Monday, February 15, 2016

Endometriosis and a Laparoscopy | Didn't see that coming

    It's been a couple months since my LAP and dang. People need to stop calling it a 'minor procedure'. A stomach scope is a 'minor procedure.' LAPs may be less invasive but they are far from minor. I had no idea that recovery would be this difficult. First of all, they thought I had mild to moderate Endometriosis, but once they had me open they realized that I had Stage IV, or severe, Endometriosis. She said it was everywhere, and that's almost certainly what contributed to my miscarriages and pelvic pain. It also wasn't just in my left ovary like she thought, it had even made it's way into my lower pelvis. Another source of severe pain. I've felt pretty overwhlemed with everything going on but I feel so relieved to have had this caught and taken care of. While it's hard to be diagnosed with something like this, you also feel a huge weight lifted off when you realize that you weren't overreacting, being weak, or just imagining things. I think a lot of times, especially as women, when we have pain associated with our periods or hormonal cycles, or even sex, it's socially understood that you just deal with it. Everyone else hurts on their period so take some Tylenol and deal with it. That's not true. Your period, ovulation, and sex should not be painful (discomfort is not the same as pain. You will have cramps on your period and sometimes during ovulation just like sex is not always comfortable. If you can't tell what is normal discomfort and what is pain it's ok to ask). I didn't realize that the pain wasn't normal. The pain didn't keep me from functioning day to day, so it's not a big deal, right? Wrong. If you are experiencing pain talk to your doctor. I really wish that I would have known how abnormal my discomfort was.

    Anyway, here is a summery of my experience:

    I was 'diagnosed' and scheduled for surgery the same day, and my surgery was performed about a week later. Luckily I didn't have a lot of time to think about it, so I didn't get too worried. I freaked out a little bit the night before but one of my best friends helped calm me down (Thanks Holly!). The hospital, St. Vincent's Women's Hospital in Carmel, IN, really was wonderful. The staff was great and as soon as we checked in they had us in a private pre-op room where they took my vitals, gave me an IV, etc. We didn't have to go sit in any labs or waiting rooms. They took me to surgery and Tyler paid bills (I'm not sure who had the raw end of the deal on that one). The only complaint I really have is that I woke up with zero pain meds so I felt everything and it HURT. When I asked the nurse for some pain management she told me that, when drugged, I had told them not to give me any pain medicine because I would throw up. I don't know why I said that because it's not true. I've been on several different kinds of pain medicine and been fine. The frustrating thing was that they took the ramblings of a drugged patient as fact. URG. Anyway, the nurse gave me some of the good stuff and I felt a lot better in just a few minutes. Once I was more awake she took me to my post-op room where Tyler was waiting and we watched HGTV for a couple hours, then drove home. Once we got home I went upstairs and my IVIG nurse hooked me up and I spent the next four hours getting my infusion. I thought it would be too much in one day but I just slept the whole time so it actually worked out really well.
    Tyler went back to work the next day so my friend Holly came and spent the day with me. If you ever have a LAP done and your spouse can't be there with you for the next few days you really need to find someone to come hang out. You'll be in a lot of pain not only from your incisions but also from all of the gas they pump into you so that they can see. It rises to your shoulders and chest and makes it so painful to breathe. Moving is all but out of the question. The pain from the gas was worse than any pain I felt from my incisions.
    I was doing really good on the pain medicine they gave me but the second night (early morning) I took some on an empty stomach and spend the next 4 hours dry heaving. Not fun after your abdominal wall has just been cut through. I was able to get a prescription for Zofran and after that all was well. Some wonderful friends brought me meals and my recovery went very smoothly from there.
    I'll probably have to have this surgery again. I don't enjoy thinking about that but it is what it is and I'll live. My life's motto recently.
    To sum all this up, pain isn't normal. Don't deal with it just because someone tells you to. Find out what is normal and abnormal. I wish I had known about this a lot sooner.


6 comments:

  1. Hi Macy, I've only just discovered your blog and this post really struck a chord with me. We've had unexplained infertility For five years, two unsuccessful rounds of IVF and wet recently a diagnosis of stage five endometriosis after a laparoscopy. I'm so devastated as I've been refused a lap for years as I haven't had the pain that's usually associated with it, and I guess, had they caught it earlier it would have been more treatable. Anyway, I'm waiting for a follow up
    Consultation but in my heart I've been feeling like this diagnosis means the end of the road for us - but I read your story and your diagnosis and wonder if we still have hope? I wondered if you might share with me how they worked around your endo or treated it? They unfortunately couldn't remove mine during my lap due to the extend of it :( I feel so lost, I'd so appreciate hearing from you .
    Thanks so so much, Caroline xx

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    Replies
    1. Hi Caroline! I'm so sorry about your diagnosis, and the struggle you've had in getting it. I know that infertility is such a roller coaster, and it's totally normal to feel hopeless at times. I had a two inch Endometrioma (a cyst/pocket of Endometriosis) on my left ovary. She thought it was probably just in my left tube and ovary, but she said she found it even as far down as my vaginal canal, which explains my severe pelvic pain during sex (which, of course, no one told me might point to Endo). They removed the majority of mine during surgery, though I'm not sure if it was all of it or not.
      As I'm still learning about Endo, too, I'm afraid I don't have as much information to give you as I'd like. :(
      Does your doctor not even want to remove the Endo throughout your reproductive tract? Or in your uterus to help with implantation? I don't know if that's possible or not. I'm a big believer in trusting your doctor, but also advocating for yourself and seeking more opinions if necessary.
      I know it's a hard point to be at, trying to decide to give IVF a shot or to pursue adoption or a child free lifestyle. Many cyber hugs to you. <3

      I'd love to chat more with you one on one! Feel free to email me at: macyrodeffer@gmail.com

      Delete
  2. Thank you for NOT staying silent, and so eloquently putting into words what many more feel but can't work up the courage to say. It's hard when you "look fine" to explain how much you're hurting... and how the psychological effects can even be worse then the physical pain. Thank you for being a voice and helping others feel that they aren't alone.
    ~Elizabeth

    ReplyDelete
  3. Thank you for NOT staying silent, and so eloquently putting into words what many more feel but can't work up the courage to say. It's hard when you "look fine" to explain how much you're hurting... and how the psychological effects can even be worse then the physical pain. Thank you for being a voice and helping others feel that they aren't alone.
    ~Elizabeth

    ReplyDelete
  4. Just came across this blog and as i read on it became so overwhelming that i had to write it out. Although its more than a year back but that was the time i was diagnosed with endometriosis. All throughout i had been conditioned to believe that any kind of menstrual pain is normal and that every girl/woman( i was a girl when i got it some 16 years back) has to go through. So I dealt with it for all these years and still dealing with it. But came as a jolt was the infertility that tagged along with it. Never in my wildest imaginations did i ever think i will be facing infertility as i had no problems with menstruation(except the pain). Its like clockwork. By the rule of the book a lap surgery has been suggested. I still cant come to terms with it. Surgery I know is not the end of the journey. But the journey is long and an ardous one I now know that I have to go through. TTC still in progress for me.

    ReplyDelete
  5. Just came across this blog and as i read on it became so overwhelming that i had to write it out. Although its more than a year back but that was the time i was diagnosed with endometriosis. All throughout i had been conditioned to believe that any kind of menstrual pain is normal and that every girl/woman( i was a girl when i got it some 16 years back) has to go through. So I dealt with it for all these years and still dealing with it. But came as a jolt was the infertility that tagged along with it. Never in my wildest imaginations did i ever think i will be facing infertility as i had no problems with menstruation(except the pain). Its like clockwork. By the rule of the book a lap surgery has been suggested. I still cant come to terms with it. Surgery I know is not the end of the journey. But the journey is long and an ardous one I now know that I have to go through. TTC still in progress for me.

    ReplyDelete