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.
Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.
Dear Tymayo, I am so heartsick to learn of the fear, pain and shame you have experienced. You are so courageous in sharing it, though. Speaking only for myself, I am in no way offended and feel absolutely clear that having this space to share what you've held for so long is a very good thing…for me, and maybe others, as well. I have read postings that describe my worst fears as well as posts that offer me hope, strategies for coping and encouragement. I feel grateful to be currently experiencing so much less of what you and others report here, and so much compassion for any and all who endure discomfort, uncertainty, worry, fear, frustration, pain, and yes, shame. My sense is that each of us reads what we feel up to reading and pass over reading what we imagine we're not ready to know is possible in this life.
I want to respond to your comment that you have been your own worst enemy. I don't see it that way at all. I see a culture, that has taught us, as women, especially, that certain parts of our bodies are not subjects of "polite" focus or discussion. This has kept too many of us from stating our needs and our fears, and from reaching out for care that we need and deserve. I went a lifetime with urinary incontinence that, when I finally asked for help as a young adult, was "treated" in ways that traumatized me physically and emotionally, and resulted in my hesitance to seek further care for over 30 years. It was much easier to see my situation as a "personal failing" rather than a medical condition deserving care. Upon finding my way to this Mayo Connect resource, I learned that there are whole departments dedicated just to what I've been hiding and feeling shame about all these years, and care available that is respectful, tender, kind, responsive and (I hope…waiting for clearance post-op to give that part of my surgery a comprehensive test in real life but preliminary signs are promising) effective.
That this support option is here is a gift to me and I hope it remains one for you, as well. Just as others' honest sharing of their worst nightmares has been a gift to me ( I learn that one can survive and cope with much worse than I currently face, thereby giving me courage to stand tall in the face of my obstacles) your sharing of your experience is valuable and will help others, I am certain. I arrived here first seeking only information and have found bomb-proof support and then excellent care at the Mayo Clinic as well. I wish you whatever support and information you need and hope that you, too, will find care that brings you hope of relief and closer to a life you can enjoy living most fully.
I send so much gratitude, care and hugs your way…
Words don't do justice to how much your response means to me. Your analysis of the culture and that you shared the same reaction makes me know I am not alone and not as "at fault" as I have always believed. Mayo Clinic literature and now this forum and finding someone like you who truly understands are life changing finds for me. Thank you is inadequate but the best I have. Thank you.
More than adequate. Thank you, tymayo. I hope you will keep all of us posted about what you learn, how you choose to move forward and how it unfolds for you. Many hugs…
Tymayo, I am so sorry you have dealt with this for so long. I was very lucky and mine was discovered early, I had a partial radical vulvectomy, and honestly can hardly tell a difference except that irritating lump is gone that I had written off as a scar being inflamed. My Gyno's NP ordered the biopsy and within days I was sitting in the oncologist's exam room. Everyone I dealt with has been caring, professional and understanding. I wish you could get that kind of care.
@tymayo I too am dealing with vulvar cancer. In the past 6 months I have had surgery, chemo and radiation. I also live alone and the bathroom issues were described perfectly. The crying and pain caused me to stop eating solid food. It was terrible. I know it was hard for u to put your post out there but I am thankful to hear from someone else out there that has the same cancer. Remember u are stronger than u think.
Thank you for your kind encouragement, @bobette1. It really helps to know that I am not alone in some of these side effects, even though I am sad to hear anyone else has to deal with it. Coming across the Mayo Clinic low fiber diet has been a game changer for me. I still struggle with pain but the worst, the impactions, have mercifully stopped.
@sillywabbit I am so relieved and glad to hear that your initial surgery experience has been so positive. While I was traumatized by mine, that is on me. The takeaway I hope others have is don't be traumatized and don't neglect follow-up care and regular checkups. I did not and it came back with a vengeance. That and circumstances (fear of COVID, etc) led to it increasing to a size that is now spread down my left thigh and left me virtually bed-bound. Don't be me.