Cyst not showing on ultrasound

[ailis95]

Has anyone else had numerous ultrasounds that don’t show a cyst that was found during a laparoscopy?

I had a transvaginal ultrasound in January prior to my laparoscopy in February and they didn’t see a cyst, then they confirmed after the laparoscopy that they had found a 5cm cyst on my left ovary.

I had another ultrasound yesterday and the doctor said he could not see the cyst.

Has anyone else had a similar experience?

[Chrissie66]

Hello

Did they not remove the cyst during the laparoscopy? 🤔 It seems strange that they would leave it in there when they had the opportunity to remove it there and then.

Alternatively, it could have resolved itself although at that size I would have thought you’d have known about that happening.

Have you got any paperwork from after the op? If not, you could contact the surgeon’s secretary and ask them for your records

[ailis95 in reply to Chrissie66]

No they didn’t remove it, I think they take the approach of checking whether they increase or shrink before removing them. I’ll definitely give the hospital a call and see what’s going on 😖

[Chrissie66 in reply to ailis95]

Oh, ok, that makes sense. Thinking about it, the consent form you would have signed before the op probably said they were just going in for a look, so they couldn’t remove it as that would be outside the scope of the consent form.

I’m guessing that as endometriosis wouldn’t be classed as an emergency and the focus has been and still is very much is on Covid 19 lots of people wanting/needing other procedures have had them pushed back, and that’s what’s happened to you.

But in the meantime you could potentially be sitting on a time bomb - 5cm is a decent size for a cyst, and if it bursts or even leaks (which is how I was diagnosed) you’re going to know about it 😖 Incidentally, if that DOES happen (and I know I keep saying it, but you’ll know!) get yourself straight to A&E.

So yeah, definitely worth giving them a call, or perhaps even better sending an email to your surgeon’s secretary asking them what the plan is going forward. And if you get a response that says that the scan yesterday showed no endometriosis activity, remind them that that’s exactly what happened before and that the laparoscopy found the cyst. Give it a few days though; if your scan was only yesterday it’ll take time for everybody to get the full report.

Good luck 😊 x

[annatonina]

Pretty much exactly what happened to me - I had an ultrasound that was completely clear, then had a 5cm cyst removed during a laparoscopy. It was sent to cytology who confirmed it was an endometrioma. Made the pain better for a while but it gradually started coming back so I went back to the gynae, she did another ultrasound which was also clear and then very aggressively told me there was nothing wrong with me and discharged me back to my gp! I tried to argue that my last ultrasound was clear despite the cyst and that I've done enough research to know that's not how endo works, you're not "cured" just because you had a cyst removed, but she got very upset at this and kept telling me I just had "bad hormones" until I left the appointment in tears.

I should really ask for a second opinion but she was the specialist in my area and I'm pretty sure she was the only BSGE accredited consultant at my hospital and the next nearest centre is nearly 2 hours from me.

[ailis95 in reply to annatonina]

Thank you for replying - I literally did a sigh of relief when I read your reply as I felt like I was going crazy and it was all in my head!

I’m sorry you’ve gone through this, I can’t believe it’s so hard to get anywhere with this condition! The symptoms are horrific and just brushed under the carpet constantly.

What symptoms did you have that made you think the cyst was coming back if you don’t mind me asking? X

[annatonina in reply to ailis95]

I think I assumed that when I had the piece of paper that said I had endometriosis the "it's all in your head" accusations would stop but apparently not!

My biggest symptoms are nausea and fatigue and they didn't improve much after the cyst was removed but the horrific period cramps I was getting almost entirely went away. I got through my first period after the lap by taking one normal dose of paracetamol which completely got rid of the cramps for the whole month, I was so happy I repeatedly told my partner about it (much to his amusement). I think it was gradual, each period was slightly worse than the last until by the time I went back to the gynae I was right back to no painkillers could touch it and the cramps put me in bed for a few days and lasted over a week.

The horrible gynae insisted I get another Mirena fitted despite it doing absolutely nothing the first time, so I had that fitted in February and then had the worst cramps of my life 24/7 for about 6 weeks - I passed out a few times and went to urgent care once. I said I wanted it out and they said I had to wait 6 months to see if it settles. Eventually had it removed exactly 6 months later - the pain had improved but it was still worse than my periods before the coil. I'm coming up to my first period since the removal and I'm very interested to see what it's like. If it's no better than before then I will definitely go back to the GP for a second opinion.