laproscopy found nothing after MRI showed endo

[Ringo2312]

I’ve just had laparoscopic surgery. I was told after my MRI that they could see some endo behind my cervix which is where I have a lot of pain. I know I have a small fibroid (only 3mm). They also told me I had a cyst on my right ovary.

I had that confirmed via letter but after my surgery, they said they found no endo at all. My fibroid is embedded and so they’ve told me, my only option is a hysterectomy or Endometrial ablation.

Has anyone ever had an experience like this? Where maybe they missed it or if a single, small fibroid can cause such awful symptoms. I get migraines, fainting, heart palpitations, vomiting, bleeding through pads every hour then breakthrough bleeding all month etc.

I feel very lost atm as this has been such a shock for me and would appreciate any thoughts or comments. Thank you.

[Lindle]

Was the lap done by a surgeon with some endo specialism?

[Ringo2312 in reply to Lindle]

Yes, I believe so. It lists online that endometriosis is something he specialises in.

[Lindle in reply to Ringo2312]

Sometimes there will be a list of conditions with endo included, but real specialism should single it out so I'd check.

A lap isn't the gold standard any more as it can only see what can be seen, quite literally. The scope goes into the peritoneal space but endo can be deep beneath the peritoneal space. The most common location for deep endo is deep behind the uterus and this can be beneath the peritoneum. If deep endo is seen on MRI then this is a diagnosis and you should have been referred to a specialist endo centre - was the lap done in normal hospital (secondary care) or were you referred to a specialist centre?

Do you have the MRI retort - if so it would be useful to see - you can block out your personal details and post it to see if it sheds more light.

[Ringo2312 in reply to Lindle]

Thank you.

I think I need to contact the department. It was CEMIG at St Peter’s which is a specialist unit for gynaecology and endometriosis which is why I was so confused as to why they saw some on the MRI but found none. I was told by one dr that he thought the fibroid was the reason and another said that the fibroid would only cause heavier bleeding and none of the other symptoms. It’s just frustrating to think you know the cause and it will be resolved to then be told that’s not the case and I’ll need a hysterectomy.

I will dig out the MRI result as it was about 3/4 years ago I had it done and the surgery only last week.

Thank you so much for your reply. I really appreciate it.

[MangoStickyRice]

Crikey. New fear unlocked

I'm so sorry you are going through that - it must be stressful and so confusing.

I also had a lap that found nothing but they never allowed be an MRI prior so I have gone down the Endo Centre route as I wasn't convinced on the outcome - had my MRI last week and follow up next week to see what they found (oh I hope they have found something!! Can't even think what i'll do if it shows normal).

I wonder if your MRI was reviewed by an Endo Specialist (therefore endo diagnosis) but lap performed by someone who 'has an interest in Endo' it could be the case that they aren't experienced enough to locate and identify the Endo as it has many forms, colours etc.

I hope you can get some clarity on what's happening. Sending hugs.

[Ringo2312 in reply to MangoStickyRice]

Oh it’s so hard isn’t it when you don’t get the answers you want. I’m surprised they didn’t give you an MRI. They usually do that before a lap but then again, I’ve spoken with so many ladies who had nothing show up on the MRI but surgeons found endo with the lap. I suppose we’re all different and unfortunately the knowledge just isn’t there when it comes to endometriosis etc. I spent a year in and out of A&E being given antibiotics for pelvic inflammatory disease caused by and sti….these were given by gynaecologists every time. It was only after the 4th time that I begged they do a swab as I knew I didn’t have one. I’ve been with my partner 8 years and knew that wasn’t r case. The results came back clear which was when they finally referred me to see someone about endometriosis. Not one gynaecologist said anything about endometriosis through that year.

I’m so sorry you’re going through all of this too and I really hope you get your answers. I have heard of some people going private for the MRI with specialists and that has helped.

I think I need to go back to the hospital as they completely discharged me and said if I need the hysterectomy I must go back to the GP and be re referred 🤪

Good luck with your journey! X

[Busy23]

Can you ask them to double check your cyst is not an abcess my cyst was mistaken for one. But a consultant radiologist picked this up after lots of unexplained pain.

[Ringo2312 in reply to Busy23]

Really? It’s so hard when we are in the dark and the doctors don’t have all the answers. I definitely need to check back in with the hospital. Thank you for your reply. It’s so nice to hear from others. X

[Busy23 in reply to Ringo2312]

It's definitely worth a quick ask if it's an abcess as this could be the reason for your symptoms. Remember pain in never normal and don't let them tell you any different.

[Comedykid]

I had a MrI and going to be having a lap in the next few months to remove my appendix and endo. My specialist said to me they believe they have found endo on my MRI but nothing will be confirmed until the surgery and if they don’t find anything then I don’t have it.(definitely hoping they do as the pain is bad) MRIs aren’t 100% effective in seeing endo all the time. If you aren’t sure though definitely get a second opinion from a different specialist

[Ringo2312 in reply to Comedykid]

Wishing your luck for your surgery. I hope the find and remove the cause easily and you get some relief!

I will definitely go back and speak with another doctor. Problem is, they’ve discharged me now and I’ve been told to go back to the GP to be re referred even though they told me a hysterectomy was the only other option 🤪

Thank you for your reply.

[Comedykid in reply to Ringo2312]

Did you go NHS or private to start with if it was NHS then maybe if you can look up an endo specialist privately and ask them to give a second opinion. Not necessarily to operate but just as a second opinion to the original one hope you get some answers and thank you

[Ringo2312 in reply to Comedykid]

I went through the NHS. I was going to go private for the MRI but was really lucky and didn’t need to wait long so I think you’re right, going privately for a second opinion would be good.

[Pray4health]

Am sorry to hear what you are going through. 20 years ago my fibroids were as small as yours. Now they are all much bigger one of them is giant. I had similar symptoms. If your fibroid is embeded it could be Adenomyoisis?

[Ringo2312 in reply to Pray4health]

Thank you. I’m taking the contraceptive now and it hasn’t grown for a long time so I’m hoping the pill is keeping it at bay but I’m not sure exactly how it all works. I think I definitely need a second opinion but hearing you had similar symptoms helps know that it could just be the fibroid.

I hope you’re not getting these symptoms anymore x

[Pray4health in reply to Ringo2312]

Good luck. Its great that you seek second opinion and keep monitoring it and iron level. I am in mid 50s and stil have it all going including heavy bleeding.

[Loriiim]

Hi, so sorry this has happened, it's very distressing to go through! I had similar happen to me - endo was seen on ultrasound then nothing in the op, despite the surgeon having a "specialist interest" but not being BSGE. I've been able to fight it with the hospital as they do have a BSGE clinic & am back under their care & waiting for more surgery. Luckily the biopsy taken confirmed endo but they still discharged me back to my GP. If they have a BSGE clinic you can write to PALs & ask them to request that the BSGE surgeon looks at the images taken. Mine did & basically told me the images told him nothing new, cause he'd already seen it all on the ultrasound 🤦‍♀️ You can also request the images for yourself if any were taken by submitting a subject access request through the hospital website, just make sure you ask for colour images. You can also search here to double check if your surgeon was BSGE or not: bsge.org.uk/centre/category... Also know you can request to be treated elsewhere at a centre of your choice if you aren't happy & would like a 2nd opinion.

[Ringo2312 in reply to Loriiim]

That’s crazy! I’m so sorry you’re going through all this too and have had to fight so hard. I really hope you get the surgery soon and they find the endo that’s clearly there!

I didn’t know any of this. I will look into it and call PALs and request my photos. They did say the took photos.

Thank you so much and good luck!

[Loriiim in reply to Ringo2312]

Yeah unfortunately not that unusual, from what I've found out using this forum since! Shocking really. I don't really think they acknowledge the emotional/mental damage they do by doing it. Good luck with it, & hope you get the answers & treatment you need, & sooner rather than later 🤞

[CrochetCrayola]

Hi, I wanted to comment as the same thing has happened to me and I wondered if you have had any more surgeries or scans since to confirm / rule out endo?

I had an MRI April last year that said mild adhesions, ovary could be stuck to bowel and thickened uterosacral ligaments suggestive of endometriosis. Had my diagnostic lap august this year and no endo found. Just a hemosiderin stain which they biopsied but ‘wasn’t convincing for endometriosis’. I’m still waiting for results. I also had two internal examinations but different doctors say they felt nodules on my USL. I’m very confused. Done at BGSE centre too.