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.

Modesty from a doctor's point of view

This is from the Huffington Post.

I never should have let it happen. A few months ago my wife became critically ill and was hospitalized for an extended period of time. She received spectacular medical care and the vast majority of the people were wonderful. However, as she awakened and began to participate in her care, some of her first words described the experience as "demeaning" and "humiliating."

The most memorable episode occurred one night when a male nurse insisted on bathing her -- and kept calling her "dearie." As I stood by, he kept insisting that "this wasn't his first rodeo," and "he wouldn't see anything he hadn't seen before." Not wanting to upset the apple cart, I convinced my wife that it would easier to just "get it over with." It was indeed humiliating and demeaning. I never should have let it happen. I am a physician. I knew better, and yet I felt the power of the system and did not want any retribution for not cooperating.

Click here to continue reading.


Best quote ever: "I particularly hate speaking to a physician when I am in my underwear and he is fully clothed. Either I get to put my clothes on, or he should undress while we talk." - Richard C. Senelick, M.D.

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.

True

“In medical care, dignity is the first casualty.” (Kussin, unknown American physician)

Mine was lost at 5 when being forced to have a male doctor examine my privates despite me screaming no, that I wanted a female doctor. Neither him or my mom cared, ranting the "We've seen so many" line, but that did not console me and I fought, and fought hard until I was captured, forced down and touched with covered my vaginal area with burning cream, assuming I had some sort of yeast infection when in fact it was the very first hint of IC.

I remember it. That means it was traumatic for me. Children REALLY need parental advocacy.. this incident has stuck with me for a long time.

Update, patient rights, violations, PTSD in children after medical procedures

On my second pack of cyclosporine. The second blood test hurt a little because the lab had to use a vein that I wasn't focused on when putting the lidocaine on. Some was on it, but not the glob it needed. She's a nice lady and it was fast. Now I only need bloodwork done once a month.

November is usually my worst for pain. In Louisiana the weather changes drastically. It'll go from 80 to 30 back to 70 and so on, really messing with a lot of people
s chronic problems. My diabetic friend's pancreas started spasming bad which we also assume is the cause.

Nov. 15th of last year was when my huge IC flare hit and never went away. This is what lead to my heavy use of pain medications because before that I only needed some benedryl and the diet and I'm not sort what happened other than the weather completely destroyed me.

So far I haven't missed classes. This week is final paper week so I'm busy trying to get through them in case a really bad flare does hit.

I hope to God that this is the cyclosporine helping me and I will be able to finish school, only to take more webcourses so I can be a transcriber since it appears I will be too disabled for a regular job for a long time. What I really want is to teach, but that won't happen with IC.

Onto another subject: I have a great fear of doctors since my mom never advocated for me. She'd pick one place and stay with it regardless of my feelings. I was born with a lazy eye. First doctor tried glasses to strain my muscles to see if that worked, second used an eye patch to force me to use that eye, and finally they just did surgery. All it really did was make me look "normal" but my eye function is useless except for peripheral vision. It was a very painful and traumatic event for me. Everyone of them used dialation eyedrops which felt like acid to me. To this day I can't go to an eye doctor, or even have someone try to put on makeup around my eyes without me squeezing them shut. I can't have the glaucoma test, because my eyes close without my control.

Another incident was the foreshadowing of my IC. In kindergarden one day I used the potty and found I felt like I had to pee very badly even though I just peed but nothing would come out, so I went to my teacher crying and she called my mom. It was expected to be an UTI, but nothing showed so the doctor wanted a physical exam. The problem is that I am female, he was male, and I was always told it was okay for me to not let anyone touch my private places if I wasn't okay with it.

I wasn't okay with it. I wanted a female doctor. I cried and pleaded that I didn't want this scary man (who was also responsible for my vaccinations, making him all the more scary) to touch my private parts because they were private. Instead of getting a female, they held me down and he touched me all down there and put this nasty cream all over the place in case it was a yeast infection. It burned and didn't help my symptoms.

Thankfully I felt better after a few weeks and nothing happened until I was a bit older, old enough to NOT tell my mom about this since she never advocated for me. I used the azo pills and the pain would go away. It happened about once every 2 months after going to the bathroom, they were spasms but I didn't know. I just knew not to say too much or bad things would happen to me against my will.

I just know I'm very thankful that the full blown IC waited until I was an adult. The diagnostic methods back then were even more barbaric than they are now and there was no way I could have mentally handled a scope going up me without GA. I'm messed up as it is, but that would have blown me over the edge, and so I am for advocating kids right to their own preference for healthcare. No one doctor does one thing the same as others. Parents must shop around for their kids, otherwise PTSD will develop. The perfect doctor is out there for everyone, but most people don't care if a certain procedure would hurt a child way more than adult who actually consented to it. Forceful penetration of the urethra or vagina, even for medical reasons on an unwilling child is rape. There is just no other definition for it.

I am across this site and it pissed me off so much http://patientmodesty.org/modesty.aspx

Pretty much it shoes the abuse hospitals will put you through if you don't fight. There's nothing silly about a rape victim, or even just a very modest girl, refusing a man for a pelvic exam. Routine Pelvic exams in general sound like a sack of crap to me. As an IC patient, I need it done, but for girls just trying to get birth control it involves no patient consent because there is no choice. It's a carrot on a stick, and sickeningly most women are okay with this. "Better safe than sorry." It is, unless you have severe emotional issues towards such things. Only you know your sexual history and risks of cancer. Sometimes they even force virgins into it, which is humiliating and often painful, and akin to a first sexual experience if the hymen breaks except its not with someone you trust or love, just a cold sterile thing force into you to receive the pill so you won't get pregnant we you try to "re-lose" your virginity. Too bad someone else already had their fingers up you. Thankfully at the age of 16 I knew what was going to happen if I was placed on the pill for acne, especially since I was dating, but I was also still a virgin. My mom pressured the doctor into putting me on the pill and I flipped out to the point that he forced her out the room. Me and him decided that I shouldn't be on the pill. Story closed, and I for the first time in my life advocated my bodily autonomy.

A few days ago I came across a post of a mother who's 3 year old daughter needed a VCUG done. This is where they put in a catheter and fill it with idiodine so they can x-ray to see if there's kidney reflux. Problem is you have to be awake, because you have to piss all over yourself after the dye is put in so everyone in the room can stare at you while you pee yourself. Now imagine going through this as a 3 year old, with no pain killers except maybe lidocaine, which works okay with small needle procedures, but must painfully be injected into the urethra in the first place and won't stop the horrible sensation of the catheter ripping past the child's spincter because it is a CHILD. Children cannot follow the order to relax to let it pass through. Even I couldn't. The cath burns upon entering, causing clenching, and a child will fight it. I've read accounts of adults who had it done as children and they can't even get pap-smears anymore and would rather die than have someone touch that area again.. the same goes with the IC community. I myself was very close to suicide until I found the doctor who diagnosed based off symptoms rather than the scope, which, they will not put you out for.

It's truly disgusting how patients are treated, but so many give in and even berate others for "walking out".


Wiki on VCUG: http://en.wikipedia.org/wiki/Voiding_cystourethrogram
It's a very impersonal explanation and won't prepare the patient for the pain and humiliation that comes with it. Sadly most recipients are children. Children who are not given proper sedation and can't understand why this is happening to them and why their mothers won't save them.

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Updated 2018: There is now a community on Reddit for those of us with medical PTSD. It was a long time coming.. so few places to find support. Those of you who find this blog, please continue posting here and cross-post there for support. https://www.reddit.com/r/MedicalPTSD/