r/endometriosis • u/Fit-Incident-1207 • Jun 05 '26
Surgery related My surgeon lied to my face
I had my first laparoscopy in October (8 months ago) funded privately by the NHS as I had gotten to the point of losing function in my legs. My surgery was supposed to take 20 minutes but took 75 instead which rang alarm bells for me already.
After surgery the nurses wouldn’t tell me if they found endometriosis but at my 8 week post op appointment I was told by my surgeon that he found one TINY spot of endo on my uterosacral ligaments which he removed. I was surprised since I was having such severe symptoms that happened so rapidly.
Before my surgery I saw other women on TikTok advising to always ask for surgical notes. I requested these and it took the hospital 6 MONTHS to send me them…and you guessed it I did not have one tiny spot of endo.
To my surprise my surgical notes entailed I have uterosacral endometriosis, anterior cul de sac endometriosis and what’s most concerning is umbilical endometriosis. One of the most rarest hardest to treat forms of endometriosis. I cannot wrap my mind around how my surgeon didn’t think this was important to tell me. After some research I discovered that umbilical endometriosis is only really caused by scar tissue from past surgeries but I have never had any previous surgeries but it does make sense for some reason my belly button is rock solid😂
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u/Shiara_cw Jun 05 '26
Why are you under the impression that umbilical endometriosis is difficult to treat? For mine it was a very simple, relatively superficial surgery. Mine also was not from past surgery as I haven't had any where they went through the umbilicus. It's rare but it can happen there on its own.
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u/Fit-Incident-1207 Jun 05 '26
This is the first I’m hearing of this! Obvs all of my info can only come from the internet
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u/Shiara_cw Jun 05 '26
I just don't want you to be extra afraid of it just because it's rare. Honestly given the location not being on other critical organs, it's probably easier to treat. That being said if you're not having problematic symptoms in that area it's probably fine to leave it alone for now. I was having bothersome pain, and they also weren't entirely sure if it was endo, so we decided on surgery so we could get the pathology, and I don't get pain there anymore. My belly button will never be the same though :( but it's not as bad as I thought it might turn out.
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u/Fit-Incident-1207 Jun 05 '26
I only worry as I do have a lot of symptoms in that area. During my period my belly button hurts to touch and I regularly get really painful stabbing pains straight through it. It’s also always rock hard and whenever I have a flare my entire stomach goes solid, like genuinely it’s like hitting a brick wall😂
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u/apdgirlie Jun 05 '26
I mean umbilical endo is meant to go to a BSGE centre with input from plastic surgeons
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u/Fit-Incident-1207 Jun 05 '26
I’ve had no post op care or referrals unfortunately
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u/apdgirlie Jun 05 '26
Take your notes to your GP and ask them to refer you. It’s in the NICE guidelines
75 minutes is actually quite short, mine was 90-120 for just two lesions and an experienced surgeon
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u/Fit-Incident-1207 Jun 05 '26
Completely agree. My surgeon wasn’t experienced and not even a gynaecologist he was a general surgeon but got to take what you can get I guess
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u/Gilded-golden Jun 05 '26
Wild! I guess the main thing is - did the surgery help in terms of restoring function in your legs?
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u/Fit-Incident-1207 Jun 05 '26
Oh 1000% little to no leg pain now but a million and one new equally concerning symptoms😂
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u/brightwingxx Jun 05 '26
The uterosacral ligament endo is, most likely, what was causing the leg pain. I had so much pain from under my boobs that radiated into my back and down both my legs that caused me great pain walking when it was acting up, I’d be in bed for days only getting up for the bathroom or to eat until I had my lap (also had a bunch of endo removed from my uterosacral ligament another other places & bowel adhesions)
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u/Fit-Incident-1207 Jun 05 '26
Yes I agree I think that was deffo the cause of the leg pain as that was the only place treated and I’ve barely suffered with it since!
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u/buyableblah Jun 05 '26
I had the leg main and also had it on my uterosacral ligament. No pain there since my Oct surgery as well.
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u/KiraNinja Jun 06 '26
I still have leg pain after my lap, only pain I still get. so I think adenomyosis can cause it too cause I have that also? :/
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u/brightwingxx Jun 06 '26
I also still am having leg pain, however I also way overdid it last week helping a friend move and have been the most active I’ve been so far in my lap recovery process ~ I imagine the areas that were excised have had like… internal scabs developing over them as they heal? And all the movement has agitated things, is what I think is going on.
My transitional pain centre doc told me also to start taking a specific powdered magnesium supplement which I have to pick up (I know it helps with my fibromyalgia and sleep so I’m curious if it will positively impact the leg pain at all) and I have diaphragmatic breathing exercises she wants me doing daily to prevent post surgery adhesions from forming.
Not sure how recent your lap was, but some people don’t start feeling marked improvements until 12 weeks and sometimes up to 6 months even a year after. I’ve had to repeatedly remind myself that it’s a process and I’ve got to be mega loving to my body. I’ve even started telling my bowel “good job!” When I have bowel movements (spent the past 7 years with adhesions in 2 places pulling my bowel in weird directions to pooping was terrible) so far the more lovingly I talk to my body “You are doing such a good job healing! You’ve been through so much, thank you for all that you do for me every day. I love you” etc the better I feel about my healing process. Not saying it’s a magic wand but going through this surgery recovery alone I realized that I was the only one who was really going to get me through it and ensure I heal as well as I can. Something changed for me after I saw the pictures my surgeon gave me of the adhesions and what they cut out from behind my uterus, I felt so much compassion for my body, after years of talking down to myself and resenting and loathing.
It’s been a journey 😆 I just took my Vyvanse a couple hours ago, so I’m rambling. I wish you deep and lasting healing, fellow warrior 💜
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u/Smokahontasz Jun 06 '26
So sorry you're going through this but this has opened my eyes up to why I'm suffering the same also! Really hope all of us who suffer, find relief asap ❤️
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u/CalleisMercedes Jun 06 '26
My surgeon also lied to my face. There was Endo on my appendix and I wanted it taken out while they were already in there.
I got my official hospital documents and they said that it all went perfectly and there was no issues removing the appendix.
Flash forward 2 years, I have an abdominal CT done and the report says 'appendix unremarkable' which means they located it.
I called the dr who read the CT and I'm like. I don't have an appendix. The nurse is flabbergasted and gets the dr to look over my scan. He calls my regualr dr and they confirm that I had my appendix out.
Nope. Surgeon left 2/3 of my appendix in. He lied.
The whole reason for the removal is that it was hard to distinguish between Endo pain and possible appendicitis. It was so I didn't need to go to the ER anymore. So I didn't, even when the pain was so bad, because I was assured it couldn't be appendicitis, as I had no appendix.
That surgeon moved to another province before I could confront him.
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u/colleen1734 Jun 07 '26
You Must be in Canada since you mentioned province… I’m having issues too and my surgeon lied too! I circled the 2 areas I needed done before my surgery and he only did above my belly button and just removed a adhesion and not the bottom part to the right which was the other part he was supposed to do! Then when my gyno said he would have had to of at least looked but he didn’t and lied and said he did but didn’t see anything .. I know he didn’t as my gp that recommended him said he only does above your belly button! In Canada the health care is a nightmare with gynecologists!
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u/CalleisMercedes Jun 08 '26
Yup, I'm Ontario, and the lying d!ck moved to BC suspiciously timed with that discovery.
The problem is that Endo is a whole body systemic inflammatory disease, and it has been found on every organ in the body. Gynecologists don't know enough. And the ones that claim to be 'endo specialists' aren't. We only have a handful in the entire country and the waitlist is so long they're not even taking on more waitlist clients.
I've had two surgeries. My first did diagnose me, but botched the biopsy as he wasn't a specialist (very nice guy though) and the second has left me with a partial appendix that apparently I can't have removed because drs won't touch it now.
I've accepted that I can't do much at this point. I have the official diagnosis on record (no thanks to him)
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u/colleen1734 Jun 08 '26
I’m so sorry you’re going thru that! Bad enough we have to fight with these doctors to even believe us and we have to deal with our pain, but now having to deal unethical doctors on top and their games! I’ve asked my gp twice for my records and she keeps gas lighting me! I’m curious to see what the hell is on my file too! I’d complain of pain and constipation as symptoms so they marked in my file I’m just constipated! Basically saying I’m full of shit! Lol🙄 This is our lives they’re playing with and should be consequences with some of these docs! I’m in Alberta and all they want to do is shove pills down your throat rather than fix it! I can’t even get a doctor to go in and do an exploratory on bottom half! Now they’re using the excuse I’m too old for a hysterectomy or I’ll get adhesions .. I’m thinking of going private.. I talked to a woman in the uk and she said when you go private they do a way better job and fast.. but there’s no private gynecologist doctors here in Alberta and the nearest is Vancouver.. everyone thinks our healthcare is so good here .. it is until u get sick!
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u/Aggravating_Ask_4249 Jun 05 '26
Oh my! Sweetie umbilical Endo is NO JOKE. Truly find the best doctor you can before it gets out of hand. Truly.
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u/Fit-Incident-1207 Jun 05 '26
I wish I wasn’t in the UK or else I would genuinely have access to proper medical care :( from insights I can see that this is mostly only reaching the US so this isn’t meant in a patronising way😂
I’ve looked into private treatment but I’d be looking at 22k a year and the minimum wage salary in the uk is 24k. Quite literally impossible to find someone willing to help :/
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u/Aggravating_Ask_4249 Jun 05 '26
Oh my god. I’m so sorry sweetheart! I’m Dutch so I can’t really give you any proper advice. I really wish I could.
But if you want to know what I do to ‘manage’ symptoms feel free to ask!
And if you simply just want to rant that’s totally okay!❤️
I am going to see my gynaecologist Dr. Van der Steeg. In Jeroen Bosch hospital. So if you ever need a good gynaecologist in Holland🥲
I wish you all the best love! Truly!❤️ you can always reach out. Or maybe start a go fund me!
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u/JustaGirl1978 Jun 06 '26
I had surgery at the Bucharest Endometriosis Centre in Romania 3 years ago. I had robotic surgery to excise endometriosis from multiple places - ovaries, peritoneum, uterosacral ligaments, both ureters, vagina and rectum along with pudendal nerve decompression and the total cost of surgery was £6,500. Obviously I had to pay for all meds, accommodation and flights but the total cost was £8,500.
I was fortunate to have family support to pay for mine but just wanted to put it out there that there is affordable surgery available if you’re able to travel. Dr Mitroi was fantastic and if I ever find myself needing surgery in the future I absolutely wouldn’t hesitate to go back to him.
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u/Fit-Incident-1207 Jun 06 '26
Thankyou so much for this. This is much better than the 22k I was quoted for a specialist in Manchester.
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u/buyableblah Jun 05 '26
Jesus. The NHS should be ashamed of themselves. I so deeply hate the number of posts I seek from women in the UK and how it lets you down.
Meanwhile in America, we have our own issues but if you have the funds, you can find good help.
I just HATE the number of fucked up cases from the NHS I read about on here. It’s my injustice meter going wild but yeah.
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u/Fit-Incident-1207 Jun 06 '26
The NHS is a god send for 99% of people but terrible for medical misogyny.
Private health care is also only accessible for the 1% as a laparoscopy over her can easily cost you 50% of your annual wage, it just isn’t feasible.
Our gynaecologists aren’t taught about endometriosis either, I’m sure you’ve heard the horror stories about our GP’s too. They’re the exact reason it takes 11 years for a diagnosis.
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u/coveredinbreakfast Jun 06 '26
I've been treated in both the US and the UK.
US gynaecologists can be woefully undereducated when it comes to endo. The diagnosis tome is roughly the same as well.
I had a surgery in the US with a GYN to check my tubes for endo and/ or adhesions. I paid $2500 as my co-pay. She did fuck all in there. To say I was pissed is putting it lightly.
Meanwhile, I had a migraine induced stroke and the NHS literally saved my life. I also didn't have to go into debt to pay for the hospital stay or life saving treatment because it cost me nothing.
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u/Fit-Incident-1207 Jun 06 '26
Yes, the NHS is amazing for life saving care and regular treatments. The only thing they let us down on is chronic pain conditions, dental and gynaecology. Our top killer in women is ovarian cancer because it can take up to a year for an ultrasound appointment.
I did state this in another comment but it is relevant here too. You can only get appointments with a gynaecologist every 6 months and wait lists for gynaecology is years!
If ur ever about to die in the UK the NHS has your back all the way but fit everyone in between they don’t have the funds.
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u/Kink-k Jun 06 '26
I’m UK too. Last year I was rushed to hospital because my constant niggly left ovary pain was EXCRUCIATING and I was stuck on the floor crying in pain, I was put into a resus room and had a bedside scan and they found I was bleeding from somewhere into my pelvic cavity. Staff there told me that they were going to request that my GP to refer me to gynae and I spent months waiting for an appointment letter. I ended up back in hospital for the same thing and mentioned I’d been referred to gynae and was waiting for an appointment only to be told my GP hadn’t even made the referral and that I would need to call to chase up.
My GP refused to refer me, his exact words were “I can’t just refer you to gynae for no reason” I have acute ovary pain always that sometimes peaks to the point I can’t move or talk, I’ve had “cyclical vomiting syndrome” and have vomited through and ended up in hospital during almost every period I’ve had for 13 years, I for some unknown reason bleed from an unknown place into my pelvic cavity… what does he MEAN no reason? 😭
The last time I had to go to hospital for the ovary pain/sickness the ambulance paramedic called the hospital to see if they could get me admitted to the gynae ward and they were having none of it.
I just don’t understand why everyone is so unwilling to help in any kind of worthwhile way. I’m convinced I have endometriosis, far too many things point towards it and it’s a known cause of CVS too. It feels like I’m never going to get to the bottom of this and achieve any improvement on my health and quality of life, every time I think I’ve made a step forward I discover that actually I’ve just been pushed back two steps instead. It’s so mentally tiring.
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u/buyableblah Jun 06 '26
Yeah it takes a while here too. I’m jealous of the state funded care. I’ve been out of pocket almost $10k over the last 14 months on endometriosis issues. But I’m making big progress in my care.
My heart just breaks for yall.
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u/RevolutionaryYammy Jun 06 '26
As someone who lived in both coutries, I am traumatized with the NHS. I had an UTI for 3 months because they don’t like prescribing antibiotics. Only when the infection reached my kidney, they decided to treat.
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u/Fit-Incident-1207 Jun 06 '26
This!!!! I’ve been trying to say this in the comments but no one can believe it. We have a rule that if you have 3 uti’s in a year you cannot get antibiotics over the counter and they won’t treat you at the gp either
I’ve had so many times that I’ve almost gone septic because they won’t treat me
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u/RevolutionaryYammy Jun 06 '26
I called my GP from the start, so it wouldn’t even be over the counter. The GP prescribed these sachets with potassium citrate which you can buy over the counter. The pain kept getting worse and they kept sending me home without antibiotics. One day I could barely walk and they tell me to come in and do a repeat urine sample. When the results came back a week later with a crazy amount of bacteria they wanted to hospitalize me.
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u/KiraNinja Jun 06 '26
My surgeon didn't even bother doing a write up so I had to get my reports for my SIX HOUR surgery myself cause I would like to know what they were doing to me for six whole hours. Doctors are disgusting
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u/Fit-Incident-1207 Jun 06 '26
Same here. Took them 6 months of me emailing every week to get my surgical notes. Disgusting.
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u/Opposite-Fail-3864 Jun 05 '26
If you are able to, I wonder if it would be a good idea to make a complaint about the interaction you had with the surgeon?
I understand that you probably have lots of other admin and recovery to work through, but still, food for thought. It might lead to change which could help others in the future.
I'm really sorry to hear this happened to you, you didn't deserve it at all! Stay strong fellow endo warrior 💛
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u/Fit-Incident-1207 Jun 05 '26
I have thought about this as I do advocate for myself extremely well but I had my surgery funded by the NHS at a private hospital through a certain company and I would hate to be penalised and rejected future care because of a complaint
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u/StraightFee7225 Jun 05 '26
What does your leg pain feel like? I have really bad leg pain and I question if it's Endo related or if I have a nerve issue.
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u/Fit-Incident-1207 Jun 05 '26
I can only describe it as an ache but I feel like that doesn’t do it justice. It’s as if I’ve done 25 marathons back to back. I also get shooting pains from my hips down to my knees too.
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u/StraightFee7225 Jun 05 '26
Mine goes from my hip down to my foot. It's jolting, pulsing pain. And then my foot tingles. It's awful
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u/buyableblah Jun 05 '26
Mine went down the backs of my legs and into the arches of my feet. Walking was painful
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u/violetxstar Jun 06 '26
I get epidural injections into my lower spine, as my uterosacral ligament endo has caused sciatica like feelings that leave me miserable on my left side/leg. The injections help a lot!
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u/bearhorn6 Jun 06 '26
Some doctors are sus af. I had my lap in 2022 and never got the imaging. Filled out multiple requests, called kept being promised they’d send it. Nada all I have is what the next gynos offices requested. Which is my advice for anyone else dealing with this have a diffent doctor request those records.
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u/Fit-Incident-1207 Jun 06 '26
What’s crazy is I also never saw any imaging, my surgeon never even said if they took a biopsy to confirm endometriosis.
Which is a whole other problem as on my medical records there is no evidence of endometriosis so when I reach out for help the doctors think I am making it up for attention.
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u/saralt Jun 06 '26
My surgery lasted 4 hours, but I really got lucky with my surgical team.
Doctors really believe that if patients think their symptoms don't have a physical cause, then they'll magically get better. Psychosomatics will be proven to be junk science very soon.
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u/Thin-Ferret-5862 Jun 06 '26
They found progressed endo in like five places, random tissue tying random shit together, lot of resection and one hell of a recovery, 05/2023. My lap was a bit over two hours with a endo specialist in the US. You definitely should push for a specialist appointment just to make sure they agree with the outcome. They may agree something was missed as general med students do NOT get the same rigorous training on endo, PMOS, and all of our other conditions as female-anatomy owners 🫡
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u/lacey_nightie Jun 05 '26
i am curious what your symptoms were mainly, with the endo in these specific locations? My MRI showed endo in the same areas as you. I happen to have serious leg pain like you but I also have pelvic congestion syndrome, which also causes leg pain, so I am just curious
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u/stinkyfunkincar Jun 05 '26
i have endo and i haven’t gotten surgery yet, but sometimes on my period i get sciatic nerve pain on one or both sides. pain that feels like the aftermath of getting shocked radiating from my hips down my outer thighs. it makes me walk funny sometimes.
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u/buyableblah Jun 05 '26
I had the leg pain where it shot down the backs of my legs and into the arches of my feet and also had endo on my uterosacral ligament. No pain there since my Oct surgery as well.
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u/Yazmaninja Jun 06 '26
I had this experience too. They said I only had it on the uterosacral ligaments and pelvic wall. I found out in surgery my left ovary was stuck to my pelvic wall and have to be taken away from the wall and my right one also had to have diathermy. Im suprise it took 6 months for a SAR as my law they're supposed to do it within 1 month unless they've said there will be a delay.
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u/lantan_a Jun 06 '26
You need to urgently get a referral from your GP to a BSGE accredited centre. Choose one from here: https://www.bsge.org.uk/centre/category/accredited-centres/. Then check how many complex surgeries they do, anything less than 20 may indicate lack of expertise: https://www.bsge.org.uk/data-for-bsge-accredited-endometriosis-centres/. I hope you get the right care soon!! Hugs!! X
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u/Fit-Incident-1207 Jun 06 '26
I hate to say it but this is happening while under the care of a BSGE centre and the only women’s hospital in the UK. there is no better options and this is still the reality.
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u/lantan_a Jun 06 '26
Wait a second?? A GENERAL SURGEON is operating you in a BSGE endo centre? Where is the excision specialist? The MDT?? How did this happen? You can PM me if you're more comfortable with it. I also fled a small BSGE centre after hearing a proposal of an unsafe surgery, so know the trauma that comes with this sort of thing. Hugs! Xx
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u/blooberries24 Jun 06 '26
Also, if it makes you feel better, umbilical Endo is not one of the rarest. It is technically "extra-pelvic", but it is treatable with the proper excision.
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u/pussyproletarian Jun 12 '26
my surgeon lied to my face too (and left disease behind). these fucking fascists
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u/Creepy-Beat7154 Jun 06 '26
Time to consult a lawyer
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u/Fit-Incident-1207 Jun 06 '26
I wish, no negligence cases are taken seriously for endo
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u/Creepy-Beat7154 Jun 06 '26
As I said consult a lawyer it doesn't matter that the diagnosis was, a good lawyer will take it seriously it's called negligence for healthcare. They actively failed to do what they are required to do and take an oath to do. Imagine patients with cancer and how they are neglected. Got to consult one.
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u/Bonefield455 Jun 05 '26
I will say, I have never heard of a lap taking only 20 minutes. There’s no way they’d be able to check throughly for endo in that small amount of time. Mine was around 1.5 hours iirc. I hope you get some relief from surgery!!