Ruptured ovarian cyst not showing on scan

They are fitting a mirena for me on Thursday so I’ll see how I get on (I’m 41)

I had the pain you describe, starting in my early 20s. I was eventually diagnosed with severe endometriosis. Years of internal bleeding from the endometrial tissue dotted around me abdomen caused extensive adhesions and scarring on my bowel and bladder. I also developed scarring around the sciatic nerve and had chronic problems with sciatica.
I had multiple surgeries since it affected daily life and fertility. Once I had my DS I had a Mirena coil fitted and my life was transformed.

I’m now post menopausal and life is so much better without hormones. Although my bladder is knackered. The nerve damage from endo lesions mean that I suffer with urine retention and I can’t always feel when my bladder is full. I don’t have incontinence issues as such but because my bladder has to be very full for me to feel it can be a problem.

Chocolate cysts are an indicator that you have endometriosis which is not detectable on a scan or MRI. I would make a list of all your symptoms when you see your GP, so you don’t forget to mention anything. Endometrial lesions can be all over the place and the pain can refer. I used to get a pain in my liver area when I lay on my right side, it went when I rolled onto my left side. It was due to adhesions tethering my left ovary to my abdominal wall. I had to stop running because of it since the constant movement caused tension.

A large cyst can also put pressure on the sciatic nerve. I had a large fibroid that cause severe sciatica. I was on HRT which had caused it to grow rapidly, once I stopped the HRT it shrank and the sciatica disappeared.

I haven’t, but I don’t get on with hormones at all

I would describe the pain I get as someone stabbing and twisting my ovary, I feel faint with it and often yelling in pain. Sometimes it feels like I want to stab my ovary just to relieve pain which probably sounds weird
being on all fours helps a little

I take lots of pain relief, heat pads, TENS machine, have adjustments at work to take time to let the medication kick in
when its really bad I go off sick for a couple of hours

A chocolate cyst is endometriosis, surprised they didn't explain this. The pain may or may not be the cyst, pain like this is common with endometriosis regardless of whether there's a cyst or not. Have you been referred to gynae?

when i had a ruptured ovarian cyst the pain was incredible, and when i went to the doctor they said i had several more, booked me in for surgery there and then and they were all removed. They told me there are 2 ways to handle it: either surgery or go home, lie down with some pain killers and wait for it to pass. I elected for surgery and afterwards the surgeon told me that had been a good decision because there were so many.

I'd had it before but had no idea what it was, and just rode out the pain the first time.

it sounds like you need to see someone during an episode of pain. Big cysts can tort quite easily and if the pain doesn't resolve quickly it needs fixing (because it can cut of the blood supply to the ovary on that side). GP appointment sounds sensible if the pain's settled, but if it comes back before then get thee to an A&E. (also fwiw, USS doesn't seem as accurate as you'd expect in spotting which side the cyst originates from so I'd keep an open mind...).

HA. I have endo everywhere, deep infiltrating, constant a&e trips with pain, it’s so bad I need a bowel surgeon as well as a specialist endometriosis surgeon
it was a year to be seen, and I’ve waited over 6 months for surgery despite being on morphine, dihydrocodeine and numerous other pain meds

It varies, usually a few times a month not as bad but once a month or so I have a huge flare where I need morphine
I tend to just ride it out at home as a&e can’t do much

Thank you I will. I've found the waiting times for my local hospital gynae and it's 42 weeks 😭

Are you sure this is not an average wait time? Patients will be triaged according to referral details and some will be seen faster than others.

I had the exact same thing happen about 3 months ago. Was out for a day at the beach and out of nowhere got stabs of excruciating pain from my left side that radiated all under my abdomen. Was so painful that no position would calm it- I ended up keeled over, hobbled over to a wall to lean over, tried trying to stand straight but nothing worked, it was excruciating, as you said OP, exactly like labour pains. It was so bad I nearly threw up but ended up making my way to a bench, laid down and passed out temporarily.

Since then I developed painful lower back pain which moved to my left bum cheek then down my left leg. I've been signed off work ever since as some days can barely walk, feel like I'm dragging my left leg along as if it weren't my own. The Dr seems to think Sciatica so I'm booked in fir some Phsysio in a few weeks but it only started after this awful episode of pain.

I have a transvaginal scan tomorrow morning, not sure if it will show anything but I was originally convinced it was a ruptured cyst as the way the pain came on so quickly it had to be something going wrong in my opinion but Drs seem to think that and the back/leg pain aren't linked.

Ah, to be a woman 😭

Ok good. I wasn’t sure if the cyst was a new discovery or if you already knew it was there, but I’m glad you’ve called the doctors. If they’ve said it’s a chocolate cyst there’s probably some underlying endometriosis, which might explain the severe pain during your periods. When they ring you later ask for a gynae referral, which hopefully they would do anyway, but it sounds like there’s a couple of different things that are outside of what I’d expect a GP to manage and I think you’d benefit from being seen by a gynaecologist.

Over 2 years at least now, gynae has a long wait
I am having an operation this week to remove the cyst, ovary, endometriosis and free up my bowel and bladder
heat helps me a lot and basically v gentle dancing type movements, just rocking in place