Large dermoid ovarian cyst removal - experiences and/or private costs?

[ForSassyLilacWasp]

Hi all! Recently diagnosed with a 5.6x7.8x8cm dermoid cyst. Pretty scared, though I know they are rarely cancer, I was thinking of IVF so gutted as well that I could lose some or all of my ovary. I'm prepared to go to bank of mum to get it done privately, as I have read about the risk of torsion. That sounds like the depths of hell in terms of pain. I'm wondering what kind of costs I could be looking at if done privately - no insurance cover? And also, what of recovery time - how much time to take off work etc. No idea how long it has been growing :-(. Came up incidentally after a scan as I am considering IVF, very worried and down about this as it's asymptomatic - I had no idea, apart from periods becoming more irregular lately

I am going back years so unfortunately I think the cost will be way off. But I think my friend paid 6k. She recovered well. She had six weeks off work. Good luck 💐

Hers was a lot bigger than yours actually so hopefully makes it easier.

I’ve had this twice - one was huge and tortioned so I lost the ovary and tube. They told me a second one is rare but I apparently got lucky and got one the other side about 15 years later. That one was ‘only’ just bigger than tennis ball size and the surgeon managed to do some amazing trickery to remove it and completely preserve the ovary, which has gone on to function completely normally. (I did ask about freezing eggs before this second op just in case and I can’t remember the reason given but I was advised against it.)

First op was big because it was an emergency. Second one was similar to a caesarean incision and scar, very straightforward and I think I had about six weeks off.

Even if one ovary is lost or damaged the other one picks up the work as normal.

Thanks for your responses! Emergency surgery sounds awful and horribly painful, I have got away with not having any problems compared to most women but it goes to show that things can develop silently, I wish they did regular scans to catch these things earlier. I think mine is the size of an orange so perhaps similar to the size of 'only a tennis ball' lol! Going for the MRI soon and I think then I will get a date, I'm too scared to wait in case of torsion so will find the money somehow via bits and bobs borrowed from my mum or do some kind of monthly payment.

I had these every month for 30 years. Up to 25 of them at one point and the largest got to 32cm and I put up with them getting huge and then bursting every single month. A single small one will be sore when it bursts as this what they do but it’s only a day or two of feeling like a bad period. It had no effect on having children and it’s linked to endometriosis too so progesterone controls them - has no on suggested a low dose of progesterone? It gets rid of them often and stops them coming back. I had 4 healthy children 2 ivf and 2 natural but I had 2 periods a month and very short cycle hence the ivf for the 2nd two

Interesting! Maybe they will suggest progesterone once the MRI scans are back at my next consultation. The scan also showed 2 small fibroids so not sure yet what that means, they're focused on the dermoid due to it's size.

Dermoid cysts are a different kind of cyst to ‘normal’ ovarian cysts. They are usually there from birth and usually quite slow growing. Fascinating and disgusting at the same time, they’re full of skin, hair etc - leftover cells, not usually simple fluid.

OP I only waited about six weeks for my scheduled one on the NHS. It would be worth asking the surgeon you get referred to what the wait would be like.

It says mixed type of materials inside, likely dermoid in the report (in other words teeth, hair etc as I silently gag). My GP has said "On the NHS my best estimate is that it will take you 4-6 months to see the specialist who will then organise an MRI which can take another 4 weeks. I am very happy to refer you for NHS treatment if you are finding the whole experience very costly. " I guess there are alot of other women waiting in my neck of the woods! And yes I can pay but it is from mums savings that I'd otherwise use for a deposit or stg. But I am too scared of torsion so fear >>>> money. I've already decided to pay about 400 quid for an MRI privately but I'll only go ahead with private surgery if it's much quicker. GP hasn't actually told me how long it would be after the initial 4-6 months and MRI wait until I get it actually done but that feels long...:-(

I had similar a 3 years ago.

In context I had other gynea issues and it was found during my emergancy admissions for other things.

Mine was about 10 X 10cm and full of hair and teeth and other gross stuff.

It was a tricky time (as I was extremely seriously unwell) but I believe it was discovered on my 3rd emergancy admission in as many weeks. It was very clear that the consultant didnt want me to wait long (and I never had a wait to be referred to a consultant in the first place)

10 days after being discharged from my 3rd (week long) hospital admission I had ovarian torsion. OMG yes this hurts..... absolute agony, much worse than giving birth.
I went back to A&E for a 4th time, where I was being admitted to have the operation as an emergancy. However due to the delays waiting for a bed, by the time i had been admitted the torsion had undone itself, so I know longer required emergancy surgary "now" a few hours later. (I was told that emergancy surgery is more risky than planned so it would become planned as the emergancy was over)
However this episode of torsion moved me onto the "urgent" list, and I had my surgery as a "planned" operation about 2 weeks later.

The surgery itself wasnt pleasant but it wasnt too bad either. I had a long cut like a cesarian, 2 nights in hospital, and about 6 weeks off work, but probably not back to my real self for a good 6 months (but thats partly because of how extremely poorly I had been during the 2 months prior to my operation too)

My dermoid cyst was only discovered when I got pregnant with dd1, as I had some pain on the left side (she is 17 now)!!!

I had had it my whole life without any bother and it was about the size of a golf ball apparently.

Anyway, they said had I not been pregnant, they would try to remove it via laparascpopy. But as I was already pregnant, they put me on consultant led care and monitored me closely.

It was then decided (not by me) that I would have to have a C-section delivery due to the size of the cyst blocking the birth canal?!?

Anyway, I had to sign a waiver that they could remove my ovary along with the cyst during the C-section. And that's what happened, as otherwise I would have needed a blood transfusion!

My recovery took months, as it was combined with the C-section and I had a year off for mat leave anyway. I was quite traumatised tbh and thought I wouldn't be able to get pregnant again.

Doctors said like pp, even with 1 ovary, it will take over the job of 2. But mine didn't. I only ovulated every other month, but thankfully still managed to get pregnant with dd2 👍

I had this and waited 18 months for removal,mine was similar size. They removed the ovary and fallopian tube. I was told to go straight to A and E if I had strong pain so wasn't overly worried about torsion.

I had a grapefruit sized one removed on the NHS laparascopically and part of the ovary removed. It didnt affect fertility at all. I was having symptoms and you could see it from the outside protruding! It was done quickly but this was 20 years ago, so I imagine there is quite a wait now. I would guess it would be around £4K privately but possibly more.

I vaguely remember looking up private cost and it was 8k+ ,I did t want to go privately in case anything went wrong and I had to stay longer. I ended up staying in 2 nights and 3 days in total.

I had a few " normal" ones removed then a dermoid one ( teeth/ hair/ bones).. went on to have my second daughter .. took eight years.. NHS but 33 years ago. Good luck.

I had one that twisted on my ovary and burst. I had a weekend of bad period like pain and then it eased off. Scans showed a cyst and nhs removed it and my ovary 4 months later. After that initial pain I didn’t feel anything so was happy to wait for nhs to remove and not pay.

Thank you everyone! It's always scary when you have a surprise diagnosis, my friend had an ectopic pregnancy that was hell on earth (similar to pain described by tryinganothername). I think the torsion is worse than the bursting, though I think the bursting can lead to infections. You have all been very brave and I guess I will have to also ❤

Hi Op,
no words of wisdom but I am in the same boat so sending my commiserations.
I had discovered accidentally in December and it’s the size of an Orange. Being refers for MRI and then surgery. I am absolutely terrified. Hope you get on ok

Same as Fallulah I had this twice, first one with torsion and yes the pain is as described the second without, second was removed by keyhole which gave me a 3 week recovery. Both ops via nhs and reasonable quickly. Hope all goes well for you.

I found out I had a 9x9cm dermoid cyst in October. Went for MRI, it took about 2-3 weeks for the appointment and another 2 weeks for results. They gave me a bit of a cancer scare but got the all clear from that when the results were in. I was added to the waiting list in early December.

I had my operation last week. Not sure if it I was so quick to be called up because of the size but I was expecting a much longer wait.

I had keyhole surgery, four cuts in my abdomen - I'm not sure what they look like, I have avoided looking so far. The cyst spilt so I had a high risk of infection and kept in hospital for two nights but I was originally intended as a day patient to go home the same day. Due to the size they removed my whole ovary. It was a week today I had the op, I'm in a bit of pain, it's getting better - I'm more mobile now and can do light chores but still think it will be another couple of weeks before I properly recover. I'm not allowed to strength train for 6 weeks but I'm expecting to be able to start back running after three. Today, I can hardly make it for a five minute walk around the block, though. Good luck, OP, it's been a whirlwind for me.

I was thinking about going private too, but I'm glad I didnt because it all happened very quickly anyway.

They've given me a 'might be fit for work' note for one month which is very confusing, I'm not sure if it's covering me for time off sick or if I should go back now. (But I'm nowhere near ready, as it stands)

My nan had one of these.

It had teeth, hair, and she named it. She lost one ovary but kept the other.

It's me reporting back! Asked to see another GP (female) in same surgery. Turns out at my age (over 40), and at that size, its considered higher risk. This means I might end up being seen much faster than 3-4 months i was first told - she said it will be within 6 weeks on NHS. Apart from the operation cost >£4,500, it would mean if I need longer in hospital or have complications I don't continue to bleed even more money. I'm now much more hopeful. ☺️ The private doc i have now isn't a specialist and another private one I called has kept pushing the consultation appointment forward. Got MRI this week privately, have been told to share the MRI from the private doc by the female NHS GP once it comes through (in 10 days time). Annoying as it will be ready sooner but the private consultant isn't available...

Me reporting back again. I know I am overworrying so please forgive me for obsessing about this! but in case helpful to others newly diagnosed. MRI showed that it is actually slightly smaller (7x6.5x5.6cm) but has a tear in it which might make it more likely to rupture. The private gynae recommends taking out the entire right ovary and the fallopian tube because of my age (52). I am not booking any more private care - but I will update you next week when his quote comes through. He reckons April-May is the earliest I'd get the laparoscopy op, but I am going to cheekily upload the MRI to the GP and see if perhaps the tear might bump me up the NHS list(!). I think it will be upwards of 10k and frankly really not sure it's worth it. It's not my own fertility I am worried about - it's fast-tracking menopause - but I've got another private gynae and hopefully the opinion of an NHS gynae, to come. Will be interesting if their advice is different at all! I will get the CA125 results soon but nothing else looked concerning in my MRI report except the tear. N.B. They put a heavy weight on my pelvis during the MRI to get better images, and I think it did aggravate the cyst. Have had one short-lived (~2 sec) very severe jabbing pain the next day on the RHS, followed by a dull ache and some GI issues. You can also see a more obvious bulge. The radiologist said "you're a bit small aren't you" and used a towel to cushion it a bit. Not feeling my best since, but period due so could be that too.

Mine didn't rupture but on my first scan after diagnosis it has changed and bled - so presumably similar to yours OP. I was told to go to A and E if I had pain but was told very clearly that this wouldn't fast track surgery unless absolutely necessary. I waited 18 months for surgery ( I think I mentioned that up thread )

Wrt fast tracking menopause, I put on weight more easily and felt a bit hotter than normal. Before the op most symptoms had settled down. I'm very glad I didn't agree to them removing both ovaries which is what they wanted originally.

Apart from the wait I had excellent NHS care,I'm glad I didn't go private. Obviously a different matter of you have it through work.

Now I wish I hadn't googled that 😳