Anyone under Oxford BSGE ?

[Jasmin24]

Hi ladiesJust a quick question. Anyone under Oxford BSGE?

How are you finding there services of recent?

Only asking, as my appointment has be cancelled twice!

They are face to face.

I wanted 5 months, then cancelled less than 24 hours notice was given.

Second one was booked, only to be cancelled again!

The advice I was given was just to go ro my GP if I have any problems.

But isn't that defecting the object?

As this has already been a battle.

Had a full hysterectomy and other endo, adeno, fobroids & other endo removal on other organs last year, only for the endo to return.

I am a bit worried, and feel I've been left in the lerch!

[Bethleah]

it’s mixed bag. I have phone consults. The last one was a mess, contradicting themselves and side stepping questions. The letter detailing the consult was inaccurate in several places. I’m not even sure if I’m still under them now as I’ve not had a follow up appointment booked for this year. This may be because after a mri last year they told me I no longer have Endo. It’s all gone. I said I still have symptoms but they were dismissive. When asked if all the Endo has gone does that mean my bowel, uterus and ovary that were all mangled by Endo are now all ok and unstuck. I was told the scan wasn’t clear.🤔🤦‍♀️

[Jasmin24 in reply to Bethleah]

I got a call this after to go for a scan.But I defo agree. I was given a 99% chance endo will not grow back, but it has. It was confirmed by an MRI done by urology consultant.

Surely MRI should be carried out after a year?

[Bethleah in reply to Jasmin24]

The standards in nhs have and are continuing to drop. They are more interested in costs than people’s health. Especially for women. If they can remove you from their service they will as they means someone else can take ur place and be moved off the waiting list. It’s politics

[Winter23345]

I was in the same boat as you, they kept palming it off onto my GP. Like you say, really defeats the point of having a specialist service if they keep dumping everything onto the GPs. I found their chronic pelvic pain team to be an absolute mess. Really unhelpful and will palm you off. They have quite a reputation in the Endo community for pushing Zoladex and other GnRH drugs more than are the centres. So just something to be aware of if that's not a route you want to go down.

I moved away last year, so I'm no longer under them but it doesn't sound like things have improved from the comments below.

[asread]

Hi, I have asked my GP to refer me the Oxford hospital and I phoned last week to check the status and they said that a consultant has left or is off for a year so it is impacting things. Could help explaining the changes for you.

[Jasmin24 in reply to asread]

Hi Yes he is leaving for a year, I saw him a couple of weeks ago. He has referred me to pelvic team, & hopefully to the pain team.

I do feel even having a specialist service, is still very much you have to ask to referred to other services, which I feel we shouldn't really, as they have seen the extensiveness of the condition.

Still an area which needs alot of work.

The other thing is they are very much against doing surgery to remove smaller endo, due to creating more adhesions amd scarring.

The question remains is what do we do next?

It's like a vicious circle, especially if you had a full hysterectomy & on hormone replacement. There are no avenues available, apart from requesting almost to start the process again.

The health system really need to look further into this, as if you are on hormones replacement and still have known specks, then it should be continued monitoring

[RoseStar]

I’m under the chronic pelvic pain clinic there and appointments frequently get cancelled. Also seen two of the endo consultants there privately - 1 diagnosed me with adenomyosis 4 years ago and I’ve consistently been told that adenomyosis has shown on multiple private and NHS scans at Oxford since. Also told in 2 NHS scans over the past year I have a suspected endometrioma. The other sent me for a scan in London recently and told me i don’t have adenomyosis and the cyst is a corpus luteum 🙃

[Jasmin24]

Thank you for the heads up. I've been referred to pelvic physio and waiting for pain team referral to come through.I do feel like what next, as I'm stuck between a hard place and the other thing, I don't know what it's called, my brain has given up on me!

They can't do further surgery incase they perforate the bowel, so I'm stuck with endo on the nodes, wild hormones, to prevent endo, pain meds for sciatic, lower back abdo pain, which I have to take bowel meds to soften tbe bowel, to prevent the flare ups!

It's a vicious cycle.

Why is there no treatment going forward?

It's like being left, with no plan.

I'm sure there are plenty of women who feel left in the lurch after treatment.

Apologies ladies for the moan. I just feel lost what to do. I'm sure their are so many of you, in a worst position then I am.