Severe pain, large cyst worried

[paininhell]

Hi,

I've been getting niggling pains on the right lower abdomen side near ovaries, bladder. Wednesday I woke up and couldn't move, screaming in pain thought I was going to pass out. I thought it was kidney stones so went to the hospital. I had bloods which were normal, Ct scan shown no stones but a large soft tissue/cystic lesion superior to bladder & uterus 12.4 x 10.7 x 8.0 cm. I needed a urgent ultrasound but they couldn't do it then and I need to go back next week. Still getting pains on & off but constantly have a heavy, swollen stomach feeling. Dull like period pains. When the pains do get bad they are at the bottom of my back, right side of lower abdomen and down my right leg to about my knee. I can only describe as contraction pains, stinging pains, the worse period pain I've ever had. It knocks me off my feet, I can't speak or talk when this pain takes over and just have to sit up right rocking side to side until it eases and then sit in bed.

Has anyone had anything similar? I've googled endometriosis and the pain seems similar. I can't stop thinking it could be cancerous but I asked the doctor in hospital and she said it looks like it's fluid filled and while they can't 100% say it's not cancerous she's pretty sure it's just a very large cyst.

Sorry for the long post, I'm driving myself mind. And I don't know if I posted in the right place.

My mum had a massive ovarian cyst, she was fobbed off for a year that it was ibs, then kidney stones. When she was finally admitted to hospital a year later, the cyst was bigger than a watermelon & had twisted her ovary, which had stopped the blood flow, her ovary was dead & black. If she hadn't gone to hospital, she could have died. Get yourself to A & E in the morning, you are in constant pain & need some attention.

Do you get ‘javelin arse’ on your period?

I didn't know what this was until today. But I don't get it as often now but when I was younger I got it all the time! It was the weirdest, sharpest pain in my arse. I never knew what it could be.

There's no beds atm. I don't think I could sit in a&e with these pains. The nurse on Wednesday forgot to give me pain relief (they were busy) I know the warning signs if it was to get any worse.

I have diffuse adenomyosis and the pain sounds very familiar (mine is chronic and I've had it worsening for the last 6 years) so if you have any scans, or gynae appointments, ask them about that too

Someone close to me has been in this position very recently. She was discharged and told that if it hurts again, then she has to go back in an ambulance and they will do an emergency operation. At the moment, it is a dull ache and feels as though she has been beaten up, but the strong pains that you describe as well have gone.

Earlier this year my sister went to a&e as she thought her appendix was about to burst as she was in so much pain. Turned out she has a cyst on her ovary. About a week later, she had an op and had it and her ovary removed. She had to take it easy for a while after and still needed pain medication, but she is so much better now.
I suspect I have a cyst on my ovary due to some very sharp pains in that area. I have had the CA125 blood test which has come back at 18 (35 is normal). I am waiting to hear from gynae to see if they will do an ultrasound in it as currently any 'relations' with my dh are off.
I really hope you get some help soon. Even though my pain is short and sharp, it hurts so to have it for longer must be just awful💐

Update for anyone interested or anyone else going through the same thing. I had my scan it's a dermoid cyst it looks like it's going to be too big to remove via keyhole so it's likely it will be like a c-section surgery. The pain last week we think was the cyst twisting. I can hopefully have a good nights sleep tonight after hardly any sleep worrying for week. Thank you for everyone for your helpful advice.

So glad to hear it's just a dermoid! I went through the exact same as you, the worrying was terrible. My surgery ended up being a vertical incision rather than c section type, but it's been fine really. It's been 4 weeks since I had it and I feel almost back to normal now. Hope you don't have to wait too long for surgery.

@Daisythecat15 that's good to know glad your recovering well. How was the surgery? Did you spend long in hospital? I'm hoping it's a few weeks. I have a holiday booked beginning of August but obviously I will cancel if needs be.

It wasn't bad honestly. Surgery took about 2 hours, and I spent 2 nights in hospital. I didn't have very much pain really, much less than I expected! The first week was a bit tough as it was difficult to move around - my abdominal muscles were weak and sore with movement, so I needed a lot of help with things like getting dressed, preparing food etc. But I improved quickly, and now I feel pretty much normal.

Will keep my fingers crossed for you! I went private for mine because the waiting list was really long. My cyst hadn't twisted or anything and wasn't causing much pain, so I wasn't considered that urgent I don't think.

How are things now OP? I’ve just been scanned and have a gynae appointment on Friday, my US report just says ‘massive cyst’ so I don’t know the dimensions but I know it’s probably coming out! I had slightly raised CA125 too at 48 so still worrying about that too.

@Relea I had a 6kg ovarian cyst removed almost 3 years ago and I’m happy to answer any questions re surgery. Unfortunately it was malignant but had been caught very early and I was given a diagnosis of stage 1a mucinous ovarian cancer. My Ca125 was 56.

These huge cysts are very rarely malignant and when they are they are usually caught in the very early stage and surgery alone can be the only treatment needed.

@ForfarBridie Thank you, that’s very reassuring. That must’ve been huge! There’s another on the report that’s 5.4cm but the other just says massive. Hopefully as it’s big it’ll be a fairly fast process to go through.

5 cm is usually the threshold for surgery, given tbe risK of torsion.

Try not to worry too much - lots of things elevate a ca125 x

@Actupfishy yes I’ve read as much, I’ve no idea the size of the ‘massive’ one as it isn’t specified in the US report

@paininhell hope you eventually got this sorted!

@ForfarBridie had my gynae appointment today - my cyst is 25cm!! It’s all the way up to my sternum apparently, I couldn’t believe it!!