Dermoid ovarian cyst experiences?

[Cupofteaaa5]

Has anyone had a large dermoid cyst on their ovary and experienced pain/other symptoms?

I've been diagnosed with a 10cm dermoid, confirmed with an MRI. I'm waiting for surgery to have it removed. Been told it's very 'solid' so it will have to be open surgery.

Up until now it's not bothered me too much - it's caused irregular bleeding and bladder issues, but that's been manageable.

However in the past 2 days I've suddenly developed pain in the area where the cyst is. To begin with it was very painful - hurt to touch the area, bend etc. It's a bit better today but still very achy and twingy. I've also had terrible bowel issues alongside it (I have IBS)

Has anyone else had a similar experience? When it first started hurting I thought maybe appendix, but it seems a coincidence that I have a big cyst and that's exactly where it hurts. I didn't go to a&e because it wasn't severe pain - maybe a 5/10 level. But it's definitely bothering me a lot and I hope it isn't going to keep hurting until I have surgery... As I'm probably going to be waiting months ☹️

I had a very large serious cyst. I ended up in hospital twice with the pain (years before I had it removed). It was the cyst twisting and strangulating my ovary.

I too was told I had IBS. I didn't. It was all caused by the cyst.

How big was yours if you don't mind me asking? My pain seems to keep changing. Today it feels like it's in my hip and down my leg, like something is being pressed on.

I've had IBS for about 5 years, I wonder if it could all be caused by the cyst?! It's never been this painful before though. I feel as though the cyst is growing or moving around.

I'm waiting for surgery to remove mine which is 8cm. I've been told in the meantime if I have any pain then to go to A and E to get checked out . I saw the consultant last Wednesday and I had a call on Friday to book my pre op assessment and was told I wouldn't wait too long for the operation. Did they say anything about a time scale?

It was about grapefruit sized. However, it had twisted behind my uterus and was hiding in my 'pouch of Douglas'

I had symptoms of both anterior and posterior prolapse which is what I was actually being treated for. The consultant had no idea I had an ovarian cyst and that's what was actually causing all my issues. It was pressing down, and the weight was causing prolapse like symptoms including IBS symptoms. Once the ovary, fallopian tube and cyst had been removed, all the IBS like symptoms went away.

I had my appointment with the consultant a week ago, she said she can't give me any sort of time frame for surgery because she just doesn't know 🤔 I know she put me down as "urgent" but who knows what that means. I'm in Wales and our waiting lists are appalling.

I was quite surprised how quickly things are happening tbh. I really wouldn't put up with lots of pain without getting it checked out.

Well that makes me hopeful that maybe mine won't be too long. I've been looking into private because I have an active job and to be honest just the bladder issues were driving me nuts, but now pain as well means I can't easily work.

I have a GP appointment Wednesday so I've just been waiting for that. I'm not in severe pain so I've been reluctant to do anything about it.. I imagined myself sitting for 12 hours in a&e if I went with this 🫤
From everything I've read, if the ovary twists or bursts then you're in extreme, can't walk or move sort of pain, and I can't describe mine like that !

I had several complex dermoids removed from both sides a few years ago. They were all under 5cm which was the surgery threshold, but causing a lot of pain. I was on amitriptyline for months in the run up.

Oh wow, that sounds awful. What was your pain like if you don't mind me asking?

Yes,

I had this last year.

similalar 10cm cyst which was removed via open Surgery in October.

I had this a few weeks before. It was ovarian torsion. Mine was extremely painful, It was A&E level pain worse than labour. Unbearable.

However this moved my surgery to "urgent" so I had my surgery just 20 days later.

If id have had the pain again I would have only had to endure it for 4 hours before going for emergancy surgery, but the operation is more dangerous as emergancy compared to planned so they prefer to do it as urgent and then you can be sure to have an empty digestive system etc as its planned

Had mine removed laparoscopically about 18 years ago. Only had pain during sex. They weren’t big

What was recovery like please?

I was signed off work for 6 weeks.

The first few days / week or so was hard / painful (as you would expect)

No heavy lifting (ie a washing basket or my les cruset casserole dish)

I couldnt drive for 4 weeks.

I was just about well enough to go back to work after 6 weeks (ie work in reception class in a school so very full on) but didnt feel completely better until about 10 weeks later.

Even now, 5 months later, I can "feel my scar" especially if the children whose heads are at perfect height run into it, but it doesnt hurt, i just know :)

You will definitely need help with basic household chores for the first month ish.

Oh blimey,that's a bit more than I was expecting to be honest. I've had a laparoscopy before but that was when I was younger and I just remember being very tired. Thank you .

Dh is good with direction , housework will be ok. I'll try and get some meals in the freezer beforehand as she is happy with pizza and ready meals but I'm not.

One more question, how long did you stay in hospital ?

Sorry, to hijack your thread OP x

That's okay @MrsPelligrinoPetrichor I'm interested in the answers too.

@changedmynam yours was done really quickly! Do you think that was because you'd been to A&E with torsion? My gynae said mine is put down as urgent, but still couldn't give me any time frame. When I said "months?" she still just shrugged. Very unhelpful.

I was in for 2 nights

Many people go home after 1 night.

(However I had been very poorly with other gynea things over the past 2 months, including 4 emergancy hospital admissions, and it was my second GA / surgery that month, so i think if id have gone in as a weller person, i would have only been in 1 night)
These nasty tumors had, as well as the issues with ovarian torsion, blocked my bowel too so I was vomiting poo (my stomach, duodenum and part of my small intestine had collapsed)...... then after twisiting my ovaries they had settled on my bladder causing me lots of bladder issues too.... so I think thats why I was in a little longer than most

sorry, I cross posted.

Yes mine was definitely quick because of my torsion.

I was expecting an approximate 3month wait, but when i turned up at A&E (for the 5th time in 6 weeks) in agony, i so very nearly had emergancy surgery.

However by the time a bed had been found the torsion had eased itself, so it was not done as an emergancy operation after all, and the emergancy had faded.
It could have returned at any time so they did it quick.

As mentioned above I'd had a lot of gynea issues in Aug / Sep and was well known on the gynea ward where i had been admitted 5 times in not many more weeks.

There was also serious question as to if mine was cancer (although they had decided it wasnt before my ovarioan torsion)... but it wasnt.

I also didnt just have one... i had a grapefruit sized one (which why i was talking about in my responce) but I had a tennis ball sized one as well.

I also had a few small dermoid cysts on my other ovary.

I lost 1 ovary and fallopian tube (which was expected) but I had been prepared that I might loose both ovarys. Thankfully my consultant saved one, so I avoided immediate surgical menopause and the life time complications of no ovarys, but I didnt find out how it had gone until after surgary... as was prepared for the worst.
I was also prepared to have my tummy cut upwards, not like a cesarian cut... due to having 2 large things that needed to come out whole, they wernt sure what they would have to do, until they actually got in there.
Had they have had to cut me differently my recovery would have been longer and i might well have stayed in hospital longer still

I think i was quite an extreme case (and i have had and continue to have other complications, which are sending me to Jimmys in Leeds for more very rare surgery).

Good luck with your surgary and I hope you get a date in very soon.

I was put on emergancy list
10 days I later i was called with a surgery date for 10 more days time.

sorry at the end it should read i was put on URGENT list (not emergancy list)

I was put on URGENT list
10 days I later i was called with a surgery date for 10 more days time.

I had an ovarian fibroma removed via robotically assisted laparoscopic myomectomy 6 weeks ago. They thought it was a pedonculated fibroid prior to surgery but ended up being an ovarian fibroma, 12cm, 1.5kg

I was lucky that I had private medical with work, unfortunately the NHS doesn't offer this type of surgery. One night in hospital and a few weeks before I felt myself.

Hope you get sorted!

Started experiencing pain May 1st. Went to GP who said it was IBS and told me to drink water. Went back every two weeks until he called me a time waster and said I was imagining it. Refused to do anything.

Crawled into A&E in agony 3am, Oct 12th. Passed out in triage. Woke up following day with hip to hip incision, minus one 20cm twisted necrotic dermoid, one ovary, one tube.

1 week in hospital, 6 weeks off work. Changed GP. Arrogant moron.

Good luck OP. It is a huge relief when it's gone. 😊

This thread has been really helpful, thanks OP for starting it and thanks everyone who has shared their experiences. OP I hope you get sorted soon 💐

@MrsPelligrinoPetrichor I think that poster was describing the 6 week recovery from open surgery not laparoscopic. Sorry if you knew that but thought maybe you were comparing the two!

@Cupofteaaa5 you ask me my pain, it was either sharp, like someone cutting me slowly inside, or an ache like someone was hanging weights off my uterus!

I had the removed laparoscopically and healed in a few days, but took a couple of weeks to get fully better and to get past the anaesthetic fatigue but i think that was just me!

Oh and I was from first diagnosis (presented at A&E with what I now know is torsion) to surgery in about 6 months