First appointment BSGE Centre - Strange experience, is this normal?

[Mewbookitty]

Hi all,

So I've finally been referred to bsge centre as a new outpatient and I had my first appointment yesterday, so I didn't see my consultant which I know can happen sometimes so I saw a female who works under him. We went into a room just the two of us and she just asked me of my history with endo and how I am now etc I told her about how after my lap last June the pain is worse along with other symptoms headaches, fatigue etc.

She told me about how after surgery you can still have pain from nerve damage and inflammation that can mimic endo pain and if my bowel has been stretched and then i'm constipated (I struggle to go) then that will cause pain even when no more endo is present. But even when I tried to explain my other non pain related symptoms she just kept bringing it back to pain.

There has been many occasion where my pain has been So bad I considered to go to a&e but didn't because I didn't feel I was an emergency and went to the walk in instead and fatigue so bad I can't even move, I've never had it this bad! I'm not sure how that related to nerve/inflammation pain? But I could be wrong.

She then tells me they have to get in contact with my previous hospital to get all my details on previous surgeries. I would of thought they would of already had this? She said I need an MRI and that these things take time so they'll be seeing me in 2-3 months. And that was it, I was in here for 10 mins and then sent away.

Is this a normal first appointment to have as a new patient?

[Hidden]

My first appointment involved an internal ultrasound (which was carried out by a specialist radiographer, not the consultant) and then a talk with the specialist nurse. I didn't see the consultant at that stage (in fact did not meet the main consultant until the day of my surgery) though he did carry out both surgeries. I do remember being told from the start that I could still have pain even after a thorough excision of endo because the surgeries cause scarring and just took that as them being honest about the fact that they cannot guarantee you will be pain free, and you need to be prepared for that possibility when you consent to treatment.

Did they give you contact details for the specialist nurses? It might be worth contacting them and having a chat, or failing that, getting in touch with PALS if you are unhappy.

[Mewbookitty in reply to Hidden]

Nope I wasn't given any contact details or information, it was just such a strange appointment haha I wasn't sure if it was normal that I had no checks. I feel that maybe because they didn't have my notes on previous surgeries etc they can only go off what I can remember/ feel now so it isn't much for them to go off really. After my last surgery they didn't even give me a follow up appointment they discharged me the day of my surgery.

[Starry]

My first appointment was with my named consultant. I have never seen an endo nurse though. I had already had an ultrasound and in the session I had an internal manual exam to check for my nodule.

My consultant to was very focussed on pain and didn't seem to get my biggest problem is actually the fatigue and bladder issues which is stopping me live my life. 8 months on I am continuing to ram home that message, still not sure he fully gets it but he is starting to maybe.

I recommend you start a symptom diary and score your fatigue, pain and other symptoms to help communicate that and how it changes over time.

My prior hospital failed to share my notes when I subsequently requested them.

[Mewbookitty in reply to Starry]

My doctors rang me and said I'd been referred and they'd sent my notes but when I went yesterday she said they need to get into contact with the hospital about my operations etc.

I have a symptom diary luckily, I think I'll take it to my next appointment and actually get it out I think sometimes i'm not pushy enough :/

[Gilly1975]

Hi. That's exactly what happened to me. Was referred to BSGE after a lap with a general gynaecologist who told me I had Stage 1. I didn't see my named consultant but went through my history etc. I had to go for a MRI and then back to see them after 6 weeks. I then saw my named consultant who told me I have severe Stage 4 and now waiting for surgery.

[Mewbookitty in reply to Gilly1975]

Ahh thank god! Thanks for replying that's helped eased my mind a lot, I was confused by the whole thing. Who long after your lap did you have problems again if you don't mind me asking?

[Gilly1975 in reply to Mewbookitty]

Straight away. My previous surgeon was useless. I didn't know anything about BSGE centres and that endo with bowel involvement had to be treated there until I joined a fb support group. They were amazing. I got all my info together and got my gp to refer me. Thank god I did. The pain came back a million times worse after the first lap, she used ablation so I think she did more damage than good. That was last September. Had my MRI etc beginning of march and like I said just waiting for op now ☹️ Xx

[Mewbookitty in reply to Gilly1975]

Oh no i'm sorry to hear that😔 I hope you get relief this time! I am the same I had an op last year in June I had a different consultant actually do the op as my main one was crazy busy and he told me I had endo but didn't say where and that it was gone and I don't need a follow up, which I thought was weird because how do they know how I will heal? I haven't felt the same since, pain is 10 times worse and the tiredness is insane. What did your MRI show? Xxx

[Gilly1975 in reply to Mewbookitty]

My original lap showed I had it in the pouch of Douglas and that my rectum was stuck to vaginal wall. My MRI showed I still have the same but also endo on uterosacral ligaments and uterus is stuck to my colon. Your gp should be able to tell you where you have/had it. A report would have been sent from the hospital xx

[aimee_h59]

Hi, what's a BSGE centre? I am 3 months after my first laparoscopy, the tiredness is overwhelming wasn't this bad before, my consultant said it can take upto 4 months to feel better? What was the outcome of MRI scans?

[Gilly1975 in reply to aimee_h59]

Hi. A BSGE centre is for severe stage 3/4 endometriosis or endometriosis that has not responded to treatment. Endometriosis with bowel involvement must only be treated by a BSGE specialist. They are specialised in laparoscopic procedures. X

[Gilly1975 in reply to aimee_h59]

Sorry forgot to say about the MRI. Showed I'm Stage 4. Endo in pouch of Douglas, uterosacral ligaments and adhesions around bowel area. If you're still in pain then you must go back to your gp. Where did you have endo? X

[aimee_h59 in reply to Gilly1975]

My consultant said it was mild but scattered all over with a cyst on my ovary.

[Heloo85]

Your consultation was very informative, if you look through this site you will find many ladies who after surgery are not only not better but in some cases have been left worse off! I wasnt told this until the morning of my surgery and i guess my surgeon wasnt wrong! The fatigue is from stress/pain being a viscous cycle. It can be helped by exercise, diet and treating your pain! People on here think surgery is the only answer, if i could go back i probably wouldnt have had surgery!