How to get a referral to endo specialist centre?

[rpreece]

I am wondering how to get a second opinion at an endo specialist centre?

[sw1996]

Unless you are willing to pay for private I've been trying for ages to get a referal as I have been treated really poorly by the hospital

[Scooteeder]

Hi "rpreece",

DON'T GIVE UP! That's my first piece of advice. You are entitled to the best and most appropriate care possible. After all, the whole purpose of the NHS is to provide care!

Like you, I have Endo, and it's not pleasant. I cam fully understand, therefore, that you want to make sure that you are getting all the help you can; and that you are being given the best medical treatment possible.

Endo is a sadly misunderstood disease, despite the best efforts of many Endo charities. I guess that because it's an invisible illness, people just don't think it's that important - and many don't believe us sufferers, anyway. What they can't see, they think does not exist! Oh, if only that were true!

If you are experiencing problems as a result of having Endo it is only natural that you want to get things sorted out. So, your desire to be referred to an Endo Specialist makes perfect sense. Many "bog standard" Gynaecologists only know a limited amount about Endo, and often become out of their depth when dealing with the more complicated cases. It is often hugely reassuring to be under the care of a real specialist, because you are able then to ask questions, and to have the chance of receiving treatments that other Gynaecologists do not have on offer.

I am under the care of an Endo Specialist centre, quite simply because I insisted upon it. It is not always easy to get the right care. In my case, my original Gynaecologist was utterly incompetent, and mis-diagnosed me. He then failed to provide treatment. I put up with all sorts of problems from the time I was referred to him in 2006, until the point where I demanded a second opinion in 2010. Even then, I did not instantly get referred to a Specialist Centre - I simply got another basic Gynaecologist - but I was lucky that he DID recognise and diagnose Endo, and did this via laporoscopy in 2011. Still, my Endo problems did not go away, and I have since had 2 further surgeries, and am due a fourth lap in March this year.

Luckily, I am now under a Specialist centre. This is all down to my hard work and persistence. I researched on-line to find centres near me, and then demanded that my G.P. make the referral. I think it helped that I pointed out the previous Gynaecologist's errors, and the fact that this had left me very badly let down, and a lot worse off than had he got my diagnosis correct. I also pointed out my rights to be able to complain about my poor treatment. I made a case that I needed the correct treatment, and added the fact that I had already looked up a centre on-line. I think that if you have a good relationship with your G.P. it is more likely that you will be referred, as you can talk easily to the G.P. and get them to understand your point of view (i.e. why a Specialist referral is so important to your care).

I am going to send you another reply as well as this, which is one that I have sent to other women suffering from Endo, and who are at a loss as to what to do next. Please remember that what I send is just my opinion, and that the advice and suggestions contained in the reply are things that I do to help cope with my Endo. They may, or may not work, and be suitable, for you. It is up to you, and you alone, to decide how best you want to manage your illness. I always think that with Endo, the more you try to stay in control, the better - that way, the Endo does not control you!

Good luck with everything... I'm off to put together my next post to you.

Best wishes,

Elaine Ellis.

[Scooteeder]

Hi again,

Here's the second reply I promised you. Please do bear with me, as it's quite a long and detailed response. However there just may be something of use in there. I do hope so. If not, please do not feel obliged to act on any of my suggestions - do your own thing. Just know that you are not alone, and women on this site are empathizing, and crossing their fingers for you...

Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.

2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists and your area - see list of links below) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings as well, to see if they occur around your periods - this may show if it is your Endo/hormones that cause them, or if it perhaps medication causing mood alterations.

6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. If you are studying, Universities and Colleges often have Student Support Departments where disabled students and students with long term health problems can get advice and assistance. Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

8. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort is a natural remedy to help with mood swings. Echinacea can boost a sluggish immune system. However, check out any homeopathic remedy before you use it, and make sure it does not react badly with prescription medication.

Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail again, or keep regularly in touch, feel free.

Take care,

Elaine Ellis.

P.S. Just a few useful contacts:

1. ACAS (info about work, rights, and illness/disability) - telephone [phone].

2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone [phone]. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

3. Endometriosis diet - endo-resolved.com/diet.html

4. Endo specialists UK by area - bsge.org.uk/ec-BSGE-accredi...

HOPE some of this helps you. Best wishes and good luck!

(Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!

[Hidden in reply to Scooteeder]

Really nicely written Elaine. The Guilt thing is a biggy for me. I tried St John's Wort, but it stopped my Microgynon working 2 years ago. Now on antidepressants and anxiety medication.

[Scooteeder]

P.s. My e-mail...

[e-mail]

Best wishes,

Elaine.

[rpreece]

Thanks all for your posts. I have has two laps at a general gynae ward but still have syntpoms and wondered whether best to get discharged and referred by gp through choose and book - or badger surgeon at review in march...? Any thoughts x

[Colletterobbo]

Have you had zoladex injections?