I've complied with everything it's time t... - Endometriosis UK

Endometriosis UK

70,614 members52,113 posts

I've complied with everything it's time to fight for a specialist

jennies profile image
3 Replies

So, last night I had my ultrasound and not surprisingly there was nothing untoward, so I have now tried all the GPs demands to enable me to move forward with a referral, I'm 4 weeks into the evil Depo injection (pointless) and have taken all their prescribed painkillers, I have complied.

My first lap was 4.5 years ago and was a quick in and out and some endo was 'burnt off' and I was sent away without any other information or advice other than come back if you have any more problems.

Skip on 4.5 years and here I am, daily pain in left sciatic area, hip and down my left leg, the lady who did my scan was incredibly sympathetic and frustrated that I wasn't given any advice or further help after my first op.

Through this website I have been able to educate myself over the last 6 months and feel oh so grateful for its existence.

I am returning to the GP at the end of next week and will not leave the room until I have been referred to a BSGE centre, probably Bristol as I am in Swindon.

Keep on fighting ladies, I feel things are improving in terms of acceptance, education and treatment for this horrible disease and I feel more positive and hopeful than I have in quite some time.

Written by
jennies profile image
jennies
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Simonetta profile image
Simonetta

Dear jennies,

I am sorry to hear of your experience to date.

The world has changed and you can now decide on who should treat you, not others deciding for you. Regarding referral to an endometriosis specialist, I would definitely suggest going to your GP armed with your choice/s.

You mention you live in Swindon, I can point you to the following link to the BSGE website:

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

They offer lists of specialist endometriosis centres made up of teams of gynaecologists, urologists, pain management specialists, endometriosis specialist nurses and colorectal surgeons across the country.

The nearest centres to you would be either the North Bristol NHS Trust at the Southmead Hospital in Bristol or the Endometriosis CaRe Oxford Endometriosis Centre at the John Radcliffe Hospital in Oxford:

Ahead of a consultation with your gynaecologist (when you finally achieve a referral) and/or an appointment with your GP, you may find it helpful to complete and bring along the following with you:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

I did wonder if you might also be interested in or have use of the following information that Endometriosis UK produces :-

Understanding Endometriosis:

endometriosis-uk.org/sites/...

Treatment options:

endometriosis-uk.org/sites/...

Laparoscopic surgery for endometriosis:

endometriosis-uk.org/sites/...

As far as pain management is concerned you may find the following of use. From page 8 onwards of the treatment information pack offers pain relief options. I have also added a few other external links:-

endometriosis-uk.org/sites/...

britishpainsociety.org/

cnhc.org.uk/

acupuncture.org.uk/

Finally, if you feel you need some extra support, you may or may not be aware that Endometriosis UK has face to face support groups run by volunteers all touched by endometriosis. I believe there are groups in Bristol and Cheltenham which are your nearest groups:

endometriosis-uk.org/find-l...

If you prefer not engage in a face to face meeting or they are simply too far, there are also online support groups you can sign up to (please note, no web cam is used):

endometriosis-uk.org/online...

Furthermore, there is a freephone helpline number where you can speak to someone in confidence and is open most days (0808 808 2227):

endometriosis-uk.org/helpline

I wish you well in your search for an endometriosis specialist and for the future.

All the best.

Simonetta, Endometriosis UK

jennies profile image
jennies in reply to Simonetta

Thank you for all of the useful information Simonetta

Simonetta profile image
Simonetta in reply to jennies

You are most welcome. I hope you find it helpful.

Kind regards,

Simonetta, Endometriosis UK

You may also like...

Specialist Centres - waiting times?

involvement that I have. I was referred to the endo clinic at UCLH back in May and have today...

Waiting Times/Endo Specialist Centre

in July. Since then I have been passed from pillar to post and my symptoms have only got worse. I...

I've had my surgery and for the first time in a long time I'm pain free

Ladies I did it. I finally had my ovaries and Fallopian tubes removed and I'm finally (other than...

Laparoscopy recovery time - Advice please

Hello ladies, I’m looking for some advice please. I will also be going to my doctor so please don’t

Endo specialist -private?

writing, as like many posts i've read, I feel like I have hit a wall. I am currently working...