Is it normal to wait 9 months for an emergency operation stage 4 Endrometriosis

[Wertxcv]

My 29 year old daughter was diagnosed stage 4 Endrometriosis with 2 ovarian cysts 16cm and 15cm and bowel and uterus connection in August 2021, she was told she was an emergency and would be operated within 8 weeks, despite frequent conversations with the secretary she did not get an appointment to speak with specialist until 15th Feb 2022 this was to be a telephone appointment but cancelled due to specialist own illness, she received another telephone date 15th March however 3 days ago my daughter had agonising pain , spasms and shooting pains in whole abdomen shooting up left side shoulder and down arm, she could not sit or bend she was admitted to hospital where they managed her pain.

Today the pain has eased but she has a high heart rate and can’t leave until this settles.

They have not scanned or done an ultrasound and say this was a flare up and she must wait now to speak to specialty at the appointment on the 15th March. we are all very worried about her situation can someone advise what we should do now

[Crazycatladyjones]

Omg this is awful to hear its shocking they can expect women to wait like that!!!! I would contact the hospital PALS as Ive heard people say to do this with complaints etc x good luck hipe3shebis sorted soon x

[Littlebug77]

I would chase this up it’s unacceptable. Please ask to speak to the head of hospital or head consultant who ever is in Charge of her care and ask her what’s taking so long.

Put your complaints, concerns and what they say in paper because if something happens to your daughter due to waiting for so long they will blame it on you.

As these things can hurst causing sepsis which is a huge ricks.

You have to advocate for your health in these situations - good luck

[My_adventures]

Hi there I am in a similar situation, I have two cysts which have formed kissing ovaries and a combined mass of 22cm.

I have been waiting since July, however was on zoladex until Jan.

I was taking into hospital in January one of my cysts has ruptured. But I was all over it, I told them I had stage 4 endo I was concerned one had burst and I could always feel the mass through my tummy and couldnt so they did scan me and my blood markers were crazy high. But I would have refused to leave without a scan I was so concerned.

You have to push at the moment. I have been on a merry go round at times. As I am across two hospital trusts with four hospitals involved.

I was told I was urgent by my local gynae team but then the BSGE centre had me in as routine until recently.

I wrote an email to the pals service at BSGE hospital to start to push things. It did help and I've used it twice. I really recommend using it.

Im still waiting for surgery however and been told early April, until it happens I am unsure to believe it.

I hope you get sorted, and sending you much love. The emotional strain is almost unbearable at times.

Take care

Abby

[Tillyfloss]

Hi. How is your daughter today? As a stage 4 sufferer and problems with cysts in the past I have a good idea of what your going through ( it was my mum that got me on the road to getting help so keep pushing). A couple of ideas, ask for her inflammatory markers to be checked, my cyst was a slow rupture but the doctor looking after me dismissed the higher markers, mine were high as a cyst had a small tear and was slowly leaking into my pelvic cavity, also if might be worth asking for a ca125 test, with two large cysts this is likely to be high , I suggest this as mine was sky high and I was having a ct scan within hours to check it out so might be a way to get a scan. Secondly with such pain request to see the pain team whilst in hospital, it’s not ideal but they did help me manage the pain whilst I waited for the surgery at the bsge centre. Also I found that most of the doctors dealing with me had very little knowledge of endometriosis so get as clues up as you can and ask lots of questions to show you have some knowledge. I really struggled to get taken seriously and only got the help when I did as we knew the clinical director of the hospital who knew me well and took my pain seriously. Keeping pushing for help for her I’m sure she’ll appreciate it. Xx

[Linley]

Good heavens that's terrible agree with crazycatladyjones get in touch with Pals. I don't know what area you come from but I understand that some NHS patients with urgent needs are being referred to private hospitals and the NHS pay up. Good luck🍀