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Endometriosis UK
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Can Endometriosis be missed during a laparpscopy?

Hi everyone,

This may be a long story, but I really wish to get some answers :(.

To begin with, I have had many many problems with my menses since it first came. I had it at 11 years old (I'm now 20) and it was very painful and heavy it lasted for about 2 weeks and then disappared for over a year. It came back and it was completely irregular literally would get it twice or even more a month ! The pain was absoultely horrible therefore I got put onto the combined pill (microgynon) back-to-back and also when I had a break in between. Nothing ever seemed to work for me :(.

I began getting staggering pain in my left side of my abdomin. I had to go into rush into hospital ( A&E ) and they assumed it could be appendicitus? Nevertheless, I had all the checks done yet everything was fine inc. a CT scan.

I then got reffered to gynae for further investigation as my symptoms seemed to match some endometriosis symptoms. E.g pain before period even begins, pain during and after, inc bleeding and fatigue abdominal pain like bad and back pain.

At some point I did use Dianette 35 as a method for trying to get my period straight however, it made everything much worse. I tried Cerelle as my last option back-to-back however, the pain was the same and I bled right through it.

Lastly, I had a laparoscopy not long ago to be disapppointed to hear that I did not have endometriosis and instead they found a small hernia which I have never felt any symptoms or pain for !!

The only reason I was so disappointed is because I have been living my life around pains weird spotting between my period and total depression :( . Its really diffcult to believe that my symptoms will never be cured and my only question really is has anyone else ever had this or similar atleast? Can a laparoscopy really miss endo?

I'd be really grateful if someone can reply to me as I am just so full of everything right now :(.

15 Replies
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From what I was told by my consultant (bsge) yes it can. I had a lap 2 years ago by a general gynae where nothing was found so completely understand how you feel right now. It’s not that you want it but when in so much pain and everything adds up to endo you just want answers and it gets you down. I have another lap on Monday this time with the specialist, trust your gut and although it’s hard when feeling so let down and deflated keep fighting and get a second opinion from a bsge specialist xx

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How did you cope with the pain during the 2 years? Did you take contraceptives? And absolutely, it feels so nice to finally have someone understand your pain. I wish you all the very best of luck on your lap and hopefully you can get answers darling xxx

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If I’m honest I’ve really struggled, been offered nothing apart from ibuprofen from gp. And other consultant discharged me straight from my lap. I’m having a coil fitted during this lap which will hopefully help. I’m always just a message away if you want to chat. Thanks lovely xx

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It must have been horrible having no help from the GP :(. Defo give it a shot it.. the coil will take some time tho until you get used to it in your body, but I do hope everything goes to plan and you get a speedy recovery above all ! Wish you the best and sure I will be waiting to see how everything goes darling. Take good care xxx

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Thank lovely, I’ll let you know how it goes xx

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Hiya,

In my experience Endo can be missed.

I originally went to the doctors with pains and they found a cyst on my right ovary on a scan so they did a laparoscopy. During surgery they found Endo but no cyst.

The pains continued after surgery so I’ve been back and forward to doctors and they all insisted it couldn’t be Endo until one consultant agreed to do an MRI scan.

That scan showed that original cyst is now a complex cyst measuring over 4cm so it’s growth, and I have fibroids now too! The consultant believes it’s Endo and it was missed in the first laparoscopy, and now it’s more obvious because it’s grown.

I’m having another scan and if it’s still there/grown more then I’m having a second laparoscopy to remove it.

Just keep asking for more opinions because eventually you’ll find a consultant that’ll listen 🙂

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I'm so sorry to hear that :(. How long has it been between undertaking your first lap and your second one? And was it still painful?

Its so upsetting to have to hear that some people are let down and are told that they defo dont have something and are left compeletly unaware of anything.

Deffo insist on having all the scans needed for you and hopefully you will be treated accordingly and CORRECT this time. Wish you the best darling and do keep us informed of what happens xx

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Hi I’m sorry you are going through so much. My daughter had the same pain starting at 12 by the time she was 15 she had so much pain which Doctors thought was her appendix but it was a ruptured ovarian cyst since then she has had three more ruptured cysts. Her pain is so bad and her periods are so heavy so was out on Dianne birth control with no help from the pain so next was the depo shot which made her bleed for two months. The first shit helped though for two months but the second one made her worse. So now she is getting the lupron shot, she is on the second shot and started bleeding again until four days ago it has stopped but not the pain. So she gets the third shot in two weeks. She also had laparoscopic surgery and was told she had no endometriosis. Her new Gynaecologist says she could have it and it could of been missed if a special test was not done. I know this is long but I thought I would tell you your not alone. Maybe you needs new Gynaecologist to check you again for endometriosis or try the lupron shot. Good luck

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That sounds so painful and upsetting I'm sorry your daughter has been through so much already. They doctors also falsely thought I had appendicitus at first when it wast 😔. I can see it has been fustrating going through all of that.. will your daughter be having another lap by any chance now?

And I guess I will have to go back to gynae.. Ive become almost traumatised due to pain I cant begin to understand what a hard time it may have been for your daughter. I hope they find a solution for her soon ! xx

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I got finally diagnosed after they thought I had appendicitis, they were dressing me for surgery and everything. Sounds like endometriosis to me,I'd say get second opinion perhaps they found the hernia then stopped looking.

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I think I am defo gonna give it a second shot. Ive literally become traumatised due to pain I cant imagine having to go through it again 😔.

Have your symptoms got better now after the diagnosis?

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Well it's difficult to say, I had my laproscopy three weeks ago so still hopeful that they've got it. Thing is I kept ignoring the pain and trying to handle it myself, when it comes to your own body pain isn't normal and you've got to get to the bottom of it one way or another. Keep fighting x

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Defo 100% you're right. I guess I just have to carry on trying.. thank ypu love. And how are you feeling now, is everything better now? xx

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I'm getting there but it's a slower recovery than you would like to think, I think I expected to get better quicker but when you think how long it takes just for a bruise to go down it must be a long time to heal inside. I think alot of people leave it later than they should to get it seen to, it's easy to be told to keep an eye on it or take painkillers but everyone deserves to know what's going on with their body. X

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Hey, I'm not sure myself but I've heard from other women thato the surgeon can miss the endometriosis. If the surgeon doesn't specialise is locating endo then it is possible they could have missed it! I would request another one

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