Endometriosis UK
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Suspected Endometrioma could also be desmoid or Sarcoma??

Hi, I was wondering if anyone has a similar experience or could shed any light on this scary and confusing situation I’m in.

It will be 2 years in March since a lump was found on my abdominal wall by ultrasound. The radiologist was unsure but suspected an endometrioma.

I am now with a bsge consultant/surgeon and have a operation for excision scheduled this month.

What is making me increasingly nervous is the fact that he keeps telling me that they can not be sure that it is an endometrioma until the biopsy results come back and that it could be a desmoid or Sarcoma.

I have been waiting for this surgery for a very long time. I was not happy with the first surgeon I saw and asked to be referred to this centre as it is a specialist endometriosis Centre & then the hospital kept sending my appointment letters out to the wrong address and I am also having a joint surgery as I also need a hernia repair so the wait time has been very long.

I took comfort in the thinking that if they really suspected a sarcoma they would not have waited so long to give me this surgery but since seeing my consultant for my pre op assessments and hearing those words again I’m beginning to worry again.

Has anyone been in a similar situation at all or had a suspected endometrioma turn out to be a desmoid or sarcoma?

Thanks xx

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Hi, I understand your worry. I went in for surgery to remove an appointment endometrioma from my left ovary, and woke up to discover they’d removed my right ovary along with a substantial dermoid cyst. Two years later an abnormality on my left ovary was picked up during a rheumatology mri of my hip. I was rushed through urgent referral to gynae oncology. I had a CT scan and another mri, and several extremely stressed weeks, before the oncologists confirmed that they thought it was likely just another endometrioma. I had surgery a week later and it was indeed another Endometrioma. What I learnt from this experience is that the mess caused by severe endo can make imaging very difficult, and sometimes surgery is the only way to be sure. Be reassured that they are not rushing you through oncology. If it is a dermoid, then they will analyse. Most are benign, mine apparently contained fully formed teeth and hair, which grossed me out, but apart from the fact that it was twisting my Fallopian tube was not harming me. Hope you get answers soon

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Hi Girl1969, thank you so much for your response.

Reassuring to know someone has gone through similar and though an endomtrioma is not something i’d Put on my wish list or wish on anyone else, I’m glad that it turned out to be an endometroma and not something more sinister.

Like you say, I’m clinging to the hope that if they really thought it could be a Sarcoma they would have got a move on and done this surgery already. One of my surgeons was like oh it’s definitely not cancerous, we wouldn’t have messed you about so much if it was and the other one keeps telling me it could be. So confusing, I go in feeling confident and optimistic every time and leave feeling like a nervous wreck! Plus the fact I have not definitely been diagnosed with endometriosis yet as they will be doing the diagnostic lap as well as the open surgery to remove the mass.

I’m really nervous.Guess i’ll Just have to wait and see the outcome but know I’m going to be a nervous wreck until that biopsy report comes back.

Again thank you so much for reassuring me!

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I don’t know if they’ve done a CA125 blood Test for you. That caused me added stress. Normal is under 32 and mine was 475, but was still NOT cancer.... so all good thank goodness

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Gosh I could imagine that being extremely stressful! Glad that it all turned out ok though!

No, they haven’t. I had an MRI sept 2016 and my last ultrasound was in May 17.

I know the MRI was not great because I was in there ages and the radiologist said the images weren’t clear enough. They also couldn’t even see my hernia on that MRI and unfortunately for me it it’s clearly visible to the naked eye and has shown up on every other ultrasound and MRI.

After that MRI in sept 16 I missed around 3-4 appointments as they sent my letters to the wrong address, lost letters regarding medication to or from the Pharmacist( I don’t know whom to believe 🙈) there always seems to be some mix up, I could go on.

I expressed my concern to the endo nurse the last time my consultant mentioned that it could be a Sarcoma and she said but you’ve had the CA125 haven’t you and I said no. No one has tested me for this and the radiologist at my last ultrasound wrote in the report that I should have a fine needle biopsy if it is not going to be removed within a few months, which it was not.

I settled and calmed my nerves thinking surely they would have seen me quicker if it’s anything to worry about yet here I am again.

Just hope I’m worrying over nothing, just very confusing and unhelpful to be honest. Not had the best experience with it all.

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I think you need to have a telephone conversation with your gp who should liaise directly with your consultants on your behalf as it sounds like things have slipped through the net.

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