to trigger more pain.

Twice very briefly I thought things were improving but it just came back with a vengeance.

The only time I don’t hurt is in the shower or bath, I tried cutting baths out for 2 months incase that was a cause but it didn’t nothing.

I just need to know other people out there are going through this and I’m not alone because it’s ruined my life... I can’t sleep and I’m snappy with my kids and I cry every morning because every morning I wake up and it’s STILL there.

I’ve tried everything from diet changes to excieecise and d-mannose and cranberry tablets... I am at a loss. The lack of research on this depresses me as well as the lack of interest from the GPs.

Is anyone else experiencing this? Will this ever leave me??

OP’s posts: |
Thewheelsarefallingoff Wed 17-Jul-19 20:25:15

Sorry to hear this, op. flowers A friend was suffering similar and HRT has stopped the symptoms for her. It could be a hormone imbalance.

funmummy48 Thu 18-Jul-19 04:11:06

My late MIL had this in her 60s and acupuncture helped her. It was all stress related and did go away after some time. Sending you ((hugs)).

BuckingFrolics Thu 18-Jul-19 21:56:15

Time to go off piste perhaps? I tried

Shiatsu (who knows if it helped but it felt great)
Homeopathy (seemed to help)
Reflexology (seemed to help)
Therapy (helped a lot)

Mine did go away eventually

If men had this, there would be a shed load more research and treatment available. It's absolutely awful. I'm so sorry.

EKGEMS Fri 19-Jul-19 13:50:38

The only thing that helped me as I've had this for 27 years is amitriptyline at bedtime and lots of water and non acidic trigger foods.

JinglingHellsBells Fri 19-Jul-19 14:03:47

Sympathies. I was almost housebound at one point with this and going anywhere was a nightmare- even picking kids up from school after a 15 min car trip.

I've got some improvement by following the IC diet and not drunk alcohol for over 20 years, or tea, coffee, juices. I drink warm water and weak herbal tea.

I don't eat anything spicy, citrusy or with lots of sugar.

I did try all the alternative stuff people have listed and nothing really helped but it's worth a go.

Best for me was HRT and vaginal estrogen but I was 50 at that point.

Also, if you can possibly do it, walking every day in a stress- free country environment can help - improves blood flow all over inc bladder. I walked over fields and would nip behind a hedge when needed.

As PP has said, ami can help and is pretty harmless in low doses- that's about 25mgs a day rather than the anti depressant dose of 70mgs- your GP ought to prescribe.

ineedaknittedhat Sat 20-Jul-19 16:04:25

What fluids are you drinking? The best thing to go for is Evian water only for the time being. Mine was caused by medication and it improved when I stopped the meds, but I'm still susceptible if I have anything orange based.

Try to cut right back to a very bland diet, no seasonings or spices etc. and remain at home and drink evian like it's going out of fashion. Just stay near the loo. We fixed up a handheld spray washer next to the loo - the sort muslim people have - in order to keep extra clean.

I use Vogel uva ursi when I get a flare up - it kills bacteria and reduces inflammation. You just put a few drops in some water four times a day. Sodium bicarbonate in warm water can help with the most painful flare ups too.

It's a case of trial and error, but try to examine everything you're doing and using. Get some very plain bar soap to wash with and don't wash inside with anything but plain water. Don't wipe after a wee, just wash with plain water and pat the outside dry. You can take a drinking bottle into the loo and fill with water.

Stress makes it worse, so look at meditation, even for a few minutes a day.

PollyAnnaDollyHannah Sat 20-Jul-19 16:08:03

Can’t add anything more that hasn’t been mentioned above but have you heard of the cystistat treatment - I have this and noticed huge improvement x

VioletCharlotte Sat 20-Jul-19 16:10:44

Same as OP. It's awful isn't it? I went to the GP again last week in desperation and she gave me amitriptyline. I'd read positive reviews about it online, but it's making me feel awful and totally out of it. It doesn't seem to have had any impact on my bladder so far, I really don't know whether to preserve or not. I'm waiting for a follow up appointment with my specialist following a cystoscopy, but I'm not hopeful they'll have any solutions.

MingeOnFire Sat 20-Jul-19 20:09:17

Amitriptyline helps, the side effects should settle. I have IBS too and my bladder is far worse when my bowels are also playing up.

Widget123 Tue 23-Jul-19 07:31:28

Thank you for your replies. I’ve just had an awful night and am feeling quite low and sore this morning.
I’ve done most of things suggested, all except the amitrip, I have had this before for anxiety but was pulled off of it due to a heart rhythm condition I’ve had since birth, I remember sleeping very well on it but sadly that ones not an option for me.
I’m only drinking filtered water at the moment, I did try Evian for a while but nothing changed. I’m on a bland diet which I’m sick of but sticking too... I’m wondering if it’s something smaller like my detergent or something that keeps doing this?
It’s soul destroying that I’m on such a bland diet and it’s still hurting like this.

Those of you who say things helped... have any of you got back to normal? Did yours go on for a year like this then go or are you still in agony with it or is it just very mild now? I’m just trying to get an idea of what other people have experienced pain wise.

I’ve read about elmiron but I don’t know if I could cope with losing my hair as well right now but I’m getting desperate, has anyone tried this?

OP’s posts: |
JinglingHellsBells Tue 23-Jul-19 17:19:37

You will get used to a plain diet and generally it's much healthier whether someone has IC or not.

I still have bad days mainly caused by being anxious or eating something acidic (sometimes trying it to see if it still affects me.)

Def try ami. You've nothing to lose.

Actionhasmagic Tue 23-Jul-19 18:27:50

Sorry you are experiencing this! I know what you are going through as am having a flare up too at the moment and it’s hugely depressing. I have bought some books off amazon to find out more.

HitthefloorforTaintedLove Tue 23-Jul-19 22:23:57

Hi Widget,

Sorry you're going through this.

I see you can't take amitriptyline, I took it and all it did was make me dangerously dizzy and out of it.

I'm afraid to tempt fate but my IC doesn't cause too many problems these days, (IBS is another matter though!)

The only things I avoid now are blackcurrants and their juice, coffee and very spicy food as I tried excluding all kinds of other foods and it made no difference.

Drinking water is good, I used to also drink pear juice during a flare up which if it didn't help didn't make things worse.

I tried lots of meds, detrusitol, ami, some other tricyclic antidepressants, vesicare (which helped me), bladder training and eventually a cystoscopy and bladder stretch followed by maybr 6 or 8 treatments of cystistat via catheter.

Reflexology also helped, I tried all kinds of alternative therapies.

I remember the desperation and hope that your symptoms (and others here) can be controlled soon. 💐

Widget123 Wed 24-Jul-19 06:58:44

Hi hit the floor, because this is all new to me I don’t really know what flare means, am I in one now do you think? A year ago I was fine but since October I’ve been in agony, can a flare last this long? How long / often did yours last? I’ve read that they only last days or weeks I’m so confused. The doctors I’ve seen so far haven’t taken me very seriously, because my bladder appears normal I’m Cystoscopy they are baffled there’s any pain at all.

Regarding the vesicare it’s the only drug I’ve been given, I’ve got a months supply sitting on my bedside table but have been too scared to take it since I read symptoms can come back worse once it’s stopped in some reviews?? How did it help you did you take it for long?

Sorry for all of the questions... thank you xxx

OP’s posts: |
Widget123 Wed 24-Jul-19 07:03:37

Also, a few people have mentioned bladder training but the pain I’m in if I try to hold it in is unbearable, my bladder just burns and burns which in my head is telling me if my bladders inflamed by forcing it to hold wee is just going to make things worse and not give it a chance to heal? How did you manage it? confused

OP’s posts: |
VioletCharlotte Wed 24-Jul-19 10:51:57

Widget sorry you're having such a bad time, it sounds truly awful. I have bad days, but not pain like you describe. I've had vesicare in the past and it did help with the urgency. However after a couple of days of taking it, my stomach was really sore and bloated. I used to take one now and again when the urgency at night got unbearable, it did seem to help.

Also, have you been offered cystistat bladder installations? I've had them and they seemed to help for a little bit. I think my problem is different to yours though, as cystoscopy shows there is very little scarring or inflammation in my bladder. It may work for you.

All the studies I've read have said to avoid bladder training with ic as it can make it worse. I think that's more for an overactive bladder.

Has anyone tried Prelief? I've read that's meant to help as it removes the acid from food. I've ordered some from Amazon to try.

I've also been reading up about pelvic physiotherapy, would be interested to know if anyone has been offered this and whether it helped at all.

I've got my follow up apt with specialist urologist at the end of August and I'm planning to go in armed with as much information as I can!

HitthefloorforTaintedLove Wed 24-Jul-19 20:27:59

A flare for me was when my symptoms were worse, peeing or feeling like I had to pee almost constantly, unable to leave the house. I did have a couple of years of very bad symptoms but really bad flares were on and off and eventually petered out.

I did a version of bladder training as an impatient but it was literally drink as much as I could for a week, in my case the bladder wall was very inflamed and urine being concentrated made things worse so I did have to drink a lot.

I was on vesicare for about 3 or 4 years and gradually weaned off it several years ago now.

I did try prelief but in the end I don't think food was a big trigger for me so didn't feel the need to continue with it.

Regarding drinking a lot I found it easier if drinks weren't too cold (though appreciate in this weather you might like something ice cold).

Widget123 Thu 25-Jul-19 08:21:05

Thank you both so much, I’m so confused. The urgency for me is a huge problem but it’s the constant pain which is what I’m not coping with...

I’ve had one Cystoscopy which I had to wait forever for, that was back in April and apparently my bladder is totally normal, no inflammation nothing JUST the small tumour, so they totally (understandably) then focused on the tumour and removing it etc and just said to me there’s no reason I should be hurting. I’ve had a CT scan with dye on my urinary tract privately too and that picked up nothing...

I wonder if because I’ve only been getting the pain since October it hasn’t had time to cause visible problems in my bladder yet I don’t know?

The doctors are looking at me strangely saying your bladder looks totally normal (I still have microscopic blood in my wee but have since this started).

I’m booked to see another consultant at the end of September, at this point I’m going to ask for treatment but I just don’t know which to go for there seem to be so many, I would like to have the potassium test just to see how sensitive my bladder is. Has anyone had this?

Even if I drink just water my bladder burns the second urine touches it so when I drink loads and loads (which I’ve tried a few times) the pain is unbearable and I literally don’t get off the toilet so for me drinking lots makes things worse and leaves me sore after because of the constant action of that makes sense. I actually feel better when I forget to drink which I’ve done from time to time just for desperate relief 😣

I didn’t know you could take vesicare on and off like that, I was only offered a months supply I’ll ask if I could have more and maybe give it a go...

How are you with excercise does it make things better or worse? Did you think anything triggered your flares?

Sorry for all the questions... xx

OP’s posts: |
DelfinaRuby Thu 25-Jul-19 08:42:04

Hi while I haven’t suffered this exact thing I have been in constant vaginal pain in the past and it sounds really similar to me. Like your body is very acutely aware of pain in a certain place. Which mine was too. I was out on to amitriptiline but it made me very sleepy so I switched to imipramine and within 6 months the pain eased off. It had been 3 years of constant pain. It switched off the pain receptors and I was functioning like normal. Doctors have options for pain like this so just ask it took my own research to get this as the doctors I saw just said there was no reason for the pain. It turned out that it was started by a procedure they did to freeze cells on my cervix. Just a one time 15 minute procedure caused me years of pain so don’t give up and fight with them for a drug to help you. Xx

JinglingHellsBells Thu 25-Jul-19 08:49:14

@Widget123 When you had the investigation did they fill your bladder with a large amount of liquid, stretch it and take images? This is the test for IC and it's the only way they can see inflammation. FWIW I have always refused this as some women feel worse after it. The treatment is still the same whether they see anything or not. If there are symptoms of IC they ought to treat it once they cannot see any infection.

Try drinking boiled water or mineral water. Tap water contains chlorine bleach which can irritate.

YOur pain might be helped with ami. You need to try that.

VioletCharlotte Thu 25-Jul-19 12:26:57

The more I read about IC, the more I feel that, although there are lots of similarities in the symptoms, the underlying causes are often very different, which is why treatment seems to be pretty much trial and error.

Widget I don't experience the sort of pain you've described, mine is more discomfort and urgency. This obviously causes me grief, but nowhere near as bad as what you're going through. I think I'm your case you need to give amitriptyline a go. I found it made me drowsy and stopped taking it, but the drowsiness has got to be better than constant pain.

I do feel my triggers are stress and acid in food and drink. I've ordered some Prelief so will update on how that goes.

Has anyone tried homeopathy? I've read some positive reviews online, but the cost puts me off.

Widget I find exercise helps, particularly walking and yoga. That may well be because it relaxes me. If you look on you tube there are some 'yoga for ic' videos that might be worth trying.

Widget123 Thu 25-Jul-19 14:36:06

Thank you all for your replies, unfortunately I’m not allowed to take amitrip due to an arythmia I have which makes things even more frustrating otherwise I’d be on it like a shot as it’s the only drug people consistently say helps for this.
A mother on here wrote once saying her daughter had IC so bad she’d get up and have baths in the middle of the night just to soothe the pain... I’ve done that before so I’m guessing we are all in the same boat just on varying degrees.

Ruby I completely agree with you about an area of the body being so tuned in on the pain your body gets into a viscous cycle, I need to address that, right now though anything I have from vitamin supplements to paracetamol and ibuprofen seems to make my bladder fat worse the next day so at the moment I’m just trying to get it to a slightly better place as I can’t cope with it being worse than this.

Jingling I didn’t have the stretch, I haven’t had any investigations this is my timeline to help understand why it’s taking so long to get anywhere 😩

October -
symptoms started literally overnight

November-December -
Numberous GP visits, they thought it was a UTI so I was put on 4 different types of antibiotics for varying lengths of time

GP ordered Ultrasound on urinary tract and repro system. A small suspected angiomyolapoma (fatty tumour) was found in left kidney nothing else untoward.

January -
I paid for a private CT scan with dye on urinary tract as I was concerned about the kidney tumour. Results came back totally clear, it didn’t pick up a tumour in my kidney BUT also missed the one lasted found in March in my bladder.

March -
Had my first appointment with a consultant, he wasn’t helpful handed me vesicare said I had an overactive bladder and sent me on my way saying he’d book a Cystoscopy and take it from there. After reading up on him it turned out he wasn’t a consultant and was training so after 3 months of waiting and his negativity about the whole thing it wasn’t great.

I had the Cystoscopy which I found unbelievably painful. When the instrument entered my bladder I nearly blacked out. This is when they found the tumour and decided it was most likely malignant so removed it 2 weeks later.

May - meeting with consultant following surgery confirmed tumour wasn’t cancerous and wouldn’t have caused any pain. At this stage I was in more pain from the Cystoscopy. When I mentioned this at the end he said he was referring me to his colleague who has more knwoledge in that area. I’m due to see her in September.

So with all of that going on no ones really been concerned about the pain side of things so I’m just hoping I can get somewhere in September... x

OP’s posts: |
Itwontrainallthetime Thu 25-Jul-19 15:04:34

Have you tried buscopan, I know it's usually for ibs but can also be used for interstitial cystitis.
I have it on and off and it isn't fun. I also take amitriptyline at night which helps.
I'm also on cocodamol and ibuprofen which helps with the pain.
I had a bad bout of interstitial cystitis and then doctor recommended buscopan 2 for times a day .

DelfinaRuby Fri 26-Jul-19 13:26:29

I would most definitely explore pain options get yourself on a neuropathic pain agent of any kind it doesn’t have to be anti depressants as they suggested an epilepsy drug to me as well. Whatever works to block your pain receptors. You have had a very similar experience to me where a procedure a hospital did caused you intense pain. Your body is probably struggling to recover from that. Be forceful with the doctors I had to be as I was on a real downer with it after so many years. Good luck x

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