Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Gynecologic Cancers Support Group.
Connect
No, sorry. But I'm thinking that the estrogen-based topical cream might be one. I was never informed about what to expect after radiation, and was thus never told how to manage the symptoms. Whatever you do don't put morphine on the area--it stings like h#ll. A stupid recommendation by a nurse. Another stupid recommendation is KY jelly.
Thank you!
No I don't. Sorry
@andwho If you are referring to vaginal moisturizers then I can recommend Good and Clean Bionourish with hyaluronic acid. I use this externally in the vulva area and internally when I insert the Hyalo suppositories I've referenced below.
Good and Clean:
-- https://goodcleanlove.com/products/bionourish-ultra-moisturizing-vaginal-gel-with-hyaluronic-acid-2-pack?variant=40302472134840
I also use Hyalo Vaginal Suppositories twice weekly.
-- https://hyalogyn.com/products/hyalo-gyn-suppositories-30-day-supply
I had endometrial cancer and cannot use any estrogen products so these are what was recommended by my radiation oncologist after radiation therapy.
I'm curious what your Gyn-Oncologist recommends. Will you come back and let me know?
-
Like -
Helpful -
Hug
1 ReactionWhat a brave woman you are as well as a strong fighter. You have endured so much.
I can totally empathize with you.
I am currently dealing with the unknown.
I started feeling like there was a stick up my lady parts. It got worse sitting and constipation turned it into a feeling of being impaled. My GP did a vaginal exam and said that my vaginally tissue looked atrophied , there was blood. She said my cervix was inflamed. I had a hysterectomy , so I reminded her of that. She told me that she was making an emergency appt with a gynecologist for me because she didn't know what she was looking at. I think it may be a vaginal prolapse but am afraid it may be cancer. Your symptoms sound familiar. I live alone but hide allot of my fears and symptoms from my friends and family. Can we chat more?
-
Like -
Helpful -
Hug
1 ReactionMay I please ask why you didn't have surgery? I am scheduled for surgery on December 20 but I absolutely do not want it. I am meeting with the Radiation Oncologist on Wednesday (December 11) to discuss options.
My oncologist said my lesion was too big and would leave me with having to have reconstructive surgery also. I am very small in my hips & thighs and not enough skin there for skin graphing. I chose radiation over surgery. Please let me know how you make out.
Thanks for your reply. Were your pelvic lymph nodes also treated with radiation or did the PET scans show the cancer had not spread?
I think your message wasn't aimed at me. However, I chose not to have surgery - then with a different surgeon at another hospital had the decision confirmes as right for me. I'm not 78 - was 77 when diagnosed. I felt it was too drastic after a good life. HOWEVER, I was last spring diagnosed with metastatic breast cancer, back after almost 20 years. The new oncology surgeon, at my request, checked me. Said surgery wasn't necessary. It's neither aggressive nor invasive. (The previous hospital, nice as they were, had gone from it's a small surgery through a few stages to it would have been massive. CURIOUSLY - the harsh treatments I'm asking for the cancer have diminished symptoms for EMPD. I don't have a lot of burning and itching. The doc said there could be a connection between the anti-estrogen drugs which exhaust me, but ... also, these drugs dry me out.
At the previous hospital and at the pain-anagement clinic - before the cancer diagnosis - had me using medically prepared and prescribed cannabis ... and that seemed to help.
I hope you find a way through this with as little discomfor as possible and I pray peace for you with love from Canada
@chickflickcherry You are meeting with the radiation oncologist today which is December 11? It's good that you are exploring your options before surgery. I think this is correct (I read in another post) that you were diagnosed with vulvar cancer?