7cm Cyst Pouch of Douglas

Hi, I am new here and hoping for some advice please. I have been back and forth to the doctors for two years with various issues with abdominal pain. Recently I have been having trouble urinating and was sent to a urologist. During ultrasound of my bladder, the sonographer found a 7.2x7.6x4.8cm cyst in the pouch of Douglas with uniform low level mobile echoes and a thin septation within the cyst. They are unable to see either ovary seperate from the cyst. They have said it appears to be an endometrioma. I have seen gyneacolgoist who says it is the tip of the iceberg and that he thinks I have widespread endometriosis. His recommendation (as I have finished having children) is to be referred to a specialist endo centre with a view to having full hysterectomy and major removal of endometriosis and adhesions. My concern (apart from major surgery) is that while I wait for all this to happen, are they putting me at risk by not acknowledging that this has a slim chance of being cancerous. Please can anyone tell me if that has happened in their case? I would also love to hear from anyone who is or has gone through similar ops and how they are finding the recovery/surgical menopause (I am 40years old). Thanks for reading!

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  • Are you being treated at a BSGE endometriosis centre? Their website lists the hospitals which are endometriosis centres. It's important to be treated at one of these centres.

    Have you had a CA125 test? When my endometriomas were detected on an ultrasound I was given this test to see if my levels were high / elevated which would have given cause for concern about ovarian cancer. X

  • Yes, my gynaecologist said there is no way he can treat me and that I would need to be referred to the specialist centre. It is one of the centres on the list but I have not heard anything yet. My ultrasound was back in November, the waiting is driving me insane.

    The gyneacologist also said the cyst is attached to my uterus and I have terrible lower back pain.

    I have had the CA125 test and they said it was 'negative' which is hopefully a good sign but they did not tell me what number it was - not sure if that actually means it was 0?

  • I am currently waiting for a hyst at a bsge centre and have a surgery date for March. I was referred there after surgery carried out by general gynae found endo that was too extensive for him to treat. I was originally referred to the bsge centre in May, had an ultrasound with them in June (which is far more detailed than an ultrasound in general radiography) and then saw the consultant for the first time at the end of July. I then waited 16 weeks for an initial exploratory lap which was carried in mid November so that they could map the disease properly and plan the hysterectomy/BSO/excision. With regards to the hysterectomy, please be aware that if the bsge specialist recommends it (and they might not), they will most likely recommend also having your ovaries removed as the disease is far more likely to reoccur if they are left. It is also an absolute last resort surgery and they will probably want you to have some of the drug treatments first.

    I had the CA-125 done 3 times in 2015 when I was still trying to get a diagnosis. Anything above 35 is considered abnormal and warrants further investigation. My levels were consistently around 100 and even with that, they didn't think it was cancer based on ultrasound findings and symptoms. If they thought that there was any possibility that your cyst was cancerous (and they can accurately identify malignancy using ultrasound) you would be in surgery now, not waiting for an endo referral.

  • Thank you, that is reasssuring, I think it is in the back of my mind that I am over reacting but having being misdiagnosed for another condition in the past I am a worrier.

    At this moment in time, I think I would prefer to have the full hysterectomy as I have had three c-sections and have PCOS too. I know that it is not a cure for endo but while they are in there I think I would prefer for them to take it all if they can.

    Hope all goes well with yours.

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