Informative Warning for all women (long)
Hi to all you lovely VP'ers,
Long time lurker/commenter, first time poster. I have done the search thing, and the FAQ thing, but I still worry this might have been posted before by someone else. If it has, mods, or if you feel it is inappropriate for this community, please feel free to delete. If not, then this is something I feel we all need to read. I am not promoting the support group named herein for any gain whatsoever, I am simply trying to get this story and this information to as many people as possible. I feel it is my duty-of-care to both inform myself, and to disseminate information to others. I also must note it most definitely is *NOT* me.
And thanks to the author of this piece, who it seems is Kath Mazzella, the founder of the support group mentioned in the story below, for being so brave to tell the story of your life. *is humbled*
I have had to deal with silence for a long time. Telling my story gives me the opportunity to break the silence with vulval cancer. It has taken me seven long and very difficult years to get the courage to share with you my story and my experience of vulval cancer.
For those of you who may not know, and I have been amazed how many men and women don't know, the vulva is part of the female genitalia.
Can you, for a moment, begin to imagine what it would be like to be faced with losing the most intimate part of your body in a society that never discusses vulvas, and believing you are the only woman that this has happened to? This has happened to me. I soon found that this has happened to other women in the world but we have suffered in silence because no one talks about it.
I want to share my story with you to help break this silence. Now you must wonder what would drive a woman to speak publicly of such an intimate experience. It’s because I feel so passionate about this subject. I have felt betrayed, isolated, sad, frustrated and very, very angry at a society that doesn’t seem to care that this has happened to me. I hope that, by speaking about it, other women can learn from my experience.
My life between 1988 and 1994 was a series of stressful events. I was working full time, with three teenaged children from a previous marriage. My father had died of cancer, and my mother and sister were diagnosed with breast cancer. My other sister became a quadriplegic, and her husband, unable to cope with the situation, left her on three occasions.
I tried to take care of everyone in the family. At the same time I went through an early menopause at age 39 with erratic periods.
I went to my GP and had two Pap smears that were abnormal, and I had laser treatment to my cervix. I did not question what an abnormal Pap was. I don’t remember being told that I had wart virus (HPV). I don’t remember being told that the wart virus was a risk factor for both cervical and vulval cancer.
One day I found a lump next to my clitoris. During the next 18 months I went to 2 GPs and 2 gynecologists because I was worried about it. My GP was not concerned about the lump but sent me to a gynecologist because of my irregular periods.
This gynecologist assured me that such a lump was common and of no concern. He said that if it bothered me during sex then I could go back to the local GP and have it cut out. He did not have the equipment in his office! As he was so blasé about it I thought that I was just complaining about nothing, and that there were a lot of women out there like me.
I went to a Women’s Health Center to find out how common it was as my mother was worried. Although the female doctor was concerned about the lump in my vulva, I found out later that she did not even bother to mention in my medical record that I had a lump in the vulva!
I went back to the GP for a referral to a female gynecologist. She told me the lump was not cancer, but because I had seen so many doctors about it and it was obviously worrying me so much, I should go home and think about whether I wanted to have it removed.
The lump was bothering me more each time I had sex, so I had it removed in the hospital. Three days later, while alone at home recovering, the gynecologist phoned and told me that the lump was cancer and that I needed to see a gynae-oncologist as soon as possible.
I was devastated to hear this news on the phone, with no one there to comfort me. The lump had been there for 18 months and I had trusted the doctors because I thought that they knew what they were doing. If I couldn’t trust these four doctors, whom could I trust from now on? I felt betrayed.
I had never heard of a gynae-oncologist. If I had of known that there was such a person, I would have asked for one during my 18-month search.
My husband Tony and I watched as the gynae-oncologist drew on the board how he was to remove my clitoris, vulva and lymph glands. Surely this was not happening. I was terrified. I soon realized how totally and absolutely ignorant I was of my anatomy and of my own gynecological health.
After my radical vulvectomy, all I wanted to do was to live. I had to have six weeks of radiation treatment.
I remember being given a mirror in the hospital to have a look at what had been done to me. The worst horror movie in the world had nothing on what I had to witness of what my genitalia looked like after the operation.
I didn’t know of anyone else who had this done. I would wake up thinking it was just a nightmare. It was my nightmare and was not going to go away. The nights were the worst. I am sure I cried day and night for a month.
I felt totally isolated from society. As you can well imagine, my whole life was tipped upside down. I would look in the mirror and see gaping holes in my groin through the sides of my underpants. I worried about what my husband was feeling about it, how he would look at me and feel about me, with gaping holes in my groin, no clitoris and no vulva.
You may be wondering at this stage if I can still have sex. I was told by my gynae-oncologist that the skin there is very thin so I have to be very careful.
Yes, I have a vagina. Yes, I can have sex, and yes, I can actually have an orgasm, if that is what you want to call it. Maybe it is a figment of my imagination, but, after lots of long hard work, I can have an orgasm just inside the vagina. I choose not to have sex anymore due to the pain, due to the burning, due to the mutilation.
Like most men, Tony wasn’t keen on having any sexual or emotional counseling. And as for me, all the counseling under the sun will not repair the damage, thicken the skin, or stop the burning. When my husband gets aroused, my mind and body just want to reject him. on the other hand, my body is yearning just to be caressed.
When I walk too far, what is left of my vulva burns. I cannot pick up heavy things. I cannot sit for long periods of time, as the blood flow though my groin becomes congested. All of this affects my concentration.
I was desperate to find out if there were other women who had shared my experience. I decided to put a small advertisement in a national women’s magazine seeking other women who had experienced vulval cancer and 30 women replied! They seemed to find solace and comfort in sharing their experiences. one woman wrote : “Thank God at last I have someone to speak to”, and this was 30 years after having had her clitoris and vulva removed!
I was told that vulval cancer happens to women mostly 80 years old and over, but most of the women who wrote to me were 50 or under. Not all these women had had their genitals removed, as it seemed that they had been diagnosed early.
But unless we all know the symptoms, how can we seek diagnosis? one of the reasons I speak about this issue in public is that I believe that awareness, knowledge and early detection are so important.
Although the incidence of vulval cancer is 1 in 100,000 women and is extremely rare, it does not mean that that it should be ignored. These statistics do not include women who have pre-cancerous conditions of the cervix and vulva who have operations that leave them with similar effects after surgical mutilation.
I felt that something had to be done to support these women in Australia and so I formed a support group called Gyn Awareness Information Network (GAIN), which aims to:
- Create a positive environment in which women can share their concerns with other women who understand
- Create awareness about the less well-known gyn cancer concerns through National Gyn Awareness Day
- Discuss some of the potential causes of gynecological cancers and the importance of correct diagnosis;
- Arrange for support for these women, during and after a gynecological operation
- Establish sharing of information between the group, health care professions, community & government
- Assist in breaking down some of the barriers of talking about sex issues
- Develop a take-home package for women after surgery so that she has information about services available when she is ready for it during her time of recovery, even three months after her operation.
In many countries around the world, women’s genitalia and cycle of life is rejoiced and recognized as the most powerful and miraculous part of a woman: it is where all life begins. So why, in our “advanced” society, do we silence what we are essentially biologically given?
Whenever I speak publicly about this, I have with me an Australian flag. It is a symbol of my struggle with silence. I feel that I have climbed my highest mountain to shout out to the world that this silence must be broken.
I hope that you have gained some insight as to how we can create more awareness in our community about all gyn issues.
Although you might feel it is a tragedy, in many ways it is not. Personally I have overcome my inhibitions and my lack of confidence as a woman, and I have grown much stronger, with more confidence than I would ever have believed possible. My breaking the silence about vulval cancer has given me back my power as a woman.
Readers wishing to know more about vulval cancer and other gynecological issues can go to the Gynaecological Awareness Information Network (GAIN) website: www.gynsupport.com
Long time lurker/commenter, first time poster. I have done the search thing, and the FAQ thing, but I still worry this might have been posted before by someone else. If it has, mods, or if you feel it is inappropriate for this community, please feel free to delete. If not, then this is something I feel we all need to read. I am not promoting the support group named herein for any gain whatsoever, I am simply trying to get this story and this information to as many people as possible. I feel it is my duty-of-care to both inform myself, and to disseminate information to others. I also must note it most definitely is *NOT* me.
And thanks to the author of this piece, who it seems is Kath Mazzella, the founder of the support group mentioned in the story below, for being so brave to tell the story of your life. *is humbled*
I have had to deal with silence for a long time. Telling my story gives me the opportunity to break the silence with vulval cancer. It has taken me seven long and very difficult years to get the courage to share with you my story and my experience of vulval cancer.
For those of you who may not know, and I have been amazed how many men and women don't know, the vulva is part of the female genitalia.
Can you, for a moment, begin to imagine what it would be like to be faced with losing the most intimate part of your body in a society that never discusses vulvas, and believing you are the only woman that this has happened to? This has happened to me. I soon found that this has happened to other women in the world but we have suffered in silence because no one talks about it.
I want to share my story with you to help break this silence. Now you must wonder what would drive a woman to speak publicly of such an intimate experience. It’s because I feel so passionate about this subject. I have felt betrayed, isolated, sad, frustrated and very, very angry at a society that doesn’t seem to care that this has happened to me. I hope that, by speaking about it, other women can learn from my experience.
My life between 1988 and 1994 was a series of stressful events. I was working full time, with three teenaged children from a previous marriage. My father had died of cancer, and my mother and sister were diagnosed with breast cancer. My other sister became a quadriplegic, and her husband, unable to cope with the situation, left her on three occasions.
I tried to take care of everyone in the family. At the same time I went through an early menopause at age 39 with erratic periods.
I went to my GP and had two Pap smears that were abnormal, and I had laser treatment to my cervix. I did not question what an abnormal Pap was. I don’t remember being told that I had wart virus (HPV). I don’t remember being told that the wart virus was a risk factor for both cervical and vulval cancer.
One day I found a lump next to my clitoris. During the next 18 months I went to 2 GPs and 2 gynecologists because I was worried about it. My GP was not concerned about the lump but sent me to a gynecologist because of my irregular periods.
This gynecologist assured me that such a lump was common and of no concern. He said that if it bothered me during sex then I could go back to the local GP and have it cut out. He did not have the equipment in his office! As he was so blasé about it I thought that I was just complaining about nothing, and that there were a lot of women out there like me.
I went to a Women’s Health Center to find out how common it was as my mother was worried. Although the female doctor was concerned about the lump in my vulva, I found out later that she did not even bother to mention in my medical record that I had a lump in the vulva!
I went back to the GP for a referral to a female gynecologist. She told me the lump was not cancer, but because I had seen so many doctors about it and it was obviously worrying me so much, I should go home and think about whether I wanted to have it removed.
The lump was bothering me more each time I had sex, so I had it removed in the hospital. Three days later, while alone at home recovering, the gynecologist phoned and told me that the lump was cancer and that I needed to see a gynae-oncologist as soon as possible.
I was devastated to hear this news on the phone, with no one there to comfort me. The lump had been there for 18 months and I had trusted the doctors because I thought that they knew what they were doing. If I couldn’t trust these four doctors, whom could I trust from now on? I felt betrayed.
I had never heard of a gynae-oncologist. If I had of known that there was such a person, I would have asked for one during my 18-month search.
My husband Tony and I watched as the gynae-oncologist drew on the board how he was to remove my clitoris, vulva and lymph glands. Surely this was not happening. I was terrified. I soon realized how totally and absolutely ignorant I was of my anatomy and of my own gynecological health.
After my radical vulvectomy, all I wanted to do was to live. I had to have six weeks of radiation treatment.
I remember being given a mirror in the hospital to have a look at what had been done to me. The worst horror movie in the world had nothing on what I had to witness of what my genitalia looked like after the operation.
I didn’t know of anyone else who had this done. I would wake up thinking it was just a nightmare. It was my nightmare and was not going to go away. The nights were the worst. I am sure I cried day and night for a month.
I felt totally isolated from society. As you can well imagine, my whole life was tipped upside down. I would look in the mirror and see gaping holes in my groin through the sides of my underpants. I worried about what my husband was feeling about it, how he would look at me and feel about me, with gaping holes in my groin, no clitoris and no vulva.
You may be wondering at this stage if I can still have sex. I was told by my gynae-oncologist that the skin there is very thin so I have to be very careful.
Yes, I have a vagina. Yes, I can have sex, and yes, I can actually have an orgasm, if that is what you want to call it. Maybe it is a figment of my imagination, but, after lots of long hard work, I can have an orgasm just inside the vagina. I choose not to have sex anymore due to the pain, due to the burning, due to the mutilation.
Like most men, Tony wasn’t keen on having any sexual or emotional counseling. And as for me, all the counseling under the sun will not repair the damage, thicken the skin, or stop the burning. When my husband gets aroused, my mind and body just want to reject him. on the other hand, my body is yearning just to be caressed.
When I walk too far, what is left of my vulva burns. I cannot pick up heavy things. I cannot sit for long periods of time, as the blood flow though my groin becomes congested. All of this affects my concentration.
I was desperate to find out if there were other women who had shared my experience. I decided to put a small advertisement in a national women’s magazine seeking other women who had experienced vulval cancer and 30 women replied! They seemed to find solace and comfort in sharing their experiences. one woman wrote : “Thank God at last I have someone to speak to”, and this was 30 years after having had her clitoris and vulva removed!
I was told that vulval cancer happens to women mostly 80 years old and over, but most of the women who wrote to me were 50 or under. Not all these women had had their genitals removed, as it seemed that they had been diagnosed early.
But unless we all know the symptoms, how can we seek diagnosis? one of the reasons I speak about this issue in public is that I believe that awareness, knowledge and early detection are so important.
Although the incidence of vulval cancer is 1 in 100,000 women and is extremely rare, it does not mean that that it should be ignored. These statistics do not include women who have pre-cancerous conditions of the cervix and vulva who have operations that leave them with similar effects after surgical mutilation.
I felt that something had to be done to support these women in Australia and so I formed a support group called Gyn Awareness Information Network (GAIN), which aims to:
- Create a positive environment in which women can share their concerns with other women who understand
- Create awareness about the less well-known gyn cancer concerns through National Gyn Awareness Day
- Discuss some of the potential causes of gynecological cancers and the importance of correct diagnosis;
- Arrange for support for these women, during and after a gynecological operation
- Establish sharing of information between the group, health care professions, community & government
- Assist in breaking down some of the barriers of talking about sex issues
- Develop a take-home package for women after surgery so that she has information about services available when she is ready for it during her time of recovery, even three months after her operation.
In many countries around the world, women’s genitalia and cycle of life is rejoiced and recognized as the most powerful and miraculous part of a woman: it is where all life begins. So why, in our “advanced” society, do we silence what we are essentially biologically given?
Whenever I speak publicly about this, I have with me an Australian flag. It is a symbol of my struggle with silence. I feel that I have climbed my highest mountain to shout out to the world that this silence must be broken.
I hope that you have gained some insight as to how we can create more awareness in our community about all gyn issues.
Although you might feel it is a tragedy, in many ways it is not. Personally I have overcome my inhibitions and my lack of confidence as a woman, and I have grown much stronger, with more confidence than I would ever have believed possible. My breaking the silence about vulval cancer has given me back my power as a woman.
Readers wishing to know more about vulval cancer and other gynecological issues can go to the Gynaecological Awareness Information Network (GAIN) website: www.gynsupport.com