Interstitial cystitis?

[Butterfly89]

With or without endometriosis? Does anyone else have this? I am going in to the fertility doc. soon to get some testing done for endo, but I have already been diagnosed by a urologist with IC, by ruling out everything else, as well has having all the classic symptoms.

It's interfering with my life so much and I haven't found any triggers (besides onions) and it usually comes every month up to a week before AF and lasts up to a week after AF. It's sooo frustrating, not to mention painful. Sometimes its at other times of the month, but not usually. The past year and a half its gotten crazy bad, I think triggered by starting BDing. <_< TMI, but anyway, lol. Luckily BDing does NOT aggravate it for me! But I think it brought it on in the first place... as well as an actual UTI caused by latex allergy.

I've been reading about it for at least a month, but haven't found any remedies that seem to work. Baking soda in water helps a little, but I'd literally have to drink it 5 times a day and the sodium is too dangerous, I think. Apple cider vinegar made it so much worse, so that idea isn't for me!

I could honestly go to the bathroom every 2 minutes. I usually just have to try to distract myself as best as possible and can usually cut it down to once an hour, but at work this is hard, not to mention suspicious, lol. My last two jobs I've had bosses complain about my frequent bathroom stops. And its embarrassing. I've even had to miss work some days because of the lower abdominal pain which makes me nauseous, exhausted, and.. well, in pain. It's making me so frustrated and irritable. Some other symptoms I have are cramping/bloating feelings, itchiness/soreness around urethra (sorry graphic lol but mentionable, and its def not an STI or infection, been tested a hundred times and OH is very healthy), and sometimes a feverish feeling without an actual fever.

Plus I'm afraid its the reason we haven't conceived for 5+months... I read sometimes its linked to infertility, and often goes hand-in-hand with endo. I already have been tentatively diagnosed with IBS in the past as well, so everything I've read tells me I am a typical case.

Is there anything that works for you? What helps reduce acid in the body? I have been on acid reducers and proton-pump inhibitors for stomach ulcers in the past, but I found them intolerable because they caused bloating and soreness in my stomach. I also take oxybutynin as needed to reduce the spasms and urge, but it causes such bad dry skin, dry mouth, eyes, ears, nose, etc. and I get heat rash after taking it for more than 2 days. I would prefer to find a natural remedy, but I'm up for any suggestions!

Also is there anything to aid fertility for people with endo and like illnesses, other than surgery? I will get surgery/lap if needed, but I will not let them burn anything on my uterus or ovaries... Scar tissue scares me... I believe there HAS to be another answer.

 

[Stacy1109]

When did IC start for you? Ive never had any bladder problems up until I had my iud taken out my obgyn sent me to a urologist and they did a ultra sound and another procedure and they said my bladder looks 100 percent normal. But like two weeks out of the month I have pressure dwn there that makes me have to pee every 10 mins but this all happened after I had the Mirena taken out I haven't had any problems since sep 14 so I dk, but the last time I seen my urologist she said I could have endometeriois,but she call back if my symptoms came back

 

[Butterfly89]

When did IC start for you? Ive never had any bladder problems up until I had my iud taken out my obgyn sent me to a urologist and they did a ultra sound and another procedure and they said my bladder looks 100 percent normal. But like two weeks out of the month I have pressure dwn there that makes me have to pee every 10 mins but this all happened after I had the Mirena taken out I haven't had any problems since sep 14 so I dk, but the last time I seen my urologist she said I could have endometeriois,but she call back if my symptoms came back

Well, I had an isolated event as a small child where I had a UTI from holding in urine for too long and it ended up backed into my kidneys, then after the symptoms continued for a few weeks without actual infection, but it seemed to heal. Then a little over a year ago, I started getting what they kept diagnosing as UTIs or suspected bacterial infections, then they would find no actual bacteria present. This is kind of TMI but it was after becoming "active" for the first time.

I have taken at least 5 or 6 rounds of different antibiotics and now found out they were pointless. I saw a urologist and he ruled out structural problems and retention, and gave me some pills and said if the pills work, its likely IC, but could still be endometriosis. The only test left was to do a "voiding cytoscope" where they stick a catheter cam up the urethra and make you pee, but I had to do that when I was 4 and it was so painful and humiliating, I will never do it again... >_< But he said its kind of unnecessary since basically, I have one or the other or both.

Then he said he can't tell me if I have endo so to go to a gyn. So I have to wait for a referral from my doctor for 3 to 5 more months. But I made an appt at the fertility clinic and hopefully they can help me with this too.

Eeh, now I'm scared to get an IC. I was going to get the Paragard/copper coil put in soon.

 

[Bean66]

Hi,

Have a read of this re: IC and pelvic floor dysfunction.

 

[Butterfly89]

Oh, thanks for sharing hun, but that doesn't apply to me. My doctor assessed my pelvic muscles and found that they are actually the strongest she has ever seen and she has been a doctor for a long time. ^^ She actually told me the "extra bone" I kept feeling like I had in my lower abdomen is actually rock hard muscle. o.o

I started doing kegels at 9 or 10 years old. Thanks to Oprah for that. xD I just have IC/IBS/endo(likely), it's to due with inflammation, possibly linked to my extremely high acid levels but of course you can't change that permanently.

 

[obtenerunsixx]

Hi, I also have interstitial cystitis AND endometriosis AND vulvar vestibulitis (pain at the vaginal opening; this has been resolved in the last year by, ironically, having lots of sex). I think I started getting minimal urethral pain in 2006/2007, but it got much worse in May 2008 one day when I, like you, held my urine for a little too long. When I finally peed, it was extremely painful. That seemed to be the turning point.

For some reason, I feel like my pain (particularly the bladder pain/urgency) is always worse from December to March, with the two worst months being January and February. I don't know why this is. But what's strange is that I went to a conference in Washington, D.C., in February of both 2010 and 2011. Both times I started getting terrible bladder pain/urgency the night I boarded the bus to D.C. Very weird.

Anyway, I feel like I always have mild bladder and/or urethral pain, but that it tends to spike randomly, and the spikes vary in intensity. Last fall and this passed summer I got flares. I thought they were actual UTIs both times, but the antibiotics didn't really help. And the doctors always found blood and white blood cells in my urine, but not bacteria. That's characteristic of IC. I don't think eating acidic foods immediately correlates with my pain, but if I eat/drink trigger foods (especially alcohol) consistently for a few weeks, I'll get a flare. So now I only drink water (definitely stay away from soda, orange juice, cranberry juice, alcohol, etc.) and try to follow the IC diet list. It's very helpful. I can't post the link, but type in "IC diet" into Google and it's the first result.

I try to stay relaxed with treating my IC, mostly focusing on diet. A year or so ago I was more of a hypochondriac and I felt my symptoms (endo, IC, VV) were worse. I try to ignore them as best as I can. They don't tend to be in line with my menstrual cycle. Usually I'll have some bladder or urethral symptoms and they pass after a few hours. Sometimes I can go days without having any bad symptoms. I went to a urologist last year who thought I had overactive bladder, so he put me on Vesicare for a month. It didn't help me at all and I knew I had IC and told him this. I just don't have any faith in doctors. If my pain gets significantly worse, then I might seek a doctor's counsel.

Also, apart from diet, you might benefit from alternative therapies. My OH is really into meditation and when I had my horrible flare during the summer, he did a meditation/energy healing on me for about 10 or so minutes. A few hours later, I noticed my pain was gone. It stayed gone for the next day and then came back the day after that (due to poor diet). He did another a meditation which worked again and then after that, my pain subsided and went away for good. There is a lot more to this type of healing than many realize. I rid myself of horrible period cramps for about eight hours by doing a meditation myself.

One more thing: Did you ever have kidney reflux as a child? I did and my mom stopped bringing me to the doctor for it when I was around 10 because they said it mostly cleared up. I just wonder if there is any connection to IC.

 

[Butterfly89]

I had it, as far as I know, only that one time when I was four. Other than that, I don't think so.. I'm sure I would've known. But I wonder too... maybe the damage in childhood sets you up for it later in life? I'm not sure!

I have had about 12 episodes of flare ups in less than a year... It's quite severe. I know its not anxiety because no matter what mood I'm in, the pain can be just as bad and the symptoms, etc. I am trying to work on putting my mind off of it, but I still have missed two days of work this month from it, not including doctor's appointments. And most days my work is really suffering because I can't pay attention like usual from the pain and running to the bathroom every hour or so.

It's frustrating. I hope they find an answer soon to give everyone with IC. I don't know if some people realize how bad it can be. I also have migraines, chronic fatigue, and the IBS as mentioned like many people with IC also have. I don't think its because we are hypochondriacs or intolerant to pain, rather I have very high pain tolerance and am very patient, but I think its all connected. I think maybe inflammation, like I mentioned above. I hope they can find a cure for it, or at least a treatment other than instillation, because I will never get that done.. it sounds too inconvenient, painful, and unnatural.

I have tried yoga, alexander technique, and been to a reiki specialist to try to learn coping mechanisms and distraction, but sometimes its so painful I can't do anything but curl up in a ball and focus on breathing. And this isn't very good when you have a job and school work, lol.

 

[Bean66]

Hi,

Have a read of this re: IC and pelvic floor dysfunction.

You are probably right that it is not the cause of your problem but as a dded note. Muscles should be strong but supple not hard and can still be strong and dysfunctional.

I hope you get some relief soon.

 

[princess444]

my god its like lookin in the mirror i have endo and is although mine has calmed down since i got mid twenties, my teen years were blighted by the pain it was and is still somwtimes, i had all tests goin in a cystoscopy , laparoscopy, kidney dye, u name it, i took sodium citrate every day and antibiotics a low prolayxics , . the cysttits part has calmed but i suffer kidney infections now, those years of ic attacks were so bad my innume is rubbish, i feel for you, i left severAl jobs and people arent very sympathetic r they! my endo is so so at mo i want ttc, so see how that goes

 

[Butterfly89]

Aww, no way hun. I had a couple kidney infections too, yet they couldn't ever find bacteria. But it literally was every symptom and even diagnosed as that! Wow, its weird eh? To see others with exactly the same story. That tells me that there has to be an answer for all of us!

I started getting the pain around the time I got my period, maybe around a year before so I think the hormones do aggravate it.

I hear getting pregnant can help these conditions, who knows! I've heard both sides, but more good than bad. So good luck. ^_^

And nope, muscles function fine. OH assures me of that, LOL. And he never lies. He's quite outspoken. I think its more inflammatory/hormonal.

 

[obtenerunsixx]

Interstitial cystitis is present in a lot of people with endometriosis. I wonder if endometrial adhesions attach to the bladder, making it weaker. Most of the theories surrounding IC involve a weak bladder lining. The weak bladder lining could allow chemicals (most notably from acidic foods and drinks) to pass through it into the bladder itself, causing it to become irritated and inflamed. The inflammation then sends a signal to the brain that says, "I have to go pee!" even though you might not. That's why antidepressants are sometimes used to treat IC because they block that signal from reaching the brain. And maybe the endometriosis causes IC pain to become worse around your period because that's the time when endometriosis progresses, and it continues to wreck havoc on the bladder. I began having endometriosis pain first, and then started having IC pain as the endometriosis got worse. Also, I think the body's immune response definitely has something to do with this as well. The body attacks what it sees as foreign agents (either endometrial adhesions or urinary chemicals) and this causes further inflammation and pain.

Butterfly89- I forgot to mention: have you ever tried Elmiron, Elavil, or Lyrica? These are some of the popular prescription treatments for IC. I haven't tried any of them (not until my IC gets really, really bad), but I bet they would definitely benefit you. I'm not sure if they are sold where you live, but there might be an equivalent.

 

[Butterfly89]

Hmm, maybe. I tend to react badly to medications. I gained 40lbs on Zoloft which apparently rarely causes weight gain, according to my doctor. I was on it all my teenage years and I wonder if that's what kept my IC at bay for the most part, since it seemed to be fine all that time (though still had endo symptoms and abdo. pain).