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Kath Mazzella OAM article St Ives THRIVE Magazine

The Gynaecological Health message is truly getting around

#gynhealth #vulva #women

 

https://www.stivesretirementliving.com.au/thrive-magazine/thrive-magazine-latest-issue/

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 Media release

International Gynaecological Awareness Day Media release.

Media Release 2018 2

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.

                              

Gynaecological Awareness: Update 2018

I think I’d get the attention of the world a whole load quicker for this topic of gynaecological, sexual and related mental health issues.  Seriously, at times I think, “What is it going to take?  What is going to arrest the world and point their attention to the fact that millions of women world wide are suffering and need education and support?”

Prof-Lesley-Regan
Prof Lesley Regan

The Call to Action from Professor Lesley Regan

I find my heart beat echoed in the words of Professor Lesley Regan, President of the Royal College of Obstetrics and Gynaecology (RCOG), who wrote recently…

While we hear so much about gender equality in the UK and worldwide, there are many issues affecting the health of women and girls which still remain “off-limits”. This stigma often causes women to ignore concerns about their health, while the fear of embarrassment can leave them suffering in silence. We must do more to address this and break down taboos surrounding gynaecological health.

You can read more of what she had to say on the subject here.

Some say I ‘bang on’ about this topic. The reality is that if I had my way I’d be beating the biggest drum in the world.  Yet I find I am rapidly coming  to the end of my energy.  I wonder who is going to take up this call?  Who is going to push for change?  Who is going to speak up for the women if I don’t?

Social Proof of The Need for Action

In the last month alone, I have met four women.  One woman previously had vulva surgery and has had to return to have more radical surgery.  Two women who have lichen sclerosis, a condition that can cause severe pain and discomfit in the vulva/vagina and lead to scarring. And another woman had incontinence as a side effect from her gynaecological treatment.

These are just four women, met socially over the course of a month, who spoke to me about their suffering because I raised the topic.  They are a small sample of the thousands of women I have listened to over the past 23 years. Women with Polycystic Ovaries, Endometriosis, Prolapse Uterus, Hysterectomies, Fibroids, Menopause and depression; many of whom had not shared their story with another soul.

Recently, I was contacted by a young woman who told me that because of my book Not So Secret Women’s Business and my Undies for better Understanding awareness campaign, she went and had a pap smear.  It saved her life, as there was early diagnosis of cancer.

I can see the difference that I am making.  I can see the difference that Professor Lesley Regan is attempting to make with the doctors in the UK.  What I need now to see is the difference that the community is willing to make. The difference needs to be on the ground level to shift the attitudes around this topic.  We need a groundswell of action from women demanding greater education and support if we are going to see any real investment in this area.

The Action to Take

The end goal from my perspective is:

  • Access to information and education, teaching correct terminologies, risks and symptoms, so that the community (both men, women and children) can make more informed decisions when consulting with medical professionals.
  • Resourcing and support of awareness campaigns, like the International Gynaecological Awareness Day, to help to create greater awareness and unify the public and medical communities.
  • And shift in community attitudes towards talking about taboo topics like this, to be more inclusive and open – we need to be able to share our struggles and our victories.

The saddest scenario for me is that a woman should live her life, give of her body to sustain other lives, then die of a condition that was preventable or suffer her whole life without another person understanding her pain and suffering.

In Closing

As I am reflecting on my race, my greatest concern is that there will be no-one to hand the baton to when the time comes for me to finish. That without my voice and constant knocking on doors this topic will slip back into obscurity.  Women, and the men who support them, I call on you to take up this baton.  To write to your local members of parliament, to get involved in hosting events for the International Gynaecological Awareness Day and where you have capacity, to volunteer and support your time to activities that support women who are experiencing these issues.

In closing, I want to express my excitement at being able to meet with Professor Regan and Mr Hani Fawzi, Vice President of Global Health while I am in London.  I am excited to have Jeannette Preston and Neelam Hera, Health Advocates from the UK, coming with me to strengthen the voice. You can rest assured, I will be strongly advocating for RCOG to promote and encourage participation in the International Gynaecological Awareness Day on 10 September.  Thereby, bringing both the medical community and the public together to break down the stigmas and taboos surrounding gynaecology.

 

Why Vulva needs to be in your vocab

Its wonderful to see others now speaking about this important issue for all women and for men to better understand the correct terminology.

Check out this blog post.  A great read for all.