Interstitial Cystitis

[Jamielynn18]

Please someone help me I'm scared to death my mom had Breast cancer, her mom. And her moms 6 sisters and yes my mom had IC also. 😢

[Jamielynn18]

I just left the hospital my Breast is in excuritiang pain I do have IC of the Bladder for 26 years I haven't had insurance so I haven't had a treatment since 2008 does anyone think that's why my left boob is in so much pain any answers please or comments????

[Ninja]

For info for the others:

IC isn't like normal cyctitis which has burning pains on urination etc.

IC doesn't feel like that so it can be undiagnosed for years. It can cause very frequent urination which I had originally put down to the bladder prolapse but instead it was IC which had to be treated before he could repair my bladder surgically.

[Ninja]

Hi Ann,

I went on to develop IC, it was discovered when I was being examined for a hysterectomy/prolapsed bladder, brought on by Tamoxifen/Exemestane.

The gynae chap found that my lower abdo was very tender and I had blood in my urine. I had a cystoscopy under a GA to ensure that I did have bladder ulcers and not bladder Ca. They also stretched my bladder during the op and that helped and it can tend to get stiff and small.

I was given a course of several drugs (antibiotic, stomach ulcer drugs and a bladder tamer) to relieve the symptoms but there is no cure.

The IC was brought on by a combination of a tendency to gain more auto-immune diseases (I now have quite a collection) and it was exacerbated by the use of Tamoxifen.

Good luck.

[Guest user]

Hi Lynnq,
Ihave been taking tamoxifen now for 17 days & I have noticed a change in my IC & flair-ups. I can say that my IC has imroved by about 15%. I don't have to go as often as I used to go. I'm not sure if its tamoxifen or change in my diet as I am avoiding eveything that even may contain soy! How about you or anyone else with IC, has any of you feel any difference in regards of improvement in your IC condition????

[Guest user]

My IC is not much painful, the fact that I have to go for up to 20 times a day is upsetting. Flair-ups during period time is too much to handle specially not being able to sleep at night, (max 3 hrs a night if I'm luck). My breast cancer is more upsetting than my IC because I don't know what will happen in the future, I've been living with IC for 20 years but now the cherry on top is more upsetting.

[Lynnq]

Hello. abon. The cancer that I have is ER positive which means that it is fed by the oestrogen in my body and LETROZOLE is a hormone blocker which stops me from producing oestrogen. It is cancer treatment called Hormone Therapy. My cancer has spread To some of my bones and my abdomen it is not curable but is treatable. They tell me that it won't go away but can be held and maybe even reduced for 'some time'.....and this can be - In some cases - years. My last scan was encouraging showing no further spread and some improvement.


the Onc says that they will save chemotherapy for. -"sometime down the line should it prove necessary"- I will stay on LETROZOLE until it stops working. It is generally used for post menopause women because it blocks oestrogen and therefore can cause similar side effects to the menoause.

how is your IC now?

[Guest user]

Lynnq, whats LETROZOLE & what did it do for you??? How's your breast cancer now???

[Lynnq]

I also suffer from IC had it diagnosed about 4 years ago, before breast cancer. I have secondaries, discovered practically straight after initial diagnosis so I have not had chemo but went straight onto LETROZOLE. Have had bilateral Mx. Two days after starting LETROZOLE I had the most dreadful flare up of my IC, saw the GP practice nurse who took a urine sample which showed nothing. I was in agony and so miserable, almost in tears......she gave me three days antibiotics but they did no good. I then spoke to the BCN. She advised me to take Ibrufin (anti inflammitories) with meals for 3 days.......since it is inflammation of the bladder. The pain went away but as soon as I stopped taking them it came back within a day or so. So I took them again for another three days and that time when I finished it didn't come back. I usually manage it quite well. I am very selective with the fruit that I eat, wear cotton underwear, hardly any fizzy drinks, loads of water etc. but I am sure that you know all of that. I have Also an hiatus hernia so avoid Ibrufin usually but it was a god send and the BCN said to bear it in mind for future flare ups. This was about eight months ago and I have had no significant flare ups since.....

[Guest user]

Hi Ann,
I do suffer with IC as well and just been diagnosed with breast cancer. I do need chemo but I was told one of the side effects of chemo is IC & since I have it, they are not going to recommend it for me because it can worsen my IC. Maybe you should talk to your doctors and decide what's the other options for you. Since chemo has to somehow exit your body it will damage your bladder wall more and makes it more sencitive. Please let me know how it goes for you.

[Cassowary]

Dyane
thanks for posting your experierence. I have a history of water infections, which don't cause any symptons apart from smell of the urine. Further medical investigation was not able to identify a cause, so I will be on the look out for anything which should be flagged up if chemo could have additional effect. Appreciate it.
Jude

[Guest user]

Hi
I am having 6 x FEC. At day 8 of my first cycle I had a burning sensation when peeing, having never had cystitis or anything like this before, I assumed it was cystitis so just drank loads included cranberry juice. By day 13 I was in agony, it was like I'd taken a Brillo pad to my nether regions & trying to pee was excrutiating. It turned out that I had a rare symptom of neutropenia & had to take a course of ciprofloxacin. If your symptoms persist, it is definitely worth contacting your chemo unit, as by the time the onc saw me, my nether regions were burnt & raw - very unpleasant.

Dyane

[Guest user]

Thanks, ladies.

Morwenna - I am on weekly Taxol and have just had the third week (one cycle). I know that the bladder lining is thinner after the menopause and I came off of HRT, so it was a big leap. I don't seem to get normal cystitis any more but the type without infection.

It is so uncomfortable. Bicarb helps sometimes but not always. I may speak to the pharmacist when I go shopping this afternoon. I have considered taking Glutamine because that is supposed to help but not sure my oncologist will approve.

Ann x

[susanmary]

Hi Ann,
I am also having Taxol weekly, just had 6th of 12, but I have not had any bladder problems.
I know that Taxol affects the mucous membranes. Drink plenty, which I am sure you do anyway.
Chat to the nurses on here? They are very helpful.
Hope you feel more comfortable soon.
Take care
susan

[Morwenna]

I on AC chemo, have had 3 out of 4 treatments and will be followed by 12 weekly taxol treatments.

After AC 2, I noticed small spots of blood after passing urine, but had no pain or other cystitis symptoms. Only lasted 2 days, then stopped. I forgot to even mention it to my onc!

After AC 3, I never had any visible blood but did have mild discomfort peeing. I'll remember to mention it this time! I also developing mouth ulcers, so I think it is general mucositis. I presume it will be more marked after AC 4!

I am a little concerned about how I'll fare on taxol. Are you having it weekly, or a higher, less frequent dose??

[Guest user]

Irenee - Thank you for your reply. My type has been tested before for bugs but comes back negative. Years ago, I did used to get normal cystitis occasionally and so I can tell the difference. With you, either it cured itself or it was bacterial cystitis. Seems odd the results were negative, though.

Ann xx

[Irenee]

Hi Ann_04 I get cystitis...I am on chemo FEC and last week I had burning on passing water. The doctor did the usual test and said it was negative...The next day I was still suffering so I rang the surgery..He then put me on penicillen which now a week later has cleared it up, I have heard if your type of cystitis and hope it clears up..lots of water helps. sending hugs Irenee xx

[Guest user]

I guess this is not a common problem, then. I must be special.

Ann

[Guest user]

Thanks, MM. Much appreciated.

[Mungos_mum]

Hi Ann,
I'm afraid I can't help, but am bumping this up so you will hopefully get some advice.
Best wishes,
MM

[Guest user]

I am on weekly Taxol and have only had two weeks of it. One of the problems I have is that I have a senstive bladder and I get interstital cystitis (not caused by bacteria, as is normal cystitis) - pain, bleeding. I have a bout of it now. I am not sure if the chemo brought it on or painkillers I had been taking.

Not many doctors recognise Interstitial Cystitis and most women diagnose themselves. The doctors always insist on testing a uriine sample but it comes back only showing blood, not infection.

Does anyone else get this and do you have any tips? In the past bicarbonate of soda helped but doesn't seem to be doing much this time.

Ann