SUNDAY 23rd MAY 2021. 2pm -4pm
Join us to celebrate “International End to Obstetric Fistula” Day and come along to our private viewing of Award Winning “A Walk to Beautiful”. This documentary follows the inspiring work of Australian Doctor, Catherine Hamlin, and her work to treat women with fistulas in Ethiopia.
Renowned Perth Obstetrician Dr Chris Gunnell will also be guest speaking to share his volunteer experiences in Africa and witnessing the vast impacts of obstetric injuries.
Tickets can be purchased here: https://www.trybooking.com/events/landing/736798?bof=1
All profits are being donated to the Catherine Hamlin Fistula Foundation - @hamlinfistula
GAIN Inc. celebrated a wonderful 20th Anniversary High Tea at the University Club of UWA. on Saturday 19th September. The event was a great success where our guests were entertained and educated by the most amazing health professionals.
With special thanks to Dr. Susan Evans, founder of the Pelvic Pain Foundation of Australia who joined us via video link from Adelaide, Dr. Krish Karthigasu, Dr. Jodi Graham and Dr. Rose McDonnell who kindly stepped in to replace Dr. Gunnell who was unwell on the day.
Our guests had a wonderful afternoon and enjoyed a beautiful selection of sandwiches, pastries, scones and cakes. It was truly an event to remember. GAIN president Catherine and committee members would like to thank all who attended and look forward to many more future events.
Your support in helping GAIN continue to deliver gynaecological education in the community is much appreciated. We look forward to seeing you again soon.
YOU’RE INVITED! Join us to celebrate GAIN’s 20th year Anniversary!
We are hosting a high tea at the University of WA Club, with special guest speaker Dr Susan Evans. Dr Susan Evans is a renowned Gynaecologist, Pain Medicine Physician, Educator and Researcher.
She is also the founder of Periods, Pelvic Pain & Endometriosis (PPEP) Talk to be introduced to WA high schools in 2021.
Secure your ticket now!
I suspect I have had endometriosis since the onset of menstruation at 14. My pain was always debilitating. I went through multiple Drs looking for an answer in my teenage years.After many investigative procedures (but no lap) I was diagnosed with irritable bowel syndrome. That didn’t help me, at all. At 26 I got pregnant for the first time. It was a misdiagnosed ectopic pregnancy (I had an intrauterine pregnancy, so the ectopic pregnancy was over looked) which ruptured. At which time it was surgically removed. The doctor told me that the endometriosis was extensive and my remaining fallopian tube was entirely covered in an adhesion and was completely non functional. If I wanted to have children I would need to do IVF. When my husband and I were ready we did IVF and had our first son. At the six week checkup I asked the doctor (the same doctor who performed the ectopic surgery) for birth control. He laughed at me and told me I did not need birth control as natural conception was not possible. When my son was six months old, I was pregnant with my second son! At his six week check I asked (my new Doctor lol) for contraception and given my endo we decided a Mirena IUD was my best option. It never really seemed to help with pain though as I still got regular periods and they were just as heavy and painful. Until my second son was two, then my period stopped. I went for an ultrasound only to discover I was pregnant with identical twins! After the twins were born I decided I would just take the pill continuously (to avoid periods, and therefore pain) as the Mirena had also failed. I couldn’t risk any more pregnancies with four babies in three years! The continuous pill worked well for a few years but then I started to bleed every six weeks even with the pill. I consulted multiple gynecologists but their recommendation was the Mirena and they would not give me a hysterectomy as it was considered an unnecessary risk. My pain was not a factor even though I was bed ridden for a week a month and the pain was so bad I couldn’t urinate. One gynae actually told me surgical discovery was not indicated in my case as he did not feel I had endometriosis. My pain continued to increase until I was calling an ambulance and going to hospital every month. I found a hernia which turned out to be inguinal endometriosis. The endometriosis was so infiltrative that it had grown through my abdomen into my groin. I finally found a female gynecologist who agreed to give me a hysterectomy. Before surgery I tried to warn her that it was extensive, ultrasounds in hospital had revealed “kissing ovaries” (actually the medical term!) where hematomas had joined my ovaries together. I stated I would like to try keep one ovary so I didn’t go into surgical menopause. She advised me her plan was to keep both ovaries. Then she said the procedure was to take approximately 45 minutes. When I awoke in recovery she told me that that herself, a colorectal surgeon and a urologist had operated on me for 8 hours. They could not find my ovaries due to the endo. It was what is referred to as a frozen pelvis. All my organs were covered and frozen or stuck down by my adhesions. My kidneys, bladder and bowel were the worst affected. I had bilateral stents put in to keep my kidneys functioning properly. The surgeons were unable to remove all the endometriosis as it was so extensive. They had to remove my ovaries fallopian tube and uterus and I immediately went into surgical menopause. The removal of adhesions from my organs resulted in unavoidable nerve damage. I now have daily chronic pain, from the remaining endo and the nerve damage. I can’t feel well when I need to urinate and so I have to strain to evacuate my bladder which results in pain. Bowel movements cause excruciating pain. I’m waiting for an appointment with a pain clinic, I’ve been waiting six months. End of story, endo sucks. xx
I was twenty five when I was diagnosed with lichen sclerosis (LS), shortly after giving birth to my daughter. My obstetrician was the first to notice anything unusual about my vulva.
It has not been proven, but general consensus is that LS is an autoimmune condition. LS can run in families and is much more common in females than males. It usually affects the vulva and often also the anus. Only rarely does it affect other parts of the body. Onset is most common in postmenopausal women but can occur at any age, and it is a lifelong condition. Childhood onset often begins around age five. LS can be asymptomatic but usually causes intense itching. It presents as white patches of skin, sometimes with small purple spots. Over time, if left untreated, LS can change the structure of the vulva and increase the risk of vulvar cancer, which is why it has to be monitored regularly, with at least six monthly appointments, and treated thoroughly with steroid ointment.
You can find more information about LS on a clear and reliable website called CareDownThere, founded by Dr Gayle Fischer and Dr Jennifer Bradford, members of the Australasian College of Dermatologists and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. http://www.caredownthere.com.au/
When I received my diagnosis, the gynaecologist drew a diagram for me and explained that I had no labia minora. A lot of people with LS notice a reduction in the size of their inner labia; mine had disappeared altogether by the time I was diagnosed. As a teenager I checked my breasts for lumps but, (as I have largely asymptomatic LS, without itching), I never knew that I should check “down there”. I wish I had known, before I lost a private and pleasurable part of my body. Not even my GP noticed anything during my pap smear and didn’t ask me any questions when I found the procedure highly uncomfortable and was barely able to relax enough to get through it – at the time I felt guilty for being an inconvenience.
Initially, I was treated at the hospital where I gave birth, but in doing my own research I found a dermatologist specialising in vulvovaginal disorders and requested a referral. She examined me and knew immediately that my current treatment was not sufficient to keep the condition under control. She could see where I had been experiencing splitting during sex and recommended surgery to divide a fusion of skin that had left the opening to my vagina about half the size it should have been. Despite having been seen by numerous gynaecologists before this, no one suggested surgery. I was told to use dilators to stretch so that sex might become less painful.
My surgery went well, though it was confronting to see my vulva looking so “sliced open”. It has made a significant difference – for a period of over a year I was barely able to have sex at all, due to the reduction in size of my vaginal opening and involuntary muscle spasms. I am currently seeing a physiotherapist to help me relax my muscles that have grown tight in response to the years of skin inflammation and uncomfortable/painful penetration.
I think the fact that LS is a predominantly female disease, often affecting older women, in the part of her body that relates to sexual pleasure – an area so taboo I don’t think I even knew the word for vulva prior to my diagnosis – has contributed to a real lack of understanding, awareness, and knowledge in both the medical and general communities. It is an unseen and not-talked-about disease.
For a long time I felt ugly, incomplete, and abnormal. I was a new mother and, with my beautiful, healthy baby, I felt guilty for being so desperately sad. I wasn’t sure if my vulva was a valid thing to grieve over but I did feel grief. It felt so lonely and isolating to be dealing with something I could not speak of, except to my closest friends.
I still sometimes struggle with feeling less attractive and womanly because of what I know is missing. However I am also empowered. I know the names for the parts of my body that were before just “down there”. I know my clitoris is fine and I intend to follow my treatment plan. I believe that a woman should know and understand her body, without shame, and that no part of it should be a secret from herself. Every woman should own a mirror.
I know one other person with LS who was diagnosed shortly after me. She had reason for concern, asked her GP to examine her, and the GP declined, saying that it was so very unlikely and they should wait until summer to do a full body check then. I think this was unacceptable. She felt the need to see a different GP who immediately referred her to the dermatologist.
I hope that in the future GPs will more readily identify the signs of LS.
I hope that more doctors will realise the significant psychological and emotional distress that is often associated with vulvar conditions, and that patients won’t have to experience additional distress from incorrect information, or insufficient support.
I hope that women will feel empowered to know their own vulva, what is normal for them, and if something changes. And if women experience any kind of discomfort I hope they feel confident asking questions and asserting their right to be heard – and even seen.
If you would like to be better educated about the vulva, as well as http://www.caredownthere.com.au/
check out http://www.labialibrary.org.au/ – a colourful website by Women’s Health Victoria with diagrams and a photo gallery, so you can learn what’s what and see how much variation is normal.
Ending a stigma. It’s easier said than done, right? End the stigma or #endthestigma is a community launched in 2017 targeting mental health awareness. An excellent community I have previously used to help with my negative thinking patterns and anxiety at the time of a health scare I was experiencing.
My health scare was possible cervical cancer.
I am by no means the first person to raise this and countless women before me have discussed and printed their story in this area of health and how it should be normal to talk about. But unfortunately the message still needs help in order to sink in. I’m proof of this.
Each year 3,000 cases of cervical cancer are diagnosed in the UK and in 2018 930 females were diagnosed in Australia. Sexually active women aged between 30 to 45 are the highest risk.
So what is the best way to combat this? The good old smear test. A smear test isn’t as bad as people imagine, it takes minutes and could save your life.
I emigrated to Melbourne, Australia, for work nearly 2 years ago as a healthy 29 year old female. I was originally living in Manchester, UK and working in an acute healthcare setting so I was pro-active when it came to health checkups. I felt happy, settling into my new job and life in Melbourne, so my health checkups we’re pushed back a little. I felt fine, so that’s ok, right?
I finally found the time to do a routine health check and everything was all good. It was just the routine smear test to go, which was only 2 months late anyway. The age to have your first smear in the UK is 25 and I had my very first appointment on my 25th birthday, so being 2 months overdue was out of character for me.
I attended the appointment and didn’t give the results a second thought. Then the phone rang. It was my gynaecologist requesting further investigation by means of a colposcopy, biopsy, swabs and another smear. I was reassured I was now in good hands (which I still believe) and these tests are necessary as we need to be vigilant.
My mind went west.
The anxiety started and my thought pattern was like nothing I had experienced. I couldn’t bring myself to tell anyone. Out of shame? Not to worry them? Humiliation? Looking back I feel a little silly for not telling my close friends and family. Not to mention my family who were over 10,000 miles away. In the end a small handful of friends knew the loose details but I could hardly bring myself to say ‘further investigation’ ‘gynae’ ‘the big C’. I didn’t recognise myself.
Thankfully further tests were carried out and I was given the all clear. I had to have the words ‘you’re completely fine and healthy!’ said to me to actually believe it. I hadn’t failed my friends, my family or myself and especially not women. I was one of the lucky ones, but there are women being diagnosed every day who aren’t.
The people at GAIN (Gynaecological Awareness Information Network Inc) are here to help. GAIN is a non- profit organisation run by volunteers who dedicate their time to creating a world where every woman has the opportunity, knowledge, confidence & support to obtain optimal gynaecological & sexual health.
As someone who has now been through this, it’s an awful feeling when you hear a potential diagnosis of cervical cancer and its even scarier awaiting results – believe me when I say your mind will wander. If you know of anyone needing guidance or support through this challenging time, please assure them its ok to talk about it and they are only a phone call away.