Can I request referral to BSGE centre outside my county?

[kimbob2]

Hi I'm new here. I was diagnosed with Stage 4 endo in 2007. Had surgery and was able to manage with oral contraceptive taken back-to-back. However, my GP took me off the pill early 2017 as I am now 46 - despite my protests. As predicted, the extreme pain and bleeding (I also have adenomyosis) have returned; once again I am having to take sicks days from work and just wish I would die every month. I have finally convinced my GP to refer and I did ask for a endo specialist centre. However, the choices have come back as general gyanae in local hospitals. There are no specialist centres in Wiltshire. Anyone know if I can I request referral to one listed on BSGE? e.g. Portsmouth

Thank you!

[Croydebay]

Yes you can as I lived in Salisbury and I asked to be referred to the BSGE centre in Southampton. Got a little messed up and took a while to happen as my doctor has never heard of a BSGE centre before but I got there in the end. I think you can opt to go to whatever one you want x

[Penelopeel]

It’s safe to take The combined t oral contraceptive pill until you are 50. Unless you are a smoker. So I don’t know why your Gp did that. Look up the jean Haines foundation website. It is a wonderful Australian website that will tell you everything you need to know and confirm what I have said that the pill is safe until 50. Why don’t you go back on it. ??? Otherwise plain old progesterone is safe forever until you are 100 years old so you could take that continuously . Eg norethisterone 5 mg or provera 10 mg or prometrium (200 or 300mg) daily. Guess what I take norethisterone 5 mg daily and I am 49. It has saved me. I cannot take the pill as it gives me

Migraine. So get a new Gp !!!!

[Fabbird]

Hi, yes you can be referred. The funding is not by county but by CCG region. These vary in size can be quite small.

What happens is that your CCG funds your local NHS services. If they haven’t funded a local BSGE centre they will have a budget which can pay for out of area referrals. These budgets have been squeezed recently but they have to exist because there are always some conditions for which people need to travel to specialist centres. What you will need to do is make the case that you fall into this group.

If you take the BSGE info to your GP, they should know the local system. It probably has to go to a funding panel or something. It can take slightly longer than a routine local referral, but not necessarily.

Good luck!

[Sam110]

Hi. I have never heard of an endo specialist centre nor a bsge- are these Nhs? How can I get some help, I too die every month

[GrittyReads in reply to Sam110]

Hi, They are NHS and most areas have one or more, but it takes a referral from your GP to be seem by them. The problem is that they are only for women who are diagnosed with the more problematic stages of Endo (I think stages 3 & 4). So, first you need to get your GP to refer you to a good Gynae Dept - preferably one that has a specialist skilled in Endo - for a laparoscopy. The catch is making sure it is a diagnostic laparoscopy, at first, although if they do find extreme Endo eg on the bowel, then you should be referred to a Centre.

I would read around on here, a lot, first, and visit the 'Endo UK' website - link at the top of the page. There you can talk to their advisors, and read about BSGE Centres and the protocol that GPs are supposed to follow to refer patients there, and what generally happens.

Also, there are lots of local 'Endo UK' Support groups around the country - some are detailed on the Endo UK site, so see if there is a group near you. If you meet up with such a group, the leaders and members will almost certainly be able to tell you of the best people to see in your area.

Hope this helps

[Sam110 in reply to GrittyReads]

Hi

Thanks so much for replying. I'm not sure what stage mine is at - I do have private healthcare through work which I intend to use. My current issue is unbearable pain following an ablation 12 months ago. Plus my bowel is stuck to my ovary so they were nervous about a hysterectomy. I just need some real options. My gynaecologist retires in march and I don't want to rush any decisions. I'm really stuck about what to do as my ablation I feel was a bad move.

Sam

[Fabbird in reply to Sam110]

Have a look at this website which lists all the BSGE centres.

bsge.org.uk/centre/

Hopefully there is one near you.

[Sam110 in reply to Fabbird]

Thanks so much !! I have found one in Birmingham. Have called them. Here's to hope again ...

[GrittyReads in reply to Sam110]

If your bowel was stuck to your ovary, I am sure you are already someone who should have been referred to a BSGE Centre. This is exactly the sort of specialised surgery that they can do, as they have bowel and urology surgeons on hand. They are also much more skilled at finding Endo in all the hard to access areas, as well as recognising the different types of 'hard to identify' Endo - and at removing it all successfully. If it was general gynaes who didn't want to handle the bowel/ovary issue, then I think you need to see the sort of specialists in BSGE Centres. But talk to 'Endo UK' as they may have suggestions. People on here in the past have seen an Endo Gynae, privately, to then get the referral to an Endo Centre, although if your notes suggest the situation is as you describe, your existing Gynae or GP possibly should have already referred you. Get all your notes and letters, dig deeply, and than talk to 'Endo UK'

Hope you get some resolution, take care.

[Sam110 in reply to GrittyReads]

Hi, do you mean talk to the endo uk helpline? I just looked for support groups and whilst Nottingham is listed, there are no scheduled meetings.

I am really desperate for some answers and ways forward from this awful ablation I had.

Sounds like I deffo need a centre with the bowel issue

[GrittyReads in reply to Sam110]

Yes, talk to the UK Helpline, they may be able to give you info on the Nottm Group leaders. There may also be other Groups near-ish to Nottm, whether it's suburbs, nearby towns, or even cities; eg phoning someone in a Lincoln or Derby group may lead to better info on Nottm.

Also, are there any contact details at all for the Women who run the Nottm Support Group? If so you can email or phone and ask them for advice, and info about the next meeting.

Failing all that, go back to your GP and insist he follow the protocol on referral to BSGE Centrs of someone with severe Endo - but first, the people on the 'Endo UK' helpline may be able to advise on how best to go about this.

Sadly all this work - including trying to raise the profile of Endo and the mass of time and money and work hours heedlessly lost to an illness that could possibly be vastly reduced - is done by volunteers, and it's hard. Plus, it's just been Xmas and folk are just back to work and kids to school. But if you can talk to the Endo Uk Helpline, that would be a start, especially about tackling your GP..

Good luck.

PS there is an Endo Facebook UK Group (not Endo UK). the woman who set that up is amazing, she may help.

[Sam110 in reply to GrittyReads]

Thanks for all the useful information ! I will deffo be looking at all the options for support. Thanks again x

[kimbob2]

Thank you so much, all of you, for of your replies! I was struggling to find a direction to search and find information on all of this so your advice is very much appreciated.

I moved to Salisbury 2 years ago from London and have really struggled to get my GP to listen to me. I have a science background so am very factual with my symptoms and concerns, and can articulate my history with endo. However, she seems to block me at every point. Even to get this referral she insisted on an internal exam (I was at the tail end of my period but still bleeding) to confirm that I was indeed "tender". I have never experienced such a thing and intend to file a complaint (and register at a different practise), but I really do need to get the referral sorted asap.

I will spend some time researching all that you have suggested and will let you know how things turn out in case it's useful for anyone else out there.

THANK YOU again!!

[kimbob2]

So, after some convincing I had a call back from my GP practice yesterday saying that I would receive a new referral from Book & Choose. This morning a letter arrived saying that the Endometriosis Service in Poole had been notified of my need to book an appointment with them and that they will contact me when a slot becomes available. Hooray!

In the meantime, I have just registered at a new GP practice as I do not have the energy to battle with my current GP. Does anyone know if this will have an effect on my new referral? I suppose I could call the Book & Choose Referral Centre and ask.

As an aside, I have been on Desogestrel now for 3 weeks. Some spotting and, unfortunately, this week a period. Still incredibly painful! I currently live alone and usually suffer in silence, writhing around and just about managing to medicate on codeine. Unfortunately, this time, I was so nauseous I threw up a lot and ended up in A&E on morphine. I really hope that my periods stop altogether soon. And that the team in Poole can help!

Fingers crossed!

x

[gld87 in reply to kimbob2]

Hi Kim! A little off topic, but I noticed you're under Poole Hospital for your treatment. I'm actually thinking of setting up an Endo support group for those in the Bournemouth/Poole/Dorset area - I'd love to know if you'd find this kind of thing useful

[kimbob2 in reply to gld87]

Hi there, thanks for getting in touch (sorry for the late reply). I think a support group would be a great idea for that area as I did look for one when in Salisbury. However, I've moved recently to West Yorkshire (I did manage to keep my initial new patient appointment at Poole - I was keen to keep hold of that as the GP here thinks the Mirena coil and waiting for menopause will solve everything). All the best