Why do people believe BSGE are ‘experts’ ... - Endometriosis UK

Endometriosis UK

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Why do people believe BSGE are ‘experts’ or in fact ‘understand’

Heloo85
Heloo85

I have been under a BSGE consultant for nigh on 5 years, and I can tell you, the sh*t is still the same! There is NO difference, other than, they have a team of surgeons if you’re an advanced, complex case, that needs a team of surgeons! But the emphasis is the same, and so is the treatment on offer, which is mini pill back to back for 3 months with a break, marina coil, Zoladex, and surgery.. And the good old ‘just get pregnant, that’ll cure you!’ Honestly ladies, don’t be thinking all it takes is a referral to a BSGE centre and you’ll be magically cured, you won’t! They’re just as useless as all other gynaecologist!

33 Replies

Couldn’t agree anymore

Heloo85
Heloo85 in reply to Adeno2020

You see it on here all time, that people are at a loss, because they don’t want to take the pill back to back, with a break, because their consultant doesn’t have a clue... And someone will say ‘force your way to BSGE, they’ll ‘cure’ you’. To be fair, they actually won’t! But that’s not the worst part! I have to be under BSGE, because I have complex disease with multiple organ involvement, I can’t go to a gynea down the road, who could possibly be at least more understanding than the BSGE consultant I’m under, who has also fobbed me off for 4 years since my last surgery! I have been under 3 monthly consultations for 4 years and they’ve kept such a close eye on me, that I may have cancer on top of actually having advance Endo again! 🤣!

If everyone wants BSGE, which is only a handful of clinics across the U.K. then all of our treatments will be poor due to stretched, over-used resources! Xx

Adeno2020
Adeno2020 in reply to Heloo85

I’ve been under BSGE now for a year and omg I’ve ONLY just today been put on waiting list for lap. Also told me my bowel symptoms that a general fynae said indicate bowel endo like blood in stool and change in bowel habits apparently according to BSGE isn’t bowel endo? Also got given back to back pill NO break to trial for 3 months and still on that treatment 12 months later. For them to then say because it won’t stopyour bleeding we will put you on induced menopause... I’m 25 August so no Thankyou! Finally got lap though! Honnestly I’ve found them a night mare personally my belief is that no matter what tag you carry whether your BSGE or general or just have an interest it depends on how much that individual person understands you and wants to help you x x x

Heloo85
Heloo85 in reply to Adeno2020

I went from GP to a private hospital in Preston! I got my appointment within 3 months, I attended, I sat down with this very lovely old style very posh consultant, we spoke for 5 mins about what happened, infection, not STI, peeing myself, pooing myself ect ect! He just went ‘I’ll put you down for a lap’ and about a month later I went for my pre-op, had surgery following week, woke up to diagnosis! Went back to follow up 2 weeks later to find out he couldn’t treat me and I’d have to go to BSGE, he would refer me as priority for surgery! And he did! He was a lovely guy!.. I wish he could’ve been my consultant, cuz hitting BSGE is where I hit a wall! My ‘priority’ surgery, like yours, took 12 months to get! My intermediate surgery turned to major, and for the last 4 years while my health has declined, I too have been fobbed off with the pill and Zoladex 🤣!

Give me that consultant at that private hospital I saw 5 years ago! Xx

Adeno2020
Adeno2020 in reply to Heloo85

OMG that’s awful as soon as you reached them it went down hill! I’m just worried now I’ve got my lap they don’t find anything as they’ve made it out to be in my head! I’ve heard so many positive things about private though ! Hope your managing well now? X x

Heloo85
Heloo85 in reply to Adeno2020

I don’t mean I paid private, this was actually through the NHS.

He was amazing!

I recently returned to BSGE with infection, not sti, can’t shit, can’t piss, sepsis, almost died! To get ‘ok we’ll send you for an ultrasound in 6 weeks if we really have too, but can you not just come back once you’ve died so we don’t have to actually do anything!’

Honestly, if anyone’s reading this, use the choose and book if it still exists and go to a private hospital! It will be better and quicker than any ‘BSGE’ xx

Adeno2020
Adeno2020 in reply to Heloo85

Ohhh I see! The amount of times I’ve thought of paying for private my partner always suggests it !

I had my little girl 2019 3 weeks after she was born I got a uterus infection that developed into sepsis. The consultants while admitted said it could of been because I have endo (suspected) and adenomyosis The gynae in our patients said I got sepsis because I had a baby young. My mom went mad! I was 22 giving birth but that’s aside the point how rude to say that to someone!

Heloo85
Heloo85 in reply to Adeno2020

Hardly ‘young’ at 22! And yes, if you have a severe disease, you’re susceptible to infection, then more susceptible to progress to sepsis! Hopefully you’ll get your surgery soon, but if you continue to be fobbed, go back to GP and get a referral to a private clinic on NHS! You will get your diagnosis but unfortunately, if anything is found that needs BSGE input, you unfortunately will end up back at the worst place to be! While suffering! Xx

Adeno2020
Adeno2020 in reply to Heloo85

I didn’t know that!! I’m so glad I do now always get water infections and stuff! I swear most gynae think ya who suffer sit at home and wait for them to get in touch but I’ve found out more from other people suffering then I have the professionals! Thankyou I recon will be later the year will all covid I’m in Birmingham too so big city ... Thankyou for your advise and Info hope you have easier days ! And good luck on your journey x x

Heloo85
Heloo85 in reply to Adeno2020

I went through a stage of passing blood clots from my kidneys! Had to have my left kidney stented as it was narrowed! No investigations where ever looked into why it was narrow! Of course, it was because my Endo was severe on my left side! But yes, water infections, pelvic infections, and of course, bowel issues are signs!

If you, or any of your family need investigations, utilise the private sector on NHS! You are much likely to be sent for full investigations as they’re out to make money, unlike the NHS themselves who are out to save money, no matter the cost! I have every time and always had the procedures I’ve needed! It’s just unfortunate my Endo was so severe I had no choice but to be at, and stay at BSGE or I would’ve stayed private on NHS xx

Adeno2020
Adeno2020 in reply to Heloo85

Omg that sounds awful and I’ll defo look into it didn’t realise it’s soemthing we was able to do x x

Heloo85
Heloo85 in reply to Adeno2020

spirehealthcare.com/how-to-...

Xx

Heloo85
Heloo85 in reply to Adeno2020

Ramsay Hospitals offer NHS treatment ‘privately’ too! I’ve had 2 MRIs and a colonoscopy at a Ramsay hospital! My original diagnostic lap was also done at a Ramsay Hospital xx

Adeno2020
Adeno2020 in reply to Heloo85

Apologies I have been seen at spire hospital! On nhs that was where the gynae told me I was young to have a baby that’s why I had sepsis

Heloo85
Heloo85 in reply to Adeno2020

Have you tried Ramasay Hospital, that was the one I was diagnosed at! I can’t believe someone said that! I hoped you put in a formal complaint xx

Adeno2020
Adeno2020 in reply to Heloo85

I didn’t you know should of to prevent it happening to someone else and no I haven’t heard of it I’ll have a look now Thankyou

Missmaid
Missmaid in reply to Adeno2020

Complain to PALS at the hospital, x

Shelly085
Shelly085 in reply to Heloo85

Hi could you plz tell me what hospital this happened in x

Oh no, I'm seeing them end of March but I just want another lap because I don't think the general gyne has done a good job!

Heloo85
Heloo85 in reply to Stacey85

You might have a better experience, but mine is just major fob off! I was diagnosed at lap at a private hospital and was referred to BSGE because I was severe, for ‘priority surgery!’ which I had to wait a year for! Then since been kept on 3 monthly consultations for 4 years, with no resolution, bounced between Zoladex and combined pill, refused further surgery!

My best and quickest experience was private on the NHS! My Endo was diagnosed 4 months after the referral to a private hospital! Had I not have been severe, I would’ve been treated in that time! BSGE are not miracle workers, and actually I got told the other week that I had a bad case of the clap (although swabs were clear) and now awaiting results for possible cancer, and DIE all happened while under ‘follow up’. So, they really are no better really! Xx

girli1969
girli1969 in reply to Stacey85

I had a faultless experience with the specialists after a frankly terrifying previous surgical experience in general gynae. Couldn’t fault them, so please don’t let this put you off

Totally agree! They have their "treatment plan", and anything else is impossible.

Heloo85
Heloo85 in reply to MissMarlene

The thing is, they actually don’t have a plan! They have ‘take the pill/take Zoladex’ and when it doesn’t work, well you must be lying! Cuz you can’t possibly have Endo while on that! Then they do that until you’re suicidal and past the age of conception then they go ‘ill give you a hysterectomy’... Then it’s, ‘you can’t possibly have Endo, you have no bits’. It’s not a plan, it’s actually standard treatment, and it doesn’t matter if you’re at a standard clinic or a BSGE! Only difference is, BSGE takes longer, because everyone thinks BSGE is better, so their waiting lists are much longer! If I could get out of BSGE, I would! But unfortunately the severity of my disease means I can’t! Xx

I’m sorry you’ve had a bad experience. For balance for anyone reading, my story is the opposite.... horrific experience with general gynaecology (I probably should have taken legal action)..... a subsequent private referral under nhs where I was told my case was too complex for the private team to operate, and finally, after an urgent gynae oncology referral I was passed to a specialist endo team who did a six hour surgery that has transformed my life.

I'm sorry yours hasn't been great but mine is fantastic. Surgery was performed far better, they normally check past the gynae organs (which some general gynaecologists don't). Not all bsge centres are bad. There are many idiots, don't get me wrong, I've met them but there are plenty that are good too. My situation is very complex and my consultant understands it thoroughly. There's no way I would've been taken seriously at general gynae with multiple organ involvement.

Agree about the medication, it's all the same rubbish.

A friend went through general gynae, the missed obvious endo, then the local bsge centre (to my surgeon) and he sorted it. My doc is great.

I couldn’t have written this better myself! Soooo true. My surgeon is one of the top in the world and runs a BGCE centre. He’s an arrogant dickhead that dismissed me because the endo that ‘HE’ took away couldn’t have possibly come back so fast. “You were clean as a whistle when I left you 6 months ago” .. **she pays for private scan and is FULL of Endo back on bowel, bladder,l , recto vaginal wall etc **

Honestly just pick a surgeon that you trust. All that glitters is certainly not gold with these BGCE specialists / centers. Good luck ladies x

I totally agree in terms of there is little difference. I have also found that the BSGE didn't want to know after my surgery! I'm now back with my local gynae who is being much more supportive. I'm fortunate that this is a route open to me. Thinking of you x

I totally agree and it’s disgusting! Xx

Reading all these comments ladies, making me alittle nervous.

I haven't had much support from my normal gynae, an advised by another to see a BSGE specialist, which I had a telephone appointment with.

I went in to hospital with having a severe reaction to Norethisterone, which was prescribed by my normal gynae. I received no support, or help when my GP and I both rang up, wanting advice on whether to stop.

I had continuous headaches and was starting to swell, along with other issues, like having bladder issues. In the end I stopped the tablets.

A few days later I woke extremely poorly with a swollen face and drooping face and weakness to the rightside of my body, and also started my period which was awful.

I was in hospital for almost 3 weeks.

Anyways my normal gynae wasn't bothered, only contacted once, I have since received and spoke to a BSGE specialist, which I was on the waiting list for, to say they need to do a lap again, becauseI can not be on the pill or any hormone based treatmentat the moment.

I do have concerns, I have been suffering for a while. Still not able to walk well and use a stick.

Reading these comments, I will definitely be more vigilant, then I already am.

Hi all,

What about if you had a lap at BSGE specialist hospital.. but the surgeon (who I met on the day) is not the listed surgeon and equally there’s almost zero information/experience on the internet, that I can find?

The two long term surgeons were isolating/taking leave at the time.

I think I initially asked to be referred to the hospital, in London and but have been also as it’s my closest hospital. Anyway, my lap was negative last year. I’m just not convinced as I have multiple cyclical symptoms.

🤷‍♀️

Totally agree with u!!! I've been with one for nearly 2 years! And all they have done is put me on decapeptyl, was only ment to be 6 months, now nearly 12!!! And I'm no further forward 😡😤

Sorry to read this - I must’ve struck lucky with my BGSE surgeon & regularly recommend them on a Facebook private group 😬

Truth!!!! The one I have been under - the guy in charge- says things that raise major red flags- ( eg- I had ablation to my endo 8 years ago so there very little chance I have endometriosis at all !) luckily my most recent surgery was NOT with him and I had excision under another consultant at same centre - scary though to think he’s the “expert” as he told me many times at my appointment

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