No endo found: Hi everyone, I’m 2 days post... - Endometriosis UK

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No endo found

MermaidMeg profile image
9 Replies

Hi everyone, I’m 2 days post laparoscopy and am recovering well. Unfortunately the surgeon said they did not find anything abnormal, no endo, no adhesions etc. Feeling pretty frustrated and lost as to what will happen next…

Has anyone else had a similar experience of their laparoscopy coming up clear? I’m afraid now that no one will believe my pain :/

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MermaidMeg
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9 Replies
D1245 profile image
D1245

Hey,My first laparoscopy was the same and I left it feeling very frustrated too. Sadly my second one found severe endometriosis. Are you due to have a follow up soon? Hope you get some answers soon! 😊

MermaidMeg profile image
MermaidMeg in reply to D1245

Really? How did you get the second one? Speaking to my gp at the end of the week so I’ll see what they say.. my surgeon wasn’t an endo specialist so I guess I can ask for a referral to one?

D1245 profile image
D1245 in reply to MermaidMeg

I carried on with symptoms and had to push my gp for another referral. I didn’t have an endo specialist either so I think now that’s why it wasn’t seen. Although it’s really annoying just keep at your gp and push for the care you deserve! :)

CJoseph1 profile image
CJoseph1

I had the same, my first laparoscopy found abdominal adhesions but no sign of endo. I had a second this May and they said my pelvis looked fine except for mild pelvic congestion and said I had IBS. Both surgeries were done by general gynaecologists so I am now waiting to be seen my a endometriosis specialist.

Keep pushing for a second opinion if you feel your symptoms align with endo! I would suggest asking to be referred to a endo specialist if you have not been seen by one!

I know how devastating and confusing this can be, please don’t give up xx

Angellouise profile image
Angellouise

I’m sorry you didn’t get an answer. My daughter is going through the exact same thing. I wish you luck. She has tried Lupron and depo with a little pain relief but not much.

VinoTinto profile image
VinoTinto

Hi lovelyI’m so sorry to hear you didn’t get any answers. If your gynaecologist is not an endometriosis specialist then you need to ask your gp to be referred to one. I had my laparoscopy and hysteroscopy on Wed and they diagnosed adenomyosis with polyps and mild endo but my surgeon knows his stuff. He already told me he suspected adenomyosis from the TV scan.

Your pain is real, so gather yourself up and push for some answers because you totally deserve to know what’s causing it.

Sending you all the love and keep going. Xx

MermaidMeg profile image
MermaidMeg in reply to VinoTinto

Thank you, I have a follow up with my gp at the end of this week so I’ll see what they say. And I think I should ask for a referral to an endo specialist..

This must be really confusing OP. I hope you get some answers, though equally hopefully it isn’t endo and is something more treat able. To leave you not knowing is unfair

Can I ask how they explain adhesions away if no endo? Serious infection?

JayBee2021 profile image
JayBee2021

Sounds very familiar. I ended up having a total hysterectomy due to Endo nearly 30 years ago. Was in and out of hospital so many times, feeling totally unbelieved. They finally found a cyst the size of a jaffa and didn't mention Endo at all at that time. 6 weeks after removal in back in hospital in agony again, but they just said it was too soon to go back in as I had had open surgery. It took numerous hospital stays and 3 further surgeries over the following 2 years to get a diagnosis and the total hysterectomy. Endo in the womb cannot be seen as its in the inner layers, it can only be found once it is taken out and dissected. Mine was found riddled with the stuff so don't let them fob you off by saying they can't see any. Because mine was taken bit by bit I now have problems with adhesions which can be just as painful as the Endo was. Be persistent, it's your body and you know it best. Don't let your life be ruined. If you're not satisfied then ask for a second opinion. Really hope you get it sorted out quickly.

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