Disappointed

[KM1986]

Hi everyone. Just had my consultation with my gyne. She has agreed to do lap (I've yet to be diagnosed) but she went on a LOT about IBS - sigh. Like that would cause blood in my urine and painful sex? Anyway she tried her best to put me off the lap saying that they wouldn't do anything once they seen it. She said that this is just used to diagnose and then I will be sent to a specialist. I just can't believe that I will be on another waiting list. I had hoped that during the lap they would be able to do more than just diagnose it?

[juralindz]

Hi,

I am so sorry to hear that you are also going through this and the stupidly long waiting lists. From my experience they lasered the endo when they diagnosed me. However they have subsequently had to go back in, I had my 2nd op last week. I feel that the best thing to do is kick and scream and make a lot of noise otherwise they tend to ignore you and make you feel like you are either making up the pain or that it can not be as bad as you say it is.

I started having symptoms since I was 16 I am now 25 and I only had my first op when 24. Continually told I was too young for any of it, but I was persistent and it is still a battle but I am slowly getting there.

[KM1986]

It's weird because I assumed it was mainly child bearing age women who were affected by endo but she said I'm quite young to have it (27) and that it's probably IBS. That was when I asked her if IBS caused blood in urine etc. She went very quiet after that. I just don't see why it needs to be such a fight all the time xx

[Sofaargh in reply to KM1986]

You're not too young to have it! I'm 26 now and I was diagnosed when i was 21/2 (can't remember now haha)

Everyone knows the struggle of getting diagnosed. It took me 5 years, a massive cyst amongst all the other endo symptoms and we had to go private and the private gyne was the one who diagnosed me.

I know that isn't a viable option as it was 160 for one appointment BUT I went straight up the list as all private doctors have to do nhs work too so he took me onto his list.

Have you tried the Mirena coil to help with the bleeding? It worked wonders for me even though I had been bleeding for almost a year straight. It's like a miracle I couldn't recommend more.

Good luck, you will get there eventually, it's YOUR body and YOU know it best xx

[Hidden in reply to KM1986]

Bloomin nonsense!

Unfortunately girls and ladies of all ages have been diagnosed with Endo. I was told I had Endometriosis when I was 20, in 1991.

I wished Doctors would stop putting our symptoms on IBS (or appendicitis in my case). !

I wish you all the best for your laparoscopy and hope you don't have too long to wait.

Bast wishes,

Barbara x

[KM1986]

Thanks Sofaargh, I need to keep telling myself that. I think I may need to look to go private as the waiting lists seem to be horrendous. I've not tried the Mirena coil yet - still on Cilest pill. Will look into alternatives if/when diagnosed xxx

[hayls in reply to KM1986]

Hi

Just wanted to pass on some of my experience as most of my endo treatment has been done privately. Even private, a diagnostic lap is still diagnostic only, the surgeon may do a few bits but not much more than would be done during an Nhs diagnostic lap, mainly due to theatre times etc, even privately there's a theatre schedule and a diagnostic lap will only ever be allocated a set amount of time but also the surgical treatment you may need for endo once diagnosed could (if the endo is severe) be extensive and need other specialist surgeons to also be there, eg colorectal surgeon, so the surgeon is always going to want to discuss it with you first and its just not practical to do it in the same op. its standard that you have a diagnostic lap to map and locate the endo, with maybe a little bit of treatment, and then further surgery for operative treatment of the endo if necessary. BUT... with private the waiting lists are a lot shorter, I've never waited more than 2 weeks for surgery and you get to choose the consultant so you can make sure they are an actual endo specialist surgeon etc x

[KM1986]

Hi Barbara - I got rushed in hospital in September with "appendicitis" - turned out to be a huge cyst which had burst. And she still thinks its IBS. It would actually be laughable if it wasn't so serious xx

[Hidden in reply to KM1986]

Yes I was the same two weeks ago. I was told. It was appendicitis (had "appendicitis" so many times) but I said " it's not, my chocolate cyst has either ruptured or leaking"

Guess what? ...... I was right and I spent the next three nights in hospital having intravenous antibiotics and super strong pain relief !

The hospital was very good though, I just wished they would listen to us. After all we know our bodies better than anyone!

Take care.

Barbara x