Feeling stressed out and in the dark! - Endometriosis UK

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Feeling stressed out and in the dark!

Vickysponge357 profile image
8 Replies

Sorry guys, I just need a place to rant to people that understand!

I finally have my first gynaecology appointment on Saturday which hopefully will be really positive!

A few weeks back I saw a gastroenterologist who advised my gp that is there is still blood present in my urine to send me to urology, so another sample was given and a referral to urology went which I thought was brilliant given I’m so sure they will find endo on my bladder, I thought a urologist would spot it!

I received the letter to choose my clinic for urology and booked in, but 2 days later I received another letter saying that they were reviewing my referral and if I hadn’t heard anything by the 17th then to contact them directly, so I did!

The lovely lady on reception informed me the consultant had reviewed my notes and written back to the gp that they didn’t feel my issues were urological but that I needed referring to some where else in the local hospital but wouldn’t specified where, she just said that the drs really should have called me by now!

So straight on the phone to the drs I go, my gp that has been managing all of my issues is on holiday, they can see the letter and they will have the go call me back.

At this point I’m starting to get increasingly frustrated that no one is telling me what the urologist thinks!

This morning I had a phone call from my gp surgery telling me my dr has reviewed the letter now she is back and needs to see me in person to discuss it, they have given me the list of days that she is working and said I need to ring at 8 am on the morning of each day to see if they can get me in with her face to face as she has nothing bookable.

As you can imagine... my anxiety levels are rising! And the dr isn’t back in now until next Monday!

I feel like every one knows something about me before I get to know!!

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8 Replies
Thecraftyadder profile image
Thecraftyadder

That's so frustrating for you!Just an idea but I was wondering if you can get a copy of the letter either from the urologists or your gp surgery for your gynecologist so that they have the most up to date information when you see them. Of course they may wish to send it directly rather than via you but then at least you might get some idea what it says this week.

Did you survive the treatment for your bowel fissure? Has it helped at all?

I really hope you get somewhere on Saturday! X

Vickysponge357 profile image
Vickysponge357 in reply to Thecraftyadder

No luck getting info from the surgery, the nurse I saw today only increased my anxiety when she read my notes when I asked about who urology said I needed referring to so I’d have the info for tomorrow. then she put a note to my dr to tell her I was anxious and wanted the info for my upcoming ONCOLOGY referral. She then quickly changed herself to gynaecology.

So now I’m praying that was a random slip and not because she had just read oncology! Then she was questioning why my resting heart rate was 103 and asked if I was anxious!!!!

Thecraftyadder profile image
Thecraftyadder in reply to Vickysponge357

That's terrible! You should report that and explain the additional stress it's caused you when you next see the doctor! I really hope you get a good consultation tomorrow and the gynaecologist comes up with a good plan moving forward.

Vickysponge357 profile image
Vickysponge357 in reply to Thecraftyadder

I just had my appointment and I walked out the room and cried with relief!!

The dr listened to me and said yes this could be endometriosis! Plan is to have another ultrasound and then a lap! X

Thecraftyadder profile image
Thecraftyadder in reply to Vickysponge357

That's great! ( of course its not great to have endometriosis but you know what I mean, after all the battling to be listened to!) I remember the relief I felt last year when I saw a consultant who said 'this could well be endometriosis, I think you'd benefit from another laparoscopy'.

Have you any idea of the waiting times for your ultrasound and laparoscopy? X

Vickysponge357 profile image
Vickysponge357 in reply to Thecraftyadder

She said I should have the ultrasound in the next few weeks and then a follow up appointment after to discuss if they found anything or not and to then make the decision on the laparoscopy. I told her that I definitely want the laparoscopy as I want to know either way and she was fine with that :) x

Thecraftyadder profile image
Thecraftyadder in reply to Vickysponge357

The fact that you were listened to and you now have planned investigations will definitely be a comforting thing to hang on to during your rough days! ☺️

Vickysponge357 profile image
Vickysponge357

That is a good idea! I was worrying about not having the full info for my gynaecology. I am back at the DRs Friday so I will ask if I can have a copy of the letter!

I am still going with the fissure treatment! The GP gave me naproxen to help with the head ache but my bum still hurts and is still bleeding! I’ve got another 2 weeks of the treatment. Gastro left me with an open appointment so I can go back if it till persists after the cream is finished

X

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