Tuesday, May 23, 2017

Elmiron is working and I've become a crybaby

I'm back on Elmiron, the only med approved by the FDA to treat interstitial cystitis.  I'm one of the lucky people who sees an effect on my pain from Elmiron very early.  Within two weeks, my pain is lower.  Sometimes it takes people months to see a difference.

My pain often gets very low on Elmiron.  When I eat something bad, my pain shoots up, so I have greater incentive to eat well -- instead of feeling bad all the time, I now feel bad only after eating something that triggers my pain.

Which has made me into a crybaby.  When my pain goes up to what was before an ever-constant level 5 or more, I CAN'T BELIEVE HOW MUCH PAIN I'M IN!  How can anyone live this way????  This is ridiculous!!!  How am I supposed to move?  I need to stop.  This is an emergency.  I have to lie down.  I need ice.  I need painkillers.  Etc.

Which in turn gives me respect for the living I've done with this pain for more than ten years.  I got used to the pain being bad to the point where I didn't realize how bad it was.  It was bad!!!!  Wow!!!!!!!!!!!!!!!!!

That's all.

Saturday, November 5, 2016

How I got confirmation of, if it makes sense, PTSD

In September this year I got extremely depressed.  I started staying with my parents because I didn't feel safe alone.  I expected the depression to lift in a few days but it didn't.  Then a few weeks, but no.  So my therapist and I agreed I should do an intensive outpatient therapy program, group therapy for three hours Monday through Friday.  I've been doing that for a little over three weeks now.

I feel better.  I'm on a new med and I'm on higher doses of my old meds.  I've worked through a lot in therapy.  It's the kind of stuff any person could use but that you don't realize is missing until all your usual tools for getting through life are gone.  It's like we're all carrying around our lives in boxes, keeping everything together, and then you get depressed and those boxes disappear.  And you realize how disordered and imbalanced and incompetent we all are.  And you can't swap in new boxes because depression won't let you, so you have to figure out how to organize yourself and your life in a way that you can carry it all without a box.  If that makes sense.  That's the best I've got so far in explaining the intensive outpatient program.

My therapist thought some of my anxiety might be due to epilepsy or migraines because some of it seems neurological, not psychological -- feeling like I'm lying down when I'm not, for example.  There were times when I literally felt like I didn't have a head.  But my psychiatrist and the psychiatrist who oversees IOP agree that these moments, which include moments of extreme terror, are not neurological but are instead dissociation, derealization, depersonalization.

I never understood my psychiatrist's terming this experience "dissociation."  To me, dissociation is the mind separating from the body in order to cope with trauma.  I have no trauma to point to.  So I said as much to the psychiatrist attached to the outpatient program, and he said there doesn't need to be a traumatic trigger -- sometimes the trigger is extreme anxiety.  But as we spoke about it, I came up with, "I don't know if this makes sense, but with the pain, I find I go through tiny little PTSD events, terrified of peeing, of setting the pain off, of" -- okay, I can't write this out now.  I need the compartment I'm in right now.

But the psychiatrist agreed with me.  I needed to hear that my PTSD explanation makes sense.

That my terror might be neurologically based was both frustrating -- another health problem -- and possible relief -- there's nothing inside me that will break from it; it is just an illusion.  That the terror is probably psychological is not the most welcome conclusion.  I do feel like the terror will break me someday.  It has, actually -- I spent a month confined to the house due to agoraphobia, unable even to get the mail because the world would start tipping sideways when I did.  To fear that it will break me again is normal, I tell myself.  But that doesn't allay my fear.

I wish I were better able to explain the continuous tiny PTSD the pain brings.  All I can say now is that I can't believe this is my life.  I'm staying with my parents because I don't want to see my future.  I had depression and anxiety before the pain, but I believe I would've stabilized and gotten better without the pain.  The pain is a monster.  It is trying to kill me.  I am trying to ignore it.  I'm doing it for the people I love because on a personal level, I can't defend this life.

I am safe.  I am okay.  I am in therapy five days a week and it is helping.  I'm focusing on the present because the future is blank.  I can't believe I've made it this far without collapsing.  It used to give me hope, a sense of pride, something or other to look at myself and see how strong I have been.  Now all of that doesn't matter.  What has it gotten me?  Here I sit, in pain.

Monday, May 16, 2016

Proven: I have interstitial cystitis

I have interstitial cystitis. A new doctor put me on Elmiron, an IC med, and my pain dips to a point where I can hardly tell it's there at the end of some days. Sometimes it dips below a 2 in the middle of the day. This has never, ever happened before. The closest I got was when I was able to control my diet at an insane level when I was in grad school seven years ago. I've been on Elmiron several weeks now and I've reached the point where I can blog about the improvement with almost complete confidence that I have interstitial cystitis.

I've always thought I had IC but I've never been able to get a diagnosis. Even urologists wouldn't diagnose me with it because I rarely have the typical urgency and frequency. But I believed I had it because food is the main variable that influences my pain. If my pain were neurological or muscular, food would not have such influence over it.

I went to a new doctor, a gynecologist, who put me on a topical steroid, an estrogen suppository, and Elmiron. The steroid, even compounded, made my skin bubble. The suppository -- she says it's impossible, but I had the most painful lead-up to my period that I've ever had. The acid burn that is usually contained to my vulva spread up my abdomen. I could hardly walk. Maybe that was coincidence, but my period is due tomorrow and my pain hasn't risen above a 5 yet in the lead-up, and it certainly hasn't spread. (5 is average.)

She's the first doctor, though, who thought I had enough of a chance of having interstitial cystitis that I might benefit from Elmiron. Why it took me nine and a half years to stumble across a doctor who would try me on an IC med, I have no idea. Telling her how much food influences my pain was all it took. Bam -- let's try Elmiron.

Today I saw a therapist who specializes in helping women with these kinds of issues. My doctor recommended I see him. I'm glad I did. I'm so angry. I feel like I had ten years cut right out of the middle of my life. I feel robbed. I feel empty. I don't even know what I need to address in therapy. My feelings are giant but vague.

One thing I learned today is that I have to come to terms with eating things that hurt me. Eating them knowing they might hurt me. Hurting myself. The Herculean charge of eating perfectly to appease my bladder, and failing at it.

I'd always fantasized about writing this post, the one where I have all the answers. I am not in the state I thought I'd be. I'm more depressed, more anxious than my baseline. My cat died at the end of March, but I think I'm depressed and anxious beyond the grief of losing her. I can't tell why. So I can't come here and celebrate. I came here to write to you who might need the answer I've found.

If my pain continues to recede, I'm going to go away for a week by myself and be alone with the knowledge that yes, the day did arrive.


Thursday, December 17, 2015

New pelvic pain article, best yet

My cousin linked me to this article about pelvic pain.  It is the best I've read yet on pelvic pain but reading about pelvic pain always stresses me out and now I'm having a minor panic attack.  Deep breaths...

So tired of this.  Meaningless to say "so tired" after more than nine years.  Amazing I can even feel that I'm tired of this.  I must remember what it's like not to be in pain all the time.

Sunday, November 8, 2015

Probiotics & Pelvic Pain

An anonymous commenter left the following comment on a post I wrote about the probiotic VSL #3:

<<

By the way I am male and have had similar issues from taking CytoFlora, which is a tincture of lysed probiotic bacteria. 

I have always had pelvic muscle tension, and it requires internal physical therapy (trigger point / myofascial release) to keep it under control. I overdosed on CytoFlora one day and could barely walk within two days. The effect persisted a long time until I saw the physical therapist. It has happened to me now three times over the years. I can't say I have ever come across anyone who knows why this can happen.

I think that the junction between the colon and the rectum, right at the second fold of the rectum, is connected to the pelvic floor in ways that the PT literature doesn't describe. I think that the colon is tense (due to some unknown reason related to how much probiotic you took - VSL3 is very strong stuff), but as it is involuntary, I think the symptoms of trigger points appear at the boundary of the involuntary and voluntary muscles, which is right there at the second fold (I think). That is my theory.

The funny thing is that for me, at a smaller dose CytoFlora is the only thing which actually reduced my pelvic muscle tension issues - yet at a larger dose it magnified them considerably.

I would say if anyone offers you a specific cause as to what's happening in your colon why you are experiencing pelvic muscle tension from VSL3, take it with a grain of salt. They probably have no idea what is going on in there.

>>

This is the first good explanation I've heard for the increased pain I had when taking VSL #3.  And if it or something like it is at work in pelvic pain, the implications are huge.  If pelvic floor muscles are sensitive to the state of the rectum, it could explain why so many who have pelvic pain find that food is a major pain trigger.  It could explain why pelvic pain and IBS have such a high rate of comorbidity.  It could even explain why pelvic pain often goes up before or with menstruation.

The rolling theory (in my head, anyway) has been that IBS and other digestive issues can influence pelvic pain either by causing the individual to clench pelvic muscles in response to digestion or by referring pain to the pelvis (maybe via some kind of regional inflammation).  But if there's a specific point in the digestive tract that tenses under certain circumstances and pulls at the pelvic floor involuntarily, that would explain why it's been virtually impossible for many of us to identify the exact cause of our pelvic pain.

This makes me want to go back and do some crotch dieting again.  Nothing I've tried so far took away my pain in any certain way.  The best I did was on a simple diet which I apparently managed last in 2009.....!  Oh my god!  It is time to BELIEVE again!  I need to read my own blog more often. :/

I also want a colonoscopy.  I want a colonoscopy, people!

Friday, October 2, 2015

Happy birthday, vulvodynia

This is how living with vulvodynia feels


I'm finding it hard to deal with vulvodynia without blogging. I live alone so I can't turn and say OW when I want to be heard. I can't talk about it openly most of the time when I'm not alone because I'm rarely in private, one-on-one situations. When I am, silence comes over me about it. I don't want to complain, I don't want to make it all about me, I don't want to bore, I can't explain it all so it makes sense, etc. And I absolutely suck at reaching out for support. I'm introverted, and I've always been a private person in some respects. You can't tell by how my cooch is all over this blog, I know.

So I'm feeling more and more alone inside it because I'm not talking about it anywhere. I have to keep blogging or keep sharing in some way because this silence is exhausting. I'm starting to feel like I don't exist.

Monday, September 21, 2015

Tinker's Creek

I am a girl. Appropriately, I throw like one.

I pick up rocks along Tinker's Creek and throw them upriver. I try to get them past a large rock in the rapids, "the goal." I make one goal. Appropriately, it is with the smallest rock.

I trace in my throw the shape of my brother paused in a photograph. He is a boy throwing a rock into a lake, his hand at the top of its arch. "Look how perfect," my mother said to me as we looked at the photo. The form, the balance of his body. I try that now at 35.

I pick up handful after handful of rocks. Appropriately, I am wearing a skirt. With each bend, I moon the steep wall of rock that is the river's opposite shore. I throw the small rocks at the big rock. I am getting better, but still some slip from my hand straight into the river. The wall lets loose some of itself, more gravel for the riverbed.

I switch to skipping rocks. The sun is low. The big rocks make big splashes, make rainbows in the air.

I sing Taps---

Day is done
Gone the sun
From the lakes
From the hills
From the sky
All is well
Safely rest
God is nigh

---but the river carries on at the same rate, at the same volume. Had a human this fervor, she would be sick. But the river, it is at rest. This is it at its point of rest.