Endometrioma cyst

[CaseyA]

Hi All, have been reading through all the messages on here. This is my first post as I’m new to this.

So approximately 4 years ago I was diagnosed with an ovarian cyst approx 6cm, hospital insisted I do the watch and wait although I had pain regularly and heavy periods. Within 2 years I was the diagnoses with a “chocolate cyst” on my other ovary. Again watch and wait was recommended.

I was put on the contraceptive pill at 13years old due to endometriosis although never had a formal diagnosis and have never had any treatment for it.

The last scan I had was over 2 years ago due to covid I am still awaiting to be seen to have a scan to check the sizing.

Now having menstrual cycle issues along with other symptoms so have been put on the cancer pathway and have tests next week, I was just looking for information regarding the cysts really and how that’s effected other people. I’m 32 have a partner but no children but now this is effecting my life regular and I feel like I’m always fobbed off for it to be normal.

mid appreciate any replies and I am very aware all cases are individual. ♥️

[Jade2006]

Same thing happens to me .

This was because the cyst was large.

It wasn’t thank god , but deep down I knew it was endometriosis and I told the doctors this but I think when you have large cyst they often think it cancer .

I lost my ovary , had surgery sep last year , now on the waiting list for more surgery as it wasn’t dealt with .

It’s wrong of them to just say we will wait and see what happens with your cysts , they have obviously grown bigger .

I had a ca125 blood test raised .

I had my surgery at Christie’s not a nice experience to go through .

Hope your ok , if you need to chat message me xx

[Marcia71]

Endo often has raised ca125 levels which cancer does too so it’s always worrying but hopefully it’s endo. Chocolate cysts - endometriomas - are often signs of deep endo and that can be hard to see at lap but easier to see on mri or a transvaginal ultrasound but they need to be done by an expert in detecting endo. Most bsge centres have someone nowadays. If you can afford it you could pay for a private scan with such an expert it may give you some peace of mind and a way forward.

[CaseyA in reply to Marcia71]

I’m not too worried about the whole cancer pathway as I know it’s protocol, but I just feel like I was told I have these cysts and then left. But my symptoms seem to be getting worse as time goes by and I have not had a scan for almost 3 years now, never had anything done about the endometriosis either so I just wanted to see what my options were. Thank you for your reply. I think private might be something I’d have to look into now x

[Marcia71 in reply to CaseyA]

I think a private scan and maybe an appointment can really help. I did that at different times and the consultants helped navigate nhs referral to them so that I could just pass info to gp to refer me.