Endometrial Cancer Awareness

[Ginger32]

Hi everyone.

It's the first time I've written a Blog on here,but i have noticed there are a lot of Blogs and Questions about Cancers of various types.

In October 2012 I was diagnosed with 'Endometrial Cancer'. I had never heard of it before, in simple terms it's 'Womb Cancer'. Needless to say I was devastated, as I had had Leukaemia when I was 11 so i never expected to ever get Cancer again. I am now 36.

I want to make everyone aware of this type of Cancer as it is not really 'out there' for women to know about.

Prior to me being diagnosed I had had problem Periods from day 1. They were heavy, extremely painful and ruined my life basically. In the past 3 years or so I had been back and forth to the Doctors and had been given Tranexamic Acid, and Various pills with different levels of hormones in them to try and help. They didn't. I was also experiencing extreme cramping pains in my Pelvic area which had me doubled up in pain. Again I was back at the Doctors who then, 1 year later referred me to the Gynae Dept at my local hospital. Again over another 18 months or so, I was given more and more pills, and a couple of Ultrasound Scans. I said I was at the end of my tether by this time and asked for an alternative treatment, which I was told would be the Mirena Coil. I didn't want this as I wasn't comfortable with having something inside me and that i already had enough problems inside my body and if that didn't suit me it would have to come out anyway. I then asked to have a Hysterectomy but was told that my BMI was too high, so I asked what the other option was, which was an 'Endometrial Ablation'. This procedure involves a small abllon being inserted vaginall into the womb and filled with hot liquid to coterise the womb lining. It is painless and usually involves going into hospital to a day surgery when you can go home a couple of hours after. I went into hospital for this a week later, where a Biopsy was taken during the procedure. I was then sent home, and a week later I was called back to the hospital, and that is when I was diagnosed with 'Endometrial Cancer'. I had a full abdominal hysterectomy, with my womb, ovaries and tubes being removed. I am 36 and have no children.

If I hadn't have pushed for an alternative to Pills and the Coil, I may have found out about the Cancer too late. I was Lucky.

*******MY SYMPTOMS : SEVERE PELVIC CRAMPING

EXTREMELY HEAVY & PAINFUL PERIODS

BLEEDING IN BETWEEN PERIODS

LOSS OF APPETITE

ANAEMIA

I wanted to post this to help other women, and hope that medical investigations are taken more seriously and that people aren't just passed from pill to pill etc.

[wendydee]

That's really interesting. So glad you got diagnosed and treated. Hope things go well for you from now on! I had many of those symptoms, particularly painful, heavy periods, anaemia, cramping, bleeding between periods. We had fertility issues also, although we were told it wasn't necessarily me or him....just no reason! However, I had borderline ovarian cancer, I am now wondering whether there was any endometrial problems too. I had endometriosis, so....I don't know :-S

Thanks for an interesting post. The Eve Apoeal is the charity which deals with endometrial cancer, I think, so maybe you could contact them and spread your message via their network too.

All the best with your recovery

Love Wendy xx

[Ginger32 in reply to wendydee]

Thanks Wendydee.

We also had fertility issues some years ago too. i'm so glad you have given me the name of a charity that deals with Endometrial cancer as i want to do a campaign locally but couldn't find anyone to help. I'm hoping to go on Radio lancashire..

I'm fit and well now thank you, just hospital check ups for the next 5 years.xxx

[wendydee in reply to Ginger32]

Ovacome does deal with endometrial cancer but so does The Eve Appeal (spelled properly this time!) I think Eve Appeal does fact sheets, but you probably know as much as the info on them. The focus of Ovacome is mainly awareness raising and support, the Eve Appeal focus is mainly fundraising for research. It's worth a look though. All the best for your next check-up. Let us know how you're getting on.

Love Wendy xx

[Ginger32 in reply to wendydee]

Hi Wendy.Hope you're ok. I have contacted The Eve Appeal in London and they have sent me loads of leaflets, as I mentioned that I was going to start an Awareness Campaign for Endometrial cancer and that I am hoping to go on my local Radio Station in the next few months. I spoke to a lady called Liz Engel who asked me to email her as September is Gynaecological Cancer Awareness Month and she is in the process of organising the Campaign. She also mentioned to me about going to London to go on the Radio to talk about it and share my story too. I'm also planning on organising a Fundraiser Event next year too. My appointment went well, and my next check-up is July. I'm still feeling very tired and sleeping during the day sometimes, and in a lot of pain with my joints, but generally I'm doing well. congratulations on your 10 year Anniversary. Take Care,Love Lisa xx

[Hidden]

Hi there Ginger... I had a lot of pain from periods and basically, they wrecked my life too. Even the pain from a burst fallopian tube when I had an ectopic pregnancy pails in significance to what I endured each month. I'm sorry you've had to go through so much but I'm glad that your cancer has now been detected. It's frustrating when your words seem to be blown in the wind when you know yourself that something's very wrong. Thanks for getting the word out because the more people know about it, the more there's awareness. Take very good care. x

[jazz007]

Thank you for sharing your story! As someone who has endometriosis and extremely painful periods, it is good to be informed!

Thanks

Jan

[poppy69]

Wow, thank you for sharing your story. I am currently 3weeks post operation from having a hysterectomy for what was originally thought to be ovarian cancer having had a large tumour found on my ovaries. However, since the operation the gynecologist has informed me that I had stage 4 endometriosis, together with this tumour, which he couldn't understand how it had got this far undetected. I am now waiting for the results from the operation, to confirm if it is cancer or not. Like you I had suffered irregular, heavy and painful periods from an early age to a point where it was just part of life. However I was lucky enough to have two children. I went to my GP initially due to unexplained weight loss and swelling.

[gemma31]

Hi 5 yrs ago I went to GP with regards to really heavy period pain which went through my back, abdomen, and legs the ruled out Endometriosis because i was on the contraception injection which had stopped my periods and that is how they would have treated me I had ultra sound scan, trans virginal scan, MRI scan, nothing was found. They put me on this trial drug and it shuts down your womb and puts your body through fake menopause which at the time I was only 25/26 yrs old I put on so much weight, which I am still struggling to get off. They then said that they wanted to put a coil in which they did and it was like they were disturbing something and I had stabbing like pains it settled down after a week then I had normal period, then black stuff, then I had an what felt like I was in labour for 8 hrs not good, so carried on kept bleeding for 2 half yrs later goes doctors has every blood test done, nothing, all scans got done again nothing, ends up in hospital x rays nothing i have IBS according to the hospital, gets referred to Gynecology apparently my coil has slipped down which was causing the bleeding and the pains which means that It has not been working for the past 3 yrs and they say this is why I have been suffering. So I told them this has been going on way before the coil. So the lining of my womb was only 2mm thick without the coil doing its job properly so i shouldn't be having any type of bleeding what so ever. They have taken a sample of my womb, it has been a week since my appointment does this mean that everything is ok and nothing serious and don't understand it all. How long would I wait if the result are bad?

[Ginger32 in reply to gemma31]

Hi Gemma, it sounds like you've had a tough time. I'm no expert and I don't want to give you the wrong information and it may be different depending on which hospital and district you are under etc. But I would have thought if it has been a week and you haven't heard anything that your test results haven't come back yet. I would have thought that if they do find anything that you will be contacted as soon as possible. I hope things are ok for you. Keep me posted.xxxx

[wendydee in reply to gemma31]

Try going on the Ovacome website ovacome.org.uk. there are details on there of the BEAT symptom tracker, which may give you some more details of what your symptoms are and a way to record them. Or if you are really worried, you could try ringing the Ovacome helpline, details are on the website. In my view, if there was anything that was really worrying your Gynae specialist, they would have called you to arrange your next appointment. Good luck

Love Wendy xx

[Ginger32]

Thank you all for your messages. It's great to know I'm not alone. Best wishes to you all.xxxx

[gemma31]

thanks every1 xx

[Ginger32 in reply to gemma31]

Hi Gemma, I was just wondering how you are,as you were waiting some results in your last message. I have been thinking about you. Hope you are well, xx

[Butekaz]

Hello, I run Womb Cancer Support UK, (WCSUK) which is a support and awareness organisation. I started it in April 2011 and we have a website, FB page and do twitter. We support women at all stages of their cancer diagnosis and are also involved with raising awareness of this cancer.

I started WCSUK because there was no UK based womb cancer support groups. I was diagnosed at end Dec 2009 and had a total hysto followed by chemo and then radio therapy. It's left me with long term side effects - I now have an underactive thyroid, lymphedema, cognitive and memory problems and severe fatigue, amongst other things.

As September is Womb Cancer Awareness month we are busy raising as much awareness as possible - we've just come back from an event in Birmingham.

Check out the website and come on over and say hello on the FB page.

wombcancersupportuk.weebly....

Hope you are doing ok now and have finished your treatment.

Butekaz

[Butekaz]

Hello, I run Womb Cancer Support UK, (WCSUK) which is a support, information and awareness organisation. I was diagnosed at the end of 2009, aged 46 and had never heard of it before. sadly, not many women have heard if it before they get diagnosed with it.

WCSUK aims to not only support women who have been diagnosed but also to raise awareness of this type of cancer, especially amongst younger women as there seem to be many more of them being diagnosed these days.

I am in the process of registering the organisation here on HealthUnlocked but in the meantime you can find us on Facebook or you can check out our website wombcancersupportuk.weebly....

Regards Kaz