Blog Posts - Womb Cancer Support UK

#GiveWombCancerAVoice

28/9/2018

Someone asked me recently why I still talk about womb cancer all the time. After all, they reasoned, I no longer have it and its over 8 years since I was diagnosed so why don’t I just forget about it and get on with my life.

The simple answer if – I can’t forget about it. I am living with the long term consequences of treatment and every day when I wake up and struggle to put my lymphoedema compression stockings on it is a reminder, as if I needed one, that womb cancer came into my life suddenly, without warning and ruined my life. Womb cancer will always be a part of my life.

I also want to make sure, through the work I do with Womb Cancer Support UK that other women are not left feeling alone and scared when they hear the words “Sorry, but you have cancer” Through the support WCSUK offers in our private Facebook group, we make sure that no woman faces this alone.

But above all, I want to make sure that all women, of every age, shape and size know about womb cancer. It’s the most common of the gynaecological cancers and the fourth most common cancer to affect women so why don’t they know about it? Why are women still being diagnosed with a cancer they have never heard of, just like I was at the end of 2009?

I’m not the only womb cancer patient turned awareness advocate – there are more and more of us willing to stand up and share our story to help raise awareness. In the absence of a national awareness campaign, we have to if we want women to know and be aware of womb cancer.

Together, we are stronger and together we will #GiveWombCancerAVoice.

Physiotherapy advice from Leah Dalby

26/9/2018

Awareness of cancer, is an almost everyday experience for me – usually, as a physio, but sometimes as friend or family member, desperately hoping for knowledgeable and kind care for someone I love and occasionally, terrifyingly, wondering if it’s my turn.

I hope this will be useful and is written from my experience as a 52 year old woman, who loves being a physio., mostly working with people who have or have had cancer. I am enormously indebted to the people who have trusted me with their precious bodies and minds and who have taught me so much.

Abdominal surgery, radiotherapy & chemo can have a massive impact on the person with a cancer diagnosis and also on those who love and care for them.

It’s common for people to describe themselves as ‘disfigured,” or “unattractive,” be wary of touching or looking at their tummy,** not always have a full understanding of what exactly has been removed, replaced or affected and unsure whether to hope I can help or not.

Fascia is a connective tissue just under the skin. Around the muscles, in between the muscles and amongst our organs. Around nerves, blood vessels and lymphatics, becoming periostium, the outer layer of our bones – it’s almost everywhere in the body! It embraces the muscles so they can work efficiently and when we move, structures can slip over one another smoothly.

When we have surgery, an injury or radiotherapy, the fascia can be scarred and get stuck – you may know someone who has had painful adhesions, someone with altered bowel movements, tightness in their legs, has developed a “bad back” or even tight neck/shoulders after abdominal surgery These things sometimes happen because the fascia is an extensive system, throughout the body and if it gets stuck in one place, other parts of the body will have to compensate. A jam on the motorway can have impact in other parts of the country!

“Hands on,” treatment can make an enormous difference to the feel and look of scars. Importantly for some people, it can be healing to have someone interested in their scar and keen to work with it. Not repulsed or scared by the changes.

It interests me to see how often the person’s “heart” seems to heal as their body responds to treatment and their outlook stretches: optimism, hope and dreams start to re-emerge. Bowel function and sleeping may improve and other parts of the body restricted by the scar tissue move more freely.

As I am confident to treat the person’s body, that can improve confidence at home, either with sexual or sensuous expression or with vigorous “messing about” with children or pets.

Intimacy encompasses a broad spectrum and for some people, using a pH balanced vaginal lubricant maybe useful (I am not allowed to recommend brands as a physio, but I hear that Yes, Yes, Yes is popular + apparently safe for oral sex)

Sam Evans, who I “met” on Twitter, shared the Jo Divine health brochure with me which some people have found useful – and they open up the conversation, if the person wants to have it! I’m frequently shocked to discover that I’m the first health care person to ask…

I have known several people who have found a silky playsuit can be useful as it can allow good access, but also some covering of the body. Pretty lingerie isn’t a hospital accessory, either.

If your surgery has not been via the abdomen, but all internal, you may still have scarring that would benefit from treatment and some Women’s Health physios will be able to do this for you. Radiotherapy can also cause enduring changes in the tissues which may benefit from treatment. Sam and others with expert knowledge of sex toys may be able to advise you better than me on which vibrators etc may be most useful (and maybe fun,) for you.

Exercise (movement and stretching), breathing well, eating and sleeping well and relaxing are important, but maybe not as important as choosing what it is you really want.

Looking after the pelvic floor muscles is really important – they are the bottom of our pelvic basket and can work in harmony with the abdominal muscles. There are lots of adverts for incontinence pads, but please, if you have any leaking of urine or faeces, when you are laughing, coughing, sneezing, bouncing etc get your GP to refer you to a Women’s Health physio to teach you how to do these and check that you are doing them effectively. (When you are passionate about Women’s Health issues, you just want everyone to be continent and having the best sex life they want so it’s not an embarrassing topic for us)

Over the years, I have found that people who have had more than one episode of surgery, had radiotherapy, had lymph nodes removed or have had wounds that are slow to heal or have been infected are more likely to need “hands on “ treatment, so if you have previously had say a C-section or your appendix removed, or a joint replacement or breast or heart surgery, that may be relevant to you – but not necessarily. I write this to share my experience, not to keep anyone awake with worry.

Lastly, I see lots of very vulnerable and sometimes smelly scars under people’s tummies – we sit so much in our culture, it’s not easy to see the area and it may be numb, so please take care with dabbing dry after washing and check for bites with a mirror.

Please feel free to email me at www.leahthephysio.co.uk if you think I can help or you can teach me something. Thank you.

Read all about it - unless it's about womb cancer!

24/9/2018

Knowing that the printed media, especially magazines, work months in advance I have been trying since the beginning of this year to get some publicity for womb cancer.
I have contacted various independent journalists and magazine and newspapers, many of who have not even bothered to reply to my emails. I have women who are willing to talk about their diagnosis yet still it is so hard to get any publicity for womb cancer.

It sadly seems that womb cancer doesn’t have the same sort of media friendly attraction as other cancers. Why don’t all cancers get the same level of awareness?
I told one journalist that we had lost 3 #PeachSisters to womb cancer at the beginning of the year and she asked me if the families would be willing to talk to her for a story. I told her that I had little contact with the families and that it wasn’t my place to ask them. She said it was a pity as someone dying from cancer was always a “good story”.

Sadly, the dead can’t talk to the media and share their story which is why we are working hard to raise awareness and do it on their behalf.

We have lost 5 #PeachSisters so far this year to womb cancer – 5 women who were Wives, Mothers, Daughters, Sisters etc.

It is because of them and all the others we have lost over the 7+ years since we started, that we do what we do here at WCSUK.

We will continue to shout from the rooftops about womb cancer because we care and because we want to see change.
We want women to be listened to and not have their symptoms ignored.
We want women to get the help and support they need after diagnosis.
We want women of all ages, shapes and sizes to know about womb cancer.
We are here to #GiveWombCancerAVoice

Cancer steals your identity.

22/9/2018

You hear the words "I'm sorry but you have cancer" and suddenly you go from being a Mother, Wife, Teacher, Firefighter, Lawyer, Doctor even to being a cancer patient. All your plans and dreams get put on hold and sometimes even get pushed aside for ever.
There is no longer any normality in your life. Your days become filled with appointments, scans, tests, treatment and even when you don’t have any you are counting down the days until the next appointment or scan.

If you are lucky you have family and friends around you to support you and look after you. Sometimes though, you just want to be alone. You don’t want reminding that you need people to do things for you. You get tired of having to rely on others to do things you used to do for yourself without a second thought.
If you live alone and have no support structure around you it can make it so much harder to cope. The feelings of not having anyone to help can make dealing with treatment so much harder.

Even when treatment has ended, things sometimes don’t get any better. The feeling of abandonment can be hard for some patients to deal with when the safety net of regular appointments end. Some have likened it to being “left out to dry” or forgotten about.

Sometimes patients rush back to work too soon in an effort to feel more like the old you but this can sometimes have a detrimental effect. Our bodies have been through a lot and it can take a long time, both physically and emotionally to recover so it is important to remember that and listen to your body. It can be hard to try and take a step back again once you have returned to work but found it too much to cope with. Better to wait until you are fully ready before returning.

Some patients also face pressure from family and friends to “move on” after treatment and this can also cause problems. Friction in the family is the last thing you want when trying to deal with cancer and everything that throws at you.

Finding support is a useful way of dealing with everything. Talking to others who have been through a similar diagnosis and who “get it” really does help. Whether that be in a group setting or via an online group – find what works best for you and don’t struggle on alone.

Above all, don’t let cancer take over your life completely. See it as a phase that you work through and come out the other side, which you will do eventually. Things change; people change. We have to accept that and learn to grow from it.
You will always be you though.

My story of a womb cancer diagnosis by L.P

20/9/2018

A guest blog post from another Peach Sister.

We were in the first year of our marriage in 2017 and our diary was fast becoming full of appointments for the start of IVF, our dream of becoming a family was becoming very real and we both felt excited but nervous at the same time. I am in a same sex relationship and being 34 at the time, I wanted to carry our first child, my wife is a little younger than me, and in my head she still had “more time”…

Speak to any couple, and they will tell you that the whole process with IVF is quite exhausting, you give them every part of you, and you’ll do whatever they want because you want that hope of being able to have your own child. A month or so before looking at dates for our first try of IVF, I was told I had polyps, and for the best success rate, I was advised to have them removed. At the time, I was waiting to start a new job, so I wanted to have this done before taking up my new role. I got booked in and everything went ahead. I had a follow up with my consultant five days later, he was happy with my procedure and gave me a course of oestrogen tablets to take until my next appointment, after which he would be in touch with us to discuss IVF dates.
24 hours later we were watching TV and my mobile rang, to my surprise it was my consultant calling to tell me to stop taking the oestrogen tablets immediately, and asked if I
was able to see him in the clinic within the next 48 hours? I could tell from his tone that this was an uncomfortable conversation for him, and without thinking, I asked him if I should be concerned. I didn’t get any reassurance other than, “can you make Friday at 8pm?” followed by a sweeping comment of “it would be explained to you in the clinic”.
The phone call happened so quickly it was difficult to explain to my Wife how alarming his tone was, as you can imagine, the following 48 hours were very worrying!

Friday 1st June 8pm had arrived, the drive from our home to the clinic, felt like the longest of my life, with very little conversation being shared. Those closest o us knew where we were going, and it was left that we would let them know once we were out. As usual the appointments overran, I knew I was the last to be seen because I had been told to come in at the end of the clinic. With each person going in, I knew it would soon be my turn. I don’t remember an awful lot of what happened next, I know there was a nurse sitting in the corner of the room that smiled at me as I walked in, and my consultant sat across from
us. He started telling me of my recent procedure, there was a lot of language that I didn’t understand, it felt like random words were being thrown at me, every word but cancer so with real hesitation I asked, “Is it cancer? Do I have cancer?” He simply nodded at me.

During this time, my consultant told me it was grade one of endometrium cancer, but “If there was any cancer to get, this is a good one to get, and the recovery rate is very good”. Believe it or not, I didn’t then breathe a sigh of relief, neither did I jump for joy – forgive me, but when you hear ‘cancer’ you think “that’s it, its game over!” You hardly think, “Oh that’s ok, its only grade one, shall we put the kettle on?”

Every three months after that, I was required to go into hospital for ahysteroscopy along with taking medication daily. I really suffered on the medication breaking into hot sweats, for what felt like 24 hours a day! Each time I had the hysteroscopy my results came back with good news, and I was starting to feel positive, and allowing myself to think about carrying our child.
My consultant gave me so much hope each time I saw him, and I was really starting to believe. In total I had 3 hysteroscopies, but later that year, in the week leading up to Christmas, I was told that the cancer had come back.
Looking back, I wasn’t prepared mentally to hear those words again, and still to this day, there is a huge part of me that feels stupid for thinking that the cancer would never return.

After hours, days, and weeks of thinking, I came to the conclusion that I wasn’t able to continue asking myself the “what if’s” of the cancer returning on the new drugs that had been offered. I knew in my heart, that I wasn’t able to hear those words again. This was the hardest decision I have had to make, but I can honestly say I took control of the cancer. I felt the right choice for me was to have a hysterectomy.

I had a hysterectomy on 7th March 2018, just over 8 months on from being told of my cancer. I am now left with the “what if’s” … “What if I hadn’t of been going through IVF?” “Would I have known something wasn’t quite right?” “Would I have acted on it?” “What if I had of tried the new medication, would I be able to carry our child?” The questions never end.
I am now 5 months on from my operation, I am grateful I am here, I am learning to understand and cope with the cancer I had, but I am also grieving that I will never carry our child. Every day I tell myself, small steps…

My womb cancer story by Dafina Malovska

18/9/2018

My name is Dafina, I am a UK citizen originally from Macedonian and I have been living in London for the past 13 years.
In November 2014, at the age of 35, I was diagnosed with womb cancer which was followed by a total hysterectomy.
My last Smear test was in February 2014 with NHS and the results were normal, no sign of anything unusual. I had never had any health issues and I always lived a very healthy lifestyle.

It all began in August 2014 when my stomach started to get very bloated. I went to see my GP a few times about this issue but she never asked to examine me or even touch my stomach to feel the bloated area. Only after the third visit did she send me to see a Gastroenterologist. They didn’t discover anything and told me that it might be the trend of feeling “bloated” after a meal and that I should take some pro-biotic yoghurt such as Activia.
The following month I went on holiday and for the first time I bled between my periods. Unfortunately, as I was abroad at that time, I put it down to the change of climate and environment. However, I also started becoming very tired and I was feeling lethargic all the time. I didn’t want to look at myself, whenever there was a mirror nearby I was trying to avoid my reflection as I looked absolutely exhausted. I started wondering what was going on with me, was I getting older? Something just wasn’t right, I was not the usual energetic, fun and positive me.
After returning from holiday, the following month I bled again between my periods and I knew this was a sign that something was really not right. I went to the GP again but this time luckily it was a different GP at the surgery and she referred me to a Gynaecologist.

The following week, I was due to visit my family in Macedonia and I decided to see a Gynaecologist there as soon as I arrived.
As part of the regular checks in Macedonia, the Gynaecologist did an internal ultrasound scan (Transvaginal ultrasound) and saw that I had a large Fibroid on my womb. She advised me to have it removed as soon as possible as it could affect my womb if I decided to have children in the future.
That last statement really shocked me. I was so afraid of the thought of an operation, I cried so much and although I was so scared and worried, the only thing that gave me the strength to book the operation was the thought that if I remove the fibroid I would still be able to have children. Although I was due to fly back to London, I plucked up the courage and booked myself for an operation in the next few days, while I was still in Macedonia, as I wanted the support of my family during this scary time for me.

During the operation, the surgeon discovered that the so-called fibroid was not a fibroid at all but was actually a 500g (17oz) tumour that was deeply embedded in the wall of my uterus. After several hours of surgery, the surgeon managed to remove the tumour but I had lost so much blood in the process. My operation was very serious and my life was at risk due to such blood loss. In fact, 2 additional surgeons were called to help to stop the bleeding during my surgery; and thank God they did!
The tumour was sent for biopsy and the results were not good. It turned out I had a rare type of cancer called Leiomyosarcoma. It was a stage 2 cancer and it had already spread into my uterus and both ovaries.
The day after this operation, the surgeon told me that I would have to have a second operation that very evening and that it would be a total hysterectomy, in order to save my life.

That was shocking news for me again, something I had never imagined I would hear, as I had always imagined having children and a family.
I asked for all available options to be explored to preserve my eggs but unfortunately as the type of cancer I had was oestrogen receptive, the doctors were afraid to stimulate my ovaries because this might cause the cancer to come back.
After discussing all the fertility options, I had to agree to undergo an immediate total hysterectomy.
My entire life changed in one day. From that point on I was unable to have children and early menopause began.

After 2 months of recovery in Macedonia I returned to London.
I went to see my GP and explained to her what had happened to me. She was very cold and just said that she was very sorry for my ordeal. My GP never asked to feel or examine my stomach at the time that I was complaining about the constant bloating.
Just to re-iterate, the tumour was 500g! This did not happen overnight! Something that large would have been identified if she had simply tried to touch my stomach at least once. I also didn’t get any information from my GP on what options or support was available for people that have been affected by cancer or what to expect in menopause and how to deal with all the effects. I bought my own books and tried to educate myself as I didn’t get any guidance on where to look for help or advice.

3.5 years later, I am cancer free and I go for regular MRI scans which I will need to continue for at least 10 years. The early menopause has not been easy to deal with and I got all the menopausal symptoms almost immediately after the surgery, such as dryness, mood swings, early osteopenia, hot flushes, low libido and all the rest… It is very hard to have to experience all these symptoms at such a young age.

This experience changed my life completely. I feel that a huge part of me has been taken away and I am now a different person physically and mentally.
After a few years of dealing with all these changes, I finally feel strong enough to openly talk about this huge issue. Women's health is a very serious topic but it is not actually taken seriously. Lots of GP's are not aware of the symptoms of any of the gynaecological cancers.

Our GP is meant to be the first point of contact if we notice that something is not right with our bodies and so basically, our life is in the hands of our GP.
The UK gynaecological health checks need to change. In 2018, the only available option we have to check our reproductive system is the simple smear test which is only done every 3 years and even then doesn’t detect all the cancers types.

What happened to me can happened to anyone else if we don’t change the way women and girls, young and old, are looked after.

The time is NOW! Early diagnosis can save lives. The BEST protection is EARLY detection!

Womb cancer – the most common gynaecological cancer that you’ve probably never heard of.

15/9/2018

Womb cancer, or endometrial cancer as it’s sometimes called, is the most common of the 5 gynaecological cancers that affect women. These are cancers of the reproductive system and are, in order of numbers of women diagnosed, womb, ovarian, cervical, vulval and vaginal.
Surprisingly, given that according to CRUK 9,324 women were diagnosed with womb cancer in 2014 there is very little awareness of it, and there isn’t even a national awareness campaign for it.

The majority of cases occur in women over the age of 50, but that doesn’t mean that it doesn’t affect younger women because it does. Sadly many GP’s seem unaware that it is a cancer that younger women can get and this can have devastating effects on any young woman who presents with all the usual symptoms and is told she is “too young” to get womb cancer. By the time she does eventually get diagnosed the cancer has often progressed to a later stage and require more aggressive treatment.

So, what are the symptoms to be aware of? Well, the most common one is unusual or unexplained vaginal bleeding. So if your periods are regular and then suddenly become very heavy or start lasting longer that could be a sign that something might be wrong. Also if you start bleeding in between your normal cycle then it needs looking into. It doesn’t automatically mean that you have womb cancer but it should be enough to make you go see your GP. They may well tell you that it’s nothing to worry about but if it persists for several months then you may need to stand your ground and push for a biopsy. At present there is no screening for womb cancer like there is for cervical cancer and the point needs to be made here that womb cancer is not a type of cervical cancer as many women seem to think. A smear test will not detect womb cancer – a smear test picks up abnormal cells from the cervix – womb cancer most often originates in the lining of the womb so unless at a well advanced stage a smear test will not detect womb cancer cells.

There are several known risk factors that may increase your chances of being diagnosed with womb cancer. The most common risk factor is obesity. Being overweight can mean that you are storing oestrogen in your body fat and it is excess oestrogen that is the driving force behind womb cancer. Women who have PCOS (Poly cystic ovary syndrome) are at an increased risk of womb cancer as are women who started their periods at an early age and those who have never had children. But bear in mind that some women may not have any of these risk factors and still get diagnosed and some may have all the risk factors and never get diagnosed.
As previously stated, most cases of womb cancer occur in older women, usually those who are post menopausal (meaning those who have finished their periods) but it does also affect younger women. I was diagnosed at the age of 46 and was told I was on the young side to get it. I know of several women in their 20’s & 30’s who have been diagnosed and at least 2 who were diagnosed before the age of 20 so it is vital that all women, whatever their age, understand and are aware of womb cancer. You know about checking your boobs for lumps and bumps and, hopefully know about the importance of having a smear test and knowing about womb cancer is just as important.

As most of you know by now about a year after my diagnosis I started Womb Cancer Support UK. We are a national not for profit awareness and support organisation. There was no dedicated womb cancer support or awareness organisations at the time and I figured there must be other women out there who felt the same way I did and who wanted to be able to talk to other women who understood what we were going through.
I was right, there was. The Facebook page I started back in April 2011 now has almost 3,000 likers and we have almost 250 women in the private support group we set up. The website gets around 1,000 hits a week and we are slowly spreading awareness about womb cancer. We started out as an online space for women who had been diagnosed to come together and support each other but it soon became apparent that there was a total lack of awareness of this cancer so our dual priority now is to offer support and raise awareness.

So hopefully now you know a bit about womb cancer. Please don’t ever think it won’t happen to you – it might not but being aware of it might make all the difference. The earlier it is detected the better the outcome.
Always, get any unexplained or unusual bleeding checked out, please don’t ignore it.

When you think you are the only one.

12/9/2018

Warning – contains graphic details.

When I was bleeding at my worst, I used to think I was the only one that was like that. Ever since I started my periods aged 10½ they had been heavy and long and painful. I was told by a GP when I was 15 that my periods would settle down when I got married and had children. They never did, plus I never did have any children as I know now that I was probably infertile.

The bleeding got worse the older I got. I would go for weeks and then months with excessively heavy bleeding. Then stop abrupbtly for weeks and then months and then suddenly start again.
I never went to see a GP because I was always scared they would tell me that I had something serious - like cancer!!! So I put up with everything – longing for the day the menopause arrived and it would all stop.
I had no close female friends that I could talk to about it – I never really spoke to anyone about it, not even my Mom.

A post in our private FB group a few days ago reminded me of all this when one of the ladies mentioned that she used to wear incontinence pads because she used to bleed so heavily. I thought I was the only one who had to resort to using them.
Then another mentioned about always having to carry not just spare knickers when she went out but a spare pair of trousers too. Again, I thought I was the only one.
I remember we went on holiday to Spain many years ago and my suitcase was half full of super absorbent night time pads because I wasn’t sure if the ones in Spain would be good enough to hold my tsunami of blood.

Another woman joined the conversation in the FB group and said she was in a private group for women with anaemia and many of the women there were talking about having really heavy and prolonged periods and being ignored by their GP’s. She said she wanted to raise the issue of womb cancer but didn’t want to scare any of them and I think back to when I was going through all this and how scared I was about going to see a Doctor because I thought I might have cancer.

Cancer is a scary thought and many people don’t like to think about it or that it might happen to them but according to CRUK statistics, 1 in 2 people will be diagnosed by 2020. Now that is a scary thought.

Since I started WCSUK I have always believed that prevention is better than cure and that is why we try to focus on raising awareness of the symptoms and risk factors.
The main symptom of course is heavy and prolonged bleeding; bleeding between your normal periods and any post-menopausal bleeding. However, time and again we hear from women who have suffered with this, often for years because their GP has failed to take it seriously.

I have heard from women who have been told they are too young to have womb cancer; that they are over estimating the amount of blood they loose; that they are just stressed or suffering with anxiety; that what they are experiencing is normal; that they are just going through the menopause etc.

Having to change a tampon or pad every 5 minutes is not normal. Bleeding for months on end is not normal. Feeling a large clot rip away from the lining of your womb and slip down your vagina and into your knickers (and then down your leg whilst waiting for a bus as happened to me on several occasions) is not normal. Nearly dying due to severe anaemia and having to be admitted to hospital for several blood transfusions (but not being seen be a gynaecologist during the 2 weeks you were there – as happened to me) is not normal.

We need GP’s to start taking our gynae health issues seriously. Women’s lives are at risk here. So many women who come to us ended up with a late stage womb cancer diagnosis because they were no listened to and their initial symptoms were ignored.
This has to stop.

If you have been diagnosed with womb cancer then I urge you to talk to your female family and friends about it. Make sure they know about the symptoms and that they don’t ignore any of them. It might be uncomfortable for you to talk about it but I’m sure you would rather do that than have to comfort a Sister or best friend when she has just been told that she too has womb cancer
.
The only way to raise awareness is if we talk openly about it.
Please #GiveWombCancerAVoice.

Why I started the International Gynaecological Awareness Day by Kath Mazzella

9/9/2018

This is a guest blog post from Kath Mazzella who comes from Australia and is the person behind International Gynae Awareness Day on 10th Sept.

There were five major events that led me to create the International Gynaecological Awareness Day.

Diagnosed with Vulva 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. And 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 was birthed.

The key messages about this day are:
1. Bring together the medical profession and community for the purpose of greater education, awareness and sharing of experiences.
2. 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.
3. 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.
4. 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:
1. 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.
2. Join the Facebook Page, https://www.facebook.com/KathMazzellaUBUCampaign/ join in the fun!
3. Make the decision to celebrate the International GYN Awareness Day on 10th September.
4. Book Kath to come and speak to your group or to do an Undies for Better Understanding Workshop with your community or corporate group.

Why we have to start talking openly about gynaecological issues!

5/9/2018

If you had asked me several years ago to talk openly about my female reproductive system then I would probably have blushed profusely and clammed up. However, since being diagnosed with womb cancer back in late 2009 and having my female bits seen by more people than I care to think about, I’ve certainly become a lot more open to talking about gynaecological issues.

I’m not a prude by any stretch of the imagination but talking openly about things like this just wasn’t really something I felt I needed to talk about in general day to day life!! I had suffered with severe heavy bleeding for many, many years but it never crossed my mind to talk about it with anyone, other than occasionally my husband. It wasn’t even something I discussed with my Mom.

For reasons I won’t go into now, I put up with excessive heavy bleeding for around 35 years until I eventually ended up in hospital, severely anaemic and needing several blood transfusions in May of 2010. I soon discovered that once the NHS has you in its grasp it’s hard to escape!!

Appointments with a Gynaecologist followed and that’s when the dignity went out of the window. From then on, it was a case of calling a spade a spade, or rather a womb a womb!! I discovered that I had several large fibroids and an MRI scan eventually discovered the womb cancer.

One thing I have come to realise over recent years is the lack of knowledge that the vast majority of people have about their own bodies, specifically their reproductive organs – and that includes men as well as women. Sex education in schools has been lacking for many years – infact I don’t think we had that much of it either and I went to school in the 70’s.

The use of silly euphemisms for our sexual organs is something that is a real bug bear of mine. Is it any wonder that young women (and men for that matter) don’t know where a vagina is on an anatomical diagram when most people use silly terms like lady garden or pussy! Also the fact that many seem to confuse the vulva with the vagina – if you can’t even get that bit right then you really need to buy yourself a medical textbook and do some homework.

If women can’t talk openly and use the correct terminology then how on earth are they going to know if anything is going wrong with their reproductive and sexual health? Knowing the facts is the first step to empowering yourself and being in control of your own body.

From menstruation to UTI’s and pregnancy to STD’s– women and young girls need to know the facts and understand what is happening with their gynaecological health. It has to start at a young age, preferably before a young girl starts to menstruate so she doesn’t thing she is suddenly bleeding to death the day she starts her first period.

Be empowered. Know your normal - and make sure you know your vagina from your vulva.

My story of Lichen Sclerosus and Vulval Cancer by Clare Baumhauer

3/9/2018

Although we are a womb cancer support & awareness organisation I am happy to give space here on the website blog to women who are raising awareness of other less talked about gynaecological cancers.
This blog post originally appeared on The Womb Project website which is a side project of mine. Clare Baumhauer has given me permission to share it here to help raise awareness.

"It's hard for me to tell my story; it is personal, but if I can help just one person it will be worth it.

It all started years ago as a child and I easily went to the doctors more than 10 times about the same symptoms and saw different doctors.
I was told it was cystitis, then thrush, multiple times.
They should have noticed there was a difference between my symptoms and thrush or cystitis.

I got fed up with being told the same things. I had the same symptoms, itching and burning, and white silvery patches.
As a small child I remember having to wee in the shower as it was so painful. I would cry myself to sleep at night because the itching was so intense sometimes..
In my 30’s I had blood tests, swabs and was also told it could be early menopause.

It turns out I had a skin condition called Lichen Sclerosus for years and it wasn't noticed. LS has stopped me from doing so much. Just walking and sitting some days was unbearable
Eventually a couple of years ago I noticed a tear in the same area that happens when you have a baby - I just thought it would heal. I had my smear test and nothing was said and it came back clear once again.
Then in January 2016 it had become an ulcer type thing. It started to get bigger with a raised edge.

So in March I went back to the doctors. I saw a different Doctor, who examined me and at first thought it was herpes, and asked how many partners I had had, I said I’d been with my husband for 26 years, so it obviously wasn't that.
But then she said it could be vulval cancer! I'm glad now that I saw her, someone else might have missed it again!
I was urgently referred to hospital and I was told I had Lichen Sclerosus and vulval cancer.
I had never heard of either conditions!

In May 2016 I had the surgery to remove tumour from my perineum, but unfortunately they couldn’t get clear margins so I had radiotherapy but unfortunately it had spread to my lymph nodes so I then had 2 further operations on my lymph nodes and more radiotherapy.
Which put me straight into the menopause and I now have lymphedema in both my legs, pelvis and abdomen, among other side affects.

I'm very angry the Lichen Sclerosus was missed for so long, if it had been caught five years ago or more it might not have turned into cancer - there's only a five per cent chance of that happening with vulval Lichen Sclerosus but if I had been using the steroids and having regular check ups and been aware of Vulval cancer as well as GP's and nurses at spotting the symptoms things could have been so different.

A lot of people have the same thing and they're always told it's thrush or herpes, or they to young!
I'm more shocked than angry that the doctors and nurses didn't know about it, they were actually asking me questions about it because I knew more than them.
Now my GP will know what it is if anyone has similar symptoms, but unless a doctor has seen it, people like me will keep slipping through the net.
It's not just affecting older people either, but a lot more younger people are getting it now. I've not missed a smear, they came back clear, so it is important to keep going and questioning them. If nurses are trained in Lichen Sclerosus and vulval cancer then so many lives could be saved! Or in my case might not of spread.

Just don't be embarrassed. Go to the doctors, and question why you are having to go back and forth.
I’m now trying to raise awareness of both these conditions as they are very rare and not talked about!
I’m now 1 year cancer free which I’m lucky and grateful for but all the side affects are life changing and the depression and anger is still there!
Why me? Why not me?

I now need to focus my anger into raising awareness and make sure these conditions get talked about, as cancer charity’s, especially the gynaecological cancer charities, don’t do enough for vulval cancer."

For more information about both conditions check out these links.
Lichen sclerosus UK awareness
Vulval Cancer

September is here again.

1/9/2018

Well, here we are again. September has arrived – doesn’t seem a year since we had a month long “peach-fest” of womb cancer awareness raising.
Mind you, we do raise awareness every single day of the year but we do like to make a special effort during September. This year will be our 8th month long womb cancer awareness campaign and as usual we will be looking for your support and help to spread the word.

As well as all the usual awareness raising we have 3 mini campaigns running through-out the month. The first one is our #PeachTeaParty for womb cancer awareness. No one holds tea parties for womb cancer like they do for breast cancer or ovarian cancer so we decided it was about time that changed.
Several of our ladies are holding a Peach Tea Party, either at home inviting family and friends or at work with colleagues etc. There are actually 2 happening today – one in Dundee and one in Norfolk and there are more planned throughout the month. Keep an eye on the FaceBook page for some photos.

Campaign No.2 is one that we have been highlighting for a couple of years. The #NeverTooYoung campaign aims to show that despite what many GP’s tell their patients, womb cancer can and does affect women of all ages and you are #NeverTooYoung to get it.
Campaign No.3 will focus on the emotional and psychological side of a cancer diagnosis – something that is often overlooked and yet is something that a lot cancer patients struggle with. Many get little help of support. So the #GiveWombCancerAVoice campaign is giving womb cancer patients a chance to share how a cancer diagnosis has affected them.

Make sure to follow us on Facebook and Twitter and please share our posts and help us spread the word about womb cancer. As the most common gynaecological cancer it needs more awareness – as you know I strongly believe that it deserves an awareness month of its own and should not be lumped in with the other gynae cancers, some of whom already have awareness months of their own. Womb cancer gets little attention as it is and we are determined to make sure it gets more.

We have lost 5 Peach Sisters this year, and it is in their memory, and that of all the other Peach Sisters we have lost over the past 7+ years, that we continue to do all we can to raise awareness.

Please join us and help spread the word.

Why September Matters For Womb Cancer Awareness.

16/8/2018

It’s not long now until the start of September, which for us means just one thing – Womb Cancer Awareness Month. Some call it gynaecological awareness month but I’m going to tell you exactly why we here at WCSUK believe that womb cancer deserves and needs an awareness month of its own.

Womb cancer is the most common gynaecological cancer (and the 4th most common cancer that affects women) yet gets very little awareness despite over 9,000 women being diagnosed every year (according to CRUK) Cervical cancer has an awareness week at the end of January and a cervical screening awareness week in mid-June. Ovarian cancer has its awareness month in March. But nothing for womb cancer!!
So in September 2011, the year we were formed,   we decided to follow on from our American Sisters and take September and turn it “PEACH” – which if you don’t know by now is the awareness colour for womb cancer.

Now, if you know your cancers, then you will know that there are actually 5 gynaecological cancers; womb, ovarian, cervical, vaginal and vulval. Sadly the last 2 get even less recognition than womb cancer does but as womb cancer is the most common of the 5 we at WCSUK believe that it deserves a month of its own and that is why we will continue to use September as womb cancer awareness month. Lumping it in with the others and calling it gynaecological awareness month is not giving womb cancer the full exposure it needs. By the way, we also think that vaginal and vulval cancers deserve more awareness and we are glad to see an new organisation which has recently been set up to help raise awareness of vulval cancer here in UK, not forgetting the amazing  Kath Mazzella in Australia who has been raising awareness of vulval cancer for over 20 years.

So, this September we will once again be running a month long awareness campaign, adding to the awareness we raise on a daily basis. After all, more women are diagnosed with womb cancer than either cervical or ovarian yet many have never heard of it before being diagnosed. It is still seen by many in the medical profession as something that only post-menopausal women get yet we know from the ladies who come to us that it can affect women of all ages.
Sadly, there are more and more younger women being diagnosed and it’s often very hard for them to get a firm diagnosis because, despite presenting with all the usual symptoms they are told by their GP that they are “too young” to be diagnosed. You are #NEVERTOOYOUNG to get womb cancer.

This September, as in the previous 7 years, WCSUK will be doing all we can to raise awareness of womb cancer. Please look out for our social media campaign and we hope you will help us to spread the word. We may only be a very small grassroots organisation but we are determined to #GiveWombCancerAVoice.

So many questions - so few answers!

11/7/2018

When I started WCSUK back in April 2011 I never thought for one minute that I would still be doing it over 7 years later. I had hoped that there would by now be no need for us to keep raising awareness, day in and day out, of the most common gynaecological cancer.
A cancer that affects more women than either ovarian or cervical cancer; cancers that most women have at least heard of even if they don’t know the symptoms of them.

Around 25 women a day (according to CRUK figures) are diagnosed with womb cancer yet from what I hear from women who contact WCSUK, many of them had never heard of it until they were actually diagnosed, much like myself over 8 years ago. I would have hoped that things would have changed by now but sadly it seems not – but why?

Why is womb cancer not as well-known as ovarian or cervical cancer? Why is there not a national awareness campaign? Why are there not awareness leaflets in every GP waiting room? Why are women having to fight to get their symptoms taken seriously? Why are women who get womb cancer blamed for somehow bringing it on themselves for being obese when only 41% of cases (according to CRUK) can be attributed to being overweight? Why is there still this misconception by GP’s that womb cancer only affects older, post menopausal women? Why are women who get womb cancer told that it’s a “good cancer” to get? Why is it left to a small group of womb cancer survivors to keep on shouting about this? We do what we can but it’s never going to be enough.

I wish I knew the answers to all these questions because it would make it all so much easier.

There is a cancer organisation called “My name is not cancer” – well, for me it is. Like I said I never expected to still be doing this, 7+ years on. I never thought there would be a need for me to keep doing it.

Thankfully the support side of WCSUK needs very little work because the private support group virtually runs itself. The women in there are a wonderful bunch and very support of each other especially when a newly diagnosed lady joins the group.

WCSUK has never been about me, despite what some people think. I don’t like attention and the only reason I post about my own experience is to raise awareness. I know my case is a complex one and thankfully many women who get diagnosed with womb cancer go on to make, if not a full recovery, then at least a very good one.

One of the things I try to do is empower women to ask questions and keep asking until they get the answers they need. No one told me that I could ask questions. I was made to feel that I had no choices; that I had to do what I was told. I felt powerless and pushed into having treatment that has ultimately ruined my life.
This is why I do what I do with WCSUK.

This September’s womb cancer awareness campaign will be our 8th and it is getting harder to find ways to spread the word and raise awareness. Social media is great for reaching out to people but it has its limitations, especially when many people are more interested in reality tv programmes and celebrity gossip.

But those of us that care enough to do something will continue to do so because we can and because we know it’s the right thing to do.

So with just over 8 weeks to go until the start of the 2018 womb cancer awareness month, we are getting ready to #GiveWombCancerAVoice, as we do every single day of the year.

Reaching the 5 year mark - by Margaret Chandler

18/5/2018

Margaret is a #PeachSister who has written guest posts for us in the past and today she shares her latest news with us.

"Earlier this week I was given the news that, as I'd passed the 5 year mark post-womb cancer diagnosis, I no longer needed to attend for hospital check ups and was being discharged!
5 year! - the landmark I didn't dare dream of reaching in the dark,early days after diagnosis, and one I found overwhelming when it finally did arrive.
What I found most overwhelming was the realisation of not only how stressful the past 5 years have been, but also how much I had evolved and changed personally throughout that period.
My consultant mentioned the psychological term 'Post- Traumatic Growth' on Monday, one first coined in the 1990's by R. Tedeschi. After briefly researching the term, I found it fitted in perfectly with what I'd experienced as a womb cancer patient.
Being diagnosed with womb cancer was possibly one of the most traumatic things to happen in my life. I'd never heard of the disease and thought I was at low risk of developing female cancers as I had never missed a smear test or mammogram. I also lived a fit and healthy lifestyle.
At diagnosis I was told I would need a total hysterectomy 4 weeks later and the operation had already been booked. Cancer to my knowledge at that time was a certain death sentence and in my mind I wouldn't be here to celebrate Christmas. The most traumatic thought was leaving my son, who had been born after 11 years of infertility treatment (although he would turn round now and call me a complete melt)
I found the physical recovery after surgery reasonably straight forward, the psychological aspect less so. This was exacerbated by the fact I was going through a surgical menopause with all its hormonal highs and lows.
A long recovery gave me chance to reflect and recognise changes I needed to make in my life, even though I was desperate at times to get back to who I used to be. I realised I'd always been a people pleaser, but now it was imperative for my future health and wellbeing to start setting firm boundaries and to live life on my own terms. I'd spent a lifetime enabling others to live their best life, now it was my turn.
So what has the past 5 years taught me?
I see the lessons as a series of paradoxes:
I have learned to say No more often, but also to say Yes to opportunities that may have passed me by before.
I am more understanding, kind and compassionate to some people, but have a distinct lack of tolerance when others complain about stuff and nonsense.
I live life more slowly and intentionally but realise time on this earth is limited and passing quickly so don't want to waste any.
I live with less fear which gives rise to experiencing more joy. Life is lived in sharp focus and beauty is found close to home, not necessarily thousands of miles away.
I no longer have a 5 year plan. life is right here, right now.
I am mindful of how and with whom I spend my life and the biggest paradox is that after surgery, no matter how many sit ups I perform I'm never going to have a flat belly, and I'm ok with that!!
I would never have chosen a womb cancer diagnosis, but through the trauma I have, to paraphrase Tedeschi, developed a new understanding of myself, the world I live in and a better understanding of how to live life.
This is Post-Traumatic Growth!
I hope you'll join me in an extra large gin!
Cheers!"

If you would like to write a guest blog post for us then please get in touch using the contact form.

Kaz xx