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Well. Today's been eventful.

I was referred to a gynaecologist after experiencing unusually heavy, long and painful periods which started this year after eight months of nothing (I'm 49 and assumed it was perimenopause being a bastard, but the periods were becoming so horrific that they were badly affecting my day to day life). I had a hysteroscopy and D&C on Monday and felt reasonably good afterwards, but unfortunately what the gynaecologist thought would be the least likely cause of the problem is what she found. She thinks we've caught it early enough to treat it, but I will need a hysterectomy either at the end of this year or early next year.

It's been a couple of hours since she told me - I was calm through most of the consultation and said, "well, even if it isn't treatable, I suppose something is going to kill me eventually" and she said "you're not going anywhere for a while yet" - but lost it towards the end. I have no idea how I'm going to tell my parents. I have to have an MRI in a couple of weeks (no longer covered by Medicare - thank you so much, Morrison Government) then we go from there.

I think I'm in a bit of shock.

Well. Today's been eventful. I was referred to a gynaecologist after experiencing unusually heavy, long and painful periods which started this year after eight months of nothing (I'm 49 and assumed it was perimenopause being a bastard, but the periods were becoming so horrific that they were badly affecting my day to day life). I had a hysteroscopy and D&C on Monday and felt reasonably good afterwards, but unfortunately what the gynaecologist thought would be the least likely cause of the problem is what she found. She thinks we've caught it early enough to treat it, but I will need a hysterectomy either at the end of this year or early next year. It's been a couple of hours since she told me - I was calm through most of the consultation and said, "well, even if it isn't treatable, I suppose something is going to kill me eventually" and she said "you're not going anywhere for a while yet" - but lost it towards the end. I have no idea how I'm going to tell my parents. I have to have an MRI in a couple of weeks (no longer covered by Medicare - thank you so much, Morrison Government) then we go from there. I think I'm in a bit of shock.

46 comments

That really sucks. I hope your surgery goes well. Do you have to pay for your own MRI?

Thank you. Yes, I think I do but I'll find out if private health insurance will cover some of it.

I’m really sorry. I understand how shocking that must have been to hear and I hope you have people in your life who will support you through this. I’m not familiar with how the American healthcare system works, do you have to pay for everything yourself? I hope your MRI and surgery goes smoothly and that you’ll have a quick recovery. Sending loads of hugs<3 (if you want them, otherwise ignore that bit).

Thank you so much! The hugs are greatly appreciated 💗💗

I'm in Australia, so fortunately Medicare and my private health insurance will cover most of it, but I'll probably have to pay several hundred dollars out of pocket at least. Thanks to COVID my work had to put things in place to allow us to work full time from home during lockdowns, and they've said they'll maintain a hybrid work model. So with any luck I'll be able to work from home post-surgery once I'm up to it, which will mean I won't have to take as much leave.

Sorry for the assumption, I thought Medicare was an American thing. I’m glad that you won’t have those astronomical bills at least. But it sucks that you have to pay any of it, it’s not like you need the extra stress right now. I hope your work will be accommodating, try to not put to much pressure on yourself though. Feel free to reach out if you ever want to talk or vent <3

I have had a hysterectomy to stop cancer. The standard time off to recover here in the US is 6 weeks. And I will say, the time off is necessary. What is also key is to have someone with you (24 hours a day) for your first week outside of the hospital. This it to prevent any injuries during healing of the abdominal muscles, which must be cut through to remove cancer. Specifically, even though you will be sble to safely walk and use the comode on your own, you should have help lifting your feet into bed. Once you have sat on the bed, you myst not use your abfominsl muscles to lift your feet off of the floor and set them into bed. Doing so could reopen the incision in your belly that is healing.

[–] [Deleted] 12 points Edited

The same thing happened to my mom at 39-40, she had a hysterectomy and then was totally fine. She didn't even have chemo. You've got this! ♥️♥️♥️

Thank you for sharing this - so glad to hear that about your mum, too ❤💜❤

I'm so sorry you are going through this, and as others have said, I hope you have someone who can support you through this in person. It's not something you should be dealing with alone. * gentle hugs to you from afar *

Thank you for your kind words and support. I have my parents and siblings and friends I can talk to, and the specialist is great - I felt instantly at ease with her when I went to my first appointment.

[–] eyeswideopen 8 points Edited

My Mom went through this (heavy periods at 49 and then a biopsy/diagnosis, followed by a hysterectomy; she did not have to have chemo or radiation). She's 82 and happy and healthy today. I am wishing you the same outcome and best wishes for a rapid and successful treatment course.

I'm so happy about your Mum - my warmest wishes to you and her. Thanks so much for your words of support ❤

I'm so sorry, sis. Please don't feel bad for grieving, being in shock, or any other reaction you have. This is way too much to process.

But also know you're going to be ok! Wear warm clothes for your MRI, those things are like a nightmare refrigerator. I don't know if this is the same in Australia but maybe check out financial assistance policies for wherever you may get it done? In the US it's like a totally hidden secret that sometimes you can get care completely for free if you're low income.

Thank you - and that is good to know, I'll make sure I have layers on when I go in.

It will cost me A$650 which makes me wince, but I'm on a decent income so can cover it - MRIs for uterine cancer aren't covered by Medicare (our public health scheme) though I will check tomorrow whether I can claim a rebate through my private health cover, which I have as an adjunct to the universal health care system.

F**k, MRI is not covered by Medicare anymore? Yes, Scomo is a <insert inappropriate swear words here>.

I'm sorry about your diagnosis, it sounds like hell. Are your doctors supportive? Have you told anyone yet?

Thank you for the commiserations and support. I think some MRIs might still be covered but they cut hundreds of procedures from the Medicare benefits list by stealth - the LNP is desperate for a US style system. I suppose they have to find some cash for pork-barrelling car parks and nuclear submarines somehow. I am extremely lucky that I can afford private health cover and the out of pocket expenses, but it makes me really angry that these changes will disproportionately affect women on low incomes in the same position.

The gynaecologist and the GP who referred me (who specialises in women's health) are both great. The gynaecologist is going to tell my psychologist for me. I told my sister tonight and we'll go and see my dad and stepmum together this weekend if possible, and I'll go over to Mum's to tell her as well. It's going to be hard on them - I remember how distressed Mum was when my brother was undergoing tests and pancreatic cancer was a possibility (turned out not to be the case, thankfully).

I've asked for a Zoom meeting with my manager and team leader tomorrow, since we'll have to work out a plan to cover my caseload for the time I can't work. They are lovely people and back all of us to the hilt, so I'm confident of their support and I may as well be open about it.

I am so sorry. What very hard news. Please keep us updated on this journey (remember: one step at a time!).

Sending love and good wishes your way

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