Tuesday, October 11, 2011

Hannah's Story: Success with Yeast Treatment (Guest Post)

I get occasional emails from readers who are looking for support or who just want to share their stories with someone who also has pelvic pain.  The most recent email I received, from a woman I'll call "Hannah," dovetails nicely with my last post, in which I discussed my failed probiotics experiment.  Hannah's story is a much more encouraging one than mine, so I asked her if I could share it with you, and I'm so happy she agreed.  What follows is Hannah's story, in her own words.

If you'd like to share your story through my blog, or if you'd like to write a guest post about a pelvic-pain topic, please email me at madpeachblog [a] gmail.

Hannah's Story

My vulvodynia story basically started after I began having regular sex about 10 years ago. Soon afterwards I started to have recurrent thrush infections and sex was ALWAYS painful. Even when I treated the thrush, the pain, redness and irritation didn't seem to go away entirely. Sex hurt and I was left with a burning feeling for up to an hour afterwards. About eighteen months later I had a pap smear which identified CIN1 and HPV cells. CIN1 is low grade abnormality which needed to be monitored and eventually cleared itself without needing treatment. The vulvodynia and thrush infections continued, even when my partner used thrush treatments as well.

After a few years of this I also began to have bacterial infections and was mixing antibiotics and thrush treatments and not getting any better, in fact I was getting worse. Treatment would provide a few days of relief before the symptoms reappeared. I had countless swabs taken. Many times they would come back with thrush or bacterial infections but just as often the swabs would come back clear even though my bits were red raw, inflamed and hurt to even touch.

Most doctors would tell me the only treatment for the thrush was over-the-counter thrush treatments and to keep using them. One doctor listened to me carefully describing all the symptoms I'd noticed and prescribed me a low-dose antidepressant for vulvodynia – just like Charlotte in 'Sex in the City'. Things didn’t improve. Another doctor prescribed me steroid cream which only aggravated the symptoms.

All the irritation and infections led to me getting two Bartholin's cysts - one either side. I had to have one of them marsupialized after it grew so big I couldn’t sit down properly. I still have one cyst but it isn't causing me problems.

Because of the vulvodynia and infections, I had to give up using tampons as they were painful to insert and remove and seemed to increase the chance of a thrush infection. I had to stop eating yoghurt (especially natural varieties), bread, citrus fruits & pineapple juice. One time a large piece of skin peeled off my nether regions after eating too much citrus, it simply made my urine too acidic for my own skin to handle. I avoided exercise which would make me sweat unless I could shower straight away and had difficulty riding a bike due to the discomfort. And obviously, I avoided sex as much as I could.

I should also note that over this time I was also suffering from chronic fatigue that has even made working full-time difficult and ruined my social life. The chronic fatigue was from glandular fever, CMV and Barmah forest infections. My immune system was completely battered and worn out.

Eventually I came across an article that said thrush infections can clear up without treatment. That was when I stopped using treatments for the thrush and bacteria. I stayed away from things I knew made the vulvodynia worse and stopped treatments. Surprisingly it seemed to help. I had gotten to the point where treatments were causing as much, if not more, irritation that the mysterious cause itself.

Since I first started experiencing vulvodynia there have only been two times I can remember that I have experienced relief from my symptoms. The first was after a major cold sore attack (on my mouth) and I was prescribed anti-viral drugs. There were one or two months were I was symptom free before the pain and irritation returned. I should note here that I do not have genital herpes, I have been tested countless times and don’t experience blistering, but the drugs must have helped my immune system or something.

The next time I had relief from symptoms was during the course of Gardasil - a vaccination against HPV. For some reason my symptoms would disappear within days of the shot and then return before the next shot was due (Gardasil is a three-shot treatment over a number of months). When I realised the connection I began to think I had some sort of virus that was causing all the issues but as I’ve said, nothing had ever been detected before.

When I found out I was pregnant, apart from the usual joys and fears, I was worried about whether I would pass something onto my child during childbirth as well as how my bits would cope with the trauma of childbirth while they were already irritated. Thankfully I delivered a healthy child naturally with the help of an epidural and didn’t even need stitching afterwards.

My healthy child was diagnosed with dairy intolerance and suspected reflux at eight weeks. She also had a case of oral thrush even earlier than that from which I developed nipple thrush. Coincidence? Perhaps. But seriously! Also, the vulvodynia was present throughout my pregnancy and after.

Only a few months ago I went to the naturopath for my daughters intolerances. The naturopath prescribed me a probiotic: Bioceuticals SB Floractiv. Most probiotic tablets contain bacteria but this one contains a yeast: Saccharomyces cerevisiae (boulardii). This particular yeast can create ‘killer toxins’ that are safe for humans but deadly to other forms of yeast. I took one tablet a day for a few weeks and only experienced some minor constipation which was relieved by drinking plenty of water and adding psyllium husks to my breakfast cereal. All my symptoms have disappeared and six months later I am still waiting for a relapse. But the best part is I’m finally having sex and enjoying it. “IT” finally feels the way Hollywood tells us it’s supposed to feel.

NOTE: I really really hope that sharing my story helps you in some way. Apart from the Floractiv there have been other changes that I’ve made which have helped both the vulvodynia and chronic fatigue. Drink plenty of water; add psyllium husks to your diet; cut down on dairy foods, sugar and anything that is processed; no caffeine (I’m super sensitive to its effects); no alcohol; use plenty of lubrication when having sex, too much is better than not enough; go and pee straight after sex, if it hurts then pee in the shower as the water will dilute the urine; if you do need to use a thrush treatment, use a low dose cream over a longer period of time instead of a pessary; get enough sleep, ‘enough’ is a different amount for everyone. 

Saturday, October 8, 2011

So, are probiotics evil?

Ever since I did a lot-lot-lot of reading about vulvodynia and digestive problems a few years ago, I've been coveting VSL #3.  It's a heavy-duty probiotic used for a range of digestive problems, including IBS, Crohn's, and colitis.

You can get it over the counter, which I did, but the manufacturer recommends seeing a doctor because it's so powerful.  (Much cheaper to try it myself.)  It has about 110 billion live bacteria per capsule, compared to 5 billion in Fem-Dophilus and 50 billion in Ultimate Flora Vaginal Support, probiotics I had tried out before VSL #3.

The recommended dose of VSL #3 for IBS is lower than for other problems -- I think it's 2-4 capsules per day.  I started off with one capsule per day, expecting to experience something explosive within a few days.  I didn't, so I inched my way up to two capsules, then three or four over the course of a month.

Early on in this trial, I woke up with what felt like a UTI: bad burning centralized around the urethra that gets much, much worse upon peeing.  I bombed my urinary tract with Cystex, cranberries, blueberries, and water, and decided to wait it out.

I waited for one week, then two.  Finally, since I hadn't died yet, I figured I didn't have a UTI and that my vulvodynia was flaring instead.

The pain was very similar to the pain I had last winter, when I was sitting all the time and stressed out about personal problems.  The pain was also similar to how my pre-period pain feels sometimes, so I thought maybe I was having a month of odd hormones.

As I went up on the VSL #3, the pain got worse.  Sitting, walking, and peeing became hellish.  I spent a lot of time lying in bed trying not to move.  I took lots of Neurontin and Naproxen.  At work, the pain just got worse and worse the more I walked around, and I'd hardly be able to sit down by the time my shift ended.

As I looked back over the month, I couldn't think of a single thing I was doing differently.  It took me quite a bit of thought to realize that the only thing that had changed in my routine was that I'd started taking VSL #3.  Really, who would think that probiotics are causing them coochie pain?!

A few days before my period, I skipped a day of VSL #3, and my pain was much better.  Then I tried taking only one or two capsules, but my pain got worse again.  I stopped the probiotic altogether, and my pain actually went DOWN for the couple days before my period started.

The one benefit I think I've seen from taking VSL #3 is that my cooch isn't hovering on the yeasty side of things anymore.  But I don't know that I'll ever find out if it could help me more -- the pain was some of the worst I've experienced, and VSL #3 is one of the only things that's caused me that level of pain, along with antibiotics and too much sitting.

I don't know what to make of this.  Did my urine become really acidic?  If so, why did the pain get worse when I moved or sat and not just when I peed?  The only digestive change I saw was that I got MORE backed up, and I finally started pooping regularly once I went off the VSL #3.  Is it an allergy?  Do my bacteria and the VSL intruders just not get along?

I've read a lot about "yeast die-off symptoms" and other symptoms from changing one's diet from bad to good.  So if the pain was a side-effect of a "cleanse"...why was it so similar to antibiotic pain?!  Why didn't I get the same pain when I went vegan or used other probiotics or took weekly doses of Diflucan?  If I was experiencing a "cleanse," how long would the pain last?  Can I hold my breath that long?

This experiment is particularly frustrating because I know if I took it to a doctor, his eyes would glaze over and he'd equivocate because he wouldn't have an answer and wouldn't be willing to help me find one.  I have pre-emptive frustration with the doctor I tell this to.  Which might not be any doctor.

There are so many theories out there.  A woman claims that X cured her.  Another woman, Y.  Z, A, B, C...  I know all of our bodies are different, but I have a hard time believing that there are so many versions of vulvodynia.  I'd think that for a given set of symptoms, the possible causes would top out at like 4.  The more I think about it, the more frustrated I get, so I've taken to not thinking about it at all.