I Want the Pain to Stop

[Moonshadow]

For months, I have been in nearly constant pelvic pain. I was diagnosed with Interstitial Cystitis in June, and have stopped eating everything that is supposed to cause bladder pain. That means nothing acidic, no caffeine, no chocolate, no fruit (except pears and blueberries), no soy (difficult, because I'm vegan), no alcohol, no tomatoes, etc. I have been very careful, but the pain hasn't stopped.

I tried DMSO bladder treatments, which is administered through a catheter, and is very, very awful, they haven't helped. My doctor is sending me to the Mayo Clinic, because he doesn't know what else to do. At this point, I'm not even convinced that it's IC, that's causing all of my pain.

I have been taking Percocet, to try to relieve the pain, and that is becoming less and less effective. I am so tired of hurting. Even when I sleep, I'm in pain, and I feel it in my dreams.

I've been trying to keep going, through the pain, and do all of my normal stuff, but the pain is getting worse, and harder to ignore. The more active I am, the worse the pain becomes.

I've lost about 10 lbs., so far, and I only have about 5 more pounds to play with, before I am officially underweight.

I am so frustrated and tired.

 

[2quilt]

Rice milk? It's $1.69 at WholeFoods.
acupuncture?
Lots of water, no pineapple either as that is citrusy and acidic.
Can you put meal replacement powder in the blender and add blueberries and get your nutrition that way? Liquids are what I have to live on for gastroparesis. My GI tract does not move correctly. Did they test your urine for bacteria?
When I get a bladder infection, I live on cranberry juice.

 

[Dylan]

Hi Moonshadow,

I have read that pelvic pain can be related to the somatic symptoms of PTSD. Could it be coming in to play with this resistance, possibly? When I have physical issues that don't respond as if they are "just" physical, I usually suspect that there is something more to it...? If so, would hypnosis or non-dominant hand journaling help possibly? The book, "Women's Bodies, Women's Wisdom" really keyed me into the idea that physical symptoms and diseases are often ways that our bodies try to communicate with us. I don't know where you live, but Dr. Northrup (who wrote the book) still has a clinic that might be helpful. Also, you could look at going to a Naturopath. I was always skeptical of "alternative" medicine, but I went about a month ago and the herbs she suggested have helped me tremendously with my own emotional and physical issues.

Hey, nice to see another vegan! .....How about nuts and/or nut butters to increase fat? Are you getting enough nutrients (Fuhrman suggests 1 pound of raw and 1 pound of cooked veggies daily)? In addition to cranberries and blueberries, I've also read that bilberries are also very helpful for bladder issues.

Also, you may try posting on the Vegsource boards and see if anyone has more nutritional ideas....

-Dylan

 

[Moonshadow]

I've been drinking almond milk, and avoiding all citrus. There is no bacteria, it's not an infection. It's a breaking down of the lining of the bladder. Cranberry juice is highly acidic. It would be like an A-bomb in my bladder. Just thinking about it hurts.

I've been drinking tons of water, as it's the only thing that I know is safe (or should be). Other than that, shredded wheat w/ maple syrup and almond milk for breakfast and pasta w/ olive oil and mushrooms for dinner.

I want to try an elimination diet, to see what causes pain, but I need to get to a point of no pain, before I can see what causes pain.

 

[Moonshadow]

Thanks, Dylan. I ordered the book from the library. I have been very aware that my pelvic issues are likely due to the sexual abuse I suffered. I'm just not sure what to do about it. I don't know how to deal with the emotional issues, to try to alleviate my physical pain.

I've been trying to eat a lot of vegetables, but they're mostly cooked, and seasoned with herbs. I used to eat salads every day, but I can't have salad dressing anymore, so my raw vegetable intake has gone down.

It's very difficult to deal with the emotional pain, when the physical pain is so strong.

 

[kmm]

Moonshadow,

I wish you relief from this pain. Physical pain that will not let up, especially when combined with emotional pain, is more than anyone should have to deal with. I can only imagine...... I am amazed by your courage, strength, and how you are caring for yourself in the midst of all of this!

I have a torn disc and two bulging disks - back pain for almost 10 years. It just grates and grinds on you & leaves you with very little left to deal with anything else.....it's agonizing. It's worse when there's not a clear solution or a clear reason......

I, too, have pelvic pain.....mine has definite triggers - especially intimacy and times during the year/month when I am most triggered....... I wish I could offer something in this area......not really sure what to do with the physical stuff.........it seems like everyone (therapists, docs) has lots of "tools" if you are having panic attacks or visual flashbacks......whenever I mention bodily symptoms, they treat me like I have 3 heads & they're not sure what to do with me.........

I am looking into the possibility of finding someone that can do EMDR and/or accupuncture.......

Massages do help me - but I have to get them every week on a schedule for them to be effective. For me, the hot stone massages are best and most effective. Reflexology is really helpful too (and the reflexologist just moved out of state - so no more for me).......

Haven't really found much else..........a therapist suggested physically soothing things to me - warm showers, soft robes, scented lotions.......not really working for me, but maybe for you?