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Living with a Chronic, incurable condition.

CallingAllAngels

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Crazyaboutdogs Proficient

Crazyaboutdogs

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I am so sorry to hear about this. It doesn't sound very pleasant. Over time you will adjust to living with it..it will never be pleasant but you will find a way to adjust. I remember when you were posting a little while ago you were drinking quite a bit of alcohol. I hope you have reduced or even eliminated alcohol consumption because that will likely make you symptoms worse. I also remember you were having a lot of stress in your relationship. Are you still with him..if so, has the relationship improved? Relationship stress or any stress for that matter, will likely exacerbate your symptoms..so you should find ways to reduce your level of stress.

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CallingAllAngels Contributor

CallingAllAngels

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I am so sorry to hear about this. It doesn't sound very pleasant. Over time you will adjust to living with it..it will never be pleasant but you will find a way to adjust. I remember when you were posting a little while ago you were drinking quite a bit of alcohol. I hope you have reduced or even eliminated alcohol consumption because that will likely make you symptoms worse. I also remember you were having a lot of stress in your relationship. Are you still with him..if so, has the relationship improved? Relationship stress or any stress for that matter, will likely exacerbate your symptoms..so you should find ways to reduce your level of stress.

 

I have quit drinking, but I still live with my boyfriend.......

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CallingAllAngels Contributor

CallingAllAngels

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A lot of insurance companies don't cover acupuncture (some do as long as it's needed for medical reasons approved by your doctor) but honestly for the money it's worth every penny. My wife sees one on a regular basis and though we live a very healthy lifestyle from eating and going for walks and being active, I've noticed a tremendous difference with her energy after giving birth to our daughter. She has spine/back issues as well as other symptoms that she gets treated once a week.

 

I would call around to see if the acupuncturist knows how to treat your IC. I'm sure most would know but you also don't want a practitioner that's not experienced in the field either. I hope you feel better and hopefully it will make a difference

 

Does your wife have IC?

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tiredofvampires Proficient

tiredofvampires

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Oh, Allie!! I'm so sorry you're dealing with this miserable condition. Yes, I know what it is -- IC is totally disruptive to your lifestyle because of the having to go to the bathroom all the time, the sleep loss from having to go during the night, and then just 'round-the-clock pain that never goes away (not to mention the painful sex, as that will irritate an already irritable bladder). I don't have it *knock on wood*, or I should say, it hasn't been diagnosed, but I'm very familiar with it because I have a related (in some women) chronic pelvic condition called vulvodynia (more specifically vulvar vestibulitis -- which is also inflammatory in nature). It's even more rare than IC (or underdiagnosed), but it's something I've had all my adult life involving pain in the vulva (as the name suggests -- yeah, you can't talk about this without TMI [which is one reason no one talks about it and patients feel alone.]) Lots of women with my diagnosis also have overlapping IC, as all the mucous membranes seem to get involved with whatever is causing the immune response to behave in this way, in this area. I'm one of the "lucky" ones in that I don't seem to have developed IC yet, but I do have a kind of frequency often that mimics it, and I get weird little flares (not now, but when I was intimate) from time to time in my urinary tract, where I just know it's very sensitive. But on a regular basis, it's mostly just a needing to pee often, which I can correlate to being nervous or stressed. My bladder doesn't hurt, it just seems I have to go often, at times.

 

So I fully appreciate what you're going through. I have more than one chronic diagnosis/illness -- the main other one being an all-over pain condition, fibromyalgia (also found to overlap my vulvodynia diagnosis), and this involves much more of my body, systemically, then just one localized area. But for this PARTICULAR area, I've often asked myself, if I had the choice to make, if I could get rid of one....even though fibromyalgia affects a person's whole body in a variety of ways with pain affecting many areas...I might possibly have to pick getting rid of the vulvodynia. I have had both for over 20 years, and after all this time I can talk about fibromyalgia and all that it's done to my life and my psyche with some level of straighforwardness...but the stuff "down there"...makes me cry if you get me talking enough. It never fails. Pain in that spot, all the time is not just a quality of life issue. It's a deep psychological matter. Pelvic pain.

 

So yes, that old adage that if you have your health, you have everything is true. Well. True a lot anyway.

 

So I'm so with you on the toll this takes. How long since you've been diagnosed? How long have you had the symptoms?

 

There are support groups and some wonderful websites with tons of articles for you to access (for a while, a long while at one point, my ob/gyn and I didn't know if I had this, so I was cast about researching.) I'll try to go find those websites to post, when I can get back to this. Can you locate a support group that your doctor might recommend?

 

I have not heard of the medication you're on, but what about topical DMSO? I've heard that really helps a lot, for some. I am a bit loathe to have a catheter in me, and I think that can cause trouble of its own, but I hear the DMSO infusions do help. Maybe your medication will be less invasive with the same outcome.

 

In the meantime, smoking and drinking will DEFINITELY affect your bladder and make it more irritable. So stopping both of these could mean some very noticeable improvement. I know how hard it is to kick a habit, but for the sake of our bodies when there is something chronic going on, we've got to do our part in this.

 

There are also dietary things that might help you as well. Spicey foods, acid foods -- basically anything you wouldn't eat or drink with an ulcer, you don't want reaching your bladder either. If you google IC and diet, you'll find a lot on this, as well as the websites dedicated to IC patients and support.

 

One other thing I would highly recommend you look into is a line of aloe vera products that is quality-tested by many rigorous standards, that has actually done research (independently reviewed, too) on the benefits of aloe vera on the bladder. This company actually markets to women with IC, though aloe vera has many health benefits. I have taken it for stomach problems as well as for the burning pain of vulvodynia, and I have to say it's a pretty incredible plant. It has various chemical components that have tissue-healing properties. But there are lots of products on the market, some with preservatives (you don't want that in your bladder) or they are watered down, and I like this product's reputation as well as the research behind it, and how they prepare the product. I'm certainly not plugging them here for any other reason except that they have a special interest in IC relief. If I was diagnosed with IC, I would take the maximal dose they recommend (aloe vera is very safe, btw), and see what happens. But stay on it for a few months, at least to start. Relief might come much sooner.

 

So have a look around:

 

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Again, my heart goes out to you for the kind of chronic thing this is...anything chronic just wears you down. But with some lifestyle changes and commitment to yourself, and making sure you pay attention to what bothers your bladder most with diet, and something that might help soothe it, you have a chance at feeling a lot better.

 

((hugs))

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Clabs Rookie

Clabs

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Hi there Allie

 

Nice to hear from you but so wish it was under better circumstances - but you HAVE been missed.

 

I don't know about your condition but it sounds truly awful.

 

Are there any specialised forums with people who are going through the same condition I wonder? I am gonna have a look.

 

Keep your chin up darling (((((HUGS)))))

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tiredofvampires Proficient

tiredofvampires

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Oh yes, another vote here for trying acupuncture, but not just acupuncture -- get a practitioner who also is an herbalist. Because there are many, many herbal combinations that experienced practitioners use and from my experience, Chinese Medicine is one of the most sophisticated and helpful modalities there is. You have to keep it up (at least, get tune-ups and possibly stay on the herbs), which can cost a lot...but it's one of the best routes you could take.

 

Edit: I'm so glad to see so many replies, here, girl!! I haven't read them all yet, but it's good to know you're not alone! When I posted ages ago about my condition, I got 3 posts. It's so hard to have a difficult-to-treat condition!

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CallingAllAngels Contributor

CallingAllAngels

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Hi there Allie

 

Nice to hear from you but so wish it was under better circumstances - but you HAVE been missed.

 

I don't know about your condition but it sounds truly awful.

 

Are there any specialised forums with people who are going through the same condition I wonder? I am gonna have a look.

 

Keep your chin up darling (((((HUGS)))))

 

Thank you.

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sidehop Proficient

sidehop

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Does your wife have IC?

 

No she doesn't but the treatments she gets are amazing. Depending on the treatment she gets both acupuncture and sometimes cupping for negative pressure massage.

 

Our acupuncturist has treated number of patients the last 20 years including animals. She once saved a dying horse that was about to be put down but knowing that the anatomy of a horse was similar to humans she tried acupuncture on her and to this day after 15 years the horse is alive and well

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Catdancer Collaborator

Catdancer

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Also, call your local hospitals and see if there is a support group. This helped my mom some. Although one that we went to, wasnt alot of help, but then we found another one that was great. I actually got my mom doing tai chi as one of the members in the group taught a tai chi class specifically for those with fibromyalgia.

 

See if there is any kind of support group. Even if it's just for general chronic illness. If IC is rare, you may not find one specifically for that, but the group do help and they may introduce you to other opportunities to meet people and feel social, like a real person again. this is what my mom says...she likes to feel like a real person again.

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tiredofvampires Proficient

tiredofvampires

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TOV...THANK YOU! I am SO SORRY you have a similiar condition...it truly is a living hell. Thanks for that link...I will check it out.

 

I'm with you....I would go to the ends of the earth to rid myself of this condition. The discouragment is, at times, just overwhelming......

 

BIG hugs to you....

 

Yes, it can be very overwhelming. It's one thing to have something painful and hard to live with, but it's another whole layer to feel it's some private "dirty" secret you carry everywhere (at least, that's how my condition has affected me, because these are private areas and matters you don't just tell someone easily about, like if you had arthritis.) I can't even begin to express how profoundly it's affected me in all ways, but there have been many times it made me feel suicidal. And completely isolated. Thinking, "No one knows how this feels."

 

While I was posting, I missed a lot of info on the thread, so sorry for repeating questions already asked...

 

HUGE hugs to you, there is hope, and strength in numbers, and I do know women who have this but have it under control...there are a lot of avenues to explore. And congrats on quitting the drinking! (just read that now). Excellent work.

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tiredofvampires Proficient

tiredofvampires

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I JUST found this site yesterday...it's not as easy to navigate as ENA but I did join.

 

I read a lot of the posts and found most of them to be very discouraging.

 

That's one problem with online support groups...even though they have good info, you hear the worst stories, and it's always very grim.

 

One reason I prefer ENA.

 

But you have to go in thinking I will glean what I can and leave the rest.

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