The Journey Begins

Thanks for joining me! I’ve been trying to determine where best to start telling my endometriosis journey. So, I’ve decided to jump into current events! I am a patient of Dr. Michael Hibner in Phoenix AZ & I travel about 3 hours one way to see him. I found him by a fluke… 4 years ago, on a Facebook endometriosis website. I wish I could remember which one, now. It took me six months of researching him to work up the nerve to call his office and find out what was needed to make an appointment with him for consult. Dr Hibner did for me in one visit what no other surgeon had ever done. He believed me! I was 39 when I had my first surgeon believe I was in pain. Crazy statement but many women like me understand. He said three words I wish someone had asked me to research years ago- Pelvic Floor Dysfunction. His words: ‘The muscles are like Charlie horse. They’re so tight that they can’t get tighter, nothing goes in or out and the pain is unlike anything’. Read about PFD here: Pelvic Floor dysfunction . Hibner assured me he could help me. Pelvic floor Botox, compound suppositories with Ketamine, Baclofen and diazepam and pelvic floor physical therapy. Oh wait- you have urinary symptoms? What’s that? You’ve never had a UTI but have all the symptoms? Have you been tested for interstitial cystitis? Read about IC here: Interstitial Cystitis . No? Let’s do that today too…Whoa! I cried. My husband cried. We couldn’t believe it! After 20 long years of searching… driving to homeopathic practitioners in different states, firing almost every GYN practice in Tucson and exhausting Mayo Clinic, Scottsdale. Hibner believed me! There was finally a game plan! So, back to current… on June 21, 2018, I had my tenth procedure with Dr. Hibner. He did a 35 minute bladder hydrodistension, 400 units of pelvic floor Botox injections, bilateral pudendal nerve blocks and bilateral vulvodynia nerve blocks. This is all done under general anesthesia with a spinal block. I spend a night in the hospital and once I can urinate twice (after cath is removed) with a confirmed scan that I’ve been able to empty my bladder, then discharged home to sleep for the weekend and then by Monday I’m about 85% better and able to function. The previous 9 procedures were a cake walk compared to this one. Holy cow… my bladder has not been happy at all. Bleeding non stop, clots, spasms and pain. I think we’ve driven back to Phoenix every Monday since for urgent follow up appointments. On a pain scale of 1:10, this bladder is a constant 10. I have peed blood since the 21st! So, other than the bladder flare, this procedure was different because Hibner Injected 400 units of Botox instead of 200 units and he also did the bilateral vulvodynia blocks. I can definitely tell the difference with 400 units of Botox on board- I literally have to tell those muscles that I’m going to stand up! 🤭 Sky Harbor Airport and those walking escalators almost brought me to my knees!!!! No F*cking joke- I sat in the middle of the airport and cried. Damn bladder!So, there is the current situation. Thanks for joining me. 💛 #OldGirlintheEndoGame #suckitendo #endendo #endostrong #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamDsouza

You have to step out in FAITH, even when you are vibrating with FEAR…

~~ Bill Hybels

4 thoughts on “The Journey Begins”

  1. Proud of you!!! So many times we are told to just live with it—after all our mother and their mothers so forth. But now all the research is coming out they didn’t live with it! It is a horrible deabiliting disease! I am proud of up speaking up and for being my forever friend.

    Liked by 1 person

  2. I am so glad you were able to find a doctor who believes in you! I have IC, Endo and PFD also! I recently had the bladder and pelvic floor botox, two weeks later I had another nerve block and two weeks ago I had the exlap surgery to remove my Endometriosis adhesions for the second time and the pain is so much worse this time though. #WeStandTogether ❤

    Liked by 1 person

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