South west uk help!!

[Blb21]

Hi, Looking for advice on excision/multidisciplinary specialists in south west uk!! Diagnosed via laparoscopy in 2014 with extensive presumptive endometriosis/salpingosis on Pouch of Douglas. My bowel symptoms have been terrible, I've had a stomach ache every day since May, we're now in December! I am now also getting sharp chest pains on the left hand side sometimes lasting a minute sometimes hours, it renders me unable to move as it's so painful. Occasional short of breath walking upstairs (baring in mind I do alot of gym each week this is unusual). My gp (and myself) think my endo is worsening but also potentially spread to my diaphragm. I've been referred back to a consultant. I have read about (edited in line with Endometriosis UK's code of conduct) based in birmingham (via (edited in line with endometriosis uk's code of conduct) but worried they may refuse for me to go that far (I'm based in Swindon). Does anyone have any specialists that do excision and also have other surgeons on hand for bowel issues or diaphragm in the south west closer to swindon?? Thanks in advance xo

[Christin_a]

Hello.

Endometriosis in the pod can be an indication of deep infiltrating endometriosis. Which should be dealt with at BSGE centres, there's a few in the south west. You can Google them to find one close to you. These have multidisciplinary teams (specialist nurses, pain teams, colorectal surgeons etc on top of specialist gynaecologist) for the treatment of endo and do excision etc. These lists are updated once a year in January as they have to meet specific criteria every year to stay as a BSGE centre.

FYI Nancy's nooks list is not at all a comprehensive list for gynecologist the UK who are endo specialists. And unfortunately I have found less than glowing reviews of their surgeons have been deleted from the group pretty swiftly, giving people a very one sided view of their list of surgeons.

[Blb21 in reply to Christin_a]

Thank you so much for the info. I'll be sure to take a look!

[Lindle]

Your GP should know how to refer you to a BSGE centre. This is the UK treatment specification for severe disease:

england.nhs.uk/commissionin...

[Lindle]

There aren't many private ones though.

[Manfe85]

Hi, I'm in South West UK, I have a great Multi-disaplinary team in North Devon District Hospital that have carried out 3 excision surgeries on me so far this year. I'm due for bladder and bowel resection in the new year and have had 1 excision of my full thickness Diaframatic endometriosis too. It improved my pain, breathing and the coughing up blood almost instantly (I also had endo on the lung tissue) u can't fault my MDT, I'm unable to undergo any hormone treatments due to Thyroid disease and BRCA 1 positive result so surgeries have been my only real option. They're also taking control of my risk reducing double mastectomy in the new year for the BRCA. I hope you find help and a good support team, mine are unable to preform the back surgery I need for the endometrial Tumour that has encased my sciatic nerve and sacral ligament so they're referring me to a specialist at BRI for this one but they have been brilliant for everything else. x

[Blb21 in reply to Manfe85]

Thank you so much for replying, sounds like you have been through alot hope you are on the mend and have a good recovery! I will definitely check them out when my referral comes through, thank you! X