Saturday, September 17, 2011

Endometriosis and Infertility

     So I am once again navigating the treatment of endometriosis with surgery.  A little bit of background, I was diagnosed with endometriosis at 17, but I remember having pain as early as 14, and my mom recounts unusual cycles from the very begining, at 11.  I had one surgery at 17, another at 20.  I have been on just about every birth control know to exist, as well as myriads of painkillers, along with bouts into all sorts of alternative treatments from acupuncture to massage to biofeedback to TENS to physical therapy.  I have made diet changes (no gluten or dairy), and I've been charting my cycles for 2 years.  In all this time, all that has managed to happen is maintaining the status quo, or periodic bouts into much worse.  The end result of all this?  I think the ultrasound tech at my last appointment said it best - "Its all messy in there.".

     Definitely not something you want to hear while trying to get pregnant, but I've been under no illusions - there's a reason I've been unsuccessfully trying to get pregnanct for going on two years.  I had actually been rooting for a surgery for some time now - I'm finnaly ready to have children, and pregnancy and breastfeeding can be one of the best treatments for endometriosis.  Such a fundamental shift in hormones and the way your body functions is a lot more powerful, and a lot safer, than most things which can be offered by the medical community.  A big issue of course being that it's been damn hard to get pregnant with all that stuff going on.  What I've been desperatly wishing for is a reset botton of some sort, something only surgery can provide.  If I could just get rid of the pain for awhile, I could get off the drugs, could have the energy to eat better, to do physical therapy, make sure to follow my diet to a T, excercise, all the things that can help keep illness at bay, but that anyone with a chronic pain causing disease knows is virtually impossible when its all you can do to get out of bed most days, and all you can eat some weeks is applesauce and ginger ale.

     But like most people in this country, I don't have enough money to be healthy.  Two years ago I had insurance, but my co-payment was so high ($490 a month at 22 years old!) that I couldn't even afford to go to the doctor, let alone get surgery.  Then I couldn't afford even that, and I joined the insurance-less masses.  Hello free clinic, goodbye considerate or preventative medicine.  Now, two years later, after a year of not working due to my disability, I've finally won the lottery.  I'm now so poor I get Medicaid.  $3 co-payments and foodstamps have made us miraculously able to consider real options for treatments.  Yes, I have to jump through 10 levels of hoops for referrals to the correct person, but once I do, I get surgery, physical therapy, nutritional consultation, pre-prenatal care, the works.  And guess what?  I can actually afford to eat well now that I have food stamps.  On the one hand it really sucks that I have to get to the point of facing loosing my home or being on permanent disability before our government will give me any help, but hey, now that I have it, I'm pretty psyched not to be somewhere where I would have just continued to fall through the cracks.

     How does this tie into Radical Pregnancy?  Maybe it doesn't, maybe this is just a recollection of my personal struggle to try and attain pregnancy while being weird, on the fringes of society.  But maybe that's the point.  How many other "fringe" women are there out there like me, who want children but have none of the options available to our middle class sisters?  Elective surgery?  Hell no!  IVF?  Not in your life!  The basic requirements of real food, safety, rest, and a limited stress environment so your body can try desperately to heal itself?  If you want it, you are going to need to beg, claw, and work yourself ragged just to lay the groundwork for a community where people like us can give ourselves and each other those basic human rights.

Friday, September 16, 2011

The Four Most Important Words In Labor

In the 90's there was a common "joke" many doctors told - what are the four most important words you need to know for labor? I. Want. My. Epidural. *grimace* That's pretty bad, especially considering that they weren't really joking. I would like to replace those with four different words, which are becoming more and more common as women everywhere are re-learning the fact that they hold power over their births. Read. My. Birth. Plan.

In the past, birth plans have been looked on with scorn, and seen by many doctors as insulting - luckily, they are become more common, and most doctors will readily accept them (except this scary place). Even if you are planning on an Unassisted Birth (FreeBirth) or a Homebirth with a midwife, it's a good idea to have one in place, either to give to your midwife and doula or to take if you end up transferring to a hospital. One very important thing to remember, since if you planned to birth at home, it is probably an emergency which lead you to transfer, is that you have the RIGHT to say NO! If it ever gets to the point of having to do it their way or walk out, you have the right to walk out. Doctors may try to scare you into a c-section when you think you don't need something that extreme, or maybe they say you "have to" have a vaginal exam/fetal monitor/ultrasound. Any person can refuse any procedure for any reason, regardless of the bullying, and sometimes even threatening to call child services some doctor will do to try to get you to do it their way. A surgical or medical procedure in birth is legally performing surgery on you for the benefit of another person. Would you ever think it was okay for a doctor to demand you give a kidney to another person against your will? NO! And they have no more right to do something to your body you do not want just because that person is inside you. As that little person's mother, you have the right to make medical decisions for them until they are 18, anyways, so they cannot use the rhetoric that their decision is because the baby cannot speak for itself. Neither can a one year old, but a doctor would never say they speak for the child rather than their parents.

Here and here are two mainstream articles on basic labor rights, one from the very well respected, the other from a wiki page on pregnancy. They both clearly state what I talked about above, with the caveat of getting into informed consent. This can be a tricky matter, since you do have the right to "go back on" your own consent, i.e. the right to change your god damned mind while in labor, but due to blanket consent forms given at some hospitals, you need to pay close attention to what you are signing. Even in an emergency, try to have a support person who knows your wishes read it for you and tell you if they think you would agree to it. Another important thing points out is that you can CROSS THINGS OFF of those blanket consent forms. Now I don't know if that is a legally sturdy thing to do, but it would make it very clear to a judge that you did not consent to that measure, and that alone will usually be enough to get a doctor not to scold you for slapping their hand away when they attempt to do it.

Despite all these legal reasons however, women can end up with a doctor or hospital very very mad at them for refusing treatment, and though it is an extreme case involving mental illness, a couple recently had their child removed by court order after a prolonged throw-down with the hospital. You can read about it in depth here, and also see a (IMO) fairly pessimistic political piece from The Birth Activist.

Now that all the political stuff is out of the way, some particulars that are good to include on a transfer birth plan.

Vaginal Exams: How many, how often, under what circumstance?

Induction: List natural techniques you are ok with, and your preferred medical technique.

Pain: Natural techniques you are ok with, and preferred medications for both c-section and other uses. Do you want the "pain scale" used, or not want to be asked about your pain?

Monitoring: Specify if you want only intermittent monitoring, even if you are undergoing an intervention.

Enemas: Say if you want one, or if you want it available.

Episiotomy: List natural treatments you want, if you would rather tear, what degree tear you want stitches for, and if you want local anesthesia.

Placenta and Cord: Do you want to have a Lotus Birth (where the placenta and cord stay attatched after birth)? When should the cord be cut? Who should do it? Do you want to save the placenta?

Hemorrhaging: Any natural treatments you want to try, such as breastfeeding? Do you want a transfusion before medication?

C-Section: Who has to give consent? Type of anesthesia? Do you want to be kept conscious? Have the baby placed on you? Kept with someone else? Type of incision? Type of stitching? How many people can be in the room? Is non-essential talking allowed?

People: Who can be present during your birth?

After Birth: Who holds the baby first? Is it cleaned? Do you want to breastfeed? Can the baby be taken away from you at any point?

Newborn Procedures: Are there any standard procedures you don't want, like eyedrops, vitamin K, PKU, vaccines? Who holds and accompanies your baby for these? Do you want your baby to be allowed pacifiers, sugar water, fake nipples, formula? Circumcision preference.

Who's In Charge?: Especially important in non-traditional families, you need to state who has control if you are incapacitated, and be clear that they must get the informed consent via signature of that person in any circumstance the birth plan states it would otherwise be needed by you.

Another good thing to think about is the standard use of "polite language" in birth plans. Most people want their plans to be well accepted, but sometimes they can come across as preferences, not decisions you have firmly made. I suggest having two, especially if you have a midwife and plan to labor at home first, or unless there is an emergency. It is becoming very popular to have birth plans be in more of an essay format, which is a great way to connect with a midwife or doula, and can be a nice introduction to a doctor, but if you are in the nitty gritty of a possible c-section after being transported from you planned homebirth, chances are you will not be treated with complete respect, and your birth plan needs to be forceful enough to not be "misinterpreted" by an unrespectful doctor. This does not mean it needs to get nasty, but bullet points, charts, and headings are important for a fast paced situation, and plenty of language such as "absolutely", "under no circumstance", "must", "informed consent", and "signature required" are good things to get your point across. Of course, you could always take the direct approach, as Vita Mutari recollects on her blog a client who handed her an index card stating "Don't F*** with me!".

Edit: Since writing this post I have come across a birth plan critique series from Navelgazing Midwife, which can be found here. I really suggest reading the comments, especially in the first post of the series, where one very good point is brought up by a doula who suggests that her clients call the hospital or take the hospital tour if they are unsure about putting something into their birth plan, so that they don't come off seeing uneducated about their local hospital's policy. Before referring you to this series, I have to note that I disagree with the author and many of the commenters about the importance of birth plans (not very, according to them), but it's because they seem very skeptical that I have to recommend it - the opinions expressed can give you a good idea of what it might be like if you end up in a hospital, and the kind of hostility you might face.

One commenter recommends a single page in 14 point double space. The same woman is a Lamaze educator, and suggest using the idea/term "preferences" rather than "plan", particularly by initially approaching your provider with "concerns", and afterwards writing out your "birth preferences" and sharing them in a prenatal visit. She says this is most often useful as it educates women on what their provider is like, and often leads to them switching providers - I would definitely recommend this if you are working with a midwife, but depending on where you live, you could also go over the same plan with a regular prenatal care doc, and find out who in their practice is on call when. My Medicaid covered OB/GYN comes with the caveat that I see many providers within the practice, but it gives me the chance to meet most of the people who would be on call at the hospital, and find out who I could request when I KNOW more than one doc is available, something that could work even with a transfer.

Resources for Birth Plans

The Home Birth Reference Site
Birth Plan Decision Reference
Birth Planning
Writing A Home Birth Plan
Free Birth Plan Form
Interactive Birth Plan
Transfer Birth Plan Example
Personal Transfer Plan