My family is affected by a genetic disorder called Ehlers-Danlos Syndrome, or EDS for short. The part of my body most affected has always been my hips, knees, and feet. When I was younger I had flat, wide feet and age has just made them more so. Unfortunately, as they get wider and flatter, they also hurt. I have often told Andrew that I feel like the little mermaid from the original story, not the Disney version. One day as I was surfing blogs by other people that have EDS I came across an entry where another woman talked about feeling like the little mermaid, and dreading getting out of bed in the morning because it would hurt. I showed the entry to Andrew and this is the conversation that ensued.
Me: See, this woman feels the same way as me. Walking on knives, just like the little mermaid.
Andrew: You don’t hurt as much in water either. Didn’t you say it doesn’t hurt as much when we go to the pool?
Me:. Yes, the water makes me hurt less. Supports my weight more I guess.
Andrew. You know, I don’t think what you have is Ehlers-Danlos at all.
Me: Oh really??? What is it then?
Andrew: You actually have Adaptive Mermaid Syndrome. Your family must have once been mermaids. Now that you are on land your body has trouble adapting.
Me: So, I am actually a mermaid then?
Andrew: Yep, and you have AMS, not EDS.
So there you have it. Once upon a time my family lived in the ocean as mermaids. Apparently I need to get back to my roots…
I am writing this post because of a conversation Andrew and I had. He was telling me that he was at a meeting where one of the discussions was about supporting cancer patients. He mentioned my own struggle to find support and the wealth of information available online, if you know where to look. None of them had heard of sites like Cancer Buddies Network or Gyn-Gals. Most, in fact, hadn’t even considered that the Internet might be a good source of, not just information, but support for someone dealing with medical issues. I found both groups helpful, but due to the rarity of my specific type of cancer Gyn-Gals became a major resource for me. It still is.
In February of 2009 I went to Vancouver to have a prolapse repair done. Due to the fact I have Ehlers-Danlos Syndrome, and the extent of the prolapse, I opted to have the surgery performed in Vancouver by a urogynecologist.
While doing the surgery Dr. Wilkie noticed lesions on my minor labia and biopsied a section. A week after having my prolapse repair done I found out I had HPV related VIN III. VIN III is also called “squamous cell carcinoma in situ”. I had cancer of the vulva. I was devastated and desperate for information. The BC Cancer Agency was amazing and sent me everthything they could find on vulvar cancer,but none of the information I was finding told me what I needed to know. What was going to happen when they removed the affected area? Was I still going to be able to have sex? Would I still be desireable? How painful would it be? Then I found Gyn-Gals.
Gyn-Gals is a Yahoo Group for women who have had, or are suffering from a variety of gynecological conditions. Every woman on the list is affected in some way. There have a wealth of information on what to expect, after care, helpful products, everything you might need. Most importantly, they also provide understanding and support.
As I continue my own journey with HPV related VIN they are always there for me. I know that whether I need to have a pity party, or find out the latest treatments and possible cures, that I have a group of woment that will support me. So if you are dealing with a gynecological cancer or condition, or know someone who is, please keep them in mind. If you are dealing with cancer of any type you might want to check out Cancer Buddies Network.
You don’t have to go through it alone.
So, you might be wondering why I called myself a 1 percenter in the Highway of Deers post, or not. Either way you are about to find out. 🙂
– I can’t use hormone based birth control or hormone replace. It makes me very ill, among other things. Apparently only 1 percent of women can’t use hormone based birth control.
– I have a problem with opioid pain killers. I don’t metabolize them properly. The last time I had an opioid I went into respiratory arrest. Apparently this is a problem for about 1 percent of people. Hmmm
– The type of cancer I deal with, vulvar, accounts for about 1 percent of female cancers.
– I cannot eat citrus fruit, again about 1 percent of the population.
It is getting to the point when a doctor says, “Well, only 1 percent of the population…” I go “fuck”. I am a 1 percenter.
The biopsy results came back and I talked to my GP today. The biopsies showed VIN I in all four biopsies, and one area showing cellular division, meaning on the brink of VIN II. At this point we are not going to treat it. I will be having biopsies every four months to monitor the lesions. If the VIN progresses then we will do laser treatments. We are trying to go with the least painful and least mutilating alternative. I don’t want surgery unless absolutely necessary. Everytime I have a biopsy they will be removing some of the affected area, so hell, enough biopsies and it will be gone anyway. Biopsies are painful and take about a week to heal, but they are nothing compared to the wide local excision I underwent two years ago, and I would really prefer not to experience the burns left by a laser either. Hopefully they will soon have a vaccine to eliminate HPV.
Today I went to have a colposcopy done. That is where they take a look at my genital region with a high powered microscope. I had been concerned about an itchy spot on the perineum, apparently that was the least of my concerns. The VIN is back, and this time it is on the major labia near the vaginal entrance. It will be several weeks before I get the biopsy results, so no idea what stage it is. The stage will determine how we will deal with it this time. Last bout resulted in wide local excision of most of my minor labia. Hopefully it can be dealt with using lasers rather than surgery this time.
I am also waiting for a diagnostic mammogram and an ultrasound on my left breast. I have had two infections in it in the last six months. Apparently that isn’t normal when you are 48 years old and not pregnant or nursing. That is the breast I have had two lumps removed from. The lumps were benign and we can’t feel anything now at least.
I am just so tired of waiting for, having, and recovering from surgery. It seems every time it gets more complicated due to my numerous allergies. Blaaah
I went to see my doctor today because I had noticed an area on my perineum that was itchy. I had noticed it a few weeks back but didn’t think too much of it. I figured maybe a little hairline tear during intercourse or something. It didn’t get better though so I figured I would get it checked. My doctor and her resident took a look. There is a reddened section in one of the areas where I had the VIN III removed two years ago. I have been referred back to the gynocologist for evaluation. I cried. I am just so done. Done with surgery, done with having my genitals carved away at, done with always having something “wrong” with me. I hate it.