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Cancer

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Thought it was peri, now diagnosed with endometrial cancer

82 replies

Tarkan · 01/05/2026 13:06

Hi all, it’s taken me a little bit of time to get the courage up to post here. I ramble a lot so will try to stop this becoming too long while sharing my story so far.

Back in December I went to my GP thinking I was hitting perimenopause. I honestly only went because I was going through the craziest mood swings and paranoia and I was pushing DH and my friends away. My periods had also changed and I was flooding badly every few weeks with lots of lighter bleeding in between so GP suspected fibroids and referred me for a scan for that while putting me on HRT.

Mid-February was that scan, both a vaginal and external ultrasound. Results from that showed an enlarged womb so GP told me to immediately stop the HRT in case it was “something untoward” (her exact quote).

After that it’s felt like a whirlwind. I was so petrified of it being cancer but felt I didn’t have anyone other than DH and one friend to talk to (my two other closest friends both recently lost close family members to cancer and one told me to stop talking about the possibility as it was triggering for her).

Hysteroscopy was in March. I had multiple polyps removed, biopsies taken (which I had been told they were going to do anyway “just in case”) and a Mirena inserted. Afterwards DH and I were taken to a private room and told my endometrium had looked abnormal so they’d try to get the biopsy results ASAP for me and just over a week later I got the phone call to say Grade 1 endometrial cancer.

All the previous appointments were at different hospitals in our area so on Monday just gone I got to meet the team I’ll be under.

The next step is an MRI which is booked in for the 12th and after that I have the choice of a hysterectomy or because my BMI is high which makes the surgery riskier, as long as the MRI doesn’t show it anywhere else I can choose to wait for a year or two while working on my weight loss and having biopsies every 4 months.

At the moment I think I’m going to go towards the surgery anyway. Despite the Mirena I’m still bleeding every day although thankfully much lighter than it was and what I didn’t get to tell the doctor was that I’ve been trying to lose weight for years and in that time I’ve only lost a stone. My main issue there is really that I’ll do well losing weight but because I have fibromyalgia I’ll end up having a really bad flare up or my back will seize up (had back issues since my teens) and end up just surviving on the unhealthier food then. A lot of my calories previously were from fizzy drinks and alcohol as well so trying to work on cutting them out (not easy when I can’t have artificial sweeteners and one of my hobbies involves being in a pub but I have a plan in place for that now).

I know this has ended up being super long but that’s pretty much everything so far. Oh and I have always had health anxiety so that’s spiralling like crazy right now as I’m sure you can imagine.

OP posts:
P00hsticks · 20/05/2026 22:55

As you say - good and and bad news. Will be thinking of you and wishing you well.

Janie934 · 21/05/2026 10:36

@Tarkan Do you mind me asking how long it took from getting the diagnosis to having the oncology appointment?

I found out yesterday that I have grade 1 endometrial cancer and have been referred to oncologist. We're supposed to go on holiday this weekend and I don't know whether I'm likely get an appointment soon enough that we should cancel, or just go and accept that I may need to pay extra for an early flight home.

Tarkan · 21/05/2026 15:27

So sorry to hear you’re also going through this @Janie934. It’s still gynaecology I’m seeing although the two doctors I’m under do deal with gynaecological cancers as well as other gynae issues.

How long are you away for? Obviously I know every area could be different (I’m in Scotland so if you’re in England then even that could change timelines) but my timeline since the hysteroscopy and my diagnosis so far has been:

23rd March - hysteroscopy where polyps were removed, biopsies taken as walls looked abnormal and Mirena inserted
3rd April - diagnosis of endometrial cancer
27th April - meeting with gynaecologist to talk over options
12th May - MRI
18th May - MRI results and was told surgery would be 4th June
19th May - online questionnaire about my health for the surgery and also phone call to give date of 2nd June for surgery

I’ve been reassured throughout that having the Mirena as well as it being grade 1 at least means any growth is incredibly slow and the Mirena helps stop it developing too.

My appointment with the gynae I just received through the post so if it’s the same for you you could miss any letters being away so all I can think of is maybe giving them a call to explain and see what their department recommends? I’ve been lucky that all my plans for the year were before my diagnosis and I’ve been too scared to plan anything else while going through all the testing. I hope you can still manage your holiday as I know what a worry it is with everything and having a break to take your mind off things would be good. Please let me know how you get on! Flowers

OP posts:
Tarkan · 21/05/2026 15:29

I also want to thank everyone who has been following my thread and commenting. I do use the thanks reaction but I know only the poster can see I’ve thanked their post. Just don’t want it to look like I’m ungrateful for the kind wishes from everyone. 🥰

OP posts:
Janie934 · 21/05/2026 15:39

Thanks @Tarkan.

I was seeing the gynaecologist privately for fertility treatment so they can't deal with the cancer side of things and have referred me to the gynaecological oncologist (both NHS and private).

Earliest private appointment is 10th June. I'm not sure how long it'll be for the NHS (I'm in England).

I think i'll get updates on the nhs app but we have friends and family who can check the post regularly.

I'm away for a week and a half - I figure that an appointment in the first week seems unlikely so worst case I fly home a few days early. Probably better that sitting at home worrying but its hard to know what to do for the best.

yellowduckieswalking · 21/05/2026 15:48

Hello, just reading now and wanted to send a virtual hug. No cancer diagnosis but I had a hysterectomy three years ago and it was so smooth. My family
made sure I could really rest for 5 weeks afterwards and I think this was key to my recovery.

I hope that you get the same recovery. ❤️‍🩹

Tarkan · 21/05/2026 16:04

Sounds like you’ve got good plans in place @Janie934 We don’t have the app here so I had to wait for my letter but since you’ve got that and family able to check the post for you then I think it’s worth going on the holiday and trying to relax. I’ve found the waiting between appointments and results really hard so anything that’s taken my mind off it has been amazing. I’ve been to five gigs this year which definitely helped a lot. Sorry to hear this was found while you were going through fertility treatment too, sounds like you definitely need a nice little holiday. Flowers

OP posts:
Tarkan · 21/05/2026 16:13

yellowduckieswalking · 21/05/2026 15:48

Hello, just reading now and wanted to send a virtual hug. No cancer diagnosis but I had a hysterectomy three years ago and it was so smooth. My family
made sure I could really rest for 5 weeks afterwards and I think this was key to my recovery.

I hope that you get the same recovery. ❤️‍🩹

My plan after the hysterectomy is to go stay at my parents’ house for a little bit so I should get a good rest there at least.

They have a few spare rooms (with much comfier beds than my own one which definitely needs a new mattress soon LOL) and also a large private garden so DH, DC and the dog could come too and it means I don’t have to think about housework or cooking as there will be plenty of people there for all of that.

Then for staying active every day I can just wander around their garden in my PJs, dressing gown and slippers if I don’t feel up to getting properly dressed. It also means if my back pain and mobility are an issue I can walk for a minute and sit down in a garden chair.

We do have a nice garden at home but it’s shared and our neighbours we share with are new so I don’t really want them seeing me in potential disarray and wondering what on earth I’m doing. 🙈

OP posts:
Jellybelly80 · 21/05/2026 18:09

was seeing the gynaecologist privately for fertility treatment so they can't deal with the cancer side of things and have referred me to the gynaecological oncologist (both NHS and private)

women who have their gynae cancers treated by gynae oncologists have better outcomes than those treated by general gynaecologists and general surgeons.

Jellybelly80 · 21/05/2026 18:10

Tarkan, your plans for recuperation sound just the ticket and I bet your parents can’t wait to have you home and look after you.

P00hsticks · 22/05/2026 16:13

One tip for after the op which I found useful, if the bed at your parents is quite high (like mine is).

I was struggling to get into bed in the days and weeks immediately following the op as it was painful to bend and stretch. I ended up using a step stool by the side of the bed - if I sat on the side of the bed I could lean back as I 'walked' my feet up the steps to the top, which was level with the bed. and then just swing my legs across.

Tarkan · 22/05/2026 18:26

Oh thanks for the tip @P00hsticks - we have one that folds down really flat that we can easily take over so I’ve told DH about it so he can remember that.

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Tarkan · 23/05/2026 00:44

Also if anyone has any tips for things I would need/like in the hospital please let me know.

I’ve only ever stayed overnight in hospital when I had DC1 in 2004 and I had a private room. I was on a ward after having DC2 but that was only for a few hours in the afternoon before I went home so not quite the same as properly overnight on a ward. I’m already planning on having my phone, power bank and a book with me as I’m going in for 7.30am and they’ve suggested that sort of thing to fill the time before I’m taken for surgery but I don’t know if there’s anything else I might need (PJs, dressing gown and slippers already on the list too).

OP posts:
Villanousvillans · 23/05/2026 00:52

When I went in for my cancer surgery and hysterectomy, I took earplugs, my iPod, two soft bras for comfort and modesty, big knickers, fruit sweets for my dry mouth, and plenty of drinks. I had those cartons of juice and some bottled water. Top tip, once you’re permitted, drink plenty. It will rehydrate you and help your bowels and bladder. I also took some pads in, as you do bleed a bit after surgery.

P00hsticks · 23/05/2026 08:51

With me, they were encouraging me to drink as much as possible the next day, and were measuring my wee - they wouldn't discharge me until I had passed a certain amount. I second ear plugs.
I was only in overnight - I believe some hospitals even now do hysterectomies as day surgery.

Tarkan · 23/05/2026 14:17

Yeah they’ve said it should just be one overnight unless there are complications. I didn’t think of a few of these things so I’ll make a list. Thank you!

OP posts:
P00hsticks · 25/05/2026 23:21

@Tarkan Hope the pre-op goes ok tomorrow - will be thinking of you.

Tarkan · 26/05/2026 01:06

Thank you @P00hsticks- had darts tonight and it was a mad night so of course I’m struggling to sleep now. At least this week it’s an afternoon appointment. I won’t be there next week since I have to be at the hospital so early in the morning.

OP posts:
Tarkan · 26/05/2026 15:50

All went quickly and no issues other than a raised heart rate but I had just walked down a long corridor right before they tested that so hopefully it was just a mix of that and anxiety. 🙈

OP posts:
Tarkan · 02/06/2026 03:58

It’s surgery day. Need to leave at 6am to get to the hospital for 7.30am. My alarm is meant to be going off in just over half an hour but in typical me fashion I’ve had 45 minutes of broken sleep and been awake and really upset for the past two and a half hours.

It’s such a stupid thing but I realised I haven’t had any of the typical get well cards or flowers from any of my friends. I’ve had two thinking of you cards, one from an acquaintance at a hobby (one I’ve had to take a break from so I’m really missing it, although despite lots of friends and acquaintances there she’s the only one who sent anything) and one from my lovely aunt along with a really thoughtful gift. And I’m of course unbelievably grateful for both of them but I guess the days of sending cards to friends are over even though it can really mean a lot at times like this. I haven’t even seen either of my two closest local friends in well over a month. I wanted to see them before the surgery but they’ve been too busy. Both have said they’ll come see me in hospital though so fingers crossed I guess. I’ve always been the friend who drops everything if I can help them with something and it hurts that I’ve just felt so abandoned by them these last few weeks even though I know they do have legitimate reasons.

I know most of this is my lack of sleep and anxiety talking but I had to get it out somewhere in the hope I can get even a little more sleep before I have to leave. I’m also rather worried that my hurt over all of this is just going to get worse and when I’m going through all the menopause side of things later I might end up snapping and saying something horrible to them because I’ve felt so hurt by it all. 😢

OP posts:
Lougle · 02/06/2026 04:06

I think it's a little early to be expecting cards and flowers? I would expect that those may come after your op, if they come. I hope you manage some sleep, even if brief.

Tarkan · 02/06/2026 04:46

Nope still no more sleep. 😫 DH rolled over and started snoring just as I was drifting off so that was me awake again.

I did say I was probably overthinking it all but I’m the sort of person who would send that sort of thing after a diagnosis, not weeks later but maybe I’m the weirdo in that way then. I think because a lot of messages have also ended up ignored (about all sorts of subjects so not just about this) I’m quite sensitive about it all right now, and anxiety doesn’t help at all there.

I might as well go take my meds and start getting ready now I think. I’ve got everything packed and got a brand new book to take with me too since I don’t know how much waiting there will be. Fingers crossed that will take my mind off everything. Smile

Hopefully I can update when I’m totally past the anaesthetic. Don’t want to be posting gibberish straight away, even the leaflet says to avoid social media while coming round. 🤣 DH will be updating friends and family for me so they’ll know as soon as possible how it went.

OP posts:
ClashCityRocker · 02/06/2026 05:09

Good luck OP!

The armpit of the night before an op when you can't sleep and have so much running through your mind is not a good time at all.

You sound very kind and thoughtful and I'm sorry that you're feeling a little let down by your friends. Honestly, it isn't something that would occur to me (and didn't even at my one cancer diagnosis three years ago). I'll certainly consider it if I have a friend in the same boat.

Hope the op goes well and you're not waiting about too long.

Messingwithmyheadagain · 02/06/2026 05:10

Thinking of you today op 💐
hope all goes as well as possible with the surgery. An unmumsnetty hug 🤗 from me

Ladyofwoods · 02/06/2026 05:38

Just wanted to say I hope it all goes well for you today. Deep breaths and by this time tomorrow it will all be done. Big hugs x