Somehow, I'm doing fine! (And an interesting localr article in the paper on Pap smears)

It's late November and I'm still working with no fears. The weather dropped significantly earlier this week and I felt nothing. I really, really hope this means I'm done with this bout of IC.. I'd love to get out of retail, and it's the fear of not being able to work 8 hour shifts keeping me in part-time only positions. So far, so good!

Thanksgiving was kinda a letdown though. For obvious reasons. IC patients can't eat anything tasty (my own speculations..). A lot of my family don't want to bother with cooking something completely separate for me, so I just got some cheesy broccoli for my dinner.

Something interesting that did occur today, which I noticed at work, was an article in my local paper about birth control potentially becoming over the counter. The ACOG said that in their opinion birth control should be given over the counter. Is my fight finally over? Of course not. Doctors seem to take forever to get these memos.. and there were a few women defending the annual exams. One in particular enraged me enough to send my own letter to the editor. Basically, she worked for a gynecologist and said women would skip screening completely. Hm.. well.. I'm sorry ma'am, but we're adults and have the right to skip screenings that have nothing to do with the medication we're visiting to obtain. Of course, my letter was a lot more detailed and angrier than that. It read:

I had to throw my two cents in after reading Woods' response. There are many over-the-counter drugs patients shouldn't take if they have certain medical conditions and should consult a doctor prior, but the main retort I wanted to make was against the lines, "Plus, if you do not make them accountable for their annual exams by the pill prescription expiring, then you have another issue of missed Pap smears, thus more cervical cancer."

That's disgusting reasoning. It's okay to ransom birth control pills to make women go to exams? What about men and prostate exams? Should doctors withhold Viagra, high blood pressure medications, or anything of the like to "hold them accountable"? How about dentists? Should we hold other medications for ransom to make sure everyone gets their teeth checked? We're all adults here, please treat us like one and let us make our own informed decisions. A pap smear is unnecessary to obtain birth control, you are not told about the high incidence of abnormal results that resolve spontaneously, negative biopsies and colposcopies, and the pros and cons in general of this exam. Not to mention, on top of it all, the medication is withheld until a woman complies to the doctors demands. How is this informed consent?

As of March the ACOG also said annual Paps are unnecessary [http://www.acog.org/About%20ACOG/Announcements/New%20Cervical%20Cancer%20Screening%20Recommendations.aspx]. I for one would like to follow the guidelines and have one every 1 to 3 years based on my personal sexual history until I reach the age of 30 and then follow the recommendations for that age. Such decisions should take place through a discussion with your doctor about your own personal needs and medical history rather than a dictatorship that uses a one-size-fits-all approach. I've had college friends go without the pill due to their fear of the exam and end up pregnant. Women who have been abused in the past also may have great difficulty in going through with the exam, and many young teens opt to go without the pill due to their own fears of the exam. Friends in other states have never heard of the practice we have here of requiring a pelvic exam to get the pill and are shocked when I tell them about it.

Oh, and to finalize my viewpoint on this.. there are already ways around the annual exam while still obtaining the pill. Planned Parenthood runs a program called HOPE which provides the pill with no exam necessary. Likewise, just like with Viagra (and not recommended, but I'm throwing it out there anyway), the pill can be ordered legally from the internet with no hassle. I still see my doctor, but that is

Mourning for patient's rights

In the 50's and 60's you had to have a marriage license to get birth control. Your husband had to consent if you wanted your tubes tied because he might want more children. Doctors told you nothing about your body and some would completely refuse to fill the prescription. Abortion was done in Europe by rich women whereas the poor squatted over toilets or went to someone who wasn't a professional. This led to internal bleeding, perforated intestines, infection, and/or death. Then you could be tried for murder. This is reminiscent to what is going in on Michigan, and reminiscent of what I and other women in the backwater states must go through to get birth control. No amount of citations or sources (some from the American College of OB/GYNs) will change my doctor's mind on "mandatory" vaginal probing just to get the pill. I don't think we've moved that far ahead. What do I do? What do we do? How do social conservatives even have wives? How do you fight someone with so much more power than you? From National Womwn's Law Center:

"My grandmother was a nurse during the first half of the 20th century. She told me quite a few stories about being a woman in America during that time. She told me about being in nursing school and having the head nurse conduct evening meetings to quietly amend textbooks chosen by the male dean and board of regents. She gave me one of the medical book with the carefully lined through passages with penciled in corrections. As an adult I checked all of the corrections made by the head nurse regarding pre-natal and post-natal care of women and children. They were accurate and in use today. Grandma told me that men could not be countermanded and that doing so was as foolish as tilting with a windmill. In her day, women of knowledge and conviction simply worked around them as best they could for the most part or made changes through them. She gave me an example of a very powerful and influential obstetrics doctor she had the misfortune to work under in 1908 as a young nurse in school. He refused to use a solution of carbolic acid to cleanse his hands between post-delivery internal examinations of his patients (he was old school). He had a very high mortality rate among his patients as a result, she observed. She and the other nurses would systematically hide as many of his patient from him as they would during his rounds. Outrage and determination filled her voice while discussing it, even after 60 years. She told me of a number of cases of women forced to seek illegal abortions out of fear and desperation, living children that couldn’t be fed with health issues that couldn’t be addressed, and husbands that had died or deserted their families. She told me of other nurses and doctors that she knew that chose to perform illegal abortions on kitchen tables. She told me details on the countless cases of women she had cared for that had died or were “made barren” while attempting to end pregnancies. They were even beaten or shamed and ostracized from communities. I asked her if she had ever performed an abortion. She told me about a neighbor in the 1930’s that had sent one of her six children to my grandmother’s house one evening to fetch her. My grandmother found the woman in her bathtub covered by a blood soaked robe. The neighbor was weak and crying that her husband John was threatening to leave her and that she had had NO CHOICE. When she pulled the robe back, grandma found a coat hanger entangled in a towel partially bunched between the woman’s thighs along with perforated intestines that were distending from the woman’s vagina. You don’t need the gory details and this is not an uncommon occurrence in the 20th century. The woman survived. My grandmother ended the story with a recounting of how she had fixed the the little red wagon of the husband, John. She never suffered fools gladly and had balls of steal as did many women of her generation. I admired and was comforted by that as a child. She was pro-choice and pro-contraception without restrictions. She said that eventually the ERA would be passes because women and men of reason and compassion would prevail – but sadly, she feared, not in her day. She crossed over in 1978." -- Crystal Beach, FL, Behavior Analyst

I would have to drive two hours every time I need a refill of birth control (hard for an ICer, not to mention we need the hormones regardless of sexual activity or not -- most of us have problems having sex but according to certain people we're all sluts for just having this disease)or else face non-consensual, coerced, uninformed vaginal probing. Even if results came back abnormal for a year, I would do nothing about it for three years, the recommended screening schedule, and so THERE IS NO POINT, but my GP would still force it. I can't really get a straight answer on if annual exams are needed when you have IC. I know its generally a good idea, but I'm already sick, it hurts, and I've only had one sexual partner in my life (but don't worry, evidently I'm still a slut). My friends in California are shocked by this, their general practitioners don't do this there. So much difference from state-to-state. We're still having barriers to birth control.. we don't even need to look back at those stories, as horrid as they are, because we're still struggling for access while being able to make our own informed decisions. I also feel this issue is swept under the rug and that's what hurts the most in this women's right movement going on. No one questions their doctor, ever, and as an ICer I know that's the worst route you could ever take for your mental and physical well being. Another story on the site states of how one OB never washed his hands even though nurses begged and he had the highest mortality rate so they had to start hiding patients from him.

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?

I got an article published on the lovely blog of Dr. Joel Sherman on patient privacy

I've followed Dr. Sherman's blog for years, lurking. It's on a topic very close to me: medical ethics and privacy/patient concerns that aren't met. Just travel to the ICN which I have linked on my side bar and you can read the horror stories posted weekly by uninformed patients who have had doctors talk them into terrible things with minimal pain relief.

This is why this blog is here. To advocate. To help you research what you need, to fight back, and if need be, jump ship to another doctor who fits you better.

Dr. Sherman's blog is also linked on my side bar. The comments left under his posts are enough to make a book out of, and most relates to horror stories from patients of other disorders or those just trying to have a proper physical done.. and even those who are just trying to get hormonal birth control pills without being violated by an invasive test they feel is unnecessary. And yes, in most cases it is unnecessary, especially in the cases of virgins since the cancer is caused by a STD.

The link to the article is here.


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As for my personal IC updates last night was a terrible one. The temperature kept dropping and my bladder was burning with nothing inside. Nocturia is when a patient can't sleep through the night because of the need to constantly urinate. Usually this comes with older people who have IC and frequency issues whereas my symptoms are pain and urgency related. Well, I woke up quite early in severe pain and stumble to the bathroom. After voiding I felt much better and slept until 3 P.M. I woke up feeling okay. I'm afraid to visit the bathroom again because for me my symptoms chance with every bathroom use.

Dysfunctional Pharmacies are Dysfunctional (Can't get my meds), good and bad doctors, iatrophobia (fear of doctors),and forced pap smears

Alright, so I usually use a major retailer that is in just about every city and everyone knows the name of for my pharmacy needs. You know the one I'm talking about. Well, as you know, I was given CycloSPORINE (that's how the caps are written on the box, I don't get it either) under the hypothesis that IC may be an immune, not auto-immune, disorder in which my body is making too many cytokines -- the nasty pain and swelling causing part of the immune system (this is how my uro explained it) -- and they are causing IC in my bladder. However, it appears no one knows much about them since evidently researches can't decide what is a cytokine and what is a hormone.

Awesome, research guys. Why are we funding you again?

Anyway, CycloSPORINE is given to organ transplant patients so the immune system won't reject the organ, or in other words, it lowers the immune system's powers. If a patient who was an organ transplant recipient were unable to receive this medication, I'm no doctor, but, I would assume something bad would happen, right?

So why is my main, huge retailer always out of stock even though they said 3 weeks prior they were going to call in an order for me so I didn't have to worry but when I call in for the refill they say they can't get it in for another four days and I only have three days left thanks in part to insurance companies making you wait until the last minute and me assuming the retailer had kept their promise.

They didn't. I call another pharmacy in town, a very small one that might be nation wide, I have no idea, but its connected to a doctor's clinic and they say they don't usually carry it but they can have it in by tomorrow. This is awesome.

We pick it up the next day and evidently being a consumer there means you can get a free coffee or cappuccino, yay! Except.. I have IC and if I drink that I'd be urinating blood for the next 3 days, but my boyfriend did greatly enjoy the free coffee. Regardless, it's a cool gesture from a pharmacy.

Now, the problem.

I couldn't ask for a refill until the 30th which was yesterday... my uncle died, as previously posted, I was very preoccupied mentally, so assuming they were like the mahor retailer I held it off until today (a Saturday) assuming they had some sort of machine answering service for me to leave my refill order.

They had an answering service, but it was "only for emergencies." What is an emergency? I'm not a doctor. Is having a chronic disease that it potentially being helped greatly by this medicine which will run out Monday, New Year's day and likely a holiday so they will be close, an emergency? Or is being an organ transplant being in the same predicament an emergency? What if I have a very painful UTI and places like this were the only ones in my town? Is that an emergency?

I assume that in my current case, it is not an emergency as I would likely be alright missing a day or so since CycloSPORINE hasn't been FDA approved for IC or anything.

I will say that I am doing FAR better than I was last year. I could hardly leave my room or focus and had to quit school attendance 3 weeks early when the cold fronts hit.

I still feel awful when a cold front hits, and its fairly warm, so one is due, but I think I'm recovering faster? Or is it the pain meds? Is it the CycloSPORINE with the pain meds? I honestly couldn't give an answer, I just know I'm doing better. Maybe the weather's just being a lot gentler this year.

I'm just glad missing a few days of CycloSPORINE isn't like missing a few days of hormonal birth control pills. Then maybe I'd be considering that an emergency.

When I was ordering my birth control pills online to avoid the now controversial pap smear I'd order 3 months worth and order three weeks in advance to be sure I'd have it. I tried this with the pharmacies after my IC hit and they had to explain to me that insurance companies were evil and stupid (not a direct quotation).

Also, I had no problems ordering the pills online. I got a lot of hate from other women because I was doing that, but I had made an autonomous and informed decision on my healthcare so they can go stuff a stick up where the sun don't shine and the water flows.

One good thing about IC other than making me lose weight is that it gave me anger. Before I was no-drama-allowed and would back down, question my beliefs, feel bad, and just generally be a nice person who didn't want to step on other people's shoes. I try to remain like that in most cases, but unfortunately back then I was like that in all cases, even when I needed to stand up for myself. Now I can stand up for myself. Angrily. But I can. I am no longer that meek child I was before the 3 years of IC. I still cry at doctors offices (my first uro) when they offer really bad diagnostic or treatment options, but NOW I will walk out on them. Some day I hope I'll be able to verbally stick up for myself with direct quotations from medical journals, even if I may be very angry while doing so. I'll still walk out, but not until after a thrashing from peer reviewed, cited sources.

I still do have a problem with pap smears even though I love all my doctors now. I think the issue is that I'm feeling forced into them to receive the birth control pill. If it was for another reason it wouldn't bother me. I do need to ask my GP about my pelvic muscles since I think I may have Pelvic Floor Dysfunction which is causing the spasms more so than the IC, which I'm find with having a pelvic exam, but I'm afraid she's one of those doctors who will enforce the pap at every visit despite conflicting studies coming on the practice. She is only a nurse practitioner, so on the other hand she may be forced to do it by her high-up who I despise after an ordeal with. My GP is working on getting her MD, and I can't even imagine running a clinic and schooling from MD at the same time, so I do understand if she has no choice in the matter. All I know is that she didn't force me to have a scope stuck up me and gave me a YEAR and possibly more to find the right Urologist. She gave me muscle relaxers which helped greatly even though she couldn't diagnose the IC herself, but she had been scoped before and knew how painful it was. She also takes care of a few other pre-diagnosed IC patients so was fairly knowledgeable on it for just being a GP.

Now we really have to advocate for some kind of sedation for the scope. Many Urologists feel this is unnecessary because their other patients can go through it awake with maybe some Valium. BUT IS THEIR URETHRA AND BLADDER SWOLLEN AND SPASMING!? ARE THEY TERRIFIED OF SIMPLE PELVIC EXAMS!?

A one-way approach doesn't work, doctors. Oh, and by the way, like pap smears, my instincts were right all along about the scope and hydro as a diagnostic method. Summer of 2011 brought changes to the diagnostic methods. These changes stated scoping IS NOT NECESSARY unless in complicated cases, such as the rare percentage of ICers who get ulcers.. then yes, they need them removed. But for a formally completely healthy 19 year-old girl with only one boyfriend, both of which already virgins with no history of bladder cancer (and didn't see another doctor for 2 years while having a remission and wasn't dead or having cancer pains yet)?

My instincts to me to run, I did, I escaped would could have possibly set my iatrophobia out to kill me later in life.

Lesson? Listen to your instincts. Research, research, research, and make a decision and stick with it until finding a doctor who agrees. There's so many takes on IC that IC diagnosis and treatments are like religion. Which religion is right? This doctor swears their religion (AKA metaphor for treatment/diagnostic method) is right and you are a dumb ignorant person for not agreeing where as this other doctor believes the total opposite!

IC is like a magical disease in which you can eventually find a doctor who believes and feels exactly as you do. The hard part is finding them.


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On an unrelated note I learned that my Uncle had bought his cremation urn 7 years ago and his funeral wishes were not to have a funeral, but instead to have each household of the family take the urn and pass it around. When you get the urn you must throw a huge, happy party.

This is all I need to say to explain how awesome my Uncle was.