Appointment at 1.30pm today - feeling nervous

[lifewithendo]

So I had my last lap in December and I was told that they had found endo and removed it but his words to me after the lap was 'I cant understand why you tell me you've had so much pain when it was only minimal' so I went away with this and didn't really know how to feel, I had no follow up appointment either. Anyhow not long after my lap the pain begun again at first I thought it was just the recovery stages but no I was crippled over in pain within no time at all. I know that endo is not curable but surely I was hoping for a little more relief however all my laps I have had done have been ablation surgeries. I went back to my gp who prescribed me cocodamol which do nothing for me and then i went back and they prescribed naproxen also yet this didn't do much either but I don't think I gave it enough time and stopped taking them as I was worried as I was told that you should be prescribed another form of medication to take along side it to prevent stomach ulcers and I wasn't. So then I went back to my GP and he said right I'm going to refer you back to Gynae and the day later I received (never ever had such a quick referral!!) and guess what it was with the same surgeon who did my lap now i know i shouldn't complain but I'm so worried he is just going to fob be off, i honestly don't even know what i am going to say today I did go back to my GP after i received the letter and asked if he could refer me to the BSGE at Castle Hill but he wasn't even aware of it and said he may not be able to I said you can but he took the details and said he will write to them but advised me to still take the appointment today and if not heard anything as of yet which I haven't mention it to them today, which i dont know if i should do that. I feel as though i would be insulting him :/

Sorry for the long winded post but thank you if you have got to the end of it. I'm just so worried that i am going to get fobbed of or what to even do. Do i suggest he can refer me to BSGE today, do I need another surgery perhaps excision, are they missing something, do I not have surgery and have meds which I have never been on full time ones.

xx

[Hidden]

How have they come to a conclusion of your diagnosis? Have they done MRI/CT/ultrasound to see if it is deep endometriosis in the tissues. I would print the BSGE guidelines and take them with you - I wish I had done this as I didn't have any scans prior to treatment and ended up having a hysterectomy April this year only to find I didn't have endometriosis in my womb.

It maybe worth writing some questions you want to ask and take them with you as well. Also get them to write down where you have endometriosis and what they had one to treat it so you can take it to a Bsge centre when your referral has gone through xx

[lifewithendo in reply to Hidden]

Thank you for you reply

I got diagnosis from a lap I have done when I was 19 (now 27) they told me they found a small amount of endo the size of a 50pence piece, they pain came back pretty quick and i was having my second lap done a year or so later this time around they removed it again and told me they had released my left ovary with not much explanation of what that meant but i assumed it meant the endo had attacked my ovary after that lap i didnt have a real lot of pain until Dec 14 when it started back up worse, i came off my pill in Jan 15 which i had been on since i was 15 and i think that it did mask a lot of my endo.

Ive had an ultrasound done before but never had an MRI/CT i didn't know that they could diagnosis that way and thought could only see on an ultrasound if its severe. Ah can i just get them of their website then? So sorry to hear that

yeah I think I may do that and yes i will do that too xx

[Hidden in reply to lifewithendo]

Hi I found out about bsge guidelines after my hysterectomy when I joined on here. Yeah you can get the guidelines off their website, you can also get guidelines for gynae off the RCN website. Wish I knew all the protocols before I agreed to the hysterectomy, but if I can help advise other people so they don't go through the same as me

Let me know how you get on xx

[lifewithendo in reply to Hidden]

I've been on the bsge website before but Ive never known about the guidelines well on any site tbh so thank you so much for this info. I'm currently at work but just had a quick look at them

so sorry and again thank you so much for your help its much appreciated.

I will do, the anxiety is starting to eat me up now not long!

xx

[dugadoo in reply to Hidden]

Claire - I am listed for a hysterectomy and reading this wonder if it did not have its intended outcome??

[KSvedenmacher]

The amount of pain you feel and the amount of endometriosis you have do not correlate. One can have very widespread endometriosis and suffer with very little pain or one can have very little endometriosis which is strategically placed to give you the maximum amount of pain. So for your surgeon to say he doesn't understand why you are in so much pain when you only had a little bit of endo is rubbish. He clearly doesn't understand endo. I just had a hysterectomy because of endo - horrendous pain and very heavy, long, clotty periods - and the consultant said he found very little endo but I was unfortunate in that it was on the places which cause the most pain. I was treated at a BSGE so the consultant definitely knows what he is talking about.

Your GP should be able to refer you to a BSGE, mine did. You may have to wait a bit longer for the appointment, but it will be worth it.

[lifewithendo]

update from my appointment, in pain and tears after an excruciating internal examination and back at work

So he still doesn't think that the amount of endo he found or the amount that has been found on previous laps on my notes should be causing me as much pain as it is doing. He advised me that it was very minimalist amounts found and is saying that it could be just general ovulation :/ however he is not happy that i am in so much pain daily. So he wants to put my ovaries on a rest for 3 months by having hormonal treatment to see if the pain is still there or not as he thinks that it could be IBS and that its actually my bowels that are giving me these pains. Now I have been told that i had ibs before i got diagnosed with endo and i do suffer with my bowels but i also do my bladder and when i mentioned this today he kind of ignored my bladder situation.

Not really sure what to think of this hormonal treatment I'm scared and do want to become a mum. He is aware of this and said all my tubes are fully open (had a dye test on last op) and my ovaries are good however he wants to do this try and rule things out and see if it isn't the endo causing me pain.

I have always thought that too i have heard so many stories that it doesn't matter if you have a small amount or a large amount of endo as the pains can still be as bad if it is only small :/

I am asking to see my GP to just discuss this hormonal treatment before starting it to see that its all safe with regards to wanting a family which i believe it is but would like a little piece of mind and I'm thinking when i do to still ask about the referral to the bsge center.

thank you for your replies means a lot

xx

[Hidden in reply to lifewithendo]

Hiya I would definitely ask to be seen at a BSGE centre, my consultant was very similar to yours when it comes to dismissing my bladder issues which have definitely got worse over time. I have an appointment coming up with urology next month so I will see what happens there.

Xxx

[lifewithendo in reply to Hidden]

Yes i think i will i just hope my GP doesn't fob me off as he didn't seem so reassuring last time although he did agree to write to them. Ah really sorry to hear that, its so rubbish when they do things like that isnt it I hope all goes well at your appointment. Can i ask how you got to get that appointment was it through bsge xx

[Hidden]

Hi, put your foot down with gp you are entitled to be seen by a BSGE consultant. You may have to wait a little longer but it should be worth the wait.

I got the referral to urology as I am in alot more pain since the hysterectomy so I've now been referred to urology due to fluid retention and kidney pain

Also my bloods have come back abnormal and showing problems with my kidneys and liver. I've had this pain over 4years and I've got worse with every op I've had. I'm just hoping I get some answers as to what is going on. Xx

[lifewithendo in reply to Hidden]

Hi, yes I will do. I'm still thinking to do the hormonal treatment in the meantime to see but not sure as I do what a family but thinking may do it just to see if could be bowel related 😕

Ah I'm so sorry to hear and that I really hope you get some answers. I'll keep my fingers crossed for you 😘 thank you again for your replies. It's so nice to talk to other ladies who understands what were going through xx