OrahDeb - Hystersisters Hysterectomy Article

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Hi, my name is Deborah (thus the OrahDeb, a nickname from a high school friend). I'm in the Deep South in Georgia where I LOVE the weather and I don’t plan on ever living where snow actually stays on the ground. I enjoy doing machine embroidery and mostly love playing around with the designs on the computer. It's a fun hobby and my collection of designs is larger than ever.

I have given birth 6 times and have 5 living children. We lost our 2nd child way back when (my only c-section: he was born with serious problems and only lived 2 weeks). My oldest—a son—is away at college in the west. My oldest daughter is mildly intellectually disabled & is still here at home attending a program through the schools for now. 2 more daughters (teens) and a son still in elementary school.

I found HysterSisters back in April 2005 when I was looking for information on a possible hysterectomy. I was hoping I could go with either endometrial ablation or the Mirena IUD but I found out I had a bicornuate uterus which precluded both of those options. I first posted about my former oddly-shaped uterus. I had a small fibroid, heavy bleeding and much pain each month + my uterus and bladder were in a state of prolapse. I sure needed to know what could be done and what others had done. I had MAJOR stress incontinence and in my search for a new gynecologist, I specifically looked for a urogynecologist so that problem could be addressed directly also. It was and I had a transobturator tape (TOT) put in for support of my urethra at the same time as my vaginal hysterectomy and bladder lift-cystocele-anterior repair. The forum postings on Bladder Matters are dear to my heart for obvious reasons. The day of my surgery, I woke up in recovery with a tremendous headache from the epidural called a postdural puncture headache (PDPH). NOTHING (narcotics, ice packs) touched that pain until the anesthesiologists did a blood patch the next day. Then, I had post-op complications of infection, pelvic blood clot, possible PDPH return, & fever and had to go back into The Castle for an extra four days after I’d been home several days from my original surgery. That return trip had me getting all kinds of tests such as pelvic CT scan with nasty contrast , an MRI of my brain, large volume spinal tap, evoked potentials, etc. etc. The MRI showed too many unaccounted for lesions or scars on my brain thus the other tests. After the other tests were negative and after being released, I had tests for blood clotting factors (negative) and even had a semi-invasive TEE, transesophageal echocardiogram to check for possible heart chamber problems (none at all—perfectly healthy heart). The brain lesions ended up being of “unknown etiology”. Finally, months later, my neurologist diagnosed me as having Migraine disease--all these years I thought my headaches were sinus in origin & some were BUT most were not--and said the lesions could possibly be caused by that. Who knew? I now see both a neurologist and an ear-nose-and throat specialist.

My hysterectomy certainly led me down several previously unknown paths. The latest has been that unpredictable one of mesh erosion. The mesh used to support my bladder in the cystocele/anterior repair has not stopped eroding since being put in. I've had several surgeries to remove or excise the mesh and close the mucosa over the excised area. The surgeries have been no fun but the in-office procedures to try to remove the mesh have been far more painful than the surgeries themselves. I am sincerely hoping to resolve this ASAP. Meanwhile, I share this journey with several HysterSisters who are very caring women and are good examples to me of how to endure.

The information I’ve gotten here has been invaluable to me. This website is so full of information and advice and tips and encouragement. I remember reading through all the Castle Stories before my surgery with absolute fascination wondering how mine would turn out. I bought Through the Land of Hyster and read everything written with such humor and candor. I was both thrilled and a little nervous when I was first asked to be a Hostess. In being one, I have found that I've gotten more back than I've ever given. I hope I can help others feel even a little of what I feel I've received here myself.

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