Scared, scarred, and alone
This is an emotional release. If not appropriate, please feel free to remove my post.
I am crying with joy and relief at having found this forum. To all of you who have posted, and to the wonderful Mayo Clinic and volunteers moderating, I give you my most heartfelt appreciation. You have made me feel brave enough to speak for the first time about my experience.
I was first diagnosed with vulvar cancer in 1995 when I was in my mid-30s. I had a partial vulvectomy which unreasonably traumatized me because I had no support system and stupidly felt shame. I avoided gynecologists after because of that shame–misguided as I know that is. Fast forward to the start of COVID and I began having pain while sitting. There were no immunizations for COVID at that point and I was afraid to go to the doctor for fear of contracting it. By the time immunizations were available, I had a full blown tumor on the left side extending into the crease of my thigh. I was completely bedbound, unable to sit or drive and can not even stand / walk without issue. I will spare you the bathroom issues my ignorance has caused me but it has greatly exacerbated things and contributes to not being able to leave home. I am a kidney stone sufferer with two PCNL in my past, one on each kidney. I need to stay well hydrated, so that is a complication I have to consider.
Urinary issues aside, I discovered by keeping a food diary that my pain was elevated whenever I ate food that contained too much oxalates (my stones were caused by infection, not oxalates, for what that is worth). Some nights I have to pee every hour, so now I stay awake at night and sleep in segments throughout the day. My rectum has become severely constricted and I have issues with getting even a small bowel movement to push through. I don't have words to describe the level of pain that causes. I literally pant and cry out involuntarily from the pain that causes. Thankfully, I live alone so I am spared the embarrassment of another person seeing me like that.
I recently discovered the Mayo Clinic low fiber diet, merged that with an oxalate list I got from Harvard, and after strictly adhering to the low fiber / low oxalate diet, my pain level has actually started to subside. It is the first time I have felt any hope that I might one day be able to leave my house and get the care I need. Then I found the Mayo Clinic oxalate list and am working on incorporating that new info. I am so very grateful to you Mayo Clinic.
I realize I have been my own worst enemy. I don't know why I feel such terror but am I absolutely traumatized by this. I just felt the need to reach out and talk to someone. I hope this isn't upsetting to anyone and again I thank you all for what you do and for making this resource available. Most of all, thank you to all the much braver women than I who through their posts have finally removed my shame and given me courage. I don't know you, but I love you. Thank you.