Survey says, still infected

10/13/2009 at 8:29 pm | Posted in Uncategorized | 5 Comments
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I went to the gyno last week to get a follow up on those long-lived, resistant infections I had all summer. I had been feeling a little off when I went in, but nothing major. The exam itself went as well as it could have, which is encouraging – I haven’t reset back to square one pain-wise. The gyno took some vaginal swabs & did a urine culture. She prefers to run samples off to labs instead of diagnosing patients on the spot, and that works better for me too – since my infections don’t always follow the typical course you frequently see described online, I don’t think I could be diagnosed on site, by sight alone. Not enough typical-for-an-infection discharge to go by. My self-reported symptoms aren’t always obvious enough to set off any major alarms either. And even if they were, even I would have to question whether it’s something else like the pelvic floor muscles acting up somehow or skin irritation.

Unfortunately the results of that exam are not so good. I still have the same infections I had all summer – Candida yeast & Gardenella bacteria.
I am now in Chronic territory. That is the exact word the gyno used to describe the infections at this point. Chronic Candida.
My urine culture came back clear though, so the UTI I had has been wiped. Well that’s one good thing I guess.

Actually, when I pressed the gyno for more information, she read some more detailed results back to me – the Gardenella is present, but in a small enough concentration so that, if I weren’t noticing symptoms I could probably go without treatment, especially since I’m not pregnant. Some doctors like to treat for Gardenella if it’s present at all, other doctors will leave it alone if it’s not causing any major problems for the patient. So the bacterial vaginosis is optional at this point. I still want to treat for it though since I had noticed some urethral discomfort with urination a few nights ago. Just in case something is crawling up there again…

It may be possible to leave asymptomatic yeast alone too, but the gyno definitely wants to treat for it and so do I. I’m not exactly asymptomatic right now. Mild symptoms, but I’m feeling something. Yeast can cause inflammation & inflammation is the last thing I need right now.

But since all summer I’ve had two infections at once, I can’t determine which of these culprits is responsible for the mild symptoms I am noticing. I can’t narrow it down.

I don’t think I can risk not treating these infections. I’ll probably be dealing with some residual vulvodynia & vaginismus long-term to begin with. I’m scared of backtracking… Let’s not add more vulvovaginal health risks to the mix.

I am now at the point where I forget what “Normal” feels like. How does that go again? It feels like “Nothing,” right?
Oo, I had it for awhile. I almost had it. I almost knew what “Normal” felt like, for a few months. Oo, so close.
Nobody write any posts about how great it is to have a healthy normal vagina for awhile or else I might – go into a jealous rage or feel self-conscious and disappointed in myself or something.

Wow these infections will not go down for good. I’m not certain if the infections are responding to medication and then coming back later, or if the medications I’ve been using aren’t strong enough to kill everything. I’ve already tried antibiotics & antifungals, and what I’m noticing with them is that, while symptoms tend to clear up while I’m using the medication, after I stop they come back. I’ve been using the medication exactly as directed, so I’m finishing off everything. But maybe the treatments aren’t long enough? Or the dose is too low?

I’ve been taking steps to avoid re-infecting myself. I have not had partnered sexual activity since February. I clean all my non-porus dilators & toys, and when there are still questions about the dilator’s cleanliness, I use a condom over them. But I also haven’t dilated in the last month, specifically because I was afraid of re-infecting myself. So it’s definitely not the dilators, they are out of the equation. I wipe front to back, and when I wash I use a very mild soap on my body & don’t get any near my vulva or vagina. I washed my clothes with vinegar in the rinse cycle for awhile (this can be used to remove mildew odors in laundry,) I even boiled my all-cotton (breathable) underwear at one point. I boiled my underwear. That was interesting to explain to the parents why their pots were filled with cooking fabric instead of cooking food. I get probiotics in my diet. I take cranberry pills & drink cranberry juice on a regular basis (it tastes bad plain.) I even take a little supplement called “Yeast Fighters,” which contains biotin & garlic, among other things. So what am I doing wrong?

So what’s left after eliminating other variables?
Just me…

I think there may be something wrong with my vaginal pH that’s making it easier for organisms to grow. I actually have pH strip paper but it’s not sensitive enough to tell me anything. Perhaps my menstrual cycle is throwing the pH balance off due to blood in my vaginal canal. I’ve been eating a lot of probiotic yogurt & keifer, but that’s all dairy products – could be lowering my pH. Which is ironic, since the reason I’m eating yogurt & keifer in the first place is because I need to get some lactobacillus bacteria in me, to help me fight off more vaginal infections. I’ve been taking probiotic capsules too, but obviously they aren’t doing me much good. I suppose I should acknowledge diet could be a factor here, but I am currently unwilling to change my diet to find out anyway.

It’s getting scary also because now I’ve had an acupuncturist (not my regular guy) ask me if I have diabetes, and I’ve had a general practitioner ask me if I have any autoimmune disorders. Both questions were in relation to the long-lived infections. The answer to both questions as far as I know is “No.” But then I remember that quite a few vulvodynia patients do report having other simultaneous pelvic problems like IC or IBS, or autoimmune disorders. Is my body changing before my very eyes? Or am I just being paranoid?

I reviewed the chapter on vulvovaginitis (infections) in Female Sexual Pain Disorders. It’s telling me some things I already knew as a pelvic pain patient, but new things as well. According to one table (15.2,) the UTI I had earlier could be related to BV after all, although the mechanism for that relationship is not explained. That’s interesting though.

Treatment wise, I’m running out of options here. Although I’m not feeling terrible discomfort, I don’t want to leave this untreated. I’m worried I could backtrack & feel acute vulvar pain again if this goes on much longer.

I’m not completely out of options… but I’ve already tried a prescription antifungal cream, oral fluconazole, oral flagyl (I don’t do well with the gel form of this,) cipro, and Levaquin. Short term, I will be using Flagyl 1 more time for this round of BV, and an antifungal cream (which thankfully I have some pain-free experience with.) Then I will be on a long-term oral antifungal regimen for 3 months. It probably sounds more hardcore than it actually is – I’ll just take 1 fluconazole once per month. (Why the doctor is having me space them so far apart is beyond my understanding, since I know it leaves the body after just a few days.)
So what happens if I do this long-term thing and I’m still not better?

I might have to start thinking about seeing a specialist about these infections. Hopefully it will not come down to that. But I’m thinking if it does go down that way, I have three options. I could, see an infectious disease expert locally (even though this isn’t necessarily infectious at all; you can be a virgin & have a yeast or bacterial infection.) This might be the cheapest option since I could see someone in my insurance network, but I’m not sure I’d be able to find someone well-versed in vaginal infections specifically. I could return to my old vulvovaginal specialist, which would cost more but that practice knows my history & is prepared to deal with chronic infections.
Or I could do something else. Don’t know what that something else is yet.

I know there are alternative treatments. Oh I know, no need to remind me, I’m fully aware. I know I haven’t tried inserting probiotic yogurt or capsules directly into my vagina. I haven’t tried an apple cider vinegar or a hydrogen peroxide douche. I haven’t tried inserting boric acid capsules. I actually looked for gentian violet a few months ago at the local pharmacies & natural/alternative food stores a few months ago, but I couldn’t find anyone who stocks it.
I know other at-home treatments exist. I know other women have used these at-home methods. I know I could probably even find instructions online. Even Female Sexual Pain Disorders acknowledges the value of boric acid capsules (101).

I asked my own gyno if she ever prescribed these alternative treatments like hydrogen peroxide douches or boric acid capsules to her other patients, and she said, “No,” so she doesn’t really do that. I’m not comfortable using those treatments alone.

I am already still doing acupuncture & chiropractic. Already doing that alternative therapy.

But can you understand why I am afraid of inserting strange objects into my vagina after so many years of problems with it? I’m not sure I could use these treatments if a doctor prescribed them. Even if the vaginismus isn’t a problem for me when I use an alternative treatment, I’m not sure I’d be able to overcome my own anxiety.

In the mean time, I want to go do something fun which, does not require the involvement of my vagina at all. I think I need to do something to de-stress. See a movie or do some traveling. Something to take my mind off of it.
I don’t know how easy that will be if I am leaking antifungal cream for the next few days and if I have to remember to take an antibiotic at the same time every day, but, I want a break from this.
No, actually, I don’t want a break from my vag even though it follows me around everywhere. I am trying to make peace with it. I want it to be happy & content & healthy. I don’t know how other people do that.

Back on the saddle again*

07/03/2009 at 6:43 pm | Posted in Uncategorized | Leave a comment
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Wow if I ever thought I’d be able to take a vacation from dilating for a few weeks, I was completely wrong. I’m really not going to be able to let up with this for the rest of my life am I?

I went to PT again this week. Since it has been a few days since I finished both medications for the vaginal infections, and I was feeling better, I felt ready to start up with the internal work again.

That was one of the more difficult internal work days I’ve had in a long time. Before the infections, I had been able to handle the largest dilator comfortably, and quite a bit of pressure on the tissues. It’s more uncomfortable now. I’m not reset back to zero, but I definitely fell back. No tearing or bleeding, and things were within my tolerable range, but just barely. I had to start off with one of the smaller sizes and I’m definitely not ready for the big one yet. I’m being paranoid about germs even though I washed my gear, so I’m insisting on covering the dilators with a condom for awhile. I probably don’t need to. They’re not made of porous materials and I don’t share them with anyone.

Once again I left wondering what, exactly, the biggest component of the discomfort was. Was that the vaginismus acting up? Definitely; the muscles were tensing & haven’t been worked much for a few weeks. Was some discomfort the residual vestibulitis? I don’t know but I hope not. That area of redness I noticed during the infection is better now but still not the same shade of pink as the rest of me. Could there still be some infection left? Maybe; although the sensation of intense heat is gone, and I’m not registering anything else out of the far-reaching realm of normal for me, my infections don’t like predictable textbook cases. HOW WOULD I KNOW??? If it looks like I’m shouting, it’s because I am. Not knowing is frustrating. I’m getting frustrated when I read comments online that talk about how women need to learn what normal is & what infection symptoms to look for. Mine’s not working like that.
Or maybe some discomfort is just due to me approaching my menses. I’m a bit low on some hormones.

This current discomfort is actually something I’m less pessimistic about. Right now I’m not as worried as I thought I would be. Since I’ve felt worse before, and the residual pain post-surgery responded well to PT and at-home pelvic floor & dilator exercises, I feel confident that I may be able to get the tissue supple again over time. The PT wants me to pick up with the dilators & at-home exercises again ASAP.
Of course only time will tell if my optimism is warranted.

I’m still disappointed though – I guess I won’t be able to take a break for more than a day or two for awhile. I was going so well too, I could skip 3 or 4 days without losing much ground. I was maintaining. But two weeks is just too much. I’m interpreting this difficulty with inserting things as a sign & a reminder that I am going to deal with this pelvic floor dysfunction, residual vulvodynia, vaginismus, for the rest of my life. It’s better than it was, no doubt. But some residual may be lurking under the surface long term.

*Sigh* what did I expect? I know vulvodynia is a chronic condition. Vaginismus is going to take a long time for me to address, too. I spent at least several years at least living with chronic vulvar pain. There’s a possibility that there may have been something going on longer, even before I became sexually active. It’s not going to go away overnight.

This could get awkward down the road. How am I going to do this if I have kids? I’ll need to maintain my exercises through pregnancy, certainly. But then what? I can see it now, the baby starts crying and mommy has to struggle to get up off the floor, clean herself off and pick up the baby. And it’s just going to be a mess. Or maybe mommy can shout at daddy and tell him to go pick up the baby, mommy’s in the middle of something. Or something is in the middle of mommy, as the case may be.

Then what if I have a major pain flare while I’m working and being a mom… I don’t think I want to think about that right now.

Welp. Looks like I’ve still got some work to do.

*Metaphorically speaking only. Yeah right like I’m ever going to ride on a normal saddle again. Guess I won’t be going horseback riding or biking in the mountains any time soon. I guess the sybian is out of the question for me too. Oh well, that’s all out of my price range anyway.

Nothing like an infection to knock me down a few pegs

07/02/2009 at 4:30 pm | Posted in Uncategorized | Leave a comment
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I was recently diagnosed with both a bacterial & yeast infection. This is the first known infection I’ve had since the surgery a few years ago. It will probably not be the last. Although I try to prevent infections, and I’m not having sexual relations with a partner right now, I still got sick. Where it all came from, I don’t know. Whether or not the meds worked to treat it, I don’t know that either. I finished the medication, an oral antibiotic for a week, then an insertible cream for 3 days.

I don’t know whether or not they worked.

As I said before, I have a wide range of normal. Sometimes I feel like I still don’t know what “Normal” really is, having lived with abnormal for so long. I’m probably not the best judge of what a “Normal” vagina & vulva feels like. Plus, so far my infections don’t cleave to the textbook definitions & symptoms. I prefer to return to the gyno for a follow up appointment in a few weeks so I can know for certain whether or not the “Coast is clear,” so to speak. I’ve had issues with bacterial vaginosis sticking around after using medication before. I don’t want that to happen again.

My thoughts about the medication: I am happy & surprised to report that the antifungal cream did not cause any noticeable negative side effects. I applied a small amount before using a full dose as a test patch and I did not react. Then I used the whole dose and still did not react. However I know that that does not necessarily mean it is safe for me to use the cream later on. You can develop a sensitivity to medications over time, the more you’re exposed to them. I must exercise caution in the future.
Using the cream was a strange experience. The applicator was skinnier than my smallest dilator. I would have actually been more physically comfortable inserting something wider & more tapered. The medicine applicator was so small it felt like it was poking me.
However the antibiotic was not without side effects on another part of my body which I would prefer to not get into here because I’m embarrassed about the side effect. I called my gynecologist about the side effect and apparently I’m the first patient of hers to experience this. Even though what I have going on now and am trying to self-treat at home is a pretty common & predictable side effect.

I wasn’t able to dilate (among other things) since I started feeling off. I was able to do my pelvic floor exercises, and get some Biofeedback done at physical therapy, but no internal work. No sense aggravating whatever’s in there with lubes & proddings.
Unfortunately I have fallen back on my Biofeedback strength. It’s still stronger & more consistent than it was when I first started though. I can still control the muscles. But not to the same degree as I could a few weeks ago. I’m not surprised. I wasn’t feeling well. How can I control the pelvic floor muscles & tell them it’s okay to relax when in my own conscious mind *I’m* not relaxed?

I was afraid. I still am.

The “What if’s” come to mind. What if the infections don’t respond to treatment? What if treatment makes it worse? What if it comes back? What if the gyno becomes visibly agitated having to deal with me repeatedly over a short span of time if I keep returning for help? What if the gyno thinks (and acts like) I’m wasting their time?
What if my toys & gear have been contaminated? What if this or a future infection causes a vulvodynia flare? What if the tissues are still inflamed and stay inflamed, like they did when the vestibulitis was at its worst? What if the first time I had pain-free intercourse a few months ago, was also the last?

I feel like there’s a lot at stake – I made some real, measurable progress over the last few years & I don’t want to backtrack. I don’t want to feel that pain again. Or the itching & irritation. Or the referred pain that ran down my leg…

Maybe I’m over thinking things again. I know that I have other intimate activities available to me and my partner if intercourse is taken off the table again. I know. I know it’s all meaningful & intimate. In my head, I know it.
Yet intercourse remains significant to me, perhaps because of its rarity & difficulty obtaining. I can never say “It’s not that important,” because I know it is. I worked really hard to open the door on this option. And even I can’t turn off all the mixed messages about sex in the media. Some days its easier than others to tune out the media & how much emphasis it puts on penis-in-vagina sex. Other days, the messages break through and I hear them, and below the messages I see the tendrils of patriarchal, intercourse-centric culture forming the words. I see it… but I still hear it. Sometimes the words stick to me and I feel their weight pulling me down into insecurity.

How do I maintain a balance between this one act’s personal significance and all other activities I can engage in with my partner? How do I calm my frayed nerves & *know* that life will go on?

How will I cope if, down the lines, things really start detonating with age? What if something happens health-wise that goes beyond whether or not I can have intercourse? Something bigger, something more life-altering… something I can’t roll back the clock on.

Coincidentally there were some comments at a sex therapist’s blog that address what’s going on in my mind. The comments resonated with me more than the posts themselves. I’m still feeling turned off to the idea of sex therapy for me personally, and I’m not jiving with what I’m reading between the blog’s lines. I’m hoping I’ve been exposed to enough interesting ideas & am open minded enough so that I won’t need sex therapy down the road.

It started with someone who’s actually been there, articulating what it’s like to be the partner in a relationship where one person has a chronic illness or disability that affects (among other things) their sex life. And then another comment. That’s a real possibility. It’s a possibility for anyone. It’s relatively simple to talk about sex but it can be so much harder in practice to execute. I can’t forget that.

I saw a glimpse of my own sexual mortality in this infection. I may be living on borrowed time here. The redness, the discomfort… knowing something isn’t quite right. I went through it already. Is that how the beginning of the end shall be, perhaps months, years, or decades from now? Was this infection really just an infection, a common bug that lots of people get from time to time, no big deal? Or was it something more significant, something, a premonition of things to come…

Or maybe everything will work out better than expected.
Maybe the medication worked just perfectly fine and everything will be okay. Maybe now that I’ve experienced this, I’ll be better prepared to handle future problems.

But I tend towards pessimism.
It’s harder for me to remain optimistic when things aren’t going exactly to plan. It’s easier for me to be optimistic when it is least important for me to do so. When I need hope the most, is when it’s hardest for me to find it. I don’t mean to. It’s part of my personality. It’s a form of self-preservation. Bracing myself against a potentially bleak future.

I like video games. I like comics. Why am I bringing this up here on a feminism-FSD forum in a seemingly unrelated post? Sometimes, these silly games and pictures contain The Answer. Or The Question. I conclude with this statement because the creators of Penny Arcade put it best…

Why do I continue forward even though  I already know how the game is going to end?

I never said I didn’t struggle emotionally, mentally, physically. I never said it was easy.

Dealing with a dreaded infection

06/20/2009 at 2:50 pm | Posted in Uncategorized | 1 Comment
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It is difficult for me to determine when something is genuinely wrong with my vulva & vagina.

I have a pretty broad range of what “Normal” feels like. Whether or not this range is broader than that of the average female-bodied person, I do not know. I’ve experienced painful sex and may continue have run-ins with it for the rest of my life – although my hope & goal is that this will become increasingly rare & manageable. I’ve dealt with long-term vulvar itching. I know I struggle to control my pelvic floor muscles & that if they are left to their own devices, they tend to constrict & tighten.

TMI follows… Continue Reading Dealing with a dreaded infection…

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