I don't know what else to do :( advice on BSGE clinic

I'm actually at the end of my tether with endometriosis!

I had my lap and diagnosis in April, I had some endo removed on both ovaries and behind my uterus, at that time the Mirena coil was fitted. I also had a sigmoidoscopy in may which they found nothing.

I've since been in more pain since my lap, I've actually been signed off work now because I actually cannot even manage a few hours there. I went back to my GP in july and was told they've done everything they can and they've referred me to the pain clinic (in November). I decided to go private to see if they'd be more responsive but I've since been met with the same reaction. I had another vaginal scan which found nothing (there was also nothing when I had the same scan in January but I still had extensive endo on my ovaries). I've been told that the best thing to do is to deal with the pain instead of finding out if theres more endo or if there are any other problems.

This makes no sense to me. I don't want to be on painkillers for the rest of my life. I'm already taking cocodemol 4/5 times a day and I feel very sluggish.

I've read about bsge clinics on here (not once has this been mentioned to me by the several drs I've seen btw) and was wondering if anyone had any advice on how to be referred to them and what the process is.

I need something to be done. I've been living in bed for over a month now only leaving the house to attend doctors appointments. I'm 27, single with no kids still living at home, I'm scared I'll need to resign from work and I have no one to financially support me (despite living at home). I feel like my life is on hold until I can do something.

Really desperate for any advice or information that could help me.


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11 Replies

  • You could find more info by check Lindle's post here. You are entitled to choose to see a BSGE credited specialist if you live in England. Check their website out to find on e near you. In the main time still attend the pain clinic. It could still be useful for pain management.

    Best wishes

  • Thank you x

  • Hi look on the BSGE website and decide who you want see then go back to GP and TELL them you want a referral to them. If they refuse try a different GP. If that doesn't work message Lindle on here and she will be able to help. Also look at her posts on treatment pathways and on how to get a referral.

    Good luck.

  • I've found one near me so I will be TELLING my gp to refer me. Thank you x

  • Hi there,

    As you prob know just cos nothing shows on an ultra sound doesn't mean there isn't endo as endo doesn't show on these!

    What I did to get a referal to a BSGE Clinic is the following:

    1. I looked up on the website which centre was nearest to me plus a couple of others.

    2. I then wrote a letter to my GP. Which ended up being 8 pages long! In it I detailed every symptom I suffer with, how it affects me not only physically, but mentally too and how it affects every aspect of my life be it social, work, friends, family, relationship, getting out, lifting things etc etc.

    I also wrote what I have had done so far and been found.

    I then said that due to all I going through and suffering with I felt, with no disrespect to the Gynae's who have been dealing with me in the past (cough cough) I need to see someone who specialises in this evil disease and this is via a BSGE Centre. I listed the one I wanted to be refered to ideally and the other one if couldn't get the first one. I then went on to say why I wanted to see the specialist and what I was hoping to get from it.

    I said I had written the letter as there is just so much to cover in a 10 min session and wanted to lay it all out clearly. I thanked them for their time to read my letter and said I was more than happy to come in and discus it with them.

    To be honest I was very much expecting to be called in and then have to fight for the referal still. However I got a call from the secretary who said the Dr had agreed to needing a referal and she was getting in contact with the centre I wanted. I think personally the dr read the letter and thought "sod this!" and refered me to someone else! hee hee!

    I'm not saying it will be the same for you, but wanted to let you know what I did to get the referal.

    Best of luck to you and hope you get the referal x x

  • I know! I mentioned that to my doctor and I told him that the last time I had the scan nothing showed up and they still found extensive endo on both ovaries and behind my uterus. he said if there was any endo they'd be able to tell. It's so frustrating going in circles I'm starting to think I'm imagining the pain! I will actually write to my doctor, listing everything like you did, explaining the full effects. I just need them to really understand what I'm going through.

    Thank you, this was really helpful.

  • Glad my long garble was of some help.

    In letter again reiterate that endo doesn't show on ultra sounds and that when told this before and had op there was endo found. Which means you have endo and need seeing by a specialist. Yeah I think making them aware of how much affects every aspect of life even pushing a supermarket trolley and then feeling completely ruined fro the rest of the day, having to cancel on social events all the time etc. Hopefully will get through to one of the drs! But yeh like you say it is so frustrating going around in circles all the time and having to fight to be listened to and action taken. We are just seen as over reacting, hormonal women who can't deal with normal period pain! If only there was a pill we could give them that made them feel how we feel physically and mentally for the day! Bet their stance would soon change! Ooops I've babbled on again!

    Best of luck x x

  • If they even experienced this pain for one day I'm sure they'd do more about it. Womens health needs to be taken more seriously.

    Lol it's ok thanks again xx

  • Having read some posts on here about endo on the pouch of Douglas, I thought I'd mention this to my doctor as he well. He told me that If they done the laparoscopy they would have cleared it there too. Is this correct? From my understanding this can only be done through a proper surgery. Can anyone shed light on this?

  • Hi - have a look at my post on the diagnostic lap. Yes, they should check the POD but many general gynaes don't venture beyond the reproductive organs because they are obstetricians and essentially interested in how endo may be affecting fertility by pulling the ovaries out of place, blocking tubes etc. Even if they do look there the POD can look normal when in fact there can be adhesions masking the presence of endo beneath. If you are in England you have a right to be seen by whoever you want and to a second opinion. When you write to the GP be sure to refer to all the relevant provisions that allow this - so NHS Choices that allows you to choose a consultant lead team, Good Medical Practice that allows you a second opinion and the BSGE website that provides for referral to be made by a GP or consultant for any stage of endo.

  • Thank you Lindle, i think it was actually one of your posts that I read originally. I will look into this and get writing!

    Thank you x

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