25F Recent Diagnosis - Feeling mortified, anxious and alone.
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medical history (story):
Diagnosed with stage 3 refractory Hodgkins Lypmhoma my final year of college. Disease was determined refractory after first line of treatment did not work. Eventually underwent autolongus BMT (March 2020). 2 years cancer free as of early June 2022.
Went in for routine pap last week, where NP noted abnormal pigmentation of vulva. She briefly asked if this was normal for me and if i had any other symptoms. I played it down slightly, but eventually noted some degree of itchiness. She suggested we could "just watch it". Feeling concerned, i asked some more follow up questions. Not only did she just not even entertain them, she proceeded to offer an optional biopsy.
This is infuriating and discouraging to me because after researching LS further online, increased severity in symptoms, and squatting down in front of a mirror, it is very very evident to me that i have irreversible damage to my vulvar area.
So, now im feeling blindsided, mortified, botched....etc. I am in signifigant amounts of pain. I never am not feeling it.
I have just been given a chance to live my life again, like a normal 20-something yr old. The only thing that kept me fighting through chemo, was the idea that i could go live life again. I just started being more comfortable in my own skin, being mentally present in intimate situations, and this is causing me to mentally/emotionally spiral to a dark place.
I could really use some encouragement, and anything that could some how reassure me that this isnt as bad as it seems right now. Also, any practical and productive recommendations for products, routines, things to avoid/adopt.
Of course, the thought of this somehow also presenting as symptoms of vulvar cancer is eating me alive. I did just have a scan of my pelvis a couple weeks ago, with no notable concerns. My pap also came back completely normal (previous one indicated slight indications of being abnormal, so we just used that as reference for next pap). Should i be encouraged by any of that? 0r does that not even matter? i want to mentally prepare myself. i have a biopsy friday
0 likes, 1 reply
NiqueAtNight Beth25female
Edited
I just found this site by accident. I have had LS since I was about your age and am in my early 50s now, so I could be the right person to respond to your post. Sorry it couldn't be sooner. Did you receive the results from your biopsy yet? You should DEFINITELY be encouraged by the pap coming back completely normal. In the world of LS, we celebrate all normal paps!
First, I want to congratulate you on beating cancer!!! I had a cousin who died of Hodgkins Lymphoma at age 17 and I went to work for the American Cancer Society for about a year in her honor. During the time I was working there, my father was diagnosed with prostate cancer and I felt fortunate that I was able to provide a lot of information and help him beat it. It is no small feat that you were able to beat it! Definitely do NOT focus on the possibility of vulvar cancer. My understanding is that when treated properly, LS can be kept under control. (More on this below).
It sounds like the doctor you saw may have not had the most knowledge about LS. That has been my experience often with LS, but I kept moving around until I found some who were both kind and knowledgable. Your doctor should have asked you if you were experiencing any pain and I am sorry that you are!!! By the time you are reading this, I hope you have been treated for the pain you experience!
I didn't have any symptoms for many years, just some discoloration, but now that I think about it, I was always itchy... However, I itch over my entire body, so it might not just be the LS. My condition has unfortunately progressed and I feel that my condition worsened because it wasn't explained how critical it is to treat it with Clobetasol, Triamcinolone Acetonide Ointment (.1%) or a similar topical ointment twice a week. (Get the ointment and not the cream; the cream can burn)! I just learned the importance of treating the condition last year! Now that I do that, the itching, burning and tearing of the skin is much less than before. Crisco oil actually helps with the itching too, but keep in mind that oils do stain clothing.
If you look at another post, you might find that I have shared some of the same words and advice and I want to be honest about that. I am here as an older person who has had this condition for more than 25 years and is still doing well! I'm not going to lie to you; the condition hasn't been easy and I have to go to the gynecologist every 6 months. However, I don't focus on the negative. I focus on what I can do and what I can fix, not what I can't.
As a life coach who specializes in mindfulness, I just want to offer this advice... Nothing can be solved by worrying about it. In fact, if you understand the Law of Attraction, worrying about things can attract them to you.
The condition is not one of the worst you could have; it truly can be managed. Your life is and will be so much more than just this condition. I've dealt with a lot of negative things in my life, including a car accident (a guy ran a red light) that nearly caused me to lose an eye, but I have always bounced back stronger. I feel that you do have a new lease on life after beating cancer, so I'm sure you can put this into perspective!
I'm here to help others deal with difficult situations; please reach out if you need support!
Only the best to you!