Scared over more surgery

[Lil_Lady]

I've not posted in a good while.

I had my first lot in Feb 2016 and I was diagnosed with endo. I had adhesions cut off all the way down my bowel and my endo was lasered but I only got a few months relief.

I tried prostap injections which were good whilst on them and within a couple of months after stopping my endo kicked off again.

Now I feel like I'm living in a nightmare. Back to being in terrible pain all the time, shattered, constantly needing to pass water etc.

So it is time for more surgery but it will be more invasive as my endo will be cut away instead of lasered but if they can't cut it then they will laser these bits. Also there is a risk my bowel might actually be stuck now.

I feel very alone as nobody truely understands how I'm feeling. I'm scared what the outcome could be as well.

[Timothy31]

Are you under a specialist? I say this because I was at a local general hospital who just gave me surgery after surgery which has ended up doing more harm than good.

I'm now at a specialist and they haven't mentioned surgery any time soon and my pain is near to nothing!

I've been on triptorelin injections which got my endometriosis down proven through pain and MRI results and since then I've been on desogestrel. I'm currently on the double dose but it's doing the job pain wise and going back for an ultrasound to make sure it is at bay.

Please please please, do not make the same mistake I did and go through surgery as you feel like its your only option. I know you probably believe your doctor knows what they are doing but go and get a 2nd opinion! I'd highly recommend the specialist I currently see (let me know if you want to know who they are).

You're not alone, I know how it feels, It's bloody awful!

I really hope you feel better soon,

Timothy x

[Lil_Lady in reply to Timothy31]

Hey Timothy,

Thank you for your reply.

I've exhausted my options as I've got another medical condition which restricts me trying certain things.

My consultant is very good, he knows his stuff when it comes to endo. As I've recently left the health profession he has always been completely straight with me as he knows I understand everything that is said.

There is a centre in Edinburgh especially for endo and I can have the option to go there after surgery. Sadly there is not one of these centres in Glasgow. My consultant has tried to campaign for this to be here for years. I've said I will write to the board after my surgery and see if they will stand up and take notice.

You say to people you are in so much pain but because you can't physically see it people just don't get it. That's what I find tough, I no one who truest understands.

Raina x

[Timothy31 in reply to Lil_Lady]

It's great to know you're in the right care, didn't want you to get screwed over like I did.

I really hope theverything surgery works for you, there's nothing worse than living each day in pain and not knowing when it's going to end.

Wish you a healthy and happy life without this pain,

Timothy x

[LianaP]

hi

i know u are scared. I was too. please know u are not alone in this. i'm so sorry u are having pain again. i had my surgery (excision) aug 2016 with a specialist. he took a lesion the size of a golf ball out. he had to cut my vagina and rectum. i am back on the pill which alleviates the pain during mestruaton to a level 2 (vs a 9 pre surgery).

it's a big improvement and maybe because they excised instead of laser/cut.. so hopefully u can find some ease w that.

please keep us posted! wishing u a successful lap and speedy recovery.

[Lil_Lady in reply to LianaP]

Thank you and will do x