Can endometriosis be missed during a laparoscopy?

[Billielaurenxo]

Advice please 😭 apologies in advance for the long post but please please PLEASE read!!!

So I was diagnosed with endometriosis in 2015 after emergency surgery for a cyst rupture - this was in Cyprus. She burnt away the endometriosis but told me it's likely to come back eventually.

After my lap, I fell pregnant. Within 3 months of giving birth, all the symptoms came back, but even worse. I went to the drs probably about 4 times a month before I was finally admitted once, I was admitted 4 times in 2 weeks after the initial admission and told eventually it was a cyst rupture and the pain will ease.

Instead of trying to get to the root of my issues, they just prescribed pain meds. Codeine, oramorph, mefanamic acid, zomorph.. they never agreed it was endometriosis because they had no notes or anything to prove what I'd said. The hospital in Cyprus won't give me my notes, I've tried for 3 years.

I finally saw a Dr that listened and referred me to a gynaecologist at the Liverpool women's, she agreed a diagnostic laparoscopy would be the best option. So I went this morning for the procedure, just got home and I'm gutted. My consultant was Monika oktaba if anyone has seen her? How was your experience?

I never got to see my consultant after the op. I was just told by a nurse what my notes said. Her words were ' there's a lot of writing here but it wouldn't make much sense to you so all you really need to know is that she's said there's no evidence of endometriosis and I've got gross constipation' That's literally all that was said!

I asked so many questions but couldn't be given an answer as she didn't know because she's only going off the consultants notes. I said how can I be diagnosed and then not? The pain isn't in my head. It's real and all the symptoms match. She just said no you haven't got it. We will refer you to pain management to get you off the pain killers as that's causing your constipation. And I'll see my consultant in 3 months for a follow up but she will probably discharge me as there's no gynaecology problems.

They're sending me for an MRI to check for any missed endometriosis but I thought the only way to check was for a lap? I'm not feeling very hopeful. The lady next to me has had endometriosis for years and she said the new consultant which is the lady I saw, doesn't seem too knowledgeable when it comes to endometriosis. She was told the answer to her pain is a hysterectomy to stop periods and it'll go away.

She's told me to keep fighting, don't give up but it seems pointless when I'm told there's nothing wrong but I am not imagining this pain or the symptoms!

• Extreme stomach pains

• Constant cysts

• Recurring thrush

• Painful bowel movements with pain

• Leg pain

• Constipation

• Sharp shooting pain in bum

• Pain that travels from bum to perineum

• Bloat

• Extremely heavy long irregular periods

• Unbearably painful sex

• More frequent painful bowel movements during a period

• Almost constant lower back pain

Has anyone had the same thing? What happened? Any idea if there's anywhere to go from here? Feeling like absolute rubbish 😩😭

Thanks x

[AllthatGlitters]

Hi

I had a lap and yes thats the only way to be 100% sure that you have Endometriosis.

They usually send a letter to your GP as well as give you a discharge note, did it say anything? You could visit your GP and ask all the questions you have, I found this helpful as when you have been under anaesthetic you don’t remember what they say anyway.

Did they say why they are sending you for an MRI? I got one and I was diagnosed with Adenomyosis, they thought I had Endometriosis too but I don’t. So all of my symptoms are down to Adenomyosis. My symptoms are thrush on and off for many years, heavy period with flooding through my clothes, bloating, urgent need to pee, more frequent bowel movements, bloods not right, hot flushes, painful sex, sore stomach, yellow tongue, loss of appetite, hair loss.

Keep on at the doctors as you know when something isn’t right yourself, it’s a good thing they are sending you for an MRI. I also got an ultrasound but that showed up nothing so a useless test for me.

I ended up going private as I couldn’t get the NHS to give me surgery when they said they would and I was so desperate to find out if I had Endometriosis or not so I could get effective treatment.

Please PM if you need to chat x

[MediocreMind]

Hi,

Unfortunately endometriosis can be missed if the lap is performed by a general gynae rather than a specialist. However, it's good that they're sending you for an MRI (with contrast hopefully?) as this can show deep infiltrating endo which could fit some of your symptoms. It's disappointing that they didn't do the MRI first as normally they like to have as much information as possible before surgery.

I'd recommend doing some research and writing lots of questions ready to ask in the post op. Including if she looked in the whole pelvic cavity and if she checked the pouch of Douglas and bowel.

It really isn't good enough that your consultant never explained what happened in the surgery. You could try contacting her secretary and explain that you didn't get an explanation of the surgery and see if she'll call you to explain it clearly.

The lady next to you has the right idea, unfortunately you do need to keep fighting to get answers and a hysterectomy is not a cure!

Good luck and I hope you can get some answers soon x

[Goodapple]

Yes. Either ask to see an alternative Consultant (a good one would have met with you to discuss all of your concerns face to face) or go private.

Your health matters.

🙏🏾💕

[IndigoMoon1234]

Yes many women on this forum have reported that general gynaecologists - as opposed to endo specialists - can miss endo during a laparoscopy.

Personally speaking, I had a laparoscopy and the gynaecologist told me afterwards that i did not have endo and that I had no gynae problems whatsoever. 9 months later I saw an endo specialist and he told me I had a 6 x 4 x 4cm endometrioma on my ovary.

Other women on here have also stated that endo can disappear temporarily e.g. in response to treatment.

So the answer to your question is yes it can be missed.

Also as AllThatGlitters suggested you could have Adenomyosis or another condition that could be causing your symptoms.

Last time I was at hospital for tests, the nurse told me she had endo and even though she is a medical professional, it took years for her to be diagnosed and some of the doctors made her feel like she was making it up or that it was all in her head.

Hope you get the help you need. Good luck.

[Thecraftyadder]

I'd just agree with the others. I was told I didn't have it, was just IBS and made to feel like I was wasting their time after a laparoscopy with a general gynecologist. I wasn't even given a post opp appointment to discuss it. Yet years later on seeing a specialist privately he found deep endometriosis. I had significant issues with lower back and leg pain.

Hopefully your MRI will show something. But don't give up fighting for a diagnosis. It took me 18years from first going to my GP to getting diagnosed which is a disgrace. I wouldn't wish that on anyone.

[Louiseboo77]

Hi. I am so sorry what you are going through. You should read a story about a woman in America. Google living with endometriosis. Her story is similar. She would spend weeks out of each month in bed. Her was undiagnosed because it was deep and hiding. Eventually she had a special doctor that helped. I agree not all consultants understand the condition. I have been told I am too high risk to have a hysterectomy I really need I have adenymyosis as well. She also said this condition doesn't give you back pain and I must have a bone problem. Also cyst don't give any pain. So shows how much she knows. She is happy to let me live with this awful condition. So good luck with dealing with these people. If you can afford it get a private assessment or ask for a second opinion. You have a right to. Good luck and take care. X

[rach890]

Yes it can be missed, my first lap was completed by a general gyne he found adhesion but told me this was due to PID not endo, i was in a lot of pain after that and pushed for over a year to see a specialist, after my first appointment with a specialist he assured me that my case sounded like recto vaginal endo and preformed another laproscopy late last year in which i had confirmation of stage 3 endo.

Push to see a specialist, they know what the symptoms are and they know what they are looking for in laparoscopy.

Good luck x

[Amelie8]

Hello,

Sorry to hear you are not getting anywhere. I totally understand.

I to had a lap done by normal gyny, apparently he was the best of the best.

He said (well his notes as I never got to see him) said no obvious signs of endo, but very compact bowels, and adhesions (from past appendix surgery). He didnt want to see me again and was just putting my pain down to my bowels.

I am still getting the pain, and dont know where to turn now

Hope you get to the bottom of it, any advise will be appreciated.

Xxx

[StefaniaJW]

It sounds like whoever performed excision surgery on you was not good enough nor professional enough. I am in utter shock by the treatment you have received. I highly suggest you look into a different endo surgeon (an EXCELLENT ONE with extensive experience, not just a good one with some experience).

[Dakrav]

Hey Billielaurenxo, I am so sorry to hear about this. Have a look at the Nancy Nook endometriosis education on Fb. It’s a very good place with wealth of Knowledge and exicision doctors who are pro at it.

[Doggiedogmom1973]

hello Billielaurenxo,

OK, Guess What? You had your endometriosis burnt off. This is the NUMBER ONE reason why you have been in sooooo much pain after your laparascopy. Ran a thousand miles away from any gynecologist who burns off the endometriosis. Its sad, because its all they're trained to do and they don't even realise that its causing their patients incrediable pain. So once you've digested that news, just take a few deep breaths!! Why am I telling you this? because I've exprienced exactly the same pain of having endo burnt off and it took me 3 years later to realise why I had sooooooooooo much pain after an operation that was meant to reduce pain.

You deserve the best gynecologist, so go find a top gynecologist that specialises in "Endometriosis Surgery" AND that is skilled enough to perform "Deep-excision" surgery. This is the only pain free way to remove the endometriosis, so that you don't experience pain post op. This is a specialised way in which the surgeon "Cuts" the endometriosis right off. Also make sure the surgeon knows how to remove not only the tree (the endometriosis) but the roots as well, this needs to be all cut out. Endo is endo, which is pain. If any is left, yes it causes pain.

Yes its 2019 and you're in a pile of pain, purely because their is a total lack of awareness of endometriosis, and those that are trained to help, often are not trained up to the 'gold standard' of caring for endo patients.

I highly reccommed you read this book written by one of the best endometroisis doctors in the world: "the doctor will see you now" by tamer seckin, md. This book can change your life with endometriosis. Also look at his website: tamerseckin. Extremely worthwhile read.

all the best.xoxoxoxo.

[Sarahdd16]

Hi just wondering what happened I have the same operation with the same doctor and wanted to know if they missed your endo or maybe it was bowel issue? I feel like my problem coukd well be bowels but also ses like endo

[Ethel-Cloud]

Hiya, do you mind me asking what the outcome of this was? I have recently had a lap with Monika to look for endo - and I had vague results - peritoneal pockets were found. I was in theatre for hours even though I was told it would only take about an hour. I didn't get a visit after the op from Monika and on one has answers for me. I have lots of other factors that would suggest I have endo. I am completely lost now. I hope you have gotten somewhere.