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Don't Trust Medical Professional Enough to Deliver a Baby

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  • Don't Trust Medical Professional Enough to Deliver a Baby

    Hello,

    The title says it all, but I'll provide some history. If you're familiar with my story, feel free to skip the next three paragraphs, and pick up at the time-jump in the fourth paragraph.

    I developed IC at 15 and had a year of negative experiences with the American healthcare system. These included seemingly not being believed when I said I was in severe pain, as well as other experiences where I felt my agency and body autonomy were treated as unimportant. During that year, I posted some of my experiences here and also researched treatments. When I was 16, I managed to access my medical records, and my mother and I learned that my doctors had been dishonest with both of us. With that knowledge, she helped me request and finally start on treatments that I had researched. These treatments were Atarax (hydroxyzine), Urocit-K (potassium citrate), Elmiron (pentosan polysulfate), and menstrual cessation. When I was 17, I was able to stop all of those treatments except menstrual cessation without returning to daily pain or any significant level of disability. I am now 32, and menstrual cessation is the only treatment I need to keep my IC very mild and mostly painless. I also completed cognitive-behavioral therapy at that time, including sharing my negative experiences with the medical complex. This didn't help my IC symptoms, but I know many people here encourage IC patients to discuss their experiences within therapy.

    After my IC diagnosis and successful treatment, my health was good overall for a long time. Like many others with IC, I do have other health issues, but in my case, they do not cause much impairment. They also produce little to no physical pain for me. Doctors were largely respectful and attentive when treating conditions that did not cause me physical pain. Most respected that I wanted honest communication, the right to say no to or stop a procedure, and the ability to make decisions regarding my care when practical. To this day, I do not hear any misogynistic comments about my heart condition, and no one says I'm taking beta blockers for recreational purposes. It's really nice.

    When I was 26, I developed bile reflux. This condition is different from acid reflux, and tends to be significantly more severe. I had another year of negative experiences with the healthcare system as soon as I was once again in severe pain. Like last time, I spent the year I was 24/7 pain researching treatments. When I was 27, I managed to finally find a doctor who would offer me the treatment I wanted to try, which did indeed make my bile reflux manageable and usually painless. He later moved, but my current GP is very kind. I did try more therapy as well, to talk about my experiences. Many doctors are nice to me when I don't have any pain that I need help with.

    Time-jump: I will soon turn 33. My husband and I have always wanted to have at least one "biological child." If it were just a matter of finding a good OB-GYN, I would be all in. But I don't think it is. This time last summer, I heard a speaker explain that the issue of police brutality isn't a matter of "a few bad apples" in the police force, but of systemic racism within the law enforcement and criminal-industrial complex. Not to make any direct comparison, but I feel that my own problems haven't just stemmed from a few bad healthcare providers, but from the ableism and misogyny baked into the healthcare industry and medical-industrial complex.

    Today, I don't trust an American midwife-nurse to help me with a home birth. I don't trust American nurses at birthing centers. And I don't trust American doctors at hospitals. Birth is a very painful experience for women, and one where the woman requires help. I'd much rather go through my 2016 surgery again, which I had for my bile reflux. Surgeons at least get inside, do their job, and are done with you after. No moralizing or gaslighting, just the recovery room.

    During the time I spent outside of the US, it wasn't as bad. I felt that professionals I spoke to were not as concerned with legal liability as they were with helping me, and they spent more time with me at each appointment as well. I can afford to leave the US to give birth and am in the early stages of planning for that, to see if it's feasible. But I'm under no illusion that I'll find somewhere in the world without any ableism or misogyny. I know IC patients have struggles everywhere.

    I am already in the process of finding a local OB-GYN as well. I’m also in the process of finding a therapist to discuss this with again, although I don’t know what’s left to say. In short: I don’t feel I will get the help I need with labor and delivery pain. I know the cognitive-behavioral methods I can use to change my thinking on this, and I do already use them. But my feelings are based on my lived experience. I don’t feel I’ll be believed if I say (for example) that the epidural is only numbing me on one side. If I’m trying to go the more natural route with pain and say something seems off, I don’t feel that possibility will be taken seriously. If I say I’m uncomfortable lying on my back, I don’t feel my autonomy as a patient will be respected enough that I will be helped into a different position.

    Many medical professionals are nice to me when I don't have any pain that I need help with. But that’s not what childbirth will be like.

    (Hugs to anyone reading this who is in pain.)

    Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
    Current IC treatments: menstrual suppression
    Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
    As-needed treatments for other conditions: Klonopin, Ambien

  • #2
    My god, you have been through Hell and back haven't you.

    But yes, I agree women as whole aren't believed, especially If you're young. I remember when I was in a general recovery ward after a uterine biopsy and saw a young girl crying her eyes out with her parents by her side. She wasn't't crying because she was unhappy, but because after several years of agony that hospital had finally opened her up and discovered that she did indeed have fibromyalgia. It was everywhere, even on her bladder. So she was crying because finally she had proof and that she hadn't been exaggerating all these yers.

    It's sad sate of affairs when someone is allowed to be left in agony for so long like that. This was in the UK by the way, so this terrible attitude is everywhere sadly.

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    • #3
      First of all, I'd just like to say that it's good to hear from you. I remember when you were 15 and having a horrible time --- and happy to hear that you are doing well and looking forward to having a baby.

      I suggest that you find an OB/GYN who also is knowledgeable about urological conditions. I know there are some around who specialize in both areas. With all of your medical conditions, I also suggest you revisit your home delivery plan.

      I spent 25 years working in a major hospital and, while I agree that there are good doctors and bad doctors, I strongly feel the good far outnumber the bad. If you have a friend who is in the medical field --- perhaps a nurse? --- you could ask for some help in selecting a doctor. And definitely ask questions.

      Sending warm hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

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      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

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