Are there any good doctors out there ? - Endometriosis UK

Endometriosis UK

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Are there any good doctors out there ?

ollie_86 profile image
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Hi I was diagnosed with endo at 16 and I'm now 28 I've had 9 laparoscopys and have had it removed each time I have had every treatment going the coil, zoledex, depo and every pill there is now everyone is refusing to do anything and my current doctor is trying to tell me it isn't even endo I would like to know if anybody has any recommendations on good doctors in Birmingham as I have tried every hospital in Birmingham and am getting nowhere I don't where to turn I would appreciate any suggetions

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ollie_86
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didymus profile image
didymus

Hi

I can't help you with Birmingham recommendations. However, you might want to ask people to send you a pm as, for whatever reason, we are not allowed to comment on individual named doctors, positively or negatively on the public forum. Would hate to see your post deleted by the powers that be when you are in obvious need of info. How far are you prepared to travel to see a new consultant?

I sympathise with you completely. Truth be told, I've come to the conclusion that whilst some consultants are massively better than others, when it comes to endo, sometimes they just hit a ceiling on what they can offer. Not suprising when nobody really understands the disease completely. The trick is finding a doctor who recognises the limitations but will continue to work for you anyway and not find excuses for cutting you loose. Too many women end up in a situation where doctors are almost blaming their patients for not getting better or refusing to accept that the problem is still there, when in reality, it should really be about them accepting that so far they have not managed to resolve the problem as medics. Nobody likes to think that they cannot fix things - in my experience that's particularly true of doctors.

Impatient profile image
Impatient

With 9 laparoscopies under your belt already, it's no surprise that you will find it difficult to get any surgeon wanting to do yet another one. That is a huge amount of surgery and every surgery you have creates scarring and adhesions which themselves can be painful and big problem, even when all existing endo is removed.

Have you been referred to pain clinic yet to speak to them about the many different ways to better cope with your illness? Each of the accredited endo clinics has a pain specialist on the team, and they are there not just for endo pain but also for pain resulting from nerve damage and scarring caused by surgeries.

Birmingham does have a provisional endo centre

listed on bsge.org.uk/ec-BSGE-provisi... the 2nd one on that list.

So they cannot be far off being a fully accredited endo centre, and they do have pain clinician there too.

You need to take the details of that centre or any other endo centre of your choice, to your GP and ask to be referred to them. The midlands is very ill served for endo centres, and you may find it better to travel a bit further away to get the help your need.

the fully accredited endo centres are listed on a separate webpage

bsge.org.uk/ec-BSGE-accredi...

Good Luck finding ways to improve your quality of life with endo and its complications. It isn't always possible or safe to continue having ops and sadly it may mean having to come to terms with the situation as it is, while continuing to try and find better ways of coping.

There's no harm in seeking out 2nd and 3rd opinions though, so don't ever give up trying to make the situation you are in, better for you.

wp22 profile image
wp22

The thing is when you go to a different doctor and hoping for surgery you are under no obligation to inform him of your complete past lap history.. Obviously he will know you have had some surgery but really sometimes it is best keeping the 'whole' truth to yourself sometimes. One hospital will not usually communicate with another as each new surgeon will make their own notes on you and most will not ask for past records. If surgeons are refusing to operate that is against the oath they signed when becoming a doctor. you obviously need help and they should oblige x

ollie_86 profile image
ollie_86

Hi thank you for you comments I am currently under the pain clinic and am taking matrifen patches and trammadol as well as a couple of others for other health problems the trouble is I am limited in what I can take as I am allergic to code in and I can't take anti inflammatorys due to a hiatus hernia caused by taking anti inflammatory for a long time I have travelled to Wolverhampton to see a doctor and he was the best doctor I've ever seen but he no longer sees NHS patients.

ollie_86 profile image
ollie_86 in reply to ollie_86

The problem I am having is finding a doctor who specializes in endrometriosis because just because they are gyneacologists doesn't mean they know the first thing about it and the ones who do specialize in it are only in the private sector. I really need help I just don't know how long I can do this anymore I haven't just got endo to cope with I have bowel and bladder problems and I don't sleep I don't leave my house I have no life with no light at the end of the tunnel I just know what I can do I just want someone to help me I'm at the end of my rope

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