1st Visit to BSGE Centre

[Joannaf78]

So today was my first visit to the BSGE centre after being treated privately by General gynae's. I felt really nervous and worried that they wouldn't take me seriously as the other gynaes did.

Anyhow, I didn't see the head honcho, but I did see another consultant who was really nice. He asked me lots of questions. When I spoke about bowel issues, he mentioned IBS. I put him straight and told him I had a colonoscopy in March and I had been misdiagnosed worh IBS and that has been ruled out.

He tried to give me an internal but it was miles too painful and I ended up having to stop him. I couldn't stop crying. The consultant was really kind as was the nurse. They stopped and made sure I was ok before sitting me down again.

He then told me, I need an MRI. He explained he wanted to see if it's DIE. I asked if this would show up on the MRI, as my previous experience I was told it would not show up. He said it would be done properly by a someone who understands endo.

So he wants this done by September, then the endo team will meet and discuss this. Then it's surgery time! I also asked about excision, the consultant told me they do that at the hospital as this is the gold standard for treating it!

A bit nervous about the MRI, mainly because what if they don't see anything and then leave me in all this pain!

[Tboag]

Hi, so please you are with the right people, bare in mind endo dosnt always show up on a MRI scan

I was diagnosed in march 15 and had excision and a hysterectomy for adenomyosis in july 15, by general gyne, I'm still in pain and am awaiting another laparoscopy now with a bsge surgeon, I've had a MRI and nothing apart from a thickening vagina wall, but consultant said MRI is non conclusive and he will still give me a laparoscopy to see what's going on,

Good luck xx

[Joannaf78 in reply to Tboag]

Thank you Tboag ! I think they just want to check for DIE & adenomyosis. Because it was so painful for them to give me an internal, they won't do a trans vaginal scan. I'm worrying they won't do anything! But it didn't come across like that!

Thank you for the support x

[Vikarymik]

Hi guys , I think if endo is outside the womb then mri will show the good picture. First, I had ultrasound which shown the mass on my ovaries, then mri confirmed the extensive endo with adhesions to a bowel and a bladder.

I was told that I would need progesterone injections before the op.

They are not very clear about the treatment though and hardly saying anything.

Hope you all ok.

[Joannaf78 in reply to Vikarymik]

I hope they do give you some idea over treatment Vikarymik . I asked so many questions, but right now it's mri, then they discuss the findings, then I'm back in again to discuss surgery! Is the progesterone injections, depo? X

[Vikarymik in reply to Joannaf78]

Hi , thank s for you reply. Don't really know anything about the injections. Waiting for the Bsge on 31 of august and hope that they will be clearer as to what the options are because it is the clinic rather then a basic appointment at the local hospital.

Hope they sort it out for you x

[squidgy]

It's so refreshing when you get to talk to someone who listens and seems to understand isn't it!!

I am currently under a BSGE centre for severe endo and like you was referred for an MRI and I am now on the list for an operation. I was also nervous having the MRI as I know Endo doesn't usually show up unless it is deep infiltrating and feared I would be fobbed off like have been by other drs. However my MRI did show and confirm the extent of the endo. When they mentioned it didn't appear in a certain area they said this was hopeful however will know more when I have my op. Which shows that they are aware just cos it not show on an MRI doesn't mean it isn't there as only deep infiltrating endo shows.

Best of luck with your MRI and further treatment x

[Joannaf78 in reply to squidgy]

Thank you squidgy ! That has put my mind at rest! I'm pretty worried as like yourself I have been fobbed off so many times. I'm pinning all my hopes on the endo clinic and don't want to be let down again. X

[squidgy in reply to Joannaf78]

Will have my fingers crossed for you.

[Vikarymik in reply to squidgy]

Hi , it is refreshing as you say. No one can really understand and I find close people find it hard to accept that you feel tired all the time. ...

Are you having op without any hormonal treatment first ?

Have they suggested the open surgery or laporoscopy? I feel if it is extended endo it is better to have the open op as other organs are involved.

Xx

[squidgy in reply to Vikarymik]

Hi not sure if you asking me this or joannaf78 who did the original post? But thought I'd reply in case is aimed at me. Apologies for delay replying. Been "one of those days" for the past few days as usual.

No I'm not having any hormonal treatment before my op. I had a laparoscopy back in June 2014 where my endo got diagnosed and told "severe endo and everything is a mess inside and one big lump" that the Gynae didn't want to touch it. Now I am with a BSGE centre they want to do a op, but diagnostic only to see for themselves the state of it and that way they can give the most accurate, realistic treatment plan, which they say will be most likely another op. But they are also going to be removing my right tube and ovary during this diagnositic op as I have 3 very large solid masses on it which are making me feel even more poorly than endo already does.

I'v enot had the pre-op date yet but when we talked at my consultation they said they hope to do it by laparoscopy but if need open up further they will have to.

Yeh you are right there are some people, even close family who just don't understand. I have lost track the amount of times I have been told "oh its sunny that means you will be feeling better today" or "take a probiotic drink and that will cure you!" Aaaarrrgh!

Apologies if your comment was not aimed at me and I have just bored you with my long blah blah. Best of luck to you with your endo fight/journey.

[Joannaf78 in reply to Vikarymik]

Vikarymik

I'm sorry it took me so long to reply. I've been in loads of pain yet again and not felt up to anything. Not sure who your question is to but I can't take hormones, I bleed non stop and makes everything much worse than it is. I think this question is for squidgy rather than me! Not had a lap yet still waiting for the blooming MRI to happen!

[Kayleycraigxo]

How do you get refered to bsge centre do they have one in Scotland X desperate need of some help

[Joannaf78 in reply to Kayleycraigxo]

Kayleycraigxo Firstly I googled BSGE centres and found my nearest one. Then I went to the GP and asked to be referred. I had already been diagnosed with endo previously, so I was lucky that my GP had this knowledge already and knew I was struggling. You can asked to be referred to anywhere in the UK though through NHS Choices. I hope you get the referral from the GP and the wait isn't too long for you!

[Sam341 in reply to Kayleycraigxo]

Hi @kayleycraigxo where in Scotland are you? They only have one in Aberdeen and Edinburgh. It is very very hard to get an appointment with them. It's a post code lottery. I'm in Fife which means I can't get a referral until my doctor surgery agrees to send me which they don't have to do.

[Kayleycraigxo in reply to Sam341]

Hi Sam thank you for replying I am in Kilmarnock just out side Glasgow I am so upset because I thought my operation would have me pain free but my lower back and leg pain is so sore I have never had the leg pain before no stomach pain but I feel like I have tried everything don't know what else to do anymore ment to be going on holiday in two weeks feel like cancelling because I am so sore went to my doctor they won't refer me back as says its to early X

[Kayleycraigxo]

Thank you recently had surgery four weeks ago with a normal gyno but I am getting really bad back pain and leg pain I actually can't cope anymore I am only 19 I can't even go out the house am so depressed taken over my life X

[mountaincat]

Have you called the Endometriosis UK helpline? They'll talk you through getting a referral to a BSGE centre