I am new here but suffered from pelvic pain and endo symptoms for over 7 years. Finally got taken seriously last summer and was told that based on my symptoms I likely had endometriosis. Last week I finally got my diagnostic laparoscopy and much to my surprise, it came back basically normal. The only comment was that there was a tiny dot of what might be endometriosis on the peritoneal fold, but this was left and I was told this would not explain my pain/ symptoms and that I do not have endometriosis. So now I am stumped!
I don't know what that dot was/ why it was ignored if it was potential endo and now I have no idea what is causing my symptoms. I had the coil fitted so at this point am just hoping that resolves my symptoms.
Has anybody else had something similar?
Any advice would be much appreciated!
Thanks in advance
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H_S3
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It can be that a small amount of endo can give a lot of pain but in many instances endo is missed because the surgeon didn't have a special interest in endo. A thorough diagnostic lap should take a good 60 minutes to search all the areas where it might be but a lot of general gynaecologists go in, have a quick look at the uterus and ovaries and declare them clear of endo. Do you have a discharge note saying where they looked and does it say which peritoneal fold they are referring to - it could be the pouch of Douglas (between the uterus and bowel) or the uterovesical fold (between the bladder and uterus).
Do you know if the surgeon did have any specialism in diagnosing endo and did you have a scan prior to the lap?
As you have picked up on yourself, to say a dot looked like endo and then to leave it is of no use to you at all. The whole point of a diagnostic lap is to diagnose it so they should have taken this area of peritoneum and sent it to the lab for histology. They might just have treated you as someone with suspected endo and treated you medically without a diagnosis which is an option when a scan is negative, but that would have to have been your choice as the option to have a diagnostic lap is yours to take.
What are your symptoms at period time and at other times?
Thanks for your reply! Considering the lap was meant to give me answers, I feel more confused than ever.
I had heard that even small amounts can cause pain, so was shocked to be told so definitively that it was unrelated. As far as I am aware, the surgeon did not have a special interest in endo. I was told by a member of the team before surgery that it was probably GI issues (this was based on 30 seconds of knowing me) so wasn't exactly reassured that they would do all they could to check for endometriosis.
According to my discharge notes, the uterus, ovaries and tubes were all mobile and normal; POD and RUQ were normal; no adhesions were seen and then it just says 'Endometriosis- a very tiny dot seen on the peritoneal fold near bladder- does not explain her pelvic pain'. Doesn't specify but I am assuming that's the ureterovesical fold.
I had no scan prior to my lap and as far as I am aware, the surgeon had no specialism in diagnosing endo.
I was being treated as if I had endo prior to the lap, and had the Mirena coil fitted during the surgery to try and help symptoms. If I really don't have endo then that's fine, and should the coil not resolve my symptoms I can explore other potential explanations. But given this 'very tiny dot' and my symptoms I find it hard to believe it isn't gynaecological.
Symptom-wise, I have chronic pelvic pain both around my ovaries and in my back. I was on the mini-pill for a year before my lap which helped, but when I was getting proper periods before this the pain would be much worse before and during my period. I would have horrible periods where I was in agony and had to spend the first day in bed. Even on the pill, my pain got worse with any significant breakthrough bleeding. I also get pain throughout the month that comes and go, but typically I can feel it at least once a day. I would get flare-ups too, where the pain is debilitating. I would say pain is the main symptom but I also had consistent bloating that got worse with a flare-up, fatigue that accompanies the pain and occasionally GI issues of constipation/ nausea that seem to be unrelated to diet.
I know someone who went for a first lap and it was all clear two year later was diagnosed with stage 2. I’m not too sure but I hope that makes you feel a bit better.Hope you feel better soon lots of love
Thank you so much for recommending this! I have spent the last hour reading through her site and resources and they are incredibly helpful and so reassuring. Thanks again!
I agree with the previous replies, if you've had a surgeon with no expertise in endometriosis then the liklihood is that he's missed it! Endo is like 1mm thick, so seeing it is like looking for small patches of cling film! Us ladies with endometriosis have been left like this for so long because it's so elusive, and let's be honest... It's easy for them to try say we're hysterical!
My advice, please find a BSGE registered endo specialist. Your GP can help if you're in England you can request a second opinion based on the NICE Guideline for endo, if you need this then print it from the endo UK website, they have the best information on NICE. Please push them, do not accept that as the answer and walk away. A tiny patch absolutely could explain your pain, the pain you feel and the amount of endo has absolutely nothing to do with it. Any proper endo gyne would know that!
Thank you so much for the advice, it's such a frustrating situation to be in but if there's one thing this endometriosis journey teaches you it's how to advocate for yourself!
I think I will try and get copies of my surgical notes/ images and take them to an endo specialist. Hopefully, my GP will be able to refer me. I am still hoping the coil will help resolve a lot of my pain since I know that can be helpful for some people with endo, but ultimately I want answers.
Definitely a good idea to take your notes also, are you tracking your periods by any chance? I use an app called Glow because I have a Samsung phone and watch, it links up with all my health apps and I can fully track all my symptoms I even get warnings when my symptoms may start to escalate! I'm not paid by them haha I just love the app, I even upgraded to premium I definitely recommend it to anyone with endo, it's massively helped me understand my symptoms and map when they will be worse. Advocating for yourself is only possible if you have all the information after all!
If you don't have much luck with the GP then I did a search for BSGE registered endometriosis specialists who were working private and also had an NHS list. There's a BSGE website that you can put your postcode into and then it bring up a list of endo specialists near you. I chose one who had the NHS list so I could go on his free patients after my private consultation. I paid about £180 to see him for an hour, he was amazing and actually listened to me after 10 years of being ignored. (can't say the doctor or hospital sadly) I absolutely did the right thing seeing him as a private patient first, I got to decide if he was worth waiting for on the NHS he absolutely was. It doesn't help you get treatment faster, but you do get to have a feel for the doctor before you decide to go with them! If you're in a position to do that anyway! Either way, definitely search that list and see what NHS gynes who are endo specialists are near to you
Unfortunately you wouldn't get a referral to a BSGE centre at the moment on the NHS as there would need to be some evidence of severe endo and even if the lap might have missed some peritoneal disease the fact that the uterus and ovaries are mobile and the POD clear this would rule out severe endo unless an advanced scan was to show it. If symptoms were to progress over time with no improvement then potentially a referral might be appropriate on the basis that treatment in secondary care has failed but that would be later down the line.
A private consultation with an endo specialist is an option but again at the moment I'm not sure what they would do. If you do have funds for some private intervention an expert scan might be preferable to check for deep disease and potentially adenomyosis before having more surgery if that is what you would be seeking.
I'm just explaining how I personally got a decent gynecologist who actually listened to me, I paid because it meant I could check him out after being fobbed off by the last one. I found him on the BSGE list, paid for a private appointment so I could make sure he actually wanted to help me and then he wrote to my GP and requested for me to be referred to his NHS list. I don't have confirmed endometriosis, there are 2 main gynecologists there and one is a proper specialist and the other has a general interest. I'm seeing the specialist. He was actually in the newspaper and has written research papers on stage 4 endo. So he definitely is a proper specialist and has seen despite me not having endo confirmed. My last gyne left me crying and he was disgusted with how I had been treated, it didn't matter to him what stage I could be, it only mattered that I needed help. Everyone is entitled to a second opinion, and there's no point going to another gyne who has no idea how to deal with endo or how to really look for it. I'm not telling anyone what to do, I'm simply saying what I did. But in my experience if you're requiring a second opinion you can absolutely go to your GP and request to go to any NHS Trust that you choose, that's your right as a patient.
Hello. Disappointing when theres no cincrete duagnosis as you woukdbt be in discomfort if all was well. Ultrasound, MRI and x-ray just dont cut it. I'm in a similar position but am now wondering whether ive been barking up the wrong tree and that it's a slipped/herniated disc in the back, which can give all the same awful symptoms.
Why not check it out, just to rule it out?
Good Luck. Its awful living in constant pain . . .
I think the main difference would be the cyclical symptoms, mine typically peak and drop depending on the time of month. If you have a slipped disk or trapped nerve then the liklihood would be that the pain would be there consistently. It would also be visible on a scan definitely pop into your local A&E if you are thinking it could be that, they can easy rule it out with an xray peace of mind then! Xxx
first of all I hope that you are recovering well from your surgery and that you have found some of the information provided by members of our forum helpful.
It may well be worth trying to get a second opinion as there was mention of a small amount of endometriosis. The BSGE website can be useful for identifying hospitals where there are gynaecologists with a special interest in endometriosis. Although you wouldn't be eligible for a referral to the endometriosis centre as you don't appear to have deep endometriosis, however as one of the other members has mentioned you may be able to get a referral to the gynaecologist.
Hopefully the mirena coli will help manage your symptoms, as you may have seen from some of the comments on this post different treatments can be helpful for some women and not help others at all, or have side effects that they find unacceptable. Before rejecting or accepting any treatment it is a good idea to check with your specialist about the possible side effects and what other options are available to you. You can find out more about treatment options on our website endometriosis-uk.org/endome....
If you feel some one to one support would be helpful, then please consider phoning our Helpline or contacting our webchat, you can find the opening times on our website endometriosis-uk.org/get-su....
Getting in the door is half the battle isn't it! I think NICE need to review their rules around who is entitled to see a endometriosis specialist, it should be extended to anyone who has been unhappy with their previous gynecology care. Especially given that a gyne with little expertise could very easily miss endo that's hiding elsewhere. For example, I've seen so many posts on here from women who were told that no endo was found in one lap with a basic gyne, and then boom the second surgery (with a specialist) found stage 3/4! I would imagine that endo was there in the first lap and just missed. From my experience I was so so so unhappy with my first gynecology appointment, they denied that my symptoms were anything to do with endo (apparently thigh and back pain isnt endo related, neither is blood in the urine!) and told me that surgery to even check was pointless. If I hadn't pushed my GP to see the hospital of my choice (as a second opinion) then I wouldnt be on a lap waiting list right now, I would probably be just left with no answers for another 10 years! End of the day my argument for every single person being able to see an actual specialist if they want to, is that endometriosis pain and the stage you have are not connected. So it is obvious that it's a very complex and misunderstood condition, so seeing a specialist would give you the best outcome and reduce the chance of the disease progressing (if caught when you're at a low stage). If we weren't all ignored and treated like hysterical women by people who have no expertise (or sometimes no understanding at all like my first gyne), then maybe there wouldn't be so many of us with permanent and life changing disabilities.
Also, thank you for everything you guys do. Your website has been INVALUABLE to me this last few years. I finally had the confidence to say to my GP, no it is not "normal" to have this much period pain! So honestly thank you so much for all the advice and support you give, you're all amazing.
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