The Gynaecological Health message is truly getting around
#gynhealth #vulva #women
https://www.stivesretirementliving.com.au/thrive-magazine/thrive-magazine-latest-issue/
Penis
Dare to be Vulva Aware – Women speaking out
MY VULVA CANCER JOURNEY – by Lyn Ellard
January 2017 I had a L) Hernia operation, all went well and recovery was good. In February 2017 I developed an itchy burning in what I now know as the Vulva area, I went to my GP. on another matter but told her about the symptoms I had, she asked me to do a urine sample which I did. A few days later my GP phoned me to say I had a bladder Infection and she would leave a prescription at the reception desk for me to get anti biotics and some Canesten cream. The antibiotics and cream did help for a while, but the itching and Burning still continued.
Over the months each time I went to the GP complaining of the same symptoms only to be given script for Canesten cream which I would get over the counter at the chemist attached to the Medical Centre. Sometime later in the year I noticed on the R) side of the Vulva it was very sore and felt like there was an open sore, sometime it would bleed.
Being a women and 76 years old I took the word of the GP that it must be a bladder infection and just continued on, I would use Vaseline, Canesten cream and yoghurt to ease the pain especially when I had to go to the toilet.
Never in all the times I visited my GP and complained of my systems did she ever suggest an examination of the vulva area, over the summer months it became so painful that if I was home I would go without snickers as it was comfortable without them.
It was in March after I returned from a holiday that it got so bad I could not take any more of the pain, and I had a feeling it was not just a bladder infection it had also started to swell up above the hair line of the area.
On the 29th March I went to see a new GP at the same medical centre as my usual GP was not available, she did examine me, said the vulva area on the R) side was ulcerated and not a good colour, had to do a urine test and she also took swabs.
Went back for results on the 4th April 2018, the results were all ok, but she gave me a referral see a Gynaecologist at Murdoch, the Gynaecologist phoned me to say he was referring me to a Gynaecologist/Oncologist.
On the 17th April in the evening I developed a lump in my R) groin and it was painful, in the morning the lump had moved up to the top of the groin. I made an appointment to see the new GP. She took one look and sent me to Fiona Stanley Hospital.
At the hospital they did an Ultra Sound and CT Scan. As I wanted my own surgeon I had to be transferred to SJOG Hospital Murdoch. I was admitted there on the 18th April. While I was there they did more test and also did a biopsy of the Vulva area. I was a patient for 4 days.
While in the hospital the Gynaecologist/oncologist visited me and an appointment was made to see him in his rooms on the 4th May. I received a call from the Surgeon to come and see him still not thinking much about it.
I saw him on the 26th April. My daughter Amanda came with me, he was very nice about everything, he said the results from the Biopsy was that I had R) Lymph node cancer and he said they think the Primary started in the Vulva, many people asked me how I felt, I think I just had a numb feeling and I let Amanda ask all the question she was and has been my rock over this time.
I visited the Gynaecologist/Oncologist on the 4th May, he did a biopsy under a local anesthetic in the surgery it was very painful but it needed to be done quickly. He told me the vulva area was the primary and the R) Lymph Node area was the secondary. Because I already suffer from Lymphedema he was hoping to only remove some of the lymph nodes.
I was admitted to SJOG Murdoch hospital on the 14th May. I had a R) Vulva operation where they removed all the Vulva. All the R) lymph nodes had all joined together to form a ball so I had to have all R) Lymph Nodes removed, I became very upset and angry about it all especially with the G.P. as had she checked it out sooner I may not have had to have such major surgery. I spent 13 days in hospital. I was told I would have to have chemo and Radiotherapy. After coming home from hospital every morning for 5 weeks I had to have Health Care then Silver chain to come and give me a blood thinner injection into the stomach and a flush for the vulva area.
On the 13th June I had a PET scan this had to be done before I started my Chemo/Radiotherapy treatment, it was done at SJOG Hospital Subiaco.
I started my chemo on Monday 2nd July, I have to have chemo at SJOG Hospital Murdoch every Monday for 6 weeks. Tuesday 3rd July I started my Radiotherapy at Fiona Stanley Hospital this is every day (Monday to Friday) for 6 weeks. During the Radiotherapy some days I just did not want to go and had to push myself through the treatment, it was a very stressful 6 weeks.
It was after the 4th treatment that I became very unwell in the evening, Tom (Husband) drove me to SJOG Murdoch emergency department, I was admitted to hospital for 4 days with a chest infection, I had to still go to my Radiotherapy and that week I only missed 1 appointment. I am still struggling with it all and have my angry moments towards my GP but getting better at it all.
On the 8th October I went to SJOG Hospital Subiaco for a final PET and CT scan.
Went to S.JOG Murdoch on Wednesday 10th October for my appointment with the Chemo Specialist o get my results from the PET scan. What a wonderful feeling when the Specialist told me all was good, feeling so blessed and happy with the results. I have a small node on the lungs but the specialist is not concerned at this time. I will go back to see him in February 2019 and have a CT scan before I see him. I feel a heavy load has been lifted and I can now look forward to a happy life ahead.
My advice to all women, you have the right to ask for an examination or a second opinion. If by writing my story I can save one person from what I have had to go through it is all worth it.
VERVE UP Kath Mazzella Vulva Understanding mission
https://www.verveup.com/shesaid/vivalavulva-understanding-kath-mazzellas-vision
International Gynaecological Awareness Day Progress
After our meeting on 12th July 2018 with the President of the Royal College of Obstetrics and Gynaecology and the Vice-President of Global Health to discuss their support of the International Gynaecological Awareness Day (IGAD) campaign. I am more than elated to say they have agreed to celebrate IGAD.
A short history: Jeanette Preston (UK Founder of Pants Cancers) and myself as cancer survivors visited the college in 2008 to seek support for IGAD which was the planted seed to see this day come to fruition. So I encourage others to join in the campaign to help share greater education and acceptance as said by the President that Gynaecological Health should not be TABOO. Thanking all those who have supported in the past.
Why I started the International Gynaecological (GYN) Awareness Day
Why I started the International Gynaecological (GYN) Awareness Day
by Kath Mazzella OAM
There were five major events that led me to create the International GYN Awareness Day.
Diagnosed with Gynaecological Cancer
When I was diagnosed with Vulva cancer, I endured a tremendous process of grief and personal physical and emotional struggle with first the diagnosis and then with the terrible suffering of the surgery and life post-surgery. Excuse my frankness, but at first, I was shell shocked that I had to choose between dying and living without my ‘female sacred soul’ for the sake of my family, as they wanted to cut out my clitoris, lymph glands and vulva. The first thoughts after diagnosis were, “What will I be without my genitals?”, “What about my sexual life?” and “Will my husband leave me?”, which then progressed to “What am I?” and “Where do I fit in society?”
Discovered Daughter had Endometriosis and Poly Cystic Ovarian Syndrome
Then a short time after my surgery I discovered that my daughter had Endometriosis and Poly Cystic Ovarian Syndrome (PCOS). Through ignorance, I had been unsympathetic and unsupportive of my daughter, secretly thinking ‘suck it up, princess, we all have pain with our periods’. I had little knowledge of gynaecology risks and symptoms, so I was mortified to learn that my daughter had been suffering severe levels of pain and doing that suffering relatively alone. She had joined the ranks of the millions of women in the world who suffer in silence with these conditions.
Someone Who Shared My Experience
I met a woman who had been through the same experience as me. I realised that there was healing in sharing stories and it was really important. I also realised that knowledge is power and that often the medical profession holds all the knowledge and only tell the patient what they think the patient needs to hear, not recognising that the patient might want deeper level information or access to others going through the same or similar challenge. I recognised that this needs to change. That there needs to be an opportunity for all to come together and share information.
Advertised in Prominent Women’s Magazine
Placing an advertisement in a prominent women’s magazine, I was flooded with letters from women who were suffering in silence expressing their loneliness, shame, embarrassment and frustrations. It again impressed upon me how women are geared towards communal living and needed the opportunity to come together for healing and sharing.
Started a Support Group for Women – GAIN Inc
I started a support group for women, which morphed into GAIN Inc. (Gynaecological Awareness Information Network Inc.) It was as we were building this group, that I had the thought about creating a Gynaecological Awareness Day to help break down the stigmas and barriers and bring the medical profession, men and women to the same table to share our experiences and our knowledge. As I explored this idea, Senator Amanda Vanstone informed me that I could just name the day and make it happen. So, I decided to make it an International Day and so the International GYN Awareness Day on 10th September was birthed.
The key messages about this day are:
- Bring together the medical profession and community for the purpose of greater education, awareness and sharing of experiences.
- Bring the men of our community into the picture, acknowledging that they often carry the load when their partners, sisters, mothers, aunts, daughters, work colleagues are suffering and encouraging them to gain their own knowledge of Gynaecology.
- To break down the stigmas and barriers associated with Gynaecological, Sexual and Mental Health and to bring a fresh, fun and vivid image to this topic, taking it out of the closet.
- To link Gynaecological, Sexual and Mental Health together, so we treat women holistically.
I am now looking for CHANGE CHAMPIONS who will embrace my message and run with it. If you are someone who is passionate about making a difference, willing to follow simple instructions to achieve big results, I need your help to make the International GYN Awareness Day an International reality so that we can start this conversation in every corner of the globe.
How to get involved:
- Go to kathmazzella.com/IGAD and download the IGAD Kit, which takes you step by step through the process of how to celebrate and share the message.
- Join the Facebook Page, https://www.facebook.com/KathMazzellaUBUCampaign/and join in the fun!
- Make the decision to celebrate the International GYN Awareness Day on 10 September.
- Book Kath to come and speak to your group or to do an Undies for Better Understanding Workshop with your community or corporate group.
#UBU #UndiesForBetterUnderstanding #KathMazzella #Gynaecology #IGAD #Women #Men #InternationalDay
Conscious Living Expo 2017 GYN Health
https://www.facebook.com/kath.mazzella/videos/1184763904893419/
Thanks to Patricia Hamilton and her team. It was great to have the opportunity to share our GYN Health knowledge and to listen to some of the devastating stories especially young women enduring Polycystic ovaries and Endometriosis and many searching for answers and suffering in silence. This only re-iterates the prime need for the International Gynaecological Awareness Day celebrations to not only give voice to these women, create a greater community education and support and most of all greater funding and research. I encourage you to plan your event and help promote your business though the Gynae Awareness day 2018
Outraged by SMH article – Designer Vagina’s
I have written to the SMH and am hoping that you will join me in expressing your outrage at a doctor dumbing down their explanation instead of using the right terminology for the vulva and the trend for our young women to be ordering ‘designer vaginas’.
Here is my response to this article, http://www.smh.com.au/national/rise-in-women-seeking-designer-vagina-20121120-29o3h.html#ixzz2D5xpBb4
Dear Editor
I refer to the article, ‘Rise in Women Seeking Designer Vagina’, where Dr Sonia Grover said young girls were concerned with looking different and often requested labiaplasties, a procedure to change the size and shape of the external coverings of the vagina.
Firstly, let me say that it is a sad sign of the times that our young women would want to go under the knife voluntarily and one has to ask the question, ‘Why?’ What is it in our society that has our young women concerned about the attractiveness of their genitalia? Is it that we do not have enough education about all aspects of our body and that they do not realise that every woman’s sexual anatomy is going to be different looking? Is it that there is an over-emphasis on sex in our communities that is causing an abnormal concentration of energies on perfecting the body for sex? Or is it that they have seen too many pictures that have been altered by photographic technologies, so that they are comparing themselves to an unrealistic model? I am reasonably confident to say that they have not all been lining up to show one another what their vulva looks like so they can know that they are all different!
I had major life-saving surgery due to vulval cancer 17 years ago involving the removal and remodelling of my vulva and the pain and suffering I have endured during and after surgery still haunts me. The thought that our young women would actively choose this procedure terrifies me because I know the emotional scars that accompany the physical ones.
I was recently awarded the WA Senior of the Year for my GYN and Sexual Health Awareness work, however, the one issue that I really feel I have failed to get a satisfactory outcome for is the attitude of educators and doctors/GYNs that seem too afraid to call a vulva what it really is. Schools continue to incorrectly label it the vagina. To describe it as the ‘external coverings of the vagina’ by someone who knows the difference is to misinform those very young women who are seeking surgery. To me it is the same as describing the penis as the external coverings of the testicle.
Dr Sonia, I implore you to call it a vulva so we are all clear what part of the anatomy it really is and so that when it is altered for life, these young women will know what they have lost.
I agree with Dr Sonia that, “These requests come from a lack of understanding of what is considered normal…” Surely, we can start to normalise the use of the word vulva and open the conversation with our young people so they can know that they also are normal and can appreciate their uniqueness instead of desiring to conform to an unrealistic image of what is normal.
Kathleen Mazzella OAM
Leading World Expert on Women’s Sexual and GYN Health Experiences
Join with me in insisting that they get it right, break down the barriers and stigmas associated with the use of the word ‘vulva’ and start to educate our young women that vulvas come in all shapes and sizes and what you’ve got should be treasured and valued just the way it is. Unless we speak out ladies, we will continue to be kept in the dark on these issues.
Vulva is to vagina, as penis is to testicles…so why don’t we call it what it is???
I presented at Vulval Awareness Day on Saturday. Em from 92.9 hosted and said she’s realised she’s been telling her daughters the incorrect terminology; vagina instead of vulva for the external genitalia. She said she was blown away by the information. (If only there were a thousand women there!)
Following that she went on air and spoke about the issue so that women can know the difference between the two.
Em told me the radio station had complaints about the use of the world ‘vulva’. Note: they use the word ‘penis’ all the time. Still a long way to go…