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Original poster

Handhold needed - referred under 2 week wait

35 replies

Anxiousgirl5 · 17/01/2023 18:46

Sorry posting here for traffic.

I'm really scared. For 3.5 years now I've had bleeding between periods. It's always been brushed off or said to be nothing. Eventually this year I was referred for a pelvic ultrasound. Whilst waiting for this ultrasound, I've developed issues with my bladder - constant need to wee, and pressure in the area. Treated over and over again for a UTI but it never got better.

I had the scan on 5th Jan. Only just found out today that they found a "mass" on the scan, they think on my ovary, and they can't tell what it is. So I've been referred under 2 week wait for gynecology.

I'm petrified. I'm also really annoyed - I called the GP surgery twice trying to get my results only to be told they weren't in yet. Eventually I contacted the hospital who told me the results were sent the same day I had the scan! When I explained this the receptionist magically found my results, and that the GP had urgently referred and asked to speak to me.

If I hadn't chased it up I would've thought there was nothing wrong, and suddenly been blindsided with an urgent referral letter in the post.

I'm just so shocked and scared by all of this. I'm only 32. My only symptoms are irregular bleeding for a few years and frequent urination (which only started 5 weeks ago). Any positive stories of similar things that turned out to be nothing?? Or a handhold while I wait :(

OP posts:
scochran · 17/01/2023 18:53

I've had a few scares similar investigated over the past few years and I've found it helpful to call one of the helplines to speak to a nurse specialist rather than Google things. Especially if your gp hasn't explained much.

Original poster
Anxiousgirl5 · 17/01/2023 19:36

scochran · 17/01/2023 18:53

I've had a few scares similar investigated over the past few years and I've found it helpful to call one of the helplines to speak to a nurse specialist rather than Google things. Especially if your gp hasn't explained much.

Thanks, what helpline do you mean? My GP has explained almost nothing. I asked what she thought it could be and she said "I wouldn't want to guess"

OP posts:
scochran · 17/01/2023 19:38

McMillan was who I called after getting urgent recall from some tests and I needed to discuss.

Original poster
Anxiousgirl5 · 17/01/2023 20:57

Thank you I may contact them.

OP posts:
MavisMcMinty · 17/01/2023 21:03

32 is young for it to be ovarian cancer, it’s much more likely to be a cyst or benign tumour. But the not knowing, the waiting, is the worst thing of all. Hopefully soon you will know what you’re dealing with and how it can be treated. Lots of luck! xx

Leemoe · 17/01/2023 21:07

Ar your age OP this is likely to be a benign ovarian cyst.

Ultrasound scans cannot always differentiate between masses in the pelvic region.

Please try not to worry too much, offering a handhold and here to chat until the gynae appointment hopefully puts your mind at rest x

HTruffle · 17/01/2023 21:10

I had similar recently albeit for a breast clinic. The not knowing and the waiting is horrendous. In the end I paid to go private. I agree with the others who suggest ringing helplines to speak to someone trained in exactly this. Wishing you the best of luck.

rogueone · 17/01/2023 21:13

My sister had this, they found a mass and also she had a blood tests and found high levels of CA125. My sister had been bloated for a couple of years and despite exercise and diet it made no difference . She had pressure to pee all the time. She was fast tracked but when she saw her GP for the results she basically said it was cancer based on the results. My sister went private and saw a specialist and they reviewed everything and were 99% sure it wasn’t cancer. It turns out it wasn’t and she had a large cyst. Had it removed but it grew back so had a hysterectomy. She was in her early 40s. It was an awful experience all round - hope it all goes well for your

ApiratesaysYarrr · 17/01/2023 21:20

Would it help to know that the threshold for referring under a 2 week wait pathway is that the person referring you only needs to think that there is a 3% chance of it being cancer? The threshold for referral is set deliberately low to pick up as much cancer as possible, and almost everyone referred on a 2 week wait will not have cancer.

Izzy24 · 17/01/2023 21:27

I had your bladder symptoms and no cause was found. One day I was lying down and could feel a large lump in my pelvis- don’t know how it was missed on examination especially as I was very slim. Had an ovarian cyst removed which was the size of a large grapefruit. It was a dermoid cyst and benign. This waiting limbo is the worst. Thinking of you.

RedOrange21 · 17/01/2023 21:32

Ovarian cysts are really common - I have had several friends who have had these and whilst unpleasant, can usually be dealt with. Also my friend who deals with cancer referrals says at least 9 out of 10 turn out to be something else. The waiting is awful though so feel for you.

Original poster
Anxiousgirl5 · 17/01/2023 21:33

Thank you everyone for your replies. I'm having a CA125 blood test tomorrow morning. It also scared me a bit how quickly everything happened - I spoke to the GP receptionist at 3pm and was offered a call back an hour later. And then when the GP called she said she'd squeeze me in for a blood test tomorrow morning despite the fact they're fully booked.

It helps to hear other's stories that turned out to be benign. I have done some reading and seen that benign tumors are most common in people my age... But can't help being scared!! The urge to pee is getting worse by the day, it is almost constant, feels like something is squeezing down there. Very difficult to live with!

I've had such a shit year. I lost sight in one of my eyes earlier this year as well and literally just returned to work after 3 months off sick. I thought I was getting back on track health wise but now this :(

OP posts:
Rainn21 · 17/01/2023 21:36

A mass on my ovary turned out to be a dermoid cyst that was harmless.

PleaseCleanTheWholeToilet · 17/01/2023 21:38

Iv had five 2 week cancer referrals
Im Not 40 yet
None were cancer

Hope you are ok OP

Original poster
Anxiousgirl5 · 17/01/2023 21:45

Izzy24 · 17/01/2023 21:27

I had your bladder symptoms and no cause was found. One day I was lying down and could feel a large lump in my pelvis- don’t know how it was missed on examination especially as I was very slim. Had an ovarian cyst removed which was the size of a large grapefruit. It was a dermoid cyst and benign. This waiting limbo is the worst. Thinking of you.

Wow a grapefruit?! That's huge. What were your bladder symptoms like? For me it feels like even if I've just been, I still need to go. And like something is pressing on my urethra?! If that makes any sense

Thank you, this is reassuring that it could be a similar situation for me.

OP posts:
kafkascastle · 17/01/2023 21:52

The mass on my fallopian tube turned out to be adhesions. I hope yours turns out to be nothing serious. Good luck.

justcouldntthinkofausername · 17/01/2023 21:58

OP I've recently been through this. I was worried sick especially as I have a young son and I am 32 next mo th so similar age to you.
Ultrasound and internal revealed a 'septated' complex cyst, I remember my GP calling me quickly and asking me to go for blood test ASAP for the CA 125 test which luckily came back fine at 13, he referred me to gynaecologist who wasn't at all concerned, he sent me for another scan and blood test 3 months later.
Bloods were same at 13, I went for another ultrasound and internal only last week and the sonographer told me it's gone!
Try not to worry. I know it's easier said than though. Let us know how you get on xx
Good luck

kitcat15 · 17/01/2023 22:01

You don't have cancer until someone tells you you have cancer.....and agree far more likely to be benign at your age

cinnamonbiscuit · 17/01/2023 22:14

OP I haven’t been in your exact position, but I did have an ovarian cancer ‘scare’ with the same annoying urinary symptoms and irregular periods as well so I was referred. It turned out to be nothing at all, just cystitis following a UTI. I know how hard it is but try not to panic. Fingers crossed the CA125 result will calm your anxiety, but also good to remember that if it’s high it could be that the mass is benign and raising that number, it doesn’t mean it’s cancer.

Izzy24 · 18/01/2023 07:10

Anxiousgirl5 · 17/01/2023 21:45

Wow a grapefruit?! That's huge. What were your bladder symptoms like? For me it feels like even if I've just been, I still need to go. And like something is pressing on my urethra?! If that makes any sense

Thank you, this is reassuring that it could be a similar situation for me.

Show quote history

Yes, feeling like I needed to wee all the time. Drive me nuts.

WorriedMillie · 18/01/2023 07:30

OP, I had similar recently and was referred on the 2ww. It turns out I have a haemorrhagic ovarian cyst (and a fibroid!)
They are going to re-scan in 12 weeks, if the cyst has got bigger it’ll need draining, but they are otherwise not concerned

Malignant ovarian tumours are v unusual at your age
Oh and the CA125 marker isn’t specific for OC, so don’t panic if it comes back raised 🌸

Original poster
Anxiousgirl5 · 18/01/2023 10:09

WorriedMillie · 18/01/2023 07:30

OP, I had similar recently and was referred on the 2ww. It turns out I have a haemorrhagic ovarian cyst (and a fibroid!)
They are going to re-scan in 12 weeks, if the cyst has got bigger it’ll need draining, but they are otherwise not concerned

Malignant ovarian tumours are v unusual at your age
Oh and the CA125 marker isn’t specific for OC, so don’t panic if it comes back raised 🌸

Thank you, I'm glad yours turned out to be nothing. I hope mine does too. I think what scared me the most was the fact the ultrasound report said they don't know what the mass is, and they're not even completely sure it's on my ovary but they think it is. It's all so vague.

And waiting for the appointment to come through is torture. The GP said its supposed to be 2 weeks but at the moment it's more like 3 weeks. So could be days and days of waiting yet. I emailed the hospital this morning to ask if they could give me a date because I'm so anxious but no reply as yet.

OP posts:
Biscuitsforsupper · 18/01/2023 10:11

Try not to worry. I had this and it turned out to be a non-benign cyst. I think it's fairly common.

Original poster
Anxiousgirl5 · 18/01/2023 10:31

Izzy24 · 18/01/2023 07:10

Yes, feeling like I needed to wee all the time. Drive me nuts.

Show quote history

It's driving me nuts too. Horribly uncomfortable. It's not so bad when I lay down so I can manage to sleep ok but during the day it's a nightmare. I work in a school, it's difficult to keep running to the toilet. Did removing it fix the problem?

Honestly can't believe my luck. I'm literally on week 2 of a phased return at work right now due to losing my vision in one eye. And now this!

OP posts:
Izzy24 · 18/01/2023 19:07

Anxiousgirl5 · 18/01/2023 10:31

It's driving me nuts too. Horribly uncomfortable. It's not so bad when I lay down so I can manage to sleep ok but during the day it's a nightmare. I work in a school, it's difficult to keep running to the toilet. Did removing it fix the problem?

Honestly can't believe my luck. I'm literally on week 2 of a phased return at work right now due to losing my vision in one eye. And now this!

Show quote history

Yes, after it was removed all the symptoms disappeared. I do hope you get a date very soon.