New to the club

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Hi Ladies.. I’ve been floating around here for a couple of weeks now but time to say hello. After three years of faffing with GP and hospitals and my first consultant in 2019 telling me not to bother with a hysteroscopy as I’d “just end up getting an infection” I finally managed to get a hysteroscopy last year. Unfortunately, they didn’t have the right kit there and then to remove a tiny polyp (4.5mm!) so I had to wait another couple of months in line to try again.

That one failed as they couldn’t get access. The consultant said it would be OK to leave it as it was “benign and innocuous” but as I was still experiencing very heavy periods and relentlessly anaemic they’d be happy to put me on the waiting list for another attempt under general. Another 4 months wait...

This was at the start of Feb and all went well. It was really tiny and the nurse on waking up reiterated how tiny it was.. "Job done" I thought and carried on with my life. Until 8 weeks later I got called back.

The tiny little polyp showed Complex Atypical Hyperplasia. It took that long as the consultant sent it back to Pathology twice as he couldn’t believe it. So now I’m on the “as soon as” list for a total hysterectomy (hopefully keeping ovaries due to my relatively young age) and it should be in the next couple of months - Pre-op is booked for the end of April. Now I’ve got to this stage I couldn’t have more trust in my Consultant as he’s been outstanding in answering my questions but I can’t help but think this could have been investigated earlier. I never got an infection from the three hysteroscopies that I ended up having.

It couldn’t have come at a worse time. I’m self employed and I’ve already lost two years of my business to Covid and this has now wiped out this year's season too (I have a very physically demanding job carrying a lot of heavy kit). So now I have ZERO income for the third year in a row. Doing my best to tread water at the mo but it's hard without any other focus and worrying about finances as well as the loss of my womb. I'm hoping this has still been caught early enough.

I'm child-free which I've been told may have contributed to this. However, it turns out my Granny had the same issue when she exactly the same age as me (and that was after 5 children). So this MUST be a genetic issue.

  • Hi Cakenport

    What a lot to deal with for you. I am in in the same position as you being self employed. I had worked in secure jobs all my working life and started up my business just before the pandemic hit! So like you, 3 years of very little income.  It’s easy for me to say don’t panic but there’s very little you can do in terms of income , your health is paramount but there’s lots of things to explore for support and advice. I called the Macmillan financial helpline for advice and they were a great help. They will point you in the right direction for support with your self employment situation. There’s also a section on self employment in the MacMillan support pages.  If there’s anything you want to ask, please let me know.  All the best. Ax

  • Thanks so much @Morar I didn't know there was any guidance like this available and was planning to speak to Citizen's Advice once I'd got my bearings and less panicky but this would definitely be better. All the best to you and I'm sorry you've had such a bumpy start to your business with so many hurdles.

  • Hi and welcome to our group in the Online Community. I'm sorry to read about what you've gone through all that waiting and asking for further tests to be done and now the prospect of having a hysterectomy on top of lack of income due to Covid.

    As has mentioned, contact the Macmillan Support Helpline , freephone number shown below, and ask a financial expert, they'll be able to offer some advice.

    Come back and let us know how your treatments progress. If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

    It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

    Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

    You might also find this link to what to take in my overnight bag useful for when you have surgery.

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

    There is also an Ask an Expert section, but you should allow two to three working days for replies from our expert team.

    Sending you welcoming hugs, Barb xx 


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  • Thank you.  I really hope you get some guidance and support so you can focus on you!   

  • Thanks so much for all of this info Barb. There's so much to take in so I appreciate all this guidance x

  • Hello Cakenport

    It sounds like you have been through a lot already.  I think many of us can relate to some of your experiences.

    Macmillan have been great for me, at helping with financial concerns as well as support throughout treatments and advice.

    I was also told by the community nursing team, that the Citizens Advice are great for support and advice.

    You can speak to your consultant and request a genetic test. Its just a blood test. My experience was the same, both my mother and Grandmother had the same as myself at exactly the same age. (51)  the test will be able to tell if genetic -( lynch syndrome.) My test came back confirming this was the case for me.

    I hope everything works out well for you. You will get a lot of helpful advice and support from this chat.

  • Thank you I hope you're doing well yourself. I went on a bit of a mission with GP last week and asked for full bloods etc. (plus a few pills to take the edge off my panic modes) and she put in a referral for genetic testing so I'm just waiting to hear back whether I qualify for that :)

  • Thats good. I hope you are not waiting too long...One thing to be prepared for through this is a lot of waiting!

    But hopefully all will get seen to fairly quickly. 

    I'm sorry to hear you are experiencing feelings of panic. Again understandable, especially at the waiting stage. Try and build a good support team around you.

    Keep us posted.