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Endometriosis UK
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Uncertainty re: diagnosis.

Hi everyone, I posted on here awhile ago and now I have a date for my first laparoscopy (12/04). I had an MRI scan in Jan and the gynaecologist wrote to me reporting she couldn't detect any significant signs of endo on the scan though a laparoscopy would be needed to confirm this. I have researched her and it seems she doesn't specialise in endometriosis - looking through the posts it seems that having a gynae specialising in endo is a great asset. My symptoms have been more pronounced for the last 12 months; heavy bleeding, irregular periods, cramping, throbbing pain in my lower right hand side, lower back pain etc. I'm concerned that if she doesn't detect/remove any adhesions during the procedure then where do I go from there. Do I continue to suffer with no diagnosis to attribute it to and no plan of action. I'm feeling desperate and terribly isolated. I am trying to pace myself and take one step at a time though I cannot help but think about the future! I am 36 and would like to try for a child within the next few years. I have been symptomatic since the age of 14 though just assumed this was normal until the throbbing in on my lower RHS started - this prompted me to see my GP. Sorry for the moan! I know you are all suffering in one way or another and I appreciate the time you take to read this. Many thanks x

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Hi! I wouldn’t worry too much that she doesn’t specialise in endo, I had the same gynae for 2 years then she cancelled my op last minute, so I got a cancellation from a completely new gynae and he didn’t specialise in it and didn’t know my history at all but did a really good job! I wouldn’t worry too much about the MRI, the scans I had only picked up that I had a cyst on my ovary then when they operated it was stage 4 endo, adhesions everywhere, endo in bladder Fallopian tubes blocked and all sorts. I hope this helps xxxx

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Thanks for your reply Gemma, yes it does help massively. I'll just have to see what happens! Was that your first laparoscopy? x

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Yeah it was my first one! Had it in July 2018! I was shocked it was such a mess in there lol, scans aren’t always 100% accurate xxx

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So sorry to hear that, how are you doing now? Better I hope after having had all the adhesions removed! x

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It’s been this best thing I’ve ever done still pain free! It’s completely given me back quality of life xxx

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Fantastic, so good to hear that! x

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I'm going to tell you something that might scare you but which is important.

Unless an experienced endo surgeon performs surgery on you, the lap you undergo might be completely pointless because they are not trained to recognise all adhesions and deep-infiltrating endo, so even though it might go well for those who only have ovarian chocolate cysts, if your situation is more complex you will not feel better after surgery or even worse. PLEASE, PLEASE only seek an experienced endo surgeon!!

If you need names of endo surgeons in the UK please private message me with your location and I'll give you contact info.

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Thank you for your reply though I have a date for a laparoscopy now. It’s on the NHS. I accepted the third date they gave me and I believe, under NHS protocol, if I cancel the laparoscopy (to seek a gynae specialising in endometriosis) then I will be taken off the list. The other option is I go can private. Whilst the cost is prohibitive it may be an option I’ll have to think seriously about. I’m in Nottinghamshire x

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Hi, i did surgery with a gyn with no experience and worst experience ever now i need a second lap, i do recomend to go with someone that really nows endometriosis , someone that does excision not ablation, also endo is very difficult and if not treat the right way. There is a list of doctors look for nancy nook on facebook theres is so much info and a list of specialist around the world.

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Thank you x

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Do you have a list of surgeons in gynaecology departments StefaniaJW as that would be useful - other than the leads of tertiary BSGE centres? We do need a means of identifying surgeons who should be doing first laps when there isn't evidence of severe disease to warrant direct referral to centres. The GMC specialist sub register is a starting point to look for those with sub-specialism in Reproductive Medicine, but this is not accessible to non-medical professionals.

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Hi StefaniaJW, how do you have all the contact information for endo surgeons? It would be useful for the rest of us if you would share this so we can look it up. I for example, am on the waiting list at Basingstoke hospital in Hampshire, I'm not sure who my surgeon will be so it would be really appreciated if you could private message where i can find the best person in my area. We all appreciate your help. Thanks.

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I think StefaniaJW is probably referring to surgeons at BSGE accredited centres. But these are tertiary centres with referrals commissioned by NHS England and not the local CCG as is the case with 'normal' E-referrals (choose and Book) referrals. There are referral criteria that NHS England has to approve before funding is agreed. You would only get a referral if there is evidence of deep disease or if you have had repeated treatments/surgeries in gynaecology that has not helped. You can request a referral to one of these surgeons under E-referrals but your right is only to be treated by one of their 'team', which is the case of an initial lap is unlikely to be the BSGE surgeon. On my group we are building a list of surgeons who are not on the BSGE list (and therefore are not limited by the BSGE referral criteria), but who have specialist training in endo.

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StefaniaJW, I would be interested in any contact info you have for surgeons in Inverness where I live? Please private message me. I was informed by my surgeon that if she finds endo on my bowel she will need to refer me on to a specialist in that sort of surgery in Aberdeen. Many Thanks!

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Nightingale89 Your consultant is correct in so far as if severe disease is found you will need to be referred on to the BSGE accredited endo centre in Aberdeen. You will find the centre and named surgeons on the list below. It is important though that she has expertise/specialist training in doing laps. Very severe endo will often be obvious from adhesions/fibrosis in the pelvis which are indicative of deep severe endo, but many general gynaecologists don't make this connection and report 'just adhesions'. Deep endo is actually mostly fibrosis with little in the way of endo cells themselves. Perhaps more importantly less severe endo can be easy to miss. However, since she is aware of the requirement to refer you on to the centre if there is evidence of severe disease (as required by NICE) hopefully she will also be aware of the requirement for diagnostic laps to only be done by those with expertise/additional training in endo, and will be suitably qualified. Will pm you.

bsge.org.uk/centre/

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Hi StefaniaJW I’m in Stnstead Abbott’s in Hertfordshire and I’m currently awaiting my 1st gynae appointment then I’m expecting an mri md lap to follow. I have read before that a specialist gynae is important, do you have any details of any specialists in my area? I’d appreciate it so much xx

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I was told I cannot post names of doctors here or I'll get banned from the forum. Message me privately

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I'm not sure who you are replying to but the Nancy's Nook list includes 8 UK surgeons, only 6 of whom work in the NHS, based on whether or not they have heard of them and the are a US based group! 5 of them work in BSGE centres so fall under the strict referral criteria for highly specialised services. The majority of the excellent advanced excision surgeons we have in the UK are excluded from that list and that group prohibits members from even discussing them. I asked StefaniaJW whether she had a list of those not on the list for initial referrals.

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I'm Italian so I have no idea about other UK excision surgeons. All the names I have are from the Nancy Nook group file.

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It is a requirement of the new NICE guideline published in Sept 2017 that only a specialist with expertise in diagnosis of endo must treat you. It has actually been a requirement in England since at least 2012 that they have a 'special interest' but this brings it directly to a GP's attention and applies to the whole of the UK. This is one of the major changes in endo diagnosis/treatment and must be abided by since so-called treatment by non-specialists is likely to be a major contributor in the significant diagnostic delays.

So it is vital that the person doing the lap knows all the subtle appearances and how to do a systematic pelvic inspection. Yes, if severe disease hits them in the eye as soon as they go in then that will be obvious and they should stitch up your wounds and refer you on to a specialist centre. But it is those with less than severe disease that so often have it missed, with typically just the reproduction organs looked at when the most common location is deep behind the uterus. It is not an 'option' whether or not the operating surgeon has extra training/endo skills, it is a requirement.

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Thank you Lindle. This is all rather daunting, not sure what to do x

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We have identified a specialist in Nottinghamshire outside of a BSGE centre (which have referral criteria as tertiary centres):

circlehealth.co.uk/consulta...

I don't have any feedback but this is the sort of consultant women should be seeing first.

If you have not been given a surgeon's name and are on a general surgery list in gynaecology then it is the lead of the department's responsibility to ensure you are operated on by someone with a special training/interest (RCOG Standards 2016). I should ring the hospital and say you are aware of the NICE requirement to be operated on only by a specialist in endo so who will it be? See how they respond. If they start talking about all gynaecologists being able to do it be firm and quote the 2017 NICE guideline and that obviously you will only accept being treated as per guidelines given the many failed laparoscopies in general gynae lead to missed disease, hence this requirement now. If you get a name you can ask for details of their specialist training and experience.

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Thank you for the link. I will give the hospital a call in the morning to clarify x

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My first consultant had a special interest in laparoscopic surgery however when I arrived on the day of surgery it was done by someone that does not have either that or endo listed. My new consultant is refusing another lap and actually now refusing to treat me at all. Do you have any advice? I feel like I'm about to go into a very deep state of depression due to my treatment by NHS.

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Have you thought about seeking a second opinion privately? I know the cost is a factor but I am thinking for myself it will be money very well spent x

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It's definitely a possibility later down the line just need to keep saving. In the meantime I will keep standing my ground and being a pain - seems to be the only way to get things done.

Hope things improve for you soon.

Xx

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That is clearly against guidelines. The NICE guideline requires that you are only seen by someone with a special interest in endo but the problem is that endo is not recognised as a sub-specialty of gynaecology. It is included in detail though in the sub-specialty 'Reproductive Medicine' and sub-specialties are identified on the GMC's Specialist Register. I don't know how easy it is for doctors to access consultants on this list - i.e. whether you need a name to find them or whether a list comes up of names to choose from. I'm asking the GMC if they could give me the current list to direct women to.

There are so many steps where women are being failed when ultimately being operated on by a general surgeon with no specialist skill/experience. Firstly, the GP referral should ensure this by saying in the referral that you must be seen by a specialist in endo and giving a name. We would then expect the CCG when dealing with referrals to identify such a specialist if the GP doesn't suggest it, but seemingly GPs in CCGs are not aware of this requirement. Then once in hospital on the day of surgery the clinical lead must ensure that the operating surgeon is appropriately trained but this is not happening either. This is confirmed by the 2016 RCOG Standards which say at 1.3:

'Surgical procedures must be conducted by an

appropriately trained gynaecologist. It is the

responsibility of the department’s clinical lead to

ensure this is the case.'

'Gynaecologists who perform elective surgery

should be able to demonstrate their competency

at the procedures they perform.'

Then the surgeon him or herself should only do the procedure knowing they have specialist training but this is not happening in many cases. It all beggars belief really. Will pm you. x

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Come to my country to get treated. Choosing one surgeon and then ending up with a different one is preposterous.

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If she doesn’t find anything, you need to ask her what else she thinks it might be. As much as finding no endo might be a disappointment in some ways, it can also be good as you can rule it out. If she doesn’t have any advice on what it could possibly be then use that to ask your family doctor to refer you to another gyno or endo specialist.

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Thank you. Sometimes I wonder if I am imagining all of this but then I remind myself the pain and the irregularly of bleeding is very real. I am so frustrated with myself!!! X

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It’s real and valid!! Don’t worry about that part. Just be firm and tell your gyno that if there isn’t endo, she has to figure out what is wrong. It’s her job so don’t feel like you’re burdening her :) good luck!! Xxx

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Thank you! x

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I have recently just gone back to a gynaecologist that specialises in endo as the first gynae I saw only removed the endo ‘superficially’ through being burnt off rather than excision. Symptoms came back within two months and I’m back on the waiting list for another laparoscopy.

From my recent experience I would say seeing an endo specialist is paramount to making sure you get the best treatment and making sure it gets removed properly. I wish I knew this last year!

I really hope it gets sorted for you! Xxx

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Thank you x

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Hi misscharlie

Have whatever it takes to get your diagnosis, I had to go through so much to get my diagnosis, insisting on having more operations to get that diagnosis. As GPS and gynes said I didn't have endo.

My main advice would be listen to your instincts, we know our own bodies. It took me 15-20 years to learn that, as it took me 21 years( of pain every day) to get my diary. Xx

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Thank you, the general consensus seems to be to be find an endometriosis specialist x

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Sorry diagnosis not diary

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Hi I was advised the first lap is often to identify the severity of your condition and then cases are transferred to specialists. So I had my first lap and whilst under had an ovary removed and a cysts too but whilst under what should have been a 30 mins procedure became over 3 hours due to a significant bleed. I woke up with so much pain and my gynaecologist is the head of gynaecology at two hospitals and a private endo specialist and a very well respected gynaecologist.

She advised me I had “scared her” her words and I needed a blood transfusion due to the blood. I have not had further surgery as she says it’s too much of mess. None of my Endometriosis showed up on an mri. I was worse after the surgery so my advice is every case is unique and like the ladies are advising you please do your research. Remember it is your body you have the right to choose what is right for you. I would not rush into anything until you feel confident you are under the right surgeon. I know how awful living with Endometriosis is I have stage 4/severe and there are many success stories with surgery but just be sure you are well informed with what is right for you.

Ablation has worked for some and not others. I know of cases who have had Endometriosis surgically removed and it has grown back. I am not trying to scare you at all I just feel we all want to be out of pain and leading a normal life and can often trust others with surgery before we are fully Informed.

As you can see in your replies it’s a mixed bag of positive & negative experiences.

I am no better off since my surgery. I truly hope you receive the care and outcome you need and take care of yourself.

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Thank you and so sorry to hear you have suffered so dreadfully with it all. From the research I have done online it seems my gynaecologist does not specilise exclusively in endometriosis so I am a little unsure as to whether I should go ahead with the lap next Friday or not. Another lady on this post kindly sent me the link to a private consultant so it might be worth me trying to get a private consultation with him, although unlikely to get it before next week x

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It is no longer the case to have a general gynaecologist identify the disease first as that has proven to be the main flaw in getting diagnosed in secondary care. Identifying endo is very complex and requires someone with expertise in doing that as confirmed by NICE. As the ESHRE guideline says in the intro:

'Endometriosis diagnosis is based on the women's history, symptoms and signs; the diagnosis is

corroborated by physical examination and imaging techniques, and finally proven by histology of either a directly biopsied vaginal lesion, from a scar, or of tissue collected during laparoscopy. The visual recognition of endometriosis during laparoscopy alone is of limited value as it has a high false positive rate. On the other hand, diagnosis during laparoscopy is dependent on the ability of the surgeon to recognize peritoneal disease in all its different appearances. If the surgeon performing the laparoscopy is not familiar with these appearances, endometriosis may be missed and left untreated

— you see only what you recognize. This is especially relevant in deep infiltrating disease, where

sometimes endometriosis is hidden beneath the peritoneal surface.

Due to the wide variety of clinical practice in the management of disease in these women, doctors

frequently experience difficulties in establishing a final diagnosis of endometriosis. This results in many women receiving either delayed or suboptimal care (Kennedy, et al., 2005).'

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I agree with all you have detailed, the point I was trying to make is my gynaecologist does specialise in Endometriosis and Unfortunately it has made very little difference to my outcome as my Endometriosis is everywhere.

I saw her privately first and then had my surgery on the nhs.

We are all unique so all I was trying to say was carry out your research and do not make hasty decisions based on other people’s opinions.

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Hi again all, just want to update everyone re: my first laparoscopy, following my previous post. I had the lap this afternoon and am currently wide awake at 00.48!!! I expect the fatigue will catch up with me tomorrow! I was discharged in the evening. I had a hysterscopy too and was found to have adhesions attached to my bowel and a polyp. All have been removed and sent for analysis as per protocol. Surgery lasted approx 2 hours. I was not alert enough to absorb all of the gynae’s findings, however, I hope to receive a letter detailing the report shortly or perhaps I should request my notes. I have been put on the pill as opposed the Mirena Coil. Whilst I feel relieved to have determined the cause of my pain, I must say it has been overwhelming and draining mentally and physically, though I know this was to be expected!! Thank you to everyone for their kind, reassuring words prior to surgery and for sharing your experiences with me! All the very best xxx

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