Update on endo?: Hi Ladies just an update... - Endometriosis UK

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Update on endo?

Becky0410 profile image
8 Replies

Hi Ladies just an update. I had my ultrasound scan external and internal and it hurt like hell. They couldn't find anything. They couldn't see any cysts which is a good thing but I'm still confused as to why I still have this horrible pain and symptoms of endo/ovarian. We have it in the family endo and ovarian cancer and fibros. I have another appt with the consultant in March for a follow up, so I'm going to push for the laparoscopy and possibly the CA125 blood test. Anyone else ever had this? Thanks

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Becky0410 profile image
Becky0410
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8 Replies
Kelzmatt profile image
Kelzmatt

Hi sorry to hear of your pain, I had an internal 2 years ago and nothing showed up they said it was ibs but still had lots pain I pushed for a laproscopy which showed I had one tiny patch which they removed, I was still in loads of pain so kept pushing 3 months later they agreed to a mri scan which showed I was covered in endo and adeno my hysterectomy is due in next two months good luck but I would push for an mri

Becky0410 profile image
Becky0410 in reply to Kelzmatt

Ah Hun. I hope everything goes well. My pain is lower actually in my ovaries and pelvis. I have got IBS but I know it's not that. I will keep pushing for things to be done. How old are you if you don't mind me asking? As I'm 27, I've had two miscarriages so am frightened to get pregnant and me and my husband don't feel it right at the moment. X

JeanOsborne profile image
JeanOsborne in reply to Becky0410

Hi Becky. Endo doesn't always show up on ultrasound or Mri. It depends on how deep it is. Your best option would be to have a laparoscopy by a specialist surgeon at a BSGE centre. Good luck

Kelzmatt profile image
Kelzmatt

For jeanosborne to say it doesn't show up on a mri is a load of rubbish, they said I didn't have endo until my mri showed I was actually covered just puttin that out there. Becky I am also 27 I have 3 children and decided I have had enough children before I found out about the endo, I also suffered one miscarriage and my last two babies came early. All the pain I have is deep in my left tube/ovary I have an enlarged Fallopian tube hence the pain I wish u luck x

Tboag profile image
Tboag in reply to Kelzmatt

Kelzmatm I think Jean said it dosnt always show up on a MRI and she would be right in saying that, if it is flat in shape it won't show up, superficial endo dosnt show up,

Kelzmatt profile image
Kelzmatt in reply to Tboag

My apologies I read it wrong, didn't want the poster to think that an mri wouldn't show it

JeanOsborne profile image
JeanOsborne in reply to Tboag

Thanks hun

Miracle77 profile image
Miracle77

Endo Specialist at BSGE centre told me he does not agree with CA125 blood test as can be raised for a number of reasons other than endo so is not helpful. Had external & internal scans which showed endometriomas but missed the fact my ovary/womb and bowel were stuck together and also missed the fibroids which had been causing my abnormal bleeding. Hope u get some answers soo

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