Post Lap and no endo found : Hello everyone... - Endometriosis UK

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Post Lap and no endo found

Hello everyone,

I am very emotional at the moment because I had my first lap on Tuesday (2nd October). My surgery went well and I am recovering steadily. However, my surgeon said that no endo was found. He showed me the photos from the laparoscopy and they looked normal (but what do I know? I’m not a doctor).

I have a follow up appointment in 2/3 months to discuss the next step. He said that he was thinking of referring me to a pain specialist.

I have a few questions for the endometriosis community and would greatly appreciate some help and advice.

I’ve heard of stories about no endometriosis being found during the first laparoscopy but then endometriosis is found during a second laparoscopy. Is this true?

Has anyone else had a laparoscopy that has come back clear?

If yes, what did you do next?

I also wondered is it normal to only have 2 incision holes?

Any advice would be be much appreciated.

Thanks

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Hi Ellie

I just know exactly how you're feeling now. I had my first laparoscopy 3 weeks ago, was told that there was "no gyneachological cause for pain" and showed me photos of adhesions to my bowel and appendix!

The Mirena coil was inserted (and I have bled in dribs and drabs since).

She discharged me back to my GP and lo and behold, my pain has returned and is now constant, instead of cyclical and I have no idea where I'm up to with my cycle.

It's just awful being told that. It's not that you WANT endo.. you just want answers.

If you're anything like myself, the cause of this pain has constantly been misdiagnosed. Initially thought to be kidney stones, until I linked it up with my cycle and it's been going on for a year (including several A&E visits and 3 months off work). This has gone on for a year now.

You feel like such a fraud to your family, friends and colleagues. But you know that the pain is REAL!!

I'm going to visit the GP on Tuesday and will demand an MRI, as my pain is affecting my right lower abdomen, lower back and hip.

And yes. I only had two incision points (which are healing really well, so I can't complain about that).

At least you have a follow up appointment. Keep a diary of when your pain flares up in the next few months and demand further investigations. There's no point in seeing a pain specialist, when the cause of the pain cannot be found?

Please keep in touch and let me know how you hey on.

Keep your spirits up.. I understand that it's hard though. Xx

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Thank you so much for your reply!!

It’s nice to know that I’m not the only one.

I am definitely going to explain my feelings to my gynaecologist when I have my follow up appointment and hopefully we can take a step to figuring out what is causing the pain.

I totally agree that you feel like a fraud. It’s frustrating that people don’t understand my pain.

I already have a dairy so I’ll be sure that I still keep it updated with my pain.

I hope your GP appointment goes well and you get an MRI.

Best of luck xx

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Hey there Ellie

Just wondering how you're getting on?

I'm still having intermittent pain and bleeding. Going back to my GP in 2 weeks to demand further investigations.

I've been so hormonally emotional and there's no longer a pattern for my pain and bleeding!

Currently at my wits end.

Hope you're doing ok xxx

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Hey Manda,

I’m doing better thanks.

Still waiting for my follow up appointment with my surgeon.

My GP is useless! So I’m waiting to hear back from the hospital. I will let you know as soon as I’ve had my appointment.

My hormones at first really messed with me, I was very down for the first month but my hormones have seemed to have settled now.

I still get slight plain every now and then but nothing like before so I think the coil is working well for me. I also haven’t had a period since October which is amazing!

I really hope that your hormones settle too! Hopefully the coil will work for you too. If it doesn’t I recommend seeing a sexual health nurse (SHN). The SHN at my uni was amazing. She went through loads of different types of contraception and what types of contraception work best with people with endo or severe period pain.

Keep your chin up! I know it’s hard but you’ll find something that helps!

Keep me updated.

Ellie x

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Hi,

I'm so sorry to hear about your disappointment. I know that feeling all too well. I had a clear lap 2 years ago too. For me, I was just told there was no medical cause for my symptoms so I was left to deal with it on my own. I've been completely disabled by my symptoms. Mine a long story which is on my profile if you're interested but in short, I had an mri for back pain in May and guess what was found? Severe endo. I'm still fighting to get things sorted.

From my experience, I would suggest you look into the experience of your surgeon. Are they bsge registered? Do they have a specialist interest in endo? You can check on the bsge website if your surgeon is registered or phone their secretary and ask. Your entitled to this information. If the answers to these are both no, then I would not put much confidence in your lap results.

Have you had an mri? If not, then that could be something you could request. They might not be so keen as a clear lap is taken as gospel (they're still trying to say my endo is new and has developed since surgery which is fairly unlikely). But it could be worth trying. Not all endo can be seen in a mri but it can be visible.

If your surgeon has no specialist interest in endo then you could also have a case for a second opinion from an endo specialist. You could request this thrive pals (if your in England).

Have you had any other tests? Ultrasound or transvaginal ultrasound?

Had anything been found in any tests?

If you're not entirely sure of everything they've done, you can also request your medical notes. I did this recently and it's been shocking what I've not been told.

Also with the incision, I only had 1 incision in my belly button. I was really surprised by it but not sure if it meant anything. I did wonder if it meant he didn't have a good enough 'rummage'!

I know this feels rubbish just now and it's really difficult to know what's next but there are plenty of options for you. Let yourself recover from the surgery first and once you're physically a bit stronger, then you can get fighting. There's loads of support available on here. Feel free to message me any time.

Take care. X

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Hi,

Thank you so much for you response. You’ve lifted me to my feet again.

All the advice you have given me is excellent! It’s good to know that I have many options to take rather than just seeing a pain specialist.

I have had an ultrasound and a transvaginal ultrasound but apparently they were clear.

The only other test I’ve had is the laparoscopy.

Again,,thanks so much! X

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Hi Ellie,

I'm so sorry you haven't got answers! I pushed for a laparoscopy for a long time because I wanted a diagnosis so it must be so overwhelming to still not know for sure. I don't really have any knowledge to your first couple of questions - but to have two incision holes is a bit strange? I've always heard of at least three for conventional laparoscopies for endometriosis from my research and looking into peoples experiences. (One through the belly button and then two either side near to where your ovaries are) - and I had four - the extra being under my belly button.

Where are your two incisions? If you had the dualportgyn technique or LAAM, they usually only create two incisions, one in the belly button and then one below. But, if you had a conventional technique, you should really have 3-4. The dualportgyn technique is technically better though as it has a shorter recovery time and is less painful, so if that is what you had then that is probably better!

I really hope you get some answers from the docs soon xxx

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Hi,

Thanks for your reply!

The first incision hole is my belly button. The second is on my right.

I’m going to keep pushing for answers.

Thanks xx

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I had a lap 9 years ago which found nothing but lots of cysts on my ovaries and one in July this year which came back clear. However I only had one incision and she said in the post op that she did see areas of bleeding but it's normal and it's probably my bowels.

So my advice is to go back to your gp and ask to be referred to a different gynae for a 2nd opinion. You know when something isn't right and it's really common for endo to be missed.

I went back to my gp and she referred me immediately to a specialist I had found because she was so angry for me. Mainly because a blood filled cyst had been found in my uterus and it was completely ignored.

My new consultant made me feel listened to, wrote 2 pages of notes and said he is pretty sure I have deep endo and adenomyosis. I did my research and he is a specialist in endometriosis and benign conditions of the endometrium.

Good luck and don't give up x x x

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Thanks so much for your response.

It’s good to hear you found someone who listened to you and is now helping you properly.

Thank you for your advice and encouragement!! It’s good to know I haven’t reached dead end yet. Xx

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You haven't! That's exactly what I felt like. I have had pelvic pain for 16 years and only this year I saw a gp who put all my years of investigations and medications together and sent me for a scan. That's when the cyst was found and I was shocked something actually showed up.

She suggested endo before I'd even gone for my scan and that's the first time it had been mentioned to me. The consultant I went to was useless. She didn't listen and I'm pretty sure she rushed my surgery because I was last for the day. She didn't even see me afterwards. My post op was 1 min long and she forgot completely about the cyst and said it must be my bowels.

A few years ago I would have been like oh ok. But I have had enough so my amazing GP listened to me and read through everything I had written down and was like yep you need to see this guy.

I saw him in Thursday and I said I feel like this is my last hope and he was so caring and said no we will find out what is going on!

It's so annoying that it takes finding the right person but I'm 31 now and finally feel like I'm getting somewhere.

Don't give up and even if it isn't endo you deserve to find out what is going on with your body!

X

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Ohh no that’s so frustrating! It’s so good to hear that you’re on the right track and have found a doctor who listens properly! X

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Hey, was your surgeon an endo specialist?

I had endo found during my lap but only had 2 incisions. One in my bellybutton and one above my bikini line.

You are entitled to a second opinion so maybe speak to your gp xx

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