I was first diagnosed in 2011 after many years of horrendous Endo symptoms. I had my first lap at kings college London as that’s where I was living at the time. The diagnosis was endometriosis with my left ovary and Fallopian tube fused to my abdominal wall. The Endo was ablated and my symptoms eased. In 2015 my symptoms returned with pain now also in and around my rectum. I had a second lap in East Sussex with the diagnosis as Endo on the left and right ovaries/Fallopian tubes, and on the bowel. This was ablated and I went on the pill to try and ease my symptoms. I had my third lap three weeks ago after the intense pain and heavy bleeding/clots returned and was rendering me unable to manage daily tasks. I had a different consultant as she was available on the date, and when I came around from the surgery I was told ‘no Endo, no scar tissue, no adhesions, no cysts’. I also only had an incision on my pubic bone and bellybutton-all my other laps were four incisions and I can’t understand why she didn’t go in the sides as my pain is predominately left sided. I woke up during the GA and the oxygen had been turned off before they took out my oxygen tube-this has caused me a huge amount of distress as I felt as though I was drowning but couldn’t react. After 6 seconds they removed the tube. Horrific.
I contacted PALS to try and get some answers and had my apt today. The consultant wasn’t available, and the Registrar stood by the consultant, saying that it was diagnostic and I do not have Endo. He asked whether I had ever had any other abdominal surgery and I explained about my previous Laps, I asked him to please compare the previous images with this one and he said he can see in the letter from the surgeon that there was nothing there so he didn’t need to. He asked me to explain the pain-which I did and explained it is now constant rather than only whilst menstruating and has become worse since the surgery. After an internal examination in which I said was very painful on the left side, he said ‘I don’t think your pain is too bad-we can manage you on the pill for a couple of years’. I began to cry and apologised, but said I’m reacting this way because I’ve fought very hard for this diagnosis (I know so many of you understand) and now I’m back to the beginning of trying to get someone to listen to me. He then asked if there was any DV in my household, whether I was under stress with work or my mental health may be in decline?? He gave me a ‘new diagnosis’ of Pelvic Congestion Disease. I do not feel that my symptoms amount to this as I have previously had surgical diagnosis of Endo twice-it just doesn’t make sense to me.
I’m so sorry for the essay, but I am just so at a loss of what to do. The plan was to have the remaining Endo ablated and then start Zoladex, as the pain is constant and now not only related to my periods-therefore stopping my periods won’t stop the pain. I feel as though the new consultant surgeon missed the Endo and now I’m going to be stuck with this pain forever. Has anyone had any experience with changing back to their original consultant? Or changing hospitals? Again I’m sorry for unloading, I’m just wondering whether anyone else has had experience of a diagnosis then being retracted by a different consultant.
Thank you
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Lilac07
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Hello didn’t want to read and run I can’t really help as I’m trying to get a diagnosis by I’m so sorry you are going through this you obviously have endo there is no cure it can only be managed the best thing will be to look for another gp I would think but you may be back at square one like you say you would have to convince them paper work is wrong and keep fighting good luck
Thank you so much for your reply, it’s really appreciated. My GP is actually very supportive, it’s just this consultant surgeon who has taken over my care that I’m having problems with really. She also stitched me up way too tight and these had to be cut out today so I’ve lost all faith in the care I’ve received with this most recent experience. She was supposed to come and explain to me her findings after the lap, but she didn’t. Then today she was in the next room but sent the registrar to speak to me about her findings. I just feel like I’m up against an impossible task to get them to re do the lap and admit that the paperwork may not be correct. I’m not sure they will do that as it will mean discrediting a consultant. I also work in the same department which is making the whole experience incredibly uncomfortable as these are technically my colleagues.
I'm so sorry to read this and also currently dealing with endo battle, as we all are, with this horrid condition! My advice would be to instantly change surgeons/consultants and find one that listens. You need a skilled excision gynaecologist and not one that ablates it. You already have a diagnosis of endo so be confident and trust your instinct, this recent one sounds like they are being dismissive of your endo - probably because they don't have the knowledge or skills. Keep fighting - we are all warriors. Big hugs xx
Thank you so much, I hope you’re ok and not suffering too much with this awful disease. I’m in East Sussex, but if I find a better hospital can my GP refer me anywhere? X
You're welcome hun, it's a pain in the bum hey - literally! I think, but don't quote me on this, if you have a diagnosis of Stage 3 or 4 endo you can be referred anywhere even if outside your area. Think it's all on the NICE guidelines. I ended up paying for a private consultation just because the wait in my area was 11 months to see a gyny. I ended up being diagnosed with Stage 4. I definitely would check the guidelines, go back to your GP and say you need to be referred to an excision specialist - perhaps check which hospitals they work in first. The more info you go with the easier it should be for your Dr. I have my fingers crossed for you. I can’t even imagine waking up mid surgery 😲 no wonder it has terrified you xx
I know this post is a few days old and you've had lots of replies but I couldn't just read this and run.
I'm so sorry for what you're going through with your current consultant. First things first.....yes!!!! Absolutely you are allowed a second opinion, it is your right! Secondly, you've already been diagnosed with Endo in the past and considering it was around you're rectum it sounds like it is fairly deep infiltrating (mine is too). As horrible as this is for you, it does mean you are in the position that you are allowed to demand a referral to a specialist Endo Centre and not just a gynae dr with interest in Endo. This means you can be referred outside of your local hospitals and county in order to get the help you need - I am the same.
I can thoroughly recommend a referral to the Endo Centre (within the Elizabeth Garrett Wing) at University College London Hospital. They have 3 consultants who work together in the unit who are all top of their game plus a very good senior registrar. They do the gynae and urology work themselves, not ablation but excision which is really important. They also work with other teams in the hosp for Endo on bowels and rectum, they worked with Chris Wood for my bowels who was great. They organise it all for you. I would thoroughly recommend a referral to the unit and the named consultant to be Mr A Vashisht, he's amazing! Mr E Saradogan is also wonderful if Mr V's list is full. They are all in clinic on same day usually. They will do all the scans there and the specialist clinic nurse will be the contact for you for queries so no need for message passing with secretaries. Hope this helps x
Thank you so much. It’s so draining having to practically start from the beginning, I’ve been signed off for another week as it’s not only painful, but I feel like I’m not coping psychologically from the trauma of the procedure and the decision made. I have contacted pals and made my wishes clear to be referred to a specialist centre, thank you for your recommendation xx
Hi all. I have an appointment on Monday with a GP to discuss a referral to an Endo Centre, I have asked for Kings College as I had my first Endo surgery there. I really need some advice as to what to say to put my point across as I feel that the GP may do the same, look at the notes from the surgery and be unwilling to refer me. Does anyone have any pointers? I just feel so broken down by all of this I can feel all the fight inside me just reducing down to nothing.
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