Hysterectomy... NHS specialists giving mixed messages

[Bubbas Grill]

Hi Folks,

I'm trying to garner as much information as possible and would welcome any thoughts through experience.

Brief outline..

Mrs BG is 52. She continues to have her normal menstrual cycle. On a few months last year the pain at the start of her period was way more intense than normal. Almost up at fainting levels.

Naturally I was very concerned and encouraged her to go to the GP which she then did. GP referred her to a Gynaecologist who then instructed a series of tests and scans. Blood, CT, MRI etc.

They identified a 9 cm ovarian cyst which they concluded with 99% certainty was non-cancerous. This 1st Gynaecologist said at the time that they would suggest no further immediate action however a further referral to an Endometriosis Team was put in place.

We heard nothing from the NHS for 5 months until a video appointment was made for yesterday. During these 5 months Mrs BG's periods have been at predominantly normal levels of discomfort. Nothing like the intensity she suffered last year.

We were shocked when, during the video appointment yesterday, the recommendation was for a full Hysterectomy.

We have taken this as mixed messages from both the specialists. The 1st being ''see how you get on living with it and we'll keep an eye on discomfort levels'' and the 2nd being ''we want to remove it and you should have a full Hysterectomy while we're doing that''

We have arranged for a Private Consultation to get another opinion as obviously this is a Big Deal and means a long recuperation, HRT etc. She is understandably very upset and I am extremely worried for her. We'll hopefully know more/better after the Private Consultation.

Anyone have any experience?

Thanks a lot,

BG

[dreamer75]

I had a hysterectomy a few weeks ago, happy to answer questions but perhaps via DM.

Also the hystersisters website is pretty good for support, advice, resources etc.

Edited by dreamer75 on Sunday 31st March 10:09

[Aston Traveller]

Bubbas Grill said:

Hi Folks,

I'm trying to garner as much information as possible and would welcome any thoughts through experience.

Brief outline..

Mrs BG is 52. She continues to have her normal menstrual cycle. On a few months last year the pain at the start of her period was way more intense than normal. Almost up at fainting levels.

Naturally I was very concerned and encouraged her to go to the GP which she then did. GP referred her to a Gynaecologist who then instructed a series of tests and scans. Blood, CT, MRI etc.

They identified a 9 cm ovarian cyst which they concluded with 99% certainty was non-cancerous. This 1st Gynaecologist said at the time that they would suggest no further immediate action however a further referral to an Endometriosis Team was put in place.

We heard nothing from the NHS for 5 months until a video appointment was made for yesterday. During these 5 months Mrs BG's periods have been at predominantly normal levels of discomfort. Nothing like the intensity she suffered last year.

We were shocked when, during the video appointment yesterday, the recommendation was for a full Hysterectomy.

We have taken this as mixed messages from both the specialists. The 1st being ''see how you get on living with it and we'll keep an eye on discomfort levels'' and the 2nd being ''we want to remove it and you should have a full Hysterectomy while we're doing that''

We have arranged for a Private Consultation to get another opinion as obviously this is a Big Deal and means a long recuperation, HRT etc. She is understandably very upset and I am extremely worried for her. We'll hopefully know more/better after the Private Consultation.

Anyone have any experience?

Thanks a lot,

BG

You say bloods were done. For an ovarian cyst then a CA125, CEA, CA19-9 should have been looked at. No test however is 100% indicative for what it is looking for. I expect that a CA125 was done which is looking for signs of ovarian cancer. But- not everyone has a raised level. Especially if it is the mucinous type. CEA is a general test looking for possible antigens that cancers produce.

Also cells in cysts can change over time from benign. A CT scan or MRI scan may not be enough to give a full picture. A PET scan can highlight cell dividing activity which cab be useful.

All a bit scary I know. A forum called healthunlocked might be useful as is Ovacome. The ladies there have all sorts of experiences that might be useful (probably is an endometriosis as well ).

Feel free to pm me if I can help answer any questions.

[Bubbas Grill]

dreamer75 said:

I had a hysterectomy a few weeks ago, happy to answer questions but perhaps via DM.

Also the hystersisters website is pretty good for support, advice, resources etc.

Edited by dreamer75 on Sunday 31st March 10:09

Many many thanks for your response and we hope you are recovering well after your procedure.

Mrs BG has signed up to Hystersisters and we are currently reading through the vast amount of information available. It's clear we have a lot of research to do before a final decision and/or acceptance will happen. Our immediate concern is the mixed messages we've received from the NHS Specialists so we need to ask more concise questions of them to get a clearer picture it would seem!

Thanks again and Be Well.

[Bubbas Grill]

Aston Traveller said:

You say bloods were done. For an ovarian cyst then a CA125, CEA, CA19-9 should have been looked at. No test however is 100% indicative for what it is looking for. I expect that a CA125 was done which is looking for signs of ovarian cancer. But- not everyone has a raised level. Especially if it is the mucinous type. CEA is a general test looking for possible antigens that cancers produce.

Also cells in cysts can change over time from benign. A CT scan or MRI scan may not be enough to give a full picture. A PET scan can highlight cell dividing activity which cab be useful.

All a bit scary I know. A forum called healthunlocked might be useful as is Ovacome. The ladies there have all sorts of experiences that might be useful (probably is an endometriosis as well ).

Feel free to pm me if I can help answer any questions.

...and another big heartfelt Thanks to you for your response and recommendations. I think we will invest in a PET scan as a matter of urgency now. It's the only one she has not had so far.

I'll be back in touch with both of you kind people in due course. Lots to get our heads around!

Thanks again.