Laparoscopy showed no endo what next?

Please help I have been suffering for what I and the doctors thought was endo for the last 10 months. I had a laparoscopy on Tuesday last week the surgeon informed me that no endometriosis was found and that I didn't need a follow up appointment. I know this is supposed to be good news but I am very upset I am in constant pain with still no explanation and dont know where to go next. The pain seems to have escalated since the lap and I feel I have no where to turn

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21 Replies

  • Go back to your Gp, you do need a follow up appointment with someone, the pain must be coming from somewhere, have you had ultrasound checking kidney and bladder ect.

    Don't just expect what they say, was it a endo specialist that did lap, I've heard on here about ladies going for a second lap and it being found, (minimal)

    Good luck x

  • It was at the RVI I am not sure if they are endo specialists but the surgeon seem pretty sure they was no endo.The pain is keeping me awake at night and I am epileptic so this is triggering my seizures I feel so disheartened. Thank you so much for taking the time to reply and I will book an appointment with my gp xx

  • Hi, I'm afraid I probably cant help as I'm still having my problems looked into myself and haven't got an answer but I didn't want to tea and run. Out of interest what type of pain are you having? I've had irregular periods, period type cramping and horrible back/hip/pelvic pain on and off for about 8 months now. I'm currently constantly bleeding and only norethesterone seems to stop it. I suspect endometriosis but the doctors are still insisting on putting me through tests for absolutely everything else first so its a long slow process. What other symptoms are you having because I've been tested for just about everything under the sun so maybe my experience with that could help suggest a new direction to look in?! X

  • Pelvic and groin pain like a pressure and sometimes a severe stabbing pain much worse around my period however now there the majority of the time sometimes its so severe I am doubled over the pain also travels down my legs. I have been given cerasette to regulate my periods which has controlled the bleeding but not the pain. It is awful waiting for answers I hope you get some soon thank you for replying x

  • Hmmm, sounds like the same sort of pain I'm getting. It almost feels like a burning kind of pain in the joints. I was trying a progesterone only pill but the other side effects I was getting just didn't make it worth sticking with so I've now been advised to come off it and see if my body will stop the bleeding naturally anyway. I'm also going in for blood tests to check various hormones, thyroid etc on Thursday so maybe that will explain something for me. I dont know if it will help you but I find heat helps my pain so I've just ordered a self heating magnetic lower lumbar waist support belt from ebay. Its supposed to warm the area its over and i guess its easier than permanently walking around trying to strap hot water bottles to me! Xx

  • Thanks I will look on ebay I have been buying heat pads for when I am managing to get to work but it works out expensive good luck and keep me updated xx

  • What other tests have you had, ?

  • Just a pelvic ultrasound nothing else xx

  • Hi Elly

    Read the threads under '8 years after diagnosis, still fighting for help'. Put it in the search box. I have put a lot on about endo and how to access specialist care.

  • Thank you I will have a look xx

  • Elly

    Just to add that under 'General Medical Practice' which is a GP charter, GPs must respect your right to a second opinion and under NHS Choices you can see any specialist you want anywhere in the UK. You will learn from the threads I referred you to that there are now several accredited endometriosis Centres of Excellence that you can access. I suggest you have a good browse then go back to your GP with a copy of the list of centres and request a second opinion at one of your choice. I imagine you will have been seen by a general gynaecologist who simply won't be specialised enough to identify all manifestations of endo, some of which is microscopic and will only be suspected by the years of experience and instinct of an expert who sees it all day long. Hope this helps x

  • Thank you I will mention this to my gp hopefully I can get a second opinnion

  • Go to to check if you were seen by an endo specialist or not. Either way, demand referral for a second opinion as Lindle recommended.

  • Hi - when I was unable to access the expert care I knew I needed with stage 4 in 2009 there seemed no way of accessing it so I wrote to the BSGE to ask if they could help. They couldn't at that time so I found Mr Trehan on the internet and forced my GPs hand to get a referral as he wanted to refer me locally to another general gynae. The BSGE then came back to me to say they had considered my letter further and recognised the need for endo sufferers to have somewhere to go to find a specialist and the list was born. That was a massive breakthrough in the treatment of endometriosis but I am so deeply disheartened that so many women on here are still having to fight GPs to gain expert care and are still being sent to general gynaecologists with stage 3/4 disease and any number of previous laps under their belt. Even more so that so many seem to still think they have to just accept what their GPs tell them and daren't question their decision when a GP can't hope to know much about this complex condition. Why should they, they're not specialists? Similarly general gynaecologists are excellent at what they do, but they can't know the intricasies or have the expertise that a surgeon has excising endo day in day out. Some women seem almost insulted at the suggestion that their general gynaecologist may not be sufficiently experienced when going for their 10th lap!

    Thank you for responding and carry on spreading the word that we now have a means in this country to access expert care and that is why the list was set up.

    Linda x

  • I'm in exactly the same situation as you unfortunately. I had my lap on Wednesday and was told no endo and no follow up. They took pictures during the surgery and allowed me to take photos on my phone of the pictures which I showed a Dr on an endo facebook group and he confirmed that he couldn't see anything obvious so I'm now satisfied that they were right.

    I was told to go back to my GP and ask for a referral to other teams such as bowels and if they don't find anything then pain clinic to just manage my pain. It's incredibly disheartening to be discharged from the gynae care without any answers just because they've ruled out one condition :(

    On facebook I've been told to look into Adenomyosis as that has similar symptoms, and speak to an endocrinologist as it might be hormone related. The Dr at the hospital had no response when I pointed out that it was unlikely that my bowels were causing vaginal bleeding but there we go. He fulfilled his task of the day and screw the patient as a person (still feeling bitter).

    So like you I've made an appointment with the GP. Since my referral to the hospital 8 months ago I've moved house so new GP, she says in her blurb she has an interest in women's health but she's part time so not seeing her until the 4th. I'd be interested to hear how you get on with yours! Good luck x

  • Hi - please be sure to take the BSGE list with you and a copy of Good Medical Practice and NHS Choices that all confirm your GP must respect your right to be an equal partner in the choices regarding your care. You can choose a specialist of your choice and can go to any hospital and your GP can't decide for you. Endo is not always visible so a doctor confirming you don't have it by viewing your pictures on line is ludicrous. Even my specialist Mr Trehan couldn't see any on my peritoneum but his expert and experienced eye saw that the tissue looked 'abnormal' so he took lots of biopsies at the diagnostic lap. All came back as endo. Can you let me know who the gyneacologist was and what hospital so we can see if thy have a specialty in endo. Did they take any biopsies to confirm their findings?

    A tell tale sign in your post is the suggestion that you are sent to a bowel team. The Centres of Excellence accredited by the BSGE have to have a colorectal surgeon on their team and have to name them. You will see this when you look.

    You have obviously been suspected as having endo for you to have been sent for a lap. What are your symptoms - not just at period time?

    Linda x

    NHS Choices -

    Good Medical Practice -

  • Thanks for your reply. I have done lots of research so I was seen at a BSGE accredited hospital with an excision specialist, however I was seen by the regular gynae team. I was reassured by the consultant who agreed to the lap as she wrote on the paperwork that they would excise anything they found but it wasn't until the day of the op that I discovered that she wasn't actually doing the op herself and the person who was would cauterise anything. I told them in advance that I didn't want that and I'm dismayed by the lack of continuity in my care. I've never seen the same Dr twice!!

    No biopsies were taken and whilst you may think it's ludicrous for a Dr on facebook to give his opinion on the pictures I do highly value his opinion as an expert. He said that if there is any endo then it's minimal and not invasive and I agree from seeing the pictures myself. That's not to say that neither of them have missed anything of course. On the plus side because they didn't do anything at all I've recovered really well! Silver lining ;)

    Am I right in thinking that you're of a similar experience with no obvious endo only confirmed with a biopsy or do you have other more visible endo too? I have cramps most days, sharper pain around my tailbone and left ovary and much worse pain on my period. Coupled with regular spotting that they only controlled with the coil and Norethisterone. Throw in some fatigue for good measure and you've got me!

    I've heard nothing but good about your consultant, I wish I could afford to see him! I have considered going straight to the private consultant who heads up the NHS BSGE hospital and seeking his opinion, it would cost a few hundred but I could afford that thankfully.

    In my case I got the mirena about 9 months before my symptoms got worse and so there is a chance that that is the problem, so my next step is to take that out and see if things get worse when I allow my oestrogen to increase. Amusingly I have to have a telephone appointment with the Dr before they will make an appointment to take it out, not exactly keeping with doing what I want haha. Wow this got long quick, sorry for hijacking x

  • Hi

    As a first approach ablation can still be effective for very minimal disease if it is just a speck or two on the surface somewhere and not infiltrating. A judgement would be made at laparoscopy as to whether excision is required. Whether or not you have endo deposits will all depend on how much endometrial tissue you have floating around in you pelvis and whether you have the endometriosis process triggered for conversion into ensometriotic lesions. This is an immune reaction and to do with hormones that affects those with endometriosis. Many women have endometrial tissue in their peritoneal fluid from retrograde menstruation or mullerianism (remnants in the pelvis from when the sex organs developed as a foetus) but never develop endometriosis.

    You don't say whether you have symptoms all the time or just round your period, and whether they are just to do with painful, heavy periods (cramping, clots etc) - which the mirena would suggest. These symptoms are not usually anything to do with endometriosis deposits but hormonal manipulation of the menstrual cycle.

    I would still have to hold firm on the view that it is utterly irresponsible for a doctor to offer a service of diagnosing medical conditions by pictures sent through facebook. I don't have time to look into it but I would expect this to be against a UK GP's code of conduct. I have an album full of pictures of my pelvis from my diagnostic lap done by arguably the best specialist in the world and he could not confirm presence of endometriosis for sure in some areas until the biopsy results were in. But his instinct and experience told him what to suspect.

    At this stage I feel you should trust the opinion of the experts at the BSGE specialist hospital who confirmed you are free of endo and not some guy on facebook. They no doubt will have 'levels' of gynaecolgists beneath the top surgeons, who will be operating on stage 3/4 cases. But all will specialise in endometriosis and will be familiar with the signs of potential abnormal tissue.

    No, I'm not in the same situation. I am 61 years old, had a hysterectomy/BSO at age 44 with no endo found by a general gynaecolgist. It was hiding in the Pouch of Douglas and would have been minimal. But in those days we did not have any specialists. At age 55 I had 6 hours of radical surgery for endo on the bladder, ureters, bowel, and had my posterior peritoneum removed as biopsy confirmed widespread endo throughout. I am now an endometriosis researcher.

  • So you're saying that the OP should seek a second opinion from a specialist, but it's ok for me to trust a general gynaecologist because you've second guessed why I was recommended the coil and decided that my symptoms are normal??

    I feel as though I've annoyed you because I trust a world renowned endometriosis specialist to give me his opinion. And that is all it was, an opinion accompanied by a caveat, it wasn't a diagnosis! So feel free to look into whether you think it's against the UK GPs code of conduct but it's entirely irrelevant in my situation.

    So you'll have to forgive me for completely ignoring your uninformed advice because you know nothing of my situation.

  • I'm sorry but I don't know what your first para is supposed to mean. I have no interest in second guessing anything and have simply tried to help on the basis of the detail that you've posted. If I know nothing of your situation it is not for want of asking. My opinion of a medical person giving medical advise online is mine to have. Ordinarily it might be helpful as is advice on forums such as this as long as it is used to supplement the advice of real consultations in the real world to give an overall picture. But you have made it clear that you have no intention of trusting of the specialists you have seen but will put all your trust in your online consultant. That is for you to do if you feel it appropriate care I but think it is very dangerous. I am entitled to that opinion. Obviously you won't respond but if you do I will not reply as you are too confrontational and bitter and clearly don't know how to accept a well-meant attempt to help.

  • Thank you so much for replying I have also made an appointment with my gp but cant get one till the 17th let me know how you get on I undersrand how disheartened you feel xx

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