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.

Thursday, July 9, 2015

Signing off

The hair that fell out of my head from all the steroid shots is back. When it's down, it's in cute little curls, like Audrey Tautou minus the face. But it doesn't stay down. It mostly does this.

It looks like the wind is blowing, but I promise you, it needs no wind.

There's been no change in pain since I started the IBS med.  But I am only taking 2 pills a day right now.  I can take up to 4 per day but they have to be 6 hours apart which goes against the recommended daily allowance of 8 hours of sleep per night so I've been writing to Stephen Hawking about how we need better math.

I quit my desk job to go back to serving full-time.  I've been thinking about going back to serving for over a year.  It never made financial sense.  I had very little breathing room in my budget and a lot of debt, student-loan debt from a graduate degree I never finished and credit-card debt from car repairs and medical expenses.  I got a weekend job at a restaurant back in August and funneled all my extra money toward my debt, which alleviated a lot of stress.

But in late winter I started funneling all my extra money toward my savings.  My office's situation seemed tenuous.  Then my cat got sick.  Hundreds of dollars were flying out of my pocket to figure out what was wrong with her.  So I quit my day job.

While I could manufacture 7,000 reasons why I had to leave my office job because my cat was sick, the real reason is that it just didn't feel right to stay.  I had been working seven days a week between the two jobs.  My office job was never going to be a career for me, and I was staying there because I was too scared to make a leap back to full-time serving.  That fear fell away when I didn't know whether I was going to lose my cat.  When I was waking up multiple times a night to get to her with something disposable before she puked.  Everything fell away.

I took my cat to a second vet after an initial diagnosis of hyperthyroidism because I had a feeling her normal vet wasn't being very thorough.  (A little birdie high-school-friend vet in Chicago wasn't convinced either.)  The new vet said, indeed, the first vet wasn't being very thorough ("stupid," she said).  She had me try to figure out why my cat was still puking on the thyroid med -- from the med itself, from the pill pocket she took with the med, etc.  When no changes I made seemed to work and my cat puked four times one morning and I had to work at the restaurant, my dad came over to cat sit and my vet met me that afternoon, on a Sunday when she was closed, to take blood to confirm that the main problem was still hyperthyroidism.  She gave me food for hyperthyroidism, told me to take my cat off the thyroid med completely, and gave me a med to treat nausea if needed.

The first vet had told me there is no dietary remedy for hyperthyroidism.  As this blog has shown...

doctors vary.

Well, puke puke puke, I started giving my cat the nausea med every evening.  Somewhere in there was my last day at the office.  Then, at the vet's suggestion (via email; very modern, this senior citizen), I kept my cat on the med until it ran out.  It's been a few days off the nausea med and of course it's scary to say it, but she hasn't been puking.  And she's gaining weight.  Her face has filled back out (which I can apparently tell despite all the fur).  Her appetite and behavior never changed, so it was as if I was the only one going through all the craziness and she was just puke, eat, puke, eat, run around, jump, I'm a cat, puke, eat, birdies!, birdies!, snooze, purr -- it was so strange.  It's still strange.  I put her food next to my bed so I can monitor her and it stinks to high heaven but it's a delight to see her eat.  A gorgeous sight, like that Cure song says.

It gives me a lot of respect for people who take care of others hand and foot, like my grandma did with my grandpa.  She did essentially what I'm doing for my cat except she did it for years and years and years and years and years and my grandpa lost almost all of his mobility over that time.  He stopped even noticing the human equivalent of birdies! at some point, and it all turned into snooze.  With it came dementia, in which my grandma sometimes became his mother.  In which it sometimes seemed he was dreaming, the house growing floors around him, the Ohio River right outside the door.  I can't imagine what it's like to watch your life partner decline like that, to be the one to force him to take his pills, make sure he eats, weigh him back down to reality, all functions of a nurse and very few of a wife.  But her hand smoothing his hair down, one finger bent from arthritis -- the wife.

I'm still looking for a second job, and I still have to figure out a new medical plan (via the Obamacare marketplace).  And right now, I don't ever want to see a pelvic pain doctor again.  I am so, so, so, so over it.  I am so done.  I am so done that I'm surprised I haven't broken all of my possessions in the process of being HULK SMASH done.

I guess I feel like I'm fighting fate at this point and I need to give up.  Here I am after 8.75 years with pelvic pain, every theory I could muster, doctors I can't number, and treatments upon treatments that have nothing to do with one another.  I've taken jobs, quit jobs, gone off and on psych meds, been single, been in a relationship.  I've dwelt in all four houses asking questions, mental, physical, emotional, spiritual.  I've done more research than I can stomach.  I've been writing this blog for almost seven years.  I've made many friends through it, all invaluable.

I guess when I started this blog, I thought I was writing toward the end of the story.  Someday it would arrive.  I'd be all or mostly pain-free, and it'd be a big happy time for me and for people like me who needed the data I'd gathered.  But while I made some progress a few months ago with nerve blocks on the left side, all attempts to address the remaining pain have failed, and the remaining pain is no less a monster.  Now we're treating my pain as if it's coming from my intestines, which is a fine theory but nothing new.  It's cycle 3 or 4 of the gastrointestinal theory.

If I could, if I had the resources and the liberty, I'd go on a massive vision quest.  I'd hike the Appalachian Trail or drive to every state in the country or kayak from Pittsburgh to New Orleans.  I'd go long enough and with little enough to forget everything and find new eyes.  But right now, it doesn't make sense.

Instead, my gut is telling me to do the same quest while standing still.  And in order to do it, I have to let everything go.  I have to let hope hang by itself, unmoving.

I might be back.  Til then, here's to great storytelling.

Friday, June 19, 2015


When I was in college, I had EXPLOSIVE DIARRHEA.  When you're a freshman with explosive diarrhea living in a coed dorm,

1) You think explosive diarrhea is totally not abnormal and don't go to the doctor;
2) You instantaneously train yourself to hold in explosive diarrhea until
3) The floor is entirely quiet because, you convince yourself, everyone is at class or having quiet but distracting sex;
4) You go to the bathroom and explode diarrhea out of your body;
5) And after some time, you learn how to explode diarrhea out of your body without making a sound.

I was pooping out water.  I don't know why I didn't go to the doctor.

Over time, I figured out my diarrhea triggers: soft drinks, coffee, fried foods, fatty foods, beer, chocolate, candy, Wheat Thins.  I could eat a single Tootsie Roll and have to run to the bathroom.  I avoided those foods, and my bowel issues got better.  At some point I figured out I had irritable bowel syndrome.

By the time I was in my mid-twenties, my IBS had become mostly constipation.  I ate high-fiber cereal, and it only backed me up.  When my vulvodynia started in late 2006, my cousin Kim had already gone gluten-free as she and her son have celiac disease (here is her blog).  So about 7 months into vulvodynia, I stopped eating gluten.

It helped.  I started pooping better and my headaches went away.  I had been napping most days for hours, and that stopped too.  And my vulvodynia improved a smidge, probably because there was much less going on in my abdomen in general.

Today I saw Dr. Abdelmalak again.  I went in with no news to report.  For like two seconds after my last right-side genitofemoral block, my pain got better.  But it expanded again, and I decided I needed to hammer home with Dr. Abdelmalak my observation that food is a major contributor to my pain.

I thought Dr. Abdelmalak would suggest another nerve block or another attempt at cryoablating the nerve.  But instead, after some discussion and an examination of my abdomen (pressing it all over) and finding that my genitofemoral trigger points are not so bad right now, he decided to focus on IBS.


It was kind of strange.  We talked a lot about pressure to the lower abdomen -- how if I cough, sneeze, laugh, when my bladder fills, when I move, when my cat steps on my belly, how with any added pressure my pain gets much worse (when I am having a bout of laughter, I find myself contorting to relieve the normal downward punch of the laugh.  It's kind of awful, but laughter is so wonderful).  And from that conversation and a quick question about "alternating diarrhea and constipation" -- "Yes, I have IBS" -- he decided to put me on Bentyl, a med that treats IBS.  (As a side note, to add TMI to TMI, I can feel gas moving across my lower abdomen, centered over my pelvis, because it presses down and shoots my pain up.  Previous doctors have told me that my bowels don't go that low and that the constant pain I had in my lower left side while still eating gluten was my period, not my bowels.  Ha!  Screw you!  I know what my period feels like, dingbats!  I wish I could write condescending letters but I don't even remember the doctors' names.)

As in college, treating my IBS outside of avoiding food triggers has never occurred to me.  I knew about Bentyl, but I was always like, "That's for them."  I don't know who them is if it's not me.  Maybe my explosive diarrhea never seemed to be a serious problem -- after all, it wasn't dysentery.  And maybe not pooping for a week (or two when on Effexor) seemed more a medical marvel than something to address.

Edit: I remembered where I remembered Bentyl from.  I was actually prescribed it years ago by a gastroenterologist.  I wrote about it on here on a post with a nasty title.  It was at the outset of my Summer of Despair, after which I gave up on seeing doctors for a while.  I don't think I took any of it.  I think I was too deep into the mental state with which I chose the title of that post.

I'm to take Bentyl up to 4 times a day (every 6 hours), and Dr. A says it'll take a few weeks to start working.  Alongside Bentyl, he prescribed something I've always thought I should have -- a muscle relaxer.  OMG!  I'll only be able to take it at night, but I'm interested to see if it has any effect on my pain.

And then I walked away with my paperwork.  I've heard a few elderly people say, "Don't get old."  I always think, well, I'm already in pain all the time.  I get that more things happen in a person's later years, but I feel stuffed up on medication as it is.

And I have a hilarious list of issues, some of which seem redundant, some of which I thought I didn't have (manic-depressive NEC; I thought my doc and I decided it's not accurate for me, and I had to google NEC, and it seems like it's the same as NOS, not otherwise specified, but I have no idea why there's a different term and why it's "manic-depressive" and not "bipolar disorder," and my anxiety should be "MFing anxiety," not "anxiety state NOS"; listen up, I'll tell you how to specify it: it's a MFer) -- and some of which aren't listed (cluster headaches, arthritis of the hip, even IBS).

These lists made me laugh.  If I live out my natural lifespan, it'll be hilarious to see how long these get.  I think my grandpa was on 7,000 meds when he died and probably had 40,000 items on his "Problem List."  He died the day before his 92nd birthday.  Life accumulates.