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.

sandra1954 | @sandra1954 | Oct 8 4:19pm

In reply to @jenben59 "Sandra, I do not have the same medical problem you are experiencing, but I have had..." + (show)

Jennifer I so appreciate your reply thank you

Denise | @denisestlouie | Oct 9 6:57am

Many people avoid doctors,. I was one to or 15 years.

The medical establishment is traumatizing. Doctors are sometimes horrible humans. Fortunately that's rare, but I found a few. Medical doctors don't really spend time with us to explain fully what is happening. Most of what I know about my cancer came from PubMed then ask the doctor his opinion

I'm glad you found this forum. It's been very good for me.

Denise

charlotte12 | @charlotte12 | Oct 9 2:35pm

In reply to @denisestlouie "Many people avoid doctors,. I was one to or 15 years. The medical establishment is traumatizing...." + (show)

I too had some bad experience with doctors. I'm very thankful we have the forum and each other. I also do research online to learn about my cancer.
Your comments, sharing your experiences and feelings often eased my anxiety
and worries and helped me understand my symptoms and deal with this disease.
The forum has been my best support system. We hold each other up. Thank you all for your
contributions.

Helen, Volunteer Mentor | @naturegirl5 | Oct 9 4:37pm

I haven't avoided seeking medical attention even when I've encountered medical providers who seemed rushed and impatient. It's very difficult to open up to a medical provider under those conditions and particularly if you haven't seen that provider before. I worked at a clinic at one time on a memory care team and the neurologist rushed, was impatient, and often interrupted the patients. I talked with him more than once about that as I don't think he had much awareness of the dynamic that was happening. When I met with the patients (and often the family) I learned to take it slow. That has more to do, unfortunately, with the medical system that they work for and it's been this way for a long time. I don't anticipate that changing anytime soon.

Fortunately, all of the medical providers I have encountered since I began this cancer journey have spent enough time with me so that, I felt heard, were empathic, and skilled. All of these medical providers have been at Mayo Clinic in Rochester. I do feel heard and well cared for by my primary care physician in my hometown.

Mayo Clinic Connect is my best support system too.

mdr3 | @mdr3 | Oct 10 5:11am

In reply to @naturegirl5 "I haven't avoided seeking medical attention even when I've encountered medical providers who seemed rushed and..." + (show)

My surgeon at a notable Boston Hospital (along with his "support staff") was a nightmare. What did I do? Simply connected with another hospital and another surgeon who I saw for follow-up once the second surgery (second being the operative word) was done. I feel 100% confident that I am getting the appropriate follow-up, which, in many ways, is even more important than the initial treatment. Trust of medical staff is of utmost importance. That and leaving the past behind, except as a good lesson.

andwho | @andwho | Oct 25 10:51am

In reply to @bobette1 "@tymayo I too am dealing with vulvar cancer. In the past 6 months I have had..." + (show)

I also was diagnosed with vulvar cancer in may 2023 stage 1b. No surgery. Radiation & chemo. 2 pet mri’s showed all clear. Still in fear! I have never felt the same below, is that normal now? No pain just feeling different! Skin still sensitive & irritated at times. Anyone else feel the same? Looking for answers. Thank you

bobette1 | @bobette1 | Oct 25 12:52pm

In reply to @andwho "I also was diagnosed with vulvar cancer in may 2023 stage 1b. No surgery. Radiation &..." + (show)

I am experiencing the same....feeling different, sensitive and irritated at times. I think this is my new normal. I hope to be in a relationship with a man again at some point but I am not sure sex would ever be the same again. I feel mutilated down there.

andwho | @andwho | Oct 25 1:57pm

I have a very supportive spouse and we have not had sex since diagnosis. Not sure if we ever will. Thankfully He understands my feelings. Do you have any other late side effects you experience? Thanks for the communication!

cookercooker | @cookercooker | Oct 26 10:18am

In reply to @andwho "I have a very supportive spouse and we have not had sex since diagnosis. Not sure..." + (show)

I had anal cancer some 13 years ago and got radiated for it, along with chemo. That cleared it up, but the radiation destroyed by vagina. Now I have vaginal stenosis and can't have sex. I recommend that you seek medical attention for the sensitivity and irritation now to avoid stenosis setting in. There are creams you can apply. Check it out!

andwho | @andwho | Oct 27 9:03am

In reply to @cookercooker "I had anal cancer some 13 years ago and got radiated for it, along with chemo...." + (show)

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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