Ive had much discomfort with my lower back, stomach area, vaginal area...which really heithens pain during menstruation. a couple time s I had an actual bladder infection. but 2weeks ago after period ended, the pain didn't lessen. I was told it very well looks like intersistial cystitis along with IBS-constitpation. prior to this, for a month I had begum exercising, less strenuous then my last attempt a year before. also eating pretty healthy and lots of water. I have been having bowel movements, been taking myralax to help bowel movements soften and occur at least once a day. which may give a lil bit relief for a short period of time before the full discomfort is back. So anybody on here has or had intersistial cystitis or knows a lot about it? Any recommendations on how to ease the pain? what are the best effectives to use or not use for this? im on medi-cal and the doc I have...,and not many at all to chose from, is not much of help.
I have IBS. I have to watch my diet very carefully. If I don't I am going to have an IBS attack. I drink a lot of water, which helps tremendously with bowel movements. I believe I drink at least 8 glasses a day. And I do get urinary tract infections. I keep Bactrim here, When I get that, I take one Bactrim and basically drink lots of water. Hope that helps a bit. I also take 2 Advil when I have pain.
I take AVO tablets which are available over the counter for my bladder pain. They are amazing. Also I’ve made a few rice socks. Take large men’s white athletic socks and fill 3/4 with plain rice. Tie a knot on the end. Put in microwave about two minutes. These are super nice for back/neck pain. I’m sorry that you are suffering.
you should also look into endometriosis, not sure on the spelling, it can also give you pain in all those areas. i have just started going through menopause and i finally am not having the pain Ive had to deal with since i was 16, now 50yrs old. Ive had constipation, menstrual cramps, ibs, stomach pain, intestinal cramps and lower back pain all those years and never found a good reason other than i have fibromyalgia.
i got a small amount of relief from taking calcium, magnesium and b6. b12, and flexeril. flax and coconut oil .
Sorry your having all this pain and i know its a lot to deal with. one thing my gyno told me that i never had til after i had kids but you can have it at anytime is a tipped uterus which can cause back pain and more. You should Google some of these ideas.
The Dr that helped me the most was my gastroenterologist. If you haven't seen one you should think about seeing one. Hopefully someone can come up with something to ease your pains. Good Luck!
Hi Kimberlynn- I have not been diagnosed with IC but struggle with symptoms at times. My doc says mine is fibromialgia. I have an rx for pyridium. He also gave me a short course of ditropan-which is ususally used for incontinence. He has also prescribed some vaginal estrogen cream,which he said will help regulate the PH (I think that is what he said). It really sucks when it is flared and I feel for you. I try to avoid caffeinne and wine-both of which can make me very happy or very miserable. Best Wishes-Janice.
Iarshave IBS & Interstitial Cystitis as well as Fibromyalgia. For diagnosis of IC, which mimics UTI’s and bladder infections, a blind test to determine if you have it. IC is the third most painful condition one can have. Fibromyalgia didn’t even make the list of top ten. I follow a strict diet - No alcohol, caffeine, chocolate, spicy foods, all fruit except pears and blueberries, any processed foods, soy, msg, vegetables that are hot or spicy, all condiments and sodas. It is difficult to follow but worth it. The pain is excruciating. I will do anything to avoid the searing pain that leaves me bedbound for weeks at a time. ICN.org is a great guide to the newly diagnosed. Julie Beyer is an RN afflicted with IC. Her website, Confident Choices is excellent.
Hi! This is Sheri again. If you do decide to try the AVO tablets, be forewarned they make your urine dark orange for a while. That freaked me out the first time I tried them:)
physiotherapy – this can help relieve any pelvic pain caused by muscles or surrounding tissue
painkillers – such as aspirin and ibuprofen
certain antidepressants – these may reduce pain and improve other symptoms
certain antihistamines – these may reduce the frequency of needing to urinate and improve other symptoms
bladder distension (where the bladder is filled with water to increase its volume) – this may help to temporarily relieve symptoms within a week or two after the procedure
bladder instillation (where the bladder is filled with a solution that includes medication to reduce inflammation of the bladder walls) – this may help to temporarily relieve symptoms within three to four weeks after the procedure
transcutaneous electrical nerve stimulation – where mild electric pulses are used to block or reduce pain signals going to the spinal cord and brain.
These are a few things that are used to treat your condition in UK I hope it helps.
Sorry I’m Val ex pharmacy tech also suffering with Fybro and many other things.
I try to help anyone on here it helps as lost my job due to this.
Please take care I hope you feel better soon 
V
I also take AVO tabs at first sign of bladder issues. I also take 800 to 1600 of Mag this helps bowels along with other things.
I take Macrodantin prescription which helps immediately. Also, my GYN gave me Elmiron which needs to be taken daily.
I usually use Macrodantin only when I feel a problem coming on.
I had the hydro-extension some years ago. I was so debilitated from pain I would have tried anything. The Doctor said it may help some or alot. My symptoms subsided a great deal. It truly helped.
I have no advice I can give although several ladies I’ve cared for have sworn by drinking cranberry juice every day to help combat IC. Not sure it really works or if its a placebo effect. Anyhow I hope you get some relief soon as it sounds a horrible thing to suffer with. X
Hi Kim,
I am sorry you are having this type of pain, it’s seems to make my Fibro worse also. I was diagnosed about 8 years by a Uro/Gyn who specializes in IC. This diagnoses was made after I had went through a complete hysterectomy for endometriosis (which I did have) however my pain continued. This is not a easy thing to diagnose so it is really important to see a doctor who knows what they are looking for, generally it requires a doctor to look inside your bladder and fill it with water (cystocopy hyrdrodistension ) to see if your bladder has tiny red spots all over it. I believe I’m correct when I say this is the only way to get the diagnoses, but I am not a doctor so please find one who can help you get a diagnoses and then start you on the right treatment. There are several things they can try, some help for some people better than others. I have found that diet is very important and drinking only water is the best thing you can do. Also, watch for red and yellow dyes, that will make me cry with pain. Also, I think cranberry juice is good for a bladder infection but, it is one to avoid with IC. Again, this is something you really want to get a good doctor to help you with, the pain is intense and you need a supportive doctor when you are in a flare. I just went back into a flare about 6 months ago and it has been a struggle dealing with the pain day and day out, but on a happier note I was in remission for about 4 years before that. Please keep us posted or feel free to send me a personal note if I can answer any more questions, Hugs Madison 13
Hey Kimberlynn, I am so sorry that you are in pain. I too have had issues with IBS and Menstrual cycle problems. I have had to have a total hysterectomy and bilateral oophorectomy (both my ovaries were removed) because I had cysts the size of melons on my ovaries. I also had endometriosis. Before I knew what was going on with me, I was getting frequent UTI's which I was treating with Macrobid and Pyridium (prescription version of OTC AVO) it turns your urine orange, but it stops the feeling of urgency and burning. Cranberry juice also really helps. A lot of people say it doesn't but my doctor told me that the acid in the juice neutralizes the acid in the urine and of course drink a lot of water. I was then getting yeast infections because of the antibiotics so I had to go on diflucan but also eat yogurt with "live active cultures". That really helps with the yeast infections.
As for the back pain, it was constant. My periods were miserable, the cramping had me in the fetal position. Then after my period, the cramping wasn't as bad, but the back pain was still there. It felt kind of like cramping but I just though I was having plain old back pain. Then one day it got so bad I wound up in the ER, I was popping Advil like it was candy. That's when they found everything. I no longer have the back pain or the frequent UTI's or yeast infections. My constant lower back pain is also gone. I still have my FM pain, but that's not related. I'm not trying to scare you, I'm simply trying to say not to ignore your symptoms. Stay on top of it and go to the doctor and have everything checked out. Had I done that, I probably would not have had to have both of my ovaries removed and I wouldn't have been thrown into menopause at 34. Although I am not broken up over loosing my uterus. I feel liberated now that I don't have to deal with my periods now.
The intestinal issues that I have are mostly linked to my IBS. I take prescription limotil for it which is very effective for the intestinal cramps. I also take Imodium if I run out of Limotil. That is also effective for the cramping. As for the constipation, I only really got that when I had to take pain medication for the FM. I would just take a stool softener. Drinking apple juice also helps with constipation. I don't know why, but when my kids were constipated I always gave them apple juice (moms a nurse so that's what she told me to do with them) so I did it on myself and it worked.
Good luck with everything. I hope this helps some
Hi, KimberLynn! I was diagnosed with IC in 2003 & I know the pain is excruciating. I 100% agree with Val & Madison13. My urologist diagnosed me after having several of the above mentioned procedures to look inside of my bladder. I took Elmiron for 3 months but it did not help me. I had surgery December 2004 on my bladder & my GYN was also performing a hysterectomy at the same time my urologist was working on my bladder! They thought the weight of my uterus was aggravating the bladder issues. I went every week for bladder distillations for a whole year! It’s much better now. Main point is, if you do not have a urologist now then you should see one. My GYN worked with my urologist to determine the problem. Hope you feel much better soon.
HUGS from Deb
I do not have intersistial Cystitis, but I used to work with a physical therapist who did therapy for women who did suffer from the disease. I do not know what the actual therapy entailed, but it might be something you could look into. I had that kinda of pain and ended up having a hysterectomy, after the results of the dissection were returned it was shown that endometrial tissue had embedded into the muscle of the uterus and was flaring up every month causing really painful muscle cramps. Sadly, the only way to know if you have that kinda of issues is by removing the uterus. I have been very thankful I did so. Good luck.
I want to thank all of u who replied with ur thoughtful answers! gives me some ideas. Im just gonna have to be more assertive with my doc to do further testing to get an affirmative on the actual causes so I can use some of the suggestions you all have giving me. being that I am jobless and attending college fulltime, im on medi-cal which is very limited on options. there were only a few others I could sign up for as in pcps but they had no openings. so im stuck with who I have. and if there are specialty docs for the various possibly causes of my pain that u all have shared, id still have to go thru my pcp. county offices are a pain. they just want to throw meds at u. after he got reslts from cuture of my urine that it was bacteria-free...he called me back and told me to take myralax and just diet. He just thinks by what I told him that its possible it ibs and ic...but not a definitive answer. but yet he didn't pursue to do further testing, xrays etc to rule out things or get visuals etc. Just left me hanging on my own. And he led me to believe at the appointement that if no bacteria was found, that we would proceed with further steps. im just tossed to the side. And I cant afford to go to a specialist on my own. For a few year or so both my mother and grandmother(who is now deceased) thought it could be my female organs/cysts that are causing such issiues. my gram had gone through a lot with cysts and such and had a hysterectomy etc. my mom had some issues but no removal. My today still thinks this doc should look into my my female organs and such. I have always on and off had issues with my period, overbleeding etc. the birth control plls help regulate but I still have inconsistencies being on it. So Monday I will call that damn office again for them to look further into my condition.
Again, I would try some of the suggestions u all made, but I need a more definitive from that dum butt doc, so I know what to focus on. Thanks you all and its nice to have peeps to talk to about this....by the way my grandma also had fms.
I’ve had IC, fibro and to many others for most my life.
I’ve gone the natural route for IC.
The pelvic floor and bladder spasm, which is very painful.
Try magnesium. A lot of us walk around with depleted magnesium levels.
Magnesium helps with spasms and soreness.
Give it a try. It’s helped me tremendously
Sheri Hillis said:
I take AVO tablets which are available over the counter for my bladder pain. They are amazing. Also I've made a few rice socks. Take large men's white athletic socks and fill 3/4 with plain rice. Tie a knot on the end. Put in microwave about two minutes. These are super nice for back/neck pain. I'm sorry that you are suffering.
Is AVO and AZO, like Azo Standard, the same? If this is what you are talking about, a lot of pharmacies carry their brand of it and it is much less expensive. I know it's not really expensive to begin with, but any savings is a help. I know for a fact Rite aid, and CVS carry their own brand name version of this medication. It does help pain symptoms very much. It does however, only mask the pain, and does nothing to help the condition. It shouldn't be used in place of antibiotics. If symptoms warrant, you should see your physician asap. ;)