Scared, scarred, and alone

Posted by tymayo @tymayo, Apr 2, 2023

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.

@andwho

Thank you for the insight. I have an appt with my obgyn oncologist coming up & will ask about it! Do you know the names of the creams?

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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.

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@cookercooker

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.

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Thank you!

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@andwho

Thank you for the insight. I have an appt with my obgyn oncologist coming up & will ask about it! Do you know the names of the creams?

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No I don't. Sorry

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@andwho

Thank you for the insight. I have an appt with my obgyn oncologist coming up & will ask about it! Do you know the names of the creams?

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@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?

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What 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?

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