What is Interstitial Cystitis?

What is Interstitial Cystitis?


Interstitial Cystitis is the worst bladder infection you've ever had, except no bacteria is present, there is no cure, many foods make it worse, and separate treatments have maybe 1/3 of a chance of helping. The only true "treatment" is treating the pain, as its usually the only thing that will work. Even patients who've had their bladders removed still experience the pain. Doctors don't know what causes it or how to get rid of it but have many theories.



Need to find a doctor in your area who actually knows how to deal with IC humanely? Click here.

These are the new guidelines for diagnosing IC. If your doctor isn't using these then I suggest you find a new one who keeps up to date.

You can find the IC safe collaborated recipes between me and my step dad here.

Thursday, January 19, 2012

Holding back Birth Control until getting a pap smear is not informed consent

I had my annual exam this week. I call it the "rape exam" as I'm forced to do it to receive birth control which helps my bladder pain and also to hold a healthy relationship. It reminds me of the movie Brave Heart when you got married the mayor or whatever had first rights to your new wife. In order for me to be together with my boyfriend of 7 years and sole provider of monetary support I have to deal with this every year even though I do not consent to the reasoning behind it and that no other country except us, Canada, and Australia does this. Planned Parenthood is too far away for me to do the HOPE program. People in the U.K. gawk when they hear how women are treated over here in regards to birth control.

One of my friends got pregnant trying to avoid the exam while I ordered my pills online, much to the horror of all my other "friends" who I am no longer close to due to their betrayal of my (correct) feelings.

http://std.about.com/u/ua/stdsinthemedia/papocpua.htm
http://www.epigee.org/guide/medfaq.html
http://www.uhs.umich.edu/papsmears
http://feministsforchoice.com/birth-control-held-hostage.htm
http://feministsforchoice.com/pap-smears-save-lives.htm
http://www.aafp.org/online/en/home/clinical/exam/cervicalcancer.html


So much conflicting information. The last one even calls people like me "silly." I have IC. I know to do my own research, advocate for myself, and how to make educated choices for the autonomy of my body. No physician I have been to has taken my sexual history seriously. I say I'm still with my boyfriend from high school, we were both virgins, and we have never had that form of cancer in my family. They ignore me and force me in the stirrups. Its either that or I lose my relationship and the relief it brings for my IC.

Even if a result came back abnormal I wouldn't seek "treatment" as the body usually wins out. If I had two abnormal results then perhaps I would, but, as an IC patient, anything down there hurts.

My favorite quote comes from a comment from feministsforchocie:

To make an informed decision and truly have a choice one must have all of the facts. I absolutely support the idea that women and men see their doctor at regular intervals and discuss their health openly and honestly, which includes doctors informing women of the high false positive rate of pap smears, letting women know that a pelvic exam is not necessarily required every year, and instead of having a blanket requirement that all women need yearly pap and pelvic exams, doctors should customize the yearly exam to fit the needs of each individual. How many more women would go see the gyno more often if they knew that they would only be subjected to testing that was necessary for them personally?

What bothers me the most is the idea that women must be required to see the doctor because they cannot be trusted to take care of their health themselves. The attitude is condescending and disrespectful. While screening for disease is beneficial, it is a choice and women should be trusted to make the decision for themselves.


Indeed, I am refused INFORMED consent. I am informed, I just am not allowed to make a decision regardless of my education. The test is from prehistoric times, and many women are now speaking about against it. It SHOULD be a choice, not mandatory.

I think men should be required to have a HPV test before they can receive Viagra.

But yes, (GASP) all that is medically necessary is a blood pressure check for birth control. There is no rule saying you must have a pap for the pill, but unfortunately the medical community allows doctors to keep giving women false information. These doctors believe it themselves.

Doctors should be allowed to recommend it, but never hold it and my relationship hostage.

They even screen women without a cervix.

Some sites say you need one every year, some say every two years, and I've heard every five years. No one is out there to give a definite answer. Its like IC. Its also sad that I'm looking for .gov info, but all the top results are BLOGS. I highly encourage you to view Dr. Sherman's blog on my blog roll list to the right.

My doctor told me there's no way out of getting a pap for birth control. I knew better. I knew I could get it from Planned Parenthood, I could get it from the internet, or I could go to Mexico because its sold OTC.

http://www.acog.org/~/media/For%20Patients/faq150.ashx

I really hate the phrasing here. "You may have this done to you," rather than "Your doctor may suggest this be done, but its your choice." This sort of phrasing is what sent me into five years of panic attacks. I didn't have my first pap until 22 because I was in so much pain from IC I just didn't care anymore. Reading the website causes alone causes me emotional pain due to my fears and over protectiveness of my body brought on my an overabundance of doctor exams and procedures done to me as a child. Reading an article like this as a teen really makes you feel helpless.

Yet the guidelines have changed, and this blogger complains about it: http://msmagazine.com/blog/blog/2010/05/13/to-pap-smear-or-not-to-smear-thats-the-question/

Funny thing is.. the links to the changes are gone now! Like I said, you can't find information to inform yourself anywhere except through blogs, which is sickening.

Wikipedia is the only one that mentions the differences between nations: http://en.wikipedia.org/wiki/Pap_test

I read one story about a Korean girl who married an American and when she came here she was horrified by the requirement to have a pap done to receive BC, so every year she returns home to get her prescription.

In the UK these are the guidelines: http://cancerhelp.cancerresearchuk.org/type/cervical-cancer/about/cervical-cancer-screening

Every 5 years. I'd be okay with that, if you know, I was in the risk group. But being in a monogamous relationship since high school and no family history of it makes it sound like a useless, humiliating test.

Yet, the doctors don't listen. They don't want informed patients. Perhaps, following the guidelines set by the UK, I'd be a lot less stressed around doctors.

http://www.owningpink.com/2009/11/20/new-pap-smear-guidelines-why-the-holistic-health-of-women-is-in-jeopardy

OH boy more conflicting information! The only important thing I can see out of ANY OF THIS is to get a pap smear when you feel you need one. Yet, the doctors won't listen.

A lawsuit can be made, but, as I like this doctor even if she's been corrupted by the evil bi*ch who left me in a room crying and softly rocking due to my anxieties over the pap because I demanded to speak to her rather than the male medical student and she evidently forgot all about me in there, I won't shove my weight around. She believed me when I told her I had IC. She gave me pain relief from it while I worked my courage to find the right IC doctor for me. She holds my loyalty for that, but I desperately wish she as well as other gynecological providers would tell their patients EVERYTHING including risks and pros and cons depend on each INDIVIDUAL as we do not all share the same experiences or sex lives.

One friend who was molested as a child held hers off until 30 but her doctor understood. Is the only way to gain bodily autonomy to lie? She wasn't lying, but for the rest of us? I wasn't raped or molested, but I was violated "down there" by a male doctor when I was five. I say violated because I wanted a female since "boys aren't allowed there", my mom said nothing, she later confessed this was because decades ago when she spoke out her doctors screamed at her.

What have we done to ourselves, women?

9 comments:

  1. Good for you to stand up for yourself and to inform yourself.

    A pelvic exam feels like rape. I have never gone to a physician for the purpose of a pelvic exam. Rather, I am pressured into having one before my own health concerns are looked into. So, against my wishes I am made to strip, spread my legs, endure a light shining on my most intimate parts, submit to digital penetration followed by cold metal that spreads my vagina open, and then hold still for scraping, poking and prodding.

    If this is not abusive enough, I have had one physician who did not provide a gown or any type of covering but left me completely naked during the exam. A different physician years later inserted a finger and asked me to "squeeze his finger". Then when the speculum was inserted and dilated I felt something repeatedly touching the walls of my vagina and I suspected he was inserting his penis.

    In addition to putting women at risk of further sexual abuse and humiliation, the rush to get into our vaginas is taking away any kind of holistic health care. Every physician I have gone to does not seem at all concerned with my general health. It's all about laying back, opening my legs, and closing my mouth.

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    1. I can't agree enough. Sadly I have one scheduled for next week because I have no choice. IC is a pelvic disease, and if they can't rule out other "pelvic problems" then I don't get my pain meds. My doctor is a female. What sickens me the most are females forcing other females into this. Society in general looks down on any woman who doesn't get the "well woman" exam and until that stops our treatment won't stop but no one, not even feminists, will even discuss this issue with me. And yes, the only name I will call it by is "the rape exam."

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  2. I feel terribly sorry for American women - coercion is abuse, pure and simple. What is this obsession with routine pelvic exams? They're not even recommended here at any age.
    The pap test is unacceptable to me - that's why I spent a lot of time in the Medical Library on campus back in about 1978... I wanted real information and to know what risk I was accepting... I didn't have the confidence to challenge doctors back then and in those days these exams and a pap test were "required" for the Pill, so that was out for me.

    It also irked me that we were told we must or should test, we apparently had no say in the matter and the insults, if we didn't test we were immature, uneducated, reckless and irresponsible.
    I was shocked when I got to the facts...over the years I've watched the distress, pain, damage and humiliation this testing has caused to so many women around me. I'm now 54 and have never had a pap test, as a low risk woman my risk of cc is near zero while the lifetime risk of referral for colposcopy and biopsy, almost all false positives is a whopping 77%, even higher in the States, the risks were too high for me.

    All of this damage is acceptable to the medical profession and others if we save a few women....the reality is we could have saved more with evidence based screening and spared a lot of women from over-treatment. We have a right to protect our healthy bodies from harm.
    We make decisions every day and take responsibility for those decisions, yet others decide we should test and they accept risk on our behalf and we live with the ugly fall out. Our bodily privacy and dignity is dismissed as unimportant...how often do we hear...women need to get used to these exams? Rubbish....
    Most of this fear, distress, pain and damage was avoidable in responsible hands, evidence based screening focuses on what's best for women. The Finns have had a 6-7 pap test program, 5 yearly from 30 to 60 since the 1960s...they have the lowest rates of cc in the world and send far fewer women for unnecessary procedures and biopsies. The Dutch have the same program, but will shortly move to a new program, 5 hrHPV primary triage tests offered at ages 30,35,40,50 and 60 and only the roughly 5% who are HPV positive and at risk will be offered a 5 yearly pap test. The vast majority of women are HPV negative, not at risk and will be offered the HPV primary triage program and they are already using a self test device, the Delphi Screener. (also being used in Italy, Singapore, Malaysia and elsewhere)
    This will save more lives, save money and spare huge numbers of not-at-risk women from a lifetime of pointless pap testing and the risk of over-treatment. (and the harms...cervical damage can mean miscarriages, premature babies, c-sections etc)
    Young women don't benefit from pap testing, but produce the most false positives. Countries that test those under 30 have the same number of cases and deaths in young women as countries who don't screen, so testing is risk for no benefit. HPV primary testing is not recommended either as 40% would test positive, almost all are false positives, by age 30 only 5% are HPV positive, it is this fairly small number of women who can benefit from pap testing.
    HPV primary testing should stand alone, the American practice of doing pap tests and HPV tests on all women is unnecessary and leads to confusion and over-investigation.
    The Dutch program gives women the information they need...am I even at risk? Why would a HPV negative woman want to have a lifetime of unnecessary pap testing with the risk of over-treatment?
    HPV negative women who are confidently monogamous or no longer sexually active can forget all further testing. If anyone would like references, drop over at Blogcritics and unnecessary pap tests...
    HPV Today, Edition 24, sets out the new Dutch program...registration is free.
    Delphi Bioscience website provides info on the self testing HPV device.

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    1. Thank you for your reply. I do know that you can report your physician for requiring the exam to get the pill. I had emailed The American Congress of Obstetricians and Gynecologists to ask if and where to report doctors doing this and they gave me a link to do so. I forget what the link was, but they can easily be reached via email and give the link to anyone interested as well. I think nothing will change until we raise hell about it. We can't depend on those "just grin and bear it" types.

      I hope anyone reading this will take actions to do so. Perhaps later I'll dig up the link and do a blog post on it.

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  3. "HPV primary testing is not recommended either as 40% would test positive, almost all are false positives, by age 30 only 5% are HPV positive"

    Sorry, that should read, "almost all are transient and harmless infections that will clear within a year or two" by age 30 only 5% are HPV positive and at risk...
    Elizabeth (Aust)

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  4. I agree that sometimes what you read from research scares you even more. There are a lot of conflicting statements because people have different experiences, and I fear how it might be like for me. It also depends on how people phrased their statements. That makes me hold back from going through most of my medical examinations. However, if it really is a must that I go, (without being forced) I just think that maybe it wouldn't be too bad, or that it is just for a while and it would be good for my health after all.

    Chelsea Leis

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  5. In this case, it's best to consult doctor's advice.

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    1. Its best to consult guidelines and ask hard questions to multiple doctors since answers change depending on which part of the country or which country you live in. If something sounds funny, ask multiple sources. Some doctors are hard set in their ways. Sort of like how now its suddenly a bad idea to get an episomy. A few years back all birthing mothers were encouraged to have one. Things change with research, not all doctors keep up to date, and its YOUR job to be aware.

      The American Congress of Obstetricians and Gynecologists is a good place to start: http://www.acog.org/About%20ACOG/Announcements/New%20Cervical%20Cancer%20Screening%20Recommendations.aspx

      Some doctors want to screen girls as soon as they turn 18 which the ACOG disagrees with, and most that I know down here insist on yearly paps when the guidelines clearly state every three years.

      Back in the 60s you were encouraged not to ask questions and times have changed to focus on patient-based medicine. I'm not inclined to fall back five decades.

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I encourage open discussion. There is a lot for us to learn from each other.