Endometriosis UK
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Waiting times and diagnosis

Hello everyone,

Having just been to see consultants at a specialist centre, i have been given a diagnosis and surgical plan of everything that needs to happen to me; both tubes to be removed as fully blocked, polycystic ovaries which may need to be removed and adhesion removal from uterus and bowl and then anywhere else it may have crept into.

After meeting with both surgeons who will be working on me, i was told a waiting time of 10-12 weeks I was however going to be added to the cancellation list just incase and to help speed it up as I am in constant pelvic pain.

I was advised to call admissions weekly to check for cancellations etc and keep in front of them. Calling today, i was told i would not be seen for surgery until May 2017, as everything they are looking to action on me is 'routine'. Also asked to clarify what makes me 'more sick than anyone else that calls' and 'can you not manage your pain effectively?' - great compassion there!

Has anyone else experienced a lack of communication from surgeon to admissions, should i be worried? I am on the brink of paying for this to be actioned privately as waiting 6 months after a 2 year battle is something i cannot face.

Any experience or advice would be appreciated.

x

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Hi Hannah, did your Gynae Surgeon not suggest temporary non-surgical management using GnRH-a (e.g. Prostap inkections)? If not, I would be wanting to know why not. What age are you?

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27, this has not been discussed with me. They seemed keen to operate asap as i had a diagnostic lap in January and they wanted to focus on removal. Is this something i have to speak with GP about?

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Hi Hannah you could try emailing consultants secretary and ask if they can clarify the situation. Unfortunately it may well be out of their hands.

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My experience with admissions has been that they are generally useless - they're call centre staff and don't always know what's going on. They also deal with endless calls on a daily basis from people saying anything they can think of to try and get seen quicker. Can't be an easy job.

GNRH injections are something the consultant would have to sort for you - a GP can't prescribe these. I'm really surprised you've not been given something to try and help you while you wait for surgery - I'm having my first surgery at a bsge centre next week, which will have been a 16 week wait from first seeing the consultant, and they gave me cerazette to try and help me manage my pain while I'm waiting. I've also had a mirena, the injections and a course of norethisterone this year.

Best thing to do is ring the consultant's secretary (the hosp switchboard should be able to put you through) or possibly contact PALS at the hospital and let them know the problems that you are having.

Hope you get sorted soon. x.

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Hi there which bsge clinic are you at?

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If it is a BSGE center you went to, they should have a nurse specialist who can assist you in pushing your surgery date forward. Your GP can cenrtainly help by managing your symptoms, and as above, you should've been managed with a hormonal treatment for the meantime. They should be following a treatment pathway if they've diagnosed you with endometriosis.

Keep calling the secretary (regardless of sympathy issues with whoever answers the phone) and call admissions as well. That's what I did and managed to get my op done from consultation to surgery day in a span of 4 months X

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Yes

Waiting sucks !

It has been years and I'm past the endo part of life .

But all the doctors I saw then and still now don't get that if you are the one waiting for a procedure or results time goes forever .

I'm waiting now for results and time just creeps by so slow .

I finally told them

Hey a day to you is a day

To me it's a week long

And every moment takes an hour to get they .

Don't think they get it unless they have once been very sick .

A dr wrote a book a long time ago. In it he was talking about his son and all the tests and all the waiting and how did excruciating it is to do nothing but wait .

It seems to have gotten worse as I read here how women are waiting so long I don't know if changing docs would help?

Probably not because you start all over again.

There have been a few times when I looked back I had actually been in a better place for various reasons and could actually be glad it happened that way.

You need to go to office

Stand up on table

Scream

Shout

Cry

Ok well maybe not that much but still you need to look doctors in the eye and tell them what it feels like to really wait .

Have they or family been made to wait how did it feel ?

My pet peeve is waiting for them to get dx or results to you instead of leaving them in a pile .

I have voiced this to both testers and doctors.

So I hope you don't have to wait to long and something will come up .

It's a horrible disease and you just never know the whole outcome till it's done .

Do your best to get thru the pain

Do things for you

Pamper yourself

Be kind to yourself

I'm sorry you have to go through this .

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Thank you for your response. It really is excrutiating waiting for a surgery date.

I have spoken again to the surgeons secretary today and she is still waiting for him to confirm if I will be in theatre within 10 weeks, or the 6 months as per the admissions teams discussion.

How can they leave a woman with two blocked tubes that need to be removed, polycystic ovaries that may be removed and endo in her bowel for 6 months?

I guess we do not know how strong we are, but I feel stretched now and I am not sure how much longer I can go on x

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Then it's time you make a hard choice

Think about going to another dr that has more compassion

One trick I have used is " ok dr could you put in writing that you feel I'll be safe waiting ?"

Or other things you are waiting for

Course they won't do it

Ask why not ?

But I would find another dr

Yes you may wait still

But you need treatment right now to relieve the pain while you wait

The only thing I feel works is

Stop those cycles safest way you can

Birth control other methods

Stop those cycles so you have some time to heal and maybe keep it from getting worse

I know this is not something all believe

That's ok

For me the most help I got was 12 straight months of the pill no cycles

No getting off three months

No need

Stop them

It could help

I doubt it will hurt

Plus I wonder if opening up a woman in the middle of inflammation and infection is smart at all .

If they stop those cycles it may just heal up enough to make surgery easier

Look I'm no dr

But I will speak out about things I feel passionate about .

We may not be real close to answers but we are getting closer

And doctors will not get us there

Other woman sharing

Researching

More women in the field in medicine behind the scenes

In the labs testing

Good luck

But all that pain is crap and you don't deserve it

Find a way if possible to stop it for now

Best of luck

I feel so bad for young women going thru this .

If I could help in any way I will

Shelly

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