Endometrioma & complex cyst - confused!

[Scoutybob]

Hi there

Just looking for some advice. I’ve had some great advice on the cancer forum to do with any potentially malignant issues but I’d love to advice from an endometriosis side.

I’ve never had any period pain or issues at all (I’m 40) until a couple of years ago (except lower back and sciatic pain since around 2016-17) and then they’ve been getting progressively worse. I have extreme bloating and then I’ve had some cycles that had me doubled over screaming with pain etc. Increasingly I’ve been having issues with bloating, pressure and pain outside of period time as well.

I have terrible lower back pain, can’t get comfortable in a seat at all, sciatic pain, pain that hits me like a brick around 2-3 days before period and carries on until a fog lifts about 48-72 hours after the start of my period.

My doctor briefly examined me, sent me for bloods inc CA125 and urgent ultrasound. My CA125 was 25 and other bloods clear. But scan seemed to show numerous issues. Right adnexa mass is 7 x 6 x 3.5 I think and was considered a likely tubo ovarian mass (sonographer got a 2nd opinion in the room) or alternatively a complex cyst. It has cystic spaces plus solid components and demonstrates vasularity. On the left ovary I have two cysts, one likely endometrioma (2.5cm ish) and a para ovarian of about the same size.

The day after the scan my doctor called. She’d spoken to the hospital and gynaecology doctor on the ward had reviewed the scan and felt it was unlikely to be an abscess and likely complex cyst so I have been referred for urgent gynaecology but my first appointment isn’t for 6 weeks and I’m in ongoing pain and feeling confused.

Does an endometrioma mean I have endometriosis?

And could the other mass potentially be a very large endometrioma? Is that possible?

Thanks in advance!

[Tiredgal72]

Hello, sorry for what you are going through. I had a similar situation to you in that an endometrioma was picked up on ultrasound. If it is an endometrioma then it is likely you would also have endometriosis elsewhere from what I've been told by consultants. This was the case for me and extensive deep infiltrating endometriosis showed up on an MRI. This might be something you could push for having when you see the gynae? I can't say about the large cyst but I know some people have been known to have very large ones so it could be possible.

Let me know if you have any other questions, I was only diagnosed this year so I understand what you are going through. Definitely push for further investigation, you can't continue a life of pain! Best of luck x

[Scoutybob in reply to Tiredgal72]

Thanks so much for this. So did you have a scan that showed an endometrioma and then referred to a gynaecologist? And did you then get sent by the gynae for an MRI at that appointment? X

[Tiredgal72 in reply to Scoutybob]

I ended up on a cancer pathway as I had high CA125 levels too so I had an MRI fairly quickly and was sent the results in a report (saying it was endo and not cancer). I haven't actually seen anyone yet as I'm on a waiting list to see a consultant at an endometriosis clinic (I am exploring going privately because of the wait).

When you see the gynae I would push for an MRI to see if they can get a clearer picture and ask to be referred to a BGSE certified endo clinic to make sure you see a specialist rather than a general gynae. They have more expertise with treating it properly. Happy to help any further if you need! X

[ccfd9]

Hi, yes an endometrioma is a diagnosis of endometriosis. The 2.5 cysts is relatively small and can be absorbed, the larger mass is also likely to be endometriosis but could be other things. The nutritional supplement NAC has been shown in research to reduce cysts and symptoms of endometriosis. You may also find that avoiding certain foods like wheat and gluten may help, also shown by research. You could try a good nutritional therapist endometriosis.co.uk for quicker help.

[Kieraface]

hi scoutybob,

I’m so sorry to hear you’re going through this. I experienced daily horrendous pain that had me in tears since January this year. I finally got diagnosed with endometriosis and adenomyosis this year in July. Originally had an ultrasound which showed a bulky uterus and a 4-5cm endometrioma cyst. It didn’t show anything else on there so my gyny sent me for an MRI which showed deep infiltrating endometriosis and cysts on the ovaries. I didn’t have any complex cysts as far as I’m aware but I also had a para ovarian cyst. Had it removed along with the endometriosis 9days ago. I have already noticed a difference in the pain. My endo was posterior so impacted my back and bowel and it definitely feels so much better - no longer crying with severe back and ovary/hip pain.

Hopefully you’re in with gyny soon and get surgery asap to get things sorted. I would definitely push for an MRI because it’s gonna show more of what’s going on and also direct them to where your endo is xx

[Scoutybob in reply to Kieraface]

This is really interesting to read and so glad you’ve got some relief! You must be so pleased. Mine is constant with lower back and sciatic so I feel it’s likely it will show up as being there but obviously don’t know yet. A lot of symptoms feel like they’re piecing together now x

[Kieraface in reply to Scoutybob]

I had severe back pain and hip pain, the pain got so bad it went down my legs and I would have my legs buckle under me when I walked, it was awful! Endometriosis is seriously underestimated- as a female condition it’s not been as broadly looked into or understood but it can have massive daily impact on our lives. I really do hope you get your answers soon. Please let me know how you get on xx

[Honeybeehappy]

Hi there. In 2010, after 2 years of serious stabbing pains, A&E visits, and not getting pregnant, I had an ultrasound that showed a 10cm x 8cm complex cyst. CA125 markers were elevated. They couldn’t rule out cancer but tbh, it’s a precaution and they moved quickly. Apparently, cysts escalate CA125 and it was assuring to know that those who sadly may have cancer, their CA125 levels can be in the high hundreds and thousands. My levels were about 120 abd they weren’t overly worried about that. So, this was my first intro to learning I had Stage 4 endo and it was a bit of a shock actually. 6 weeks later, they took the massive cyst out via open surgery due to the size of it. I’m sure surgical techniques will have got even better in the past 13 years so open surgery might not always be the route. In the end, it all went smoothly, I recovered well and there was never any cancer. They just go down that road to keep you safe. It’s a head buster for sure but hopefully all will be fine. Years later, I had a large hydrosalpinx which is basically fluid in a blocked tube. These scans are sometimes tricky to fully understand and often they don’t fully know what’s going on until surgery. Try not to worry as best you can and good luck with everything x

[Scoutybob]

Just to update everyone - had my private scan today and she was brilliant and so helpful. She’s confirmed endometriosis and adenomyosis. The larger cyst on the right ovary is actually not one large tubular mass. It was around a 4 x 4 endometrioma but goes very unclearly in to a blocked fallopian tube which has then swelled up to bigger which is why it looked to be one structure. She’s said it’s also adhered to the sacro ligament on the right side. Left side is pretty similar but smaller cyst size. She also said I had kissing ovaries?

So at least I know what I’m dealing with! So now it will be waiting until my nhs appointment at the end of November and go from there.

I know it’s not easy to say but does this sound like it might be treated with surgery?

I guess they need to see how much further it has gone.