Has anyone cancelled with general gynae and asked for referral to BSGE Centre?

[mylady77]

Hello everyone,

The more I read on here the more worried I am that I may be having a diagnostic laparoscopy done by my gynae when I should be asking for a referral to a BSGE Centre. I have no firm endo diagnosis as yet...

I have a diagnosis of Adenomyosis and my gynae said there are adhesions present attaching my uterus to my bowel.

I had a flexible sigmoidoscopy recently, as I have rectal bleeding, but this came back clear.

Has anyone been in a similar situation? Has anyone actually opted to cancel their lap and seek more specialist help?

Thanks x

[Billybob12]

I am currently waiting for a general gynae appointment and I'm back at the doctors next Monday for blood test. After reading people's post I too am going to ask to be referred to a BSGE centre and cancel the general gynae appointment. I'll let you know what the Doctor says on Monday. I think we are in a similar situation because I too had a flexible sigmoidoscopy recently which came back clear. Take care x

[mylady77 in reply to Billybob12]

Hello,

Thanks for your reply and please do let me know how you get on.

Seems a shame to undergo a lap to diagnose endo and then have to have another to get some treatment if it is found.

Still considering options at the moment.

Best wishes x

[mylady77 in reply to Billybob12]

Hello,

I heard back from the GP today and, surprisingly, she agreed to refer me... our previous encounter was very emotional and fraught.

She requested to see my MRI results and after that it was plain sailing.

How did you get on?

[Billybob12 in reply to mylady77]

Glad you've been referred without much trouble.

My doc said she has referred me to see a gynae at a Menstrual Disorder Clinic. My appointment is 27 June so I'll go and see what they say.

[emiliejane]

Can't offer any advice as I'm still awaiting diagnosis, but I have my pre-op next week and am really tempted to ask for a referral to BSGE Centre too, as I would feel much more comfortable with this, especially given my hospital only treat using diathermy. 

[mylady77 in reply to emiliejane]

Hello,

It gets so confusing and seems odd that the onus is on us to find ourselves the best treatment. The official guidelines are pretty clear but it seems they're often ignored by general gynaecologists who opt to treat people like us despite surely, being aware of the existence of specialist centres.

My current gynaecologist's background is in fertility problems. This is not an issue for me.

Please let me know what happens if you do request the referral.

Best wishes x

[mylady77 in reply to emiliejane]

Hello,

It took some arguing, and lots of begging, but my GP has finally agreed to refer me to a BSGE Centre.

I rang the hospital where I was seeing the general gynae today and cancelled my pre-op and lap.

How did you get on?

[Red_Crumb]

Hi. 

I have just got back from my doctors appointment asking for a referral to a bsge center which was agreed. I have a endometrioma which was diagnosed through ultrasound. i have been seeing a general gyne but was unhappy with the way i was treated and the way they went about things so i decided to ask for a referral. Now just have to play the waiting game for the appointment at the bsge center comes through 

[mylady77 in reply to Red_Crumb]

Hello,

Really pleased you got the referral sorted and hope you don't have to wait too long to be seen.

The waiting time is part of the dilemma for me - can't afford to miss much more work...

Let me know how you get on.

Best wishes x

[Tboag]

I would go straight to a bsge centre if you can get refferal, I've had a lap with a gyne and he removed endo, and I had a hysterectomy 4 months latter due to adenomyosis, I'm still in pain now 9 months on, and am now awaiting another lap to see if he missed any endo, 

So my opinion would be fight your sock s off to get to the right surgeon, 

Good luck to all of you, xx

[mylady77 in reply to Tboag]

Hello,

That's my fear - surely a specialist is much less likely to miss anything.

Seems counter intuitive in one way to delay treatment by seeking another referral but then it could save months/years of continued suffering.

Sorry to hear that after all your treatment you're still in pain. Hope this next lap does the job!

Best wishes x

[PaulaSs]

Hi there, I have done this recently. I saw a general gynae earlier this year who put me forward for a lap. Endrometriomas and adhesions showed up on my scan so they know I have endo. They said they would go in, see what they could do and if it was more complex than they could manage would stop the op and then refer me to a specialist. After reading up on here I decided to go straight for the bsge option, went to my gp and asked for a referral. She tried to say that only secondary care could refer me but I'd already called the endo centre to check that a gp could refer. I've got an appointment now for August which is ages away but I'd rather wait a bit longer and be seen by an endo specialist than have multiple surgeries or the problem not treated properly. I'd recommend researching which centre you want to go to, after asking for a referral to one, I later saw another that looked better so had to get my gp to change the referral. 

[mylady77 in reply to PaulaSs]

Hello,

From what I've read the adhesions alone would be an indication of endo. I haven't had anything else which would explain them but my gynae says she needs to go in and see whether there is any endo present.

It's all a bit confusing and there was no indication she'd be doing anything other than having a look.

Good to know the answer should my GP suggest she can't refer me - she can be very reluctant to refer me anywhere, unless it's her own idea.

I'm coming around to your way of thinking - would be best to wait and be seen by a specialist - I just hope I don't lose my job in the mean time, I've just bought my first house...

Let me know how you get on - sounds like we have similar issues.

Best wishes x

[mylady77 in reply to PaulaSs]

Hello,

Finally got my referral despite my GP being initially very reluctant.

Now I'm waiting for an appointment date.

Feels like the right move, even if it is months away. A few more months of pain followed by some definitive answers will be worth it.

Did my research and found a very good centre not too far away.

Thanks for your advice.

[PaulaSs in reply to mylady77]

Hi, that's great news that you've got a referral! Fingers crossed you don't have too long to wait. It's worth ringing up to check if there's a cancellation. I had a stroke of luck as the centre called me last week and offered a cancellation for that day. So pleased that I got the referral, just got to wait for a surgery date now. Good luck! Xx

[KSvedenmacher]

I have confirmed endometriosis (had a lap in Canada years ago) and have endometriosis on my bladder and bowel. I went to the GP to ask for a referral to a BSGE and had to fight tooth and nail for it. In the end he did refer me, but said the BSGE might not take me. I asked for a copy of the referral letter and if they refuse to take me, I will call and fight with them. I am trying to get my records from Canada to take to the BSGE.

[mylady77 in reply to KSvedenmacher]

Hello,

It's infuriating that we have to 'argue' for a referral.

Especially in your case, when you have a firm diagnosis already - it seems utterly ridiculous.

I hope you get an appointment at the centre soon, and without any further complications.

Best wishes x

[mylady77]

Hello,

This is good, factual information I can take to my GP. I feel as if I need to get a case together. I asked for a referral to a BSGE centre following the adeno diagnosis and the mention of adhesions but she refused.

I had a flexible sigmoidoscopy during which the surgeon took a few biopsies of suspected endo sites but they came back clear. Does this mean I could still have rectovaginal endo but it hasn't infiltrated the bowel as yet?

Thanks for your help x

[KSvedenmacher]

I am in Basingstoke and have asked for a referral to the Hampshire BGSE in either Southampton or Winchester.

[mylady77]

I'm in County Durham.

I found two possible BSGC Centres - RVI at Newcastle and James Cook at Middlesbrough.

I'd probably opt for the latter as it's slightly closer to me.

I wasn't clear on RV endo but it does sounds highly likely - and I'm struggling to walk at the moment, with awful pains in my right leg which could indicate uterosacral involvement.

I've had such problems for years and years - have been putting everything down to ME/CFS since I was about 12. I'm now 38 and things have recently gone downhill at an alarming rate.

I'm booking my app with the GP today and going armed with quite a bit of info, thanks to you and others who replied.

Thank you x

[mylady77]

I will follow all of your advice - I have my appointment for Friday morning.

Many, many thanks,

Alison

[mylady77 in reply to mylady77]

Unfortunately the GP was very unhelpful.

She said Adenomyosis is 'just fibroids' - I do have one small fibroid according to an ultrasound. This isn't my understanding of adeno at all, and I've done a lot of reading.

The gynae said the ultrasound had missed allsorts and sent me for an MRI, and it was then I was diagnosed with adenomyosis.

I spied a sentence in the gynae's letter to my GP which said that although scans haven't evidenced endo, clinical exam did suggest its presence - which I suppose must refer to the adhesions between bowel and uterus.

GP said it isn't in her remit to refer me.

Seemed to be more concerned about her professional reputation. Asked me what would happen if she referred me and the specialists found no endometriosis - I said, well that would be great, not realising she meant how it would look for her.

I referred her to the guidelines but she refused to read them there and then. She asked me to leave and ring back next week once she's had a look into the situation a bit more. She's requesting to see the MRI and I'm worried that the MRI wont suggest anything other than adeno, even though the adhesions do, and she'll continue to refuse.

Actually, I was a blubbering mess and taking too much of her time so I'm not even sure she'll look into it at all. Might have been to get me to leave.

I have a history of depression and am never taken seriously.

So upset but clearly not alone in this situation.

Made the mistake of mentioning this forum and she said, 'Well, I can hardly refer you on the advice of you 'friends'. Those groups all have their own agenda'.

Grrrr

I'll keep trying, might have to change GP.

Thanks for your help Lindle.

[JeanOsborne in reply to mylady77]

Hi Hun yeah please see another GP. She is so so so wrong. Adenomyosis is not fibroids and yes it is her place to refer you.

When you see another GP take the guidelines with you and refuse to leave until they read it and do a referral.

If they still refuse then tell them you want a letter explaining why they won't do it. Make an appointment with the practice manager and take the guidelines and the refusal letter to them. I've heard of other people trying this approach with success.

You deserve better than this so don't sell yourself short and don't give up Hun.

We are all here for you.

[mylady77 in reply to JeanOsborne]

Thank you - was feeling so hopeless but you're right, got to keep plodding on and try a different approach.

Haven't much energy left at the moment.

Really appreciate your kindness.

x

[JeanOsborne in reply to mylady77]

I do know what it's like Hun. Took me nearly 30 years to get someone to listen and take me seriously.

I actually gave up at one point. It was only when I was ttc for 4 years with no success I tried again. Unfortunately i think it was only because of that , that someone listened.

[mylady77 in reply to JeanOsborne]

That's so sad - to have to suffer for so long without understanding and help.

Thank goodness someone finally listened but it's disgraceful that it had to take decades.

The physical suffering is bad enough but the lack of empathy and assistance is awful.

It beggars belief.

[JeanOsborne in reply to mylady77]

At least I got there in the end!

I am sad that I will never become a mum but I have my wonderful husband , which is more than I ever thought I would have.

I now plan on enjoying the rest of my life with him and making each day count.

I'm always here if you need to talk.

[mylady77 in reply to JeanOsborne]

My GP came through for me in the end - after she'd taken a look at my MRI results.

I waited a week or so before pestering her for a response and she told me, 'It's as you said' and agreed to make the referral.

It's such a relief.

Thanks for your support.

[JeanOsborne in reply to mylady77]

I'm really pleased for Hun. Hopefully now you can get sorted. Keep in touch and let us know how you get on.

[KSvedenmacher]

Personally I think my GP was being difficult. I also asked for a copy of my referral letter as I did not trust the GP to write down all I told him. I hate when GPs think more highly of their own ego than the patient's well being.

[KSvedenmacher]

That is awful! I seriously believe my doctor originally wrote a disparaging letter so the BSGE centre would refuse me as when I called asking for a copy, the assistant told me the letter had already been written, yet I didn't get a call to pick up my copy until a week later and the letter was dated that day (not the day I called to ask for a copy). Why do GPs not want us to get better?