effect of stacking HBC on existing cysts/medical questions

[gloraelin.livejournal.com]

Boo.

Random question: I have a ~4cm diameter cyst on my left ovary. The NP I saw today said that I needed to stack, starting now, so that the cyst would go away and I wouldn't develop any more. But... I thought that a] cysts are tied to your actual cycle, so stacking would just make it last longer, AND b] you don't ovulate on the pill anyway, so what's the big hullaballoo about stacking?

I'm just so frustrated with being told misinformation or even lied to. Nobody's willing to help me fix the cyst, just maybe possibly treat the symptoms, if I'm lucky. And then they complain when I need more narcotics, but that's caused by them denying me a solution, and it's just nasty.

I was also told today that I "couldn't" be having serious problems, since I just wasn't in enough pain. Um. I thought medical professionals weren't supposed to determine pain solely upon patient looks. The pain, literally, is so bad that, when asked, I say "I didn't know it was possible to hurt this much and not die." And yet I don't ~deserve~ a fix, despite not being able to function at all?

Another concern:

because of the severe nausea and pain [plus the hormonal effects of the cyst itself], I have had a hard time eating and staying hydrated. Before today, I had eaten ... I want to say a max average of 1,000calories per day for six days. I managed to force myself to eat three [tiny] meals today, but I'm still very concerned about the change in my diet. I know that the thousand calorie mark is considered to be the main ... threshold? for starvation, especially when borne out over more than three or four days.

And yet when I've told this to the providers, they just gloss over it... or don't pay any attention at all. The cynic in me says it's because I'm fat, that they're [albeit implicitly] wanting me to be on a ~diet~ so that I'll lose some of my horrible death!fat. Which is even wronger than just ignoring it, IMO. I just don't know what to do. Hell, my stomach is showing signs and symptoms of severe bloating [when reclining on a medical gurney, my stomach, from directly below my breasts to right above my navel, was at least two inches "bigger"/taller/sticking out more than it was two days before.

I just don't know how to handle this. I didn't restrict my eating on purpose, in fact I've been forcing as much fluids as possible and some semblance of healthy proteins and complex carbs so I don't totally die, but ... I'm getting the feeling they don't believe me. That they think I have an eating disorder. That I just need to ~lose some weight~ and all my problems with the cyst will go away. Except that it doesn't work like that. I've done my absolute best to stand up for myself and I still keep getting steamrolled. Like my rights and privileges as a patient don't exist?

On that note - am I correct in assuming that it is a patient right to have effective and complete treatment, including a resolution and not a "quick fix" of the "stack your pills" sort? I'm not that great on that sort of thing, that area of law was never my interest. Any help would be appreciated.

Thanks for reading, if you made it this far. I've got a bunch of write-ups being worked on, as this is a hellish ongoing saga, and I will keep you all updated as stuff happens. Thank you all for your incredible show of support thus far.

Comments

[fireaphid.livejournal.com]

First, I'm so sorry you've been treated so poorly during this ordeal! They really shouldn't be judging how much pain you're in by anything other than asking you about it.

This doesn't answer all of your questions, but I think the most recent NP you saw is going by the book. Continuous birth control should suppress ovulation and any action by your ovaries to grow the cyst. Giving your body a break to bleed would give your ovaries enough time to grow the cyst even if it's not enough time to ovulate. I don't think they're just trying to give you a quick fix; I think they're giving you the most reasonable option for now, to treat the non-critical cyst, which still sucks because it won't go away instantly.

They're probably not going to operate on a 4cm cyst (usually they only operate on cysts nearly twice as big if imaging doesn't indicate a torsion or other emergency problem), so I'd follow their instructions and check back if it gets worse. Unfortunately the stomach symptoms and bloating are probably related to the cyst; if it's not the pain, it's probably the hormones from the pill or from your own body wreaking havoc on the rest of you. )-;

As for the food issue, I'm not sure whether they're making assumptions about you or not, but I don't think worrying that they're judging you will help anything. Recurrent cysts a la polycystic ovarian syndrome are related to being overweight through insulin resistance, however, I don't think you have reason to believe the most recent NP is unprofessional enough to dismiss a serious problem, so I wouldn't be too concerned about that. Hopefully the pain will start to improve soon and you'll be able to eat more normally. Feel better!

[cel-bel-fre.livejournal.com]

Hi. I don't belong to this community but saw this post from a friend's list...Be careful with the bloating issues. Cysts can burst and the areas surrounding fill up with fluid just as you describe. If the pain becomes acute and extreme, get thee to an emergency room pronto. Make sure that if they know you have one that you're getting ultrasounds frequently to track it. I didn't have all of that done beforehand and ended up in the hosptial with complications, and more than a year later there are after effects I am still dealing with. When it comes to this you have to be pushy with your health care providers and I stonrgly reccommend taking an advocate (friend, family or call your local 211 etc) with you for these appts. Cysts are often taken lightly and shoudl not be. Stick with specialists for all aspects, not gen providers. Good luck.

[archangelbeth]

Your inner cynic is probably accurate; a test for insulin resistance might be a good idea. You might... hrm. You might want to call in and get a referral to a nutritionist, if possible -- say that you're concerned your restricted diet might not be nutritionally healthy, and you need to talk to someone. If the PCP is on the "oh yay diet" side (bastich), then you may get that referral -- and even though you're not on a deliberate diet, if you can get a nutritionist to okay what you are eating, it may reduce your stress? Not to mention it gives you a chance to get someone sympathetic who can perhaps offer more local suggestions for getting some painkillers that might work. O:(

If not... Can you get your boyfriend to advocate for you to your insurance? "The doctor is not responsive to requests to referrals. We need someone who can issue a referral for urgent health needs, or there will wind up being more expensive ER visits that don't actually solve the problem because it needs, surprise, surprise, a specialist and not the ER generalists. Please escalate me to your supervisor if you cannot approve a referral to [gyno X, nutritionist Y, otherspecialist Z if you need]."

Likewise, I'd say bring your advocate in to advocate some pain relief meds. "No, she's is feeling that bad. I know her, and she's non-functional right now. You are refusing pain medication to someone because she's more stoic and dignified than to be screaming -- and would probably refuse them if she was screaming because you'd say she was 'hysterical' and faking it. This refusal to treat is not on."

[sparks37.livejournal.com]

Just to clarify, OP, if you decide to get a professional to discuss your eating habits with, look for a dietitian (your doctor would probably refer you to one automatically, even if you asked for a nutritionist). A dietitian is someone who has gone to school and is accredited in nutrition. There are no regulations for nutritionists, so anyone can claim to be one. A nutritionist may be perfectly able to help you, but your insurance may not cover their services.

[archangelbeth]

Belatedly: Thank you for the clarification! I didn't know the difference 'twixt the two.

The AMA Patient Bill of Rights

[archangelbeth]

http://www.med.yale.edu/caim/risk/patient_rights/patient_rights_7.html

1) The patient has the right to considerate and respectful care.

2) The patient has the right to obtain from his physician complete current information concerning his diagnosis, treatment, and prognosis in terms that the patient can understand. When it is not medically advisable to give such information to the patient, the information should be made available to an appropriate person in his behalf. He has the right to know by name the physician responsible for coordinating his care.

3) The patient has the right to receive from his physician information necessary to give informed consent prior to the start of any procedure and/or treatment. Except in emergencies, such information for informed consent should include but not necessarily be limited to the specific procedure and or treatment, the medically significant risks involved, and the probable duration of incapacitation. Where medically significant alternatives for care or treatment exist, or when the patient requests information concerning medical alternatives, the patient has a right to such information. The patient also has the right to know the names of the persons responsible for the procedures and/or treatment.

4) The patient has the right to refuse treatment to the extent permitted by the law, and to be informed of the medical consequences of his action.

5) The patient has the right to every consideration of his privacy concerning his own medical care program. Case discussion, consultation, examination, and treatment are confidential and should be conducted discreetly. Those not directly involved in his care must have the permission of the patient to be present.

You may also want to look at http://www.med.yale.edu/caim/risk/malpractice/malpractice_2.html

http://www.ama-assn.org/ama/pub/about-ama/our-people/ama-councils/council-ethical-judicial-affairs.shtml is a start for filing a complaint. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics.shtml may be a useful thing as well.

*keeps fingers crossed for you*

[archangelbeth]

And then there's this:
http://www.ama-assn.org/ama/pub/about-ama/our-people/ama-councils/council-ethical-judicial-affairs/ceja-reports.shtml

and http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/frequently-asked-questions.shtml

[ktnzgtklws.livejournal.com]

Regardless of being on or off HBC, or even pregnant, your body actually has follicular waves going at all times. You may only ovulate once (normally), and that may be tied to your cycle, but that doesn't mean that your ovaries just lay there sleeping the rest of the time.
Basically, there is a constant rise and fall of follicles, until one gets large enough to be sensitive to a LH surge. In an ovulatory person, the LH surge causes the largest follicle to release the egg, a cyst forms which is now called the corpus luteum, (a major source of prostaglandin), and then when there is no "I'm here!" message from a potential fetus in the form of Hcg, the uterus releases prostaglandin, the CL is lysed, you menstruate, and the whole cycle starts over. During this whole cycle, other follicles continue to rise and fall, receading back in to the ovary when there isn't sufficient FSH to grow to a decent size, or when there isn't enough LH to prompt ovulation.
For some reason, some people do not respond to the LH surge, and rather than ovulating, the follicle continues to grow, and becomes a cyst... which continues to grow until it ruptures. :-( Your doctors actually are correct in telling you to stack. While follicular waves DO continue to happen while you're on HBC, HBC can reduce the size of the follicles, making them "give up" and sink back in to the ovary at a smaller size then they may have if given that withdrawl time.
I am SO sorry you have had to go through this. Because of the cysts, and your now stating that you are overweight, do you think you may be able to see an endocrinologist about potentially having PCOS? If so, you may be insulin resistant, which could be contributing to any weight loss difficulties. Getting the PCOS (if you actually do have it) under control is going to be much more effective at controlling your cysts than HBC alone!