Found out yesterday - clueless and panicking & feeling doomed.

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Hello,
Not sure what to say so I apologise ahead of time for what is likely to be a long and convoluted post. Here goes:

I have been having problems with my periods all my life - I am 61 now and have been looking forward to the menopause since I was 12.  I have not been through the menopause as far as I know at all yet.  I was diagnosed with PCOS in my 30s when my son was seven.  My periods have always been irregular and heavy and I think this was a feature of being very stressed for a long time.

I didn't realise until my 50s that I was a masking autistic person - I just thought I was bad at coping with life.  As it was I was doing pretty well considering.
But the constant stress took its toll and I have lived with severe anxiety, reactive depression and hornonal imbalance near enough all my post puberty life.

I was diagnosed with type 2 diabetes in 2019 and reversed it within three months by changing what I ate and I have kept it stabilised without meds ever since.

I have been exercising and trying to lose weight but although the change in diet stopped the creeping weight gain and I stabilised and maybe lost a tiny bit I am still obese as my consultant helpfully pointed outa few weeks ago.

So yesterday after having a biopsy done a couple of weeks ago I attended our local well woman clinic expecting to have a hysterectomy and a polyp and fibroid removed.  Instead they said there was no need to do the hysteroscopy because the biopsy was enough and I had (I think she called it 'serious) endometrial cancer and the next step was to have an MRI and then probably a full hysterectomy and radiotherapy and chemotherapy.

My husband was with me - I have severe anxiety anyway so he is my comfort blanky in a way.  

I am not really sure about anything.
I have decided I am dying and will not have long on the planet.
That sounds overly dramatic I know - but part of the type of autistic person I am means I am terrible at coping with uncertainty.  Hope is worse for me than no hope.  I can cope with worst case scenarios and then anything that turns out better is nice surprise and a bonus.

My mental health will not deal with expecting the best and then having to deal with potential setbacks.

That said - I am someone who has been afraid of dying since I realised it was a feature of life at the age of six.  So this is all pretty massive - obviously - I need to spend time with people who are dealing with this and who are coping - basically I think I need to normalise what feels to me like a completely unreal situation.

I hope my pessimism doesn't cause anyone else any negative feelings. Part of being autistic is often saying the wrong thing and hurting people's feelings without the tiniest intention of doing so and this is a very sensitive situation for all of us and the last thing I want to do is cause a moment of discomfort to anyone.  But I am so stressed out at the moment I am not able to do the extra masking around people.  I feel very raw and like my world has spun completely out of control.

I also ramble on a lot as you can tell.

I am one of those people that if I get asked "How are you?" I actually give a full answer.

  • Just had a call from the consultant.  They are putting a Mirena Coil in this afternoon and I should have my MRI within two weeks and then they will have an oncology meeting to decide my plan.  I asked him to refer me to a dietician and he is doing that so I can work towards getting my oestrogen producing fat cells reduced as much and as quickly as possible.

    Still petrified but at least things are happening.

  • Hi HeadlessChicken

    I wonder if it could have been "serous" that was mentioned, which does sadly sound very similar to "serious".

    If you'd like to read more at your own pace, I found the "understanding womb (endonetrial) cancer" publication from Macmillan great at explaining and demystifying things

    Here is the link to the publication in various formats:

    www.macmillan.org.uk/.../understanding-womb-endometrial-cancer

  • Hi  

    Welcome to the womb group, there are lots of lovely ladies here with experience and knowledge to support you. Good news that they are getting going with a coil for you. This is sometimes done as a watch and wait type scenario at first but your team will advise you of the next steps. The booklet that  mentioned is excellent and I used it a lot. It's a good idea to write something for your profile so that members can reference your information for their replies and to save you repeating yourself. To do this just click on your username then profile and don't forget to save. You can read any of our profiles by clicking on our usernames.

    I understand your personality quite well as I worked with someone very similar. This will indeed make coping with this news very hard as it is not the familiar and totally out of your routine. https://www.autism.org.uk/

    The above link is for the Autistic Society and it may help to have a look at their website and whether they can offer any support or information post diagnosis and tips for how to cope. Forgive me if I am giving you information you already know about.

    Keep in touch with us here as we will want to know how you are getting on. There are also others that have been started on similar first line treatment. Best wishes to you,

    A x