Had operation today, no Endo found, what ... - Endometriosis UK

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Had operation today, no Endo found, what now?

durdledoor profile image
18 Replies

I've had a laparoscopy this morning, no Endo found, what the he'll do I do now? My main symptoms in back pain and they are discharging me back to GP, GP is ringing me tomorrow afternoon what should I say? I'm meant t be going back to work in two weeks but I've been unfit to work all this time then what the he'll am I going to do, I can't wait around for ages again! Should I request an MRI scan?

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durdledoor profile image
durdledoor
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18 Replies
emmary profile image
emmary

I'm sorry to hear that. Not sure whether I should be glad that no endo was found or sorry that your still in pain without any clear idea of what it is. I was thinking of you and wondering how it was going. I switched on the laptop straight away to check

I really, really hope that they find out what causes you pain.

durdledoor profile image
durdledoor in reply to emmary

Thanks Emm I'll let you know what doctor says

Lil_Me profile image
Lil_Me

I'm so sorry hun! Did the surgeons give you any suggestions of what avenues to explore next?

dollypop1994 profile image
dollypop1994

Aww I'm sorry they didn't find any answers hun :( there are other investigations they can do such as a colonoscopy because it could be bowel related or something else apart from endo x

shazlovesevo profile image
shazlovesevo

Hey Hunni, was thinking about you today, as said above I dunno whether to be glad that you don't have endo or gutted that you've still got no answers :/ at the end of the day like I've said to you before, you know your body and there is obviously something wrong so they can't just leave you in pain,

you should discuss your symptoms again with your doctor and see what the recommend next?

Or scan the Internet see what other problems people have had instead of endo and suggest some of themost to the doctor and see what they think?

hope your okay babe,

message me if you need anything,

get well soon xxx

Shehulk profile image
Shehulk

Hi, have you heard of adenomyosis? Symptons are similar to endo but it won't show on a laparoscopy as it is inside the uterus wall. I have both and adeno was diagnosed from a MRI x

durdledoor profile image
durdledoor

Thak you for all your replies, I have had every investigation going, the only things I haven't had is an xray because the hospital refused and an MRI, would aden usually show on a ultra scan as well because I have had an ultra scan xx

Mabes profile image
Mabes in reply to durdledoor

Adeno - MRI.

Is the pain constant rather than around your period and/or ovulation? If constant and in the back, I'd want to see a back specialist to rule out disorders of the spine.

durdledoor profile image
durdledoor in reply to Mabes

It is constant but pain increases when I'm on my period, I've been referred to back specialist so I hope this will mean he will do an MRI x

Surrey93 profile image
Surrey93 in reply to durdledoor

Have you had a hysteroscopy to investigate adeno?

victoria044 profile image
victoria044

Hi durdledoor,do sorry your no nearer a diagnosis. I've just had.my second mri scan which showed I have a very severe infection of the spine which is causing excruciating back pain I'm now being referred to a trauma orthopaedic consultant.my advice is for you to request an mri scan it's the only way you will find out what's causing your back pain. I now have to have iv antibiotics and spinal surgery not to mention the endo surgery as well. Rest up and speak to your gp about mri scan also ask for bloods to be taken can't remember what blood test it is but I have discitis and osteomyelitis worth checking out. Hugs xx

durdledoor profile image
durdledoor in reply to victoria044

Thanks Victoria! So sorry your going through an awful time, hope you can stay strong. How long did you wait for your MRI scan? I just can't wait around any longer, I can't have more time off work but how am I meant to go back when nothings resolved I'm so angry and so worried that the gp isint going to help me x

victoria044 profile image
victoria044 in reply to durdledoor

First scan was 6 weeks wait second scan only 10 days. I just had a call from the hospital saying I need to come in today as this is serious I'm so scared only had the mri yesterday. Pls go see your gp and tell them about me and insist on a mri scan or make an appointment with another gp. Hugs to you xx

durdledoor profile image
durdledoor in reply to victoria044

Oh goodness!! Good luck, really hope it's not too bad, try to stay positive and let me know what happens, will be thinking of you x

victoria044 profile image
victoria044 in reply to durdledoor

Thank you and hugs to you xx

Brownlow profile image
Brownlow

Was the lap done by an accredited endo specialist or a general gynae? Endo can sometimes be difficult to spot. Someone who specialises in endo has a better chance of seeing endo. Even if endo is not seen, sometimes a trained eye will spot tissue that is a bit irregular and take a sample. Were any tissue samples taken? Ask that question. Also ask how far up in the abdominal cavity did they look. Sometimes they don't look up far enough and I think you mentioned in another post that your pain is further up. Endo specialists are fallible too remember.

You sometimes hear of cases where women are told they have 'mild' endo. This is no indication of symptoms. Some women might have minuscule amounts of endo but have severe symptoms. Likewise, the opposite is also possible i.e. invasive endo but no or few symptoms.

I think an MRI is a good idea as there is a possibility it might reveal adenomyosis which can't be visually observed during a lap because it is endo embedded within the uterine wall.

If you were seen by an endo specialist try to get a second opinion. If not, perhaps demand referral to one. Failing that, you could try to choose an endo specialist yourself and pay privately. Do bear in mind that it might not be endo.

The trouble is you need a diagnosis in order to move forward. Discharging you is an abdication of responsibility to diagnose.

Perhaps have a chat with someone on the helpline at Endometriosis UK.

I hope you get to the bottom of this.

durdledoor profile image
durdledoor

Thanks for all your help and support, I was seen in a e centre but the consultant that did my surgery has a good reputation and is meant to be better than the Endo specialist in my area, I had a lot of faith in her to be honest.

I have been referred to a back consultant but I just can't deal with all the waiting around, I don't know what I'm going to do about work, I feel so depressed and can't stop crying x

TeaQueen profile image
TeaQueen

There is just so much about abdominal pain that the doctors don't understand yet. Some people have horrible pain and they can't figure out why, and some people have endo and have no symptoms at all, and only find out when they do to get tubes tied. Its a strange thing.

Sending you hugs and I hope you feel better soon.

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