BGSE appointment-help!

[Faybee87]

Hi all, bit of a strange one but I had my laparoscopy in March, and I've continued to be in pain since then. This was at my local hospital, not a BSGE centre. I haven't been impressed with the gynae who lied and said I'd agreed to go on the pill rather than giving me a lap, then didn't tell me all that much about my diagnosis after the lap, who didn't respond to a referral back to her team when one of my wounds wasn't healing and was happy to leave it until October before a follow up appointment. So I asked my doctor for a referral to Birmingham women's hospital and didn't expect it to come through until the end of the year.

Well it did come through within 2 days and it's next week!

I've got the coil fitted and currently happy to give it a year to see if it does help or not. I have been in pain nearly every day since the lap and had been bleeding every day until I was given mefenamic acid last week.

I don't want to waste the appointment and want to be under the care of Birmingham going forward, but I'm not sure what questions to ask in my appointment next week!

Any ideas? Has anybody been in a similar situation? Xx

[Christin_a]

Hello

So do you know where the endometriosis was found during your surgery? Some areas automatically mean you should be seen by a BSGE gynecologist, please note that just because someone works in the department of a hospital that has bsge centre doors not mean that they are a bsge gynecologist, Google bsge centre to check if the person is or not.

Go in with a list of symptoms and questions. You said you weren't really given any information after surgery about the diagnosis ask them for info on this.

[Faybee87 in reply to Christin_a]

Thank you sweet, my discharge notes just say it was found on my pelvic wall (left). Good point about the bsge gynae. The letter hasn't specified who I'll be seeing so it could be just a general first appointment, but I know who the bsge consultant there is so I can talk to them about that when I'm there I suppose. Symptoms and questions is a good place to start, thank you. I'm sure if I write a few bits down it'll trigger some more ideas of questions to ask- I just don't want it to be a waste of time but sod's law I'm actually feeling ok right now for the first time in ages!

[_EndoWarrior_ in reply to Faybee87]

Depending how severe your Endometriosis (I have had a laparoscopy, pelvic ultrasound and Pelvic MRI done to determine this) is I would either see a BSGE specialist or if Stage 4 which is Deep Infiltrating Endometriosis I would see a ‘Nook Dr’. I think you need a lot of your questions answered and recommend joining ‘Nancy’s Nook Endometriosis Education Group’ on Facebook. It’s helped me make some important decisions and empowered me to get the right treatment for me.

You have the right to choose who treats you.

I must clarify this group is not a support group. It is purely to gain knowledge of Endometriosis.

It’s a closed group and to join you must answer 3 security questions and after that you cannot reply or comment on any topics or posts for a week. This gives you time to read the introductory files to get you clued up. Good luck! 🙂

[Christin_a in reply to Faybee87]

Based on where it is, I don't think you meet the automatic criteria to be seen by a BSGE. As they usually only tend to cases that are stage 3 or 4. But they can see people outside of this, especially if the treatment options haven't been helping so this might be the route/part you need to emphasis more on during your meeting.

But yes write it down and you will probably find things will pop into your mind.

List of how things have changed post surgery etc would be useful, including if any meds have changed in this time or anything like that.

[Christin_a in reply to Christin_a]

Also have a look at a Facebook group called "Endorevisited - UK endometriosis support and information group".

It's a group like this but it also has files specific to the treatment pathways and information specific to getting treatment in the UK. Understanding the treatment pathways let's you make informed decisions and know who /what /where is the best point of call. Like here you can post and ask for others feedback /personal experiences.

[Faybee87 in reply to Christin_a]

Thank you so much for your replies! Sadly I'm not on Facebook anymore- deleted my account a whole back for the sake of my mental health and have no desire to rejoin, it's a shame as those groups sound great. That's the annoying thing, that I wasn't given a stage, so don't know how deep or otherwise it is infiltrating! I figure at least I'm away from my previous gynae and in the right place to get referred onto the bsge consultant if necessary so moving in the right direction! Thanks again, really appreciate your help x

[Christin_a in reply to Faybee87]

Hello no worries. Some useful things you can look up yourself is NICE guidelines for the treatment of endo. This is what nhs Dr's should be adhering to when treating endo, I think this shows the pathway too so if x doesn't work try y, or send to specialist a for example

[Faybee87 in reply to Christin_a]

Perfect, thank you! I like to go into these things armed with knowledge so that's really helpful 😊 xx

[Cupcake1617]

Do you know who you are seeing at the Womens? I was in a similar position, lap last year and continuous bleeding since September, I had the coil at Christmas and the pill since March. My consultant has been really good and understanding, I'm waiting for more surgery, I have my final consultation next week.

[Faybee87 in reply to Cupcake1617]

Hi, thanks for replying! I'm not sure yet, the letter doesn't say. Who are you under if you don't mind me asking? The constant bleeding is exhausting, isn't it? Thankfully the mefenamic acid seems to be working for that now. Hope your surgery comes through soon for you! Xx

[Cupcake1617 in reply to Faybee87]

It’s exhausting along with the pain meds. I’m sure I’m meant to have shares in bodyform 😂. Oh glad that’s helping. I’ll pm you who I’m seeing x

[Faybee87 in reply to Cupcake1617]

Haha that's so funny, I always say I should have shares in bodyform too! Weirdly, the company that makes them is one of my suppliers at work, sadly we don't deal with that side of the business though or I could have saved myself a lot of money by buying in bulk!x