Twisted ovarian cyst

[mondaytosunday]

Last week I had the most unbelievable pain and vomiting and it turned out to be a twisted ovarian cyst. After CT scan, internal scan and pelvis exam and blood tests they think it’s unlikely to be cancerous but can’t determine that for sure til it’s removed. It must have untwisted as the pain has subsided though I get twinges. I need an mri before removing it and though I’m on a two week referral the MRI is booked for mid October! What I’m anxious about is they told me there’s a 50/50 chance of the pain returning. I’m post menopausal. Anyone had any experience with this and did the pain come back? How long did you have to wait for removal? How was the op and recovery? I live alone (widow, one child at uni one who lives away) and stressed about the pain it was excruciating. thanks.

My daughter had one of these. Once they made the decision to operate it was done within a week and she was home the same day after the operation. Very fast recovery time. it was slightly different though as hers didn’t untwist and she was in hospital until it was removed.

Hope it is sorted quickly for you.

Why are they waiting until October?! That's ludicrous. Normally these are taken out PDQ

I had this in my 30s. My gp insisted I had IBS but one night the pain was so bad, vomiting, struggling to walk, I drove to a&e at 3am - not my best decision - got there and passed out in triage. They scanned immediately, and I was in theatre by 8am.

I don't mean to frighten you but if the pain returns, DO NOT mess about, go straight to a&e. Dermoids can be nasty. Because mine had been ignored, I lost an ovary & tube, needed a week in women's surgical and seven weeks off sick. Wasn't allowed to drive for 6 weeks.

Thanks. I will go straight back to A&E if the pain returns - they have told me as much, and I will likely have the it if that happens.
I think they want an MRI to see exactly what they are dealing with. After the scans and blood test indicate it is unlikely to be cancerous and as I am post menopausal it is not an emergency (they don’t need to worry about saving my ovary), but I should still be seen and diagnosed for sure within 28 days according to government mandate. I contacted my GP to see if they could request it expedited but they have batted it back and told me to contact the hospital directly which I have done (PALS). I await their response!
I think the long wait is due to the usual backlog. My MRI is even scheduled at a different hospital.
For those with experience- I have to drive six hours there and back to drop my DD to uni in September and I have to go to Spain for business in October. How long after the op did you feel back to normal?

Mine was back in the late 1980s when only ultrasound was available. The pain was excruciating, but it was diagnosed and removed within 48 hours. I didn’t have keyhole as a partial removal of the ovary was also necessary. I couldn’t drive for 6 weeks.

I had this in my early 30’s. Woke up one morning feeling sick and a sore stomach. By mid morning I was vomiting and in agony so went to my Doctor and they sent me to hospital.
Hospital kept telling me it was an ovarian cyst and that I shouldn’t be in that much pain, after 2 days they decided to do keyhole surgery to drain. However, they ended up having to open me up as they tube had twisted, and was like a fat sausage, rather than like a strand of spaghetti and the ovary had died.
Spent a further 3 days in hospital and the had to stay off work for 8 weeks.

I was 26 when I had this. Excruciating pain and looked pregnant. Went back and forth to doctors as it kept twisting and untwisting before it was diagnosed and then rushed to A&E in the worst pain and operated on the following day. 10cm dermoid.

Goodness! Well it was diagnosed right away with the CT scan. They agree it has to come out and if course when talking about it with them it sounded it would be sooner rather than later but they don’t book the tests!
It should be keyhole, and they now do it as same day if done in the morning (which they should with me as a type 1 diabetic so I don’t have to fast all day).
No word from PALS yet - Google says to email the cancer booking team next.
I’ve had two Caesarians and understand if there’s a lot of scar tissue they may have to open me up rather than keyhole….

Mine exploded.

(that wasn’t the word they used).
but it got untwisted and dumped a load of biological gunk into my abdominal cavity that meant I was very very ill.

I was on a waiting list for it to be taken out but never got the chance.

it was very very unpleasant

Burst is how they phrase it @Octavia64. My sister had one in her teens. I remember her crying at the dinner table.
So update: in doing the rounds of actually calling the hospital I went from PALS to booking to gynaecology only to find out that my ‘scan’ appointment in October is not for an MRI but a tranvaginal one which I already had! They could find no request for an MRI!!! So I’ve called radiology (no answer) and gynaecology booking (no answer) and written another email to PALS and Complaints department. I can’t believe it. If I had waited the two months and gone in to find it was another transvaginal scan I would have hit somebody. Apparently you can actually walk in to the PALS department on Monday. I’m considering that plus going private (£600 for nearest one though). Meanwhile I’m supposed to go to the IOW Tuesday and I’m considering it, as if it twisted again and had to go to hospital there my son is nearby and could help! I feel my life is on hold waiting.

Update:
I went in to PALs in person and spoke to a kind woman who wrote to gynaecology with my concerns. I also got an email back from complaints department saying they were doing the same. So I got a call from gynaecology this morning who said I was referred to a specific consultant at the other hospital and the transvaginal scan would be different to the one I already had. The issue with time is he/she only does clinic on Thursdays and is away on leave for two weeks in September and other days are booked up, but as I’m on a two week referral she will try and move it up. Why I have to go see a special consultant for what I assume is not an unusual issue I have no idea. And why is there only one available (I live in London where there are hospitals all over the place). I asked why the two gynaecologists I saw both said MRI was next step then an op and she said they must have reviewed the case and decided on this current referral. Meanwhile I’m on eggshells expecting every twinge to be the start of the pain returning!

I had the exact same thing in 2023. Worse pain of my entire life and just randomly started one morning. They said the same to me that they couldn’t tell me if it was cancerous or not until removed. I waited from June and had it removed in the October. It was 13x14 cm in size and unfortunately had twisted so much it killed off my ovary and fallopian tube so had to get it all removed. The pain stayed with me for the whole of June I was bed bound in and out of hospital and told to wait for my gynae appt. It was hell! I was taking naproxen, co-codamol and I know you shouldn’t but a friend had liquid morphine and she gave me a bottle which helped so much. After that first month the pain went it was just twinges like yourself.

I really feel for you and anyone else who is going through it/ has been through it. It was a horrific time. Good luck. Keep pushing for a earlier scan contact whoever requested it to expediate it

Also I had keyhole surgery and it was fine. Had it in the morning and was home by about 4ish. Recovery was ok as well and luckily it was cancerous.

Second update: met with the lead consultant on pelvic masses and gynaecology and had another quite long transvaginal scan. (The doc was quite dishy with lovely bedside manner 😄). Cyst is the size of a grapefruit and he has booked me for an MRI in a couple weeks. The cyst size, my previous caesareans, type 1 diabetes and my weight mean a laparoscopy is unlikely and he says depending if the MRI shows it has twisted itself to death then they might leave it! I don’t want it left but nor do I want a risky op. I guess one thing I can do is get my BMI down. Anyway now wait for MRI. He did say he thought it had probably been there a while and low risk of retwisting. Doesn’t help with my plans for Spain though as I won’t be covered for an ongoing issue.

I wouldn’t want to leave it either but see what the scan shows and I suppose they have to weigh up risks and benefits of removing it. Would they do full surgery if they can’t do the laparoscopy?