Advice for Endo Surgery: Hi, I have severe... - Endometriosis UK

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Advice for Endo Surgery

Whirlygig44 profile image
8 Replies

Hi, I have severe Endo which has stuck my left ovary to my sigmoid colon. I am asking my GP to refer me for a second opinion- last week I ad a endometrioma burst - still in pain!

Do I get put on the waiting list to attend a BSGE centre via the NHS, or should I pay private to see a Gynae from one of these centres to speed things up?

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luthien profile image
luthien

I'm not sure which is best, I think the BSGE centers are shorter waiting times than being referred to an NHS specialist in a normal hospital. Hopefully someone will help you with their experience xx

I went private as my work has heath insurance, it meant I could book my op myself and everything else, plus waiting times depending on specialist can be just two weeks. Happy to answer questions about all the private stuff.

Whirlygig44 profile image
Whirlygig44 in reply to luthien

Thanks Farahziya

As I had an Endometrioma rupture last week time is of the essence.

Will probably need a private Gynae, together with colorectal surgeon. Did you only consider gynae’s with Endometriosis on their profile? I googled a guy named George Goumalatsos at the Hampshire Clinic, just nervous about making a decision.

luthien profile image
luthien in reply to Whirlygig44

I had a specialist in heavy periods, fertility, endometriosis, laparoscopy and etc. My surgery needed to be with a colorectal surgeon as I had endo on the bowel. My specialists works with a few so he chose one.

Have you checked out your local private hospitals? Most of them have a type of insurance or pay in instalments, check out bupa for an idea. if you look at local private hospitals they should have profile pages to read up on the consultants. My insurance is wpa and they have a freedom to choose thing so I could choose a specialist from a list. Mine is Mr Philip Kaloo, just google for an idea, I had my op at the Nuffield Health and consultations at the Winfield (too small for ops - part of the Gynaecology Group). The websites he's on could be used for you to search yours.

Your's specialises in endometrial ablation which is one of the methods of removal of endo but it's not the most effective, excision is. You could always email his secretary and ask if he could consider you for laparoscopic excision of endo. You'll need an appointment first. Happy to talk through ideas of costings etc.

Whirlygig44 profile image
Whirlygig44 in reply to luthien

Oh dear, you’ve gone through the mill. Did you have excision of Endometriosis from the bowel? My Gynae said I might need bowel re-section too😕

Thanks for the details regarding the Gynae I had googled, no I only want excision! Most seem to only do the ablation. Looks like I need to do more research.

Thanks for your offer of ideas regards costings. 😊

luthien profile image
luthien in reply to Whirlygig44

I had my first op to diagnose and excise endo -lots all over the place and sticking everything together - all unstuck and most of the endo excised. That's when they found a bit on the surface of my bowel, as a colorectal specialist was needed this bit would be done later.

My bowel endo removal op was 9 months after my first lap, so they did discuss that if it's got worse in that time it could perforate requiring a bowel resection, but they won't know the extent until they have a look. Luckily it was just a rectal shave which isn't too bad.

Ablation is the easiest and fastest recovery, but it only takes the top layers of endo off, chances of regrowth are higher.. Excision removes the whole thing and some healthy cells so reducing chances of regrowth, obviously it's a more involved procedure and can take a little longer both op wise and recovery. Both mine have been excision, personally I wouldn't choose anything else.

Ask the surgeons secretary if he does do excision, you may find he does...

xx

Whirlygig44 profile image
Whirlygig44 in reply to luthien

Thanks, Hearing what your treatment involved is useful to know. Isn’t it just a shame that in general we have to go through several surgeries before our issues are resolved. I might make some calls this afternoon to ask which surgeons do a complete excision on Endo.

Still feel rather confused as to who to ask my GP to refer me to. It has become apparent from the posts on this site (very helpful) that most seem to favour going for treatment at one of the BSGE centres.

Just concerned as to the waiting lists, initially I need to see a consultant in the next

2/3 weeks. Maybe I could have a consult with a BSGE surgeon privately to start with?

luthien profile image
luthien in reply to Whirlygig44

Yeah; I was lucky with mine that they did the diagnostic and removal of endo in one. I've heard most places do that separately. I know it's going to be more surgeries in the future as it grows back, it's never really gone.

I just picked a specialist - part of The Gynaecology Group with the recognition MRCOG - Royal College of Obstetricians and Gynaecologists. The BSGE centers are sort of the same it's just the majority of them together - it's meant to be the step inbetween NHS and Private, which suits most people whom aren't sure about the NHS and can't afford private. Having searched BSGE in google, the second down is an entry for it under the RCOG website so they're one and the same group of specialists!

Your GP will refer you to whomever you choose if you have a name of a specialist. You'll need to contact the specialist first and book an appointment (initial consultation) then say to your GP "I'd like to be referred to.... at..... centre" Then give them the details and they'll send your notes over. If you just want to go to any specialist at any center including NHS, that's when the GP just does an NHS referral then you'll be added to a waiting list and be sent an appointment date or have to make an appointment online .... waiting times anywhere from weeks to 9 months. I did this way to begin with in June 2017, then found a private specialist; My initial consultation with an NHS specialist came through after my private operation (November 2017 - initial consultation, treatment for a related issue, second consultation, operation and two week check up)!

You can do the first appointment wherever and with whomever you've looked into, but sometimes different centers / practices / specialists will want to do that appointment again when you first see them as they don't know you and don't have notes - they keep their own notes and send your GP a summary of their findings / future scans / operations.

kelsbels88 profile image
kelsbels88

Hi

I too have my ovary attaches to my sigmoid colon and I’m being referred to a specialist where I live who deals with this type of surgery in a regular basis.

I think if you say time is of the essence then maybe look at going private if that’s an option for you

good luck xx

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