Bsge feels like a waste of my time advice... - Endometriosis UK

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Bsge feels like a waste of my time advice girls please

Kmlittle profile image
5 Replies

Hello

I had my first appt at bsge centre. And we'll it feels like a waste of time. I'm going to bullet point my history to keep it short

* I have had 2 previous lap under general gyn years ago

* I recently since 2014 have has no life at all due to pain

* recurrent uti

* bowel issues and bleeding

* no sex life due to pain

* a cycle of pain throughout month

* currently on medical meno pause and this has reduced my symtoms slightly have been 9 months now on it

* lower back pain

* numerous admission to hospital

* diagnosed ibs and colitis possible too

Everything is a mess I feel so lost and just want to give up now. My general gyn was 100 sure I don't have endo but following research and thing I asked to be referred to bsge centre. My general gyn seem very us pet I ask explaining he is a good doctor and proceeded to show me pictures from my pervious lap explaining he looked everywhere but I only wanted an see one opion due to my bowels and bladder being effected.

During my bsge appt he straight away starting talking about how he is 100 % sure I don't have endo that my previous Dr knows what he was doing which I found to be very rude as if they had been talking and he was only seeing me to humour me. He then said I've ready ur letter with my full history and my refferal letter but then proceeded to ask Me simple questions which I had already stated in letter for example r u in a relationship do u have children etc. Anyway he the explained he never had my case notes or results of my mri which he arranged. I then told him well I have copy of results and I preceeded to explain them. I said everything was inconclusive case my bowel was moving over my pelvis but what they could see was a deposit sitting on my bladder query it could be endo...he didn't seem bothered as tho he never believed me. So he sent me away with nothing no help and said it's probably unknown pelvic pain that we will never get to bottom of and I may benefit from seeing a pain psychology nurse. I was so disheartened by this and now at a point where is this in my head. Is the bleeding and pain and no life all in my head. He said he would discuss my mri results with his team and phone me but then said I'm very sure it's not endo it's probably just unknown. He never seemed bothered about my bowel symtoms or bladder no interest.

I'm going to give up!!!!!

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Kmlittle
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5 Replies
Tboag profile image
Tboag

Omg that is just awful, no one can be sure it's not endo, especially when you gave been diagnosed with it, it isn't a curable desease and he should be fully aware of that, even if 100℅ of the endo was removed it's possible that it's come back or that microscopic endo was missed and now grown, how dare he be so unprofessional, I think you are going to need a second opinion,

There is a lady on here called Lindle, she is very helpful and knows her stuff, please don't give up, xxxx

Kmlittle profile image
Kmlittle in reply to Tboag

Sorry ment to say...I am discussing with lindle as she helped me to get the bsge appt. I have not been officially diagnosed yet that is the issue. It's not that I'm wanting endo it's just with not have informed my mri results after 4 months of Me even having the results. It was just so unprofessional and as if he had made his mind up before I walked in. This is my second opionon too. I don't no where to go now. Or whether they just get the psychology and put it all down to being in my head. So tough. Thanks very much for ur advice tho

Stellauk profile image
Stellauk

Sorry to hear what has happened. I am a patien with endometriosis and also a dentist, so can hopefully see things from both sides. Patients often came in and tell me they have lost a filling. My immediate response is why do you think so. Most time their symptoms are sensitive to hot and cold. They then draw the conclusion a filling must fell off. However, most time this is not the case. A clinician can only reach a diagnosis by carefully listening to patients' symptoms, clinical examinations, and carry out special investigations. We do not have a diagnosis first then try to fit symptoms around the presumed diagnosis which patients often do.

Unfortunately the consultant did not come across as listen to you fully and consider all factors fully before he reached the conclusion. I am not saying he has the right diagnosis. I can understand you feel he may not able to reach the correct conclusion due to poor communications. When I saw the consultant, I also doubted whether he check everything properly. Maybe you could write a letter to him for a better explanation?

All the best

GrittyReads profile image
GrittyReads

I'm going to suggest you post on here again, and ask people to 'private message' you and tell you which BSGE centres they have had the most success with. Then try to get a consultation there, even if it means travelling. Even if it means having to go private for the initial consultation.

Lindle may be able to give better advice on this - she is marvellous - but as things stand I think you have to stress several separate points:

1) The presence - or not - of endo can only be confirmed by a laparoscopy, and as the BSGE consultant did not carry out a laparoscopy on you , he - personally - does not know if you have endo, or not.

2) It is well-known that non-specialist gynaecologists (like the ones you have seen in the past, and who carried out your laparoscopies so far) do not have the training, skills or the experience to:

a) recognise all the different forms and types of endo that can be found in the abdominal cavity, and:

b) thoroughly access and investigate all the hidden - and difficult to access - parts of the abdominal cavity.

Therefore the results presented by the general gynaes are inconclusive - plus, time has elapsed since your previous laps, and endo could have developed further since then - therefore you deserve a laparoscopy to check the state of things - now - properly.

Also, something is going on, and you need further investigations to establish what, if it does prove not to be endo.

You just need to keep plugging away, but I'm glad that Lindle is helping you. Can you get a supposrtive friend or family member up-to-speed on endo, so that they can go with you to future consultations? Meanwhile, do you have a local 'Endo' support group? Ask 'Endo Uk' about ones in your area.

Take care xx

Kmlittle profile image
Kmlittle in reply to GrittyReads

Thank u so much for ur reply. The only way I can describe the way I'm feeling the now it thumb I don't no what to do next. And I'm starting to think I really am going crazy and it's all in my head. But ur post has certainly made me feel a little more positive. Just don't understand why doctors can be so rude.

Thanks x

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