What can I do?

[Macdunc29]

Hi all,

I know all here are suffering and I wish we could all be taken seriously.

I sent the email below to my surgeon's secretary today as I don't know what else to do. Does anyone have any suggestions. I can't keep on like this.

My hospital isn't even an endo centre and my surgeon just has 'a special interest in the case'.

Good morning,

I am writing today to ask if my case can be triaged again.

I was referred to Mr Ross after a trip to A & E resulted in me being admitted and the subsequent discovery of endometriosis, adenomyosis and kissing ovaries with bilateral endometriomas.

I have spoken with you before and you advised me that Mr Ross had triaged me and decided to put me on the new patients list. The paperwork had been done and sent to the new patient booking department. When i called them to ask about timescales for an appointment they told me it would be 6 months before i could even see Mr Ross for a consultation.

I am totally aware of the immense pressure that the NHS is under, pre-dating and then exacerbated by covid, and i am trying to add less, not more.

Since my admittance to hospital my health has been progressively been getting worse, to the point where i am struggling, or sometimes completely unable to complete normal daily tasks. At the moment it is one of those times.

I have been in constant excruciating pain since Friday despite my regiment of painkillers. I cannot walk properly, sit properly, drive properly, prepare food or even go to the toilet properly.

I am screaming out when i go round corners, brake, accelerate, put my foot down too hard when walking or just when i am getting a contraction.

There is immense pain when there is movement within my bowels, i am struggling to empty them and when i do it feels like something inside is going to explode. My stools are also dark (although not black) and very much like tar. I am also having to empty my bladder much more frequently, and when i do it is painful and i have to rock backwards and forwards to try to empty it.

I am unable to keep my home clean and care for my two sons (13 yrs with autism and 7yrs) properly.

I am a teacher of young people aged 14-20 with special needs and had to spend the whole day at work yesterday sat leaning to the side on the chair at my desk, with a hot water bottle, regularly having to breathe through pain and unable to get up and move to help any of them properly.

I am unable to get an appointment with my doctor, and there is not much they could do anyway. I don't want to end up blocking A&E up again.

I have attached a photograph to show the size of the bloating in my abdomen now. Before i could be dropped off at work yesterday i had to go to buy something to wear as i had nothing that i could get on and most waistbands, even elastic, hurt me. It is getting to the point where i may need to buy maternity clothes. I cannot tell you how embarrassing and completely degrading that would be.

I cannot continue like this. I am not living, i am just existing and my family are suffering because of it.

[AllthatGlitters]

Hi sorry you are going through all of this, it’s an absolute nightmare and so difficult to speak to a gynaecologist.Having read your story I think I could suggest you speak to your GP and they can expedite you to the gynaecologist based on your symptoms and how it is effecting your life. I have done this previously and my GP managed to get me up to an “urgent” list, they have more means to do so than us as prior to that I was phoning the gynaecology secretary who never answered the phone 😤🤬and I was leaving messages and getting no response. Just wasting me breath basically!!!!

From my experience it seems beneficial to have appointments with your doctor to tel them how bad things are and ask them to expedite you. All they can say is no, if they do they need a good reason.

Hope I have managed to help.

I have endometriosis and adenomyosis, it’s a bi@@h of an illness x

[Macdunc29 in reply to AllthatGlitters]

Alltat Glitters thankyou for your help and reply. The gynaecology deprtment, who i was placed under the care of during my admittance, said it was urgent due to how extensive it was and the fact that i had abdominal sepsis due to leakage and signs of internal bleeding. I was referred as an internal patient by my gynae consultant for surgery following assessment and discussion at the muti-disciplinary panel. It was the surgeon, whom i have never met, who decided to put me on the new patients list. I cant even talk to a secretary at my gp, let alone a doctor. But i will keep trying and trying. Thank you again x x

[Lindle]

We aren't allowed to discuss surgeons but kissing ovaries are a sign of severe endo/frozen pelvis. Are you being treated in a tertiary specialist endo centre as you must be.

[Macdunc29 in reply to Lindle]

Hi LindleNo i am not.

My surgeon is just interested and the hospital is not an approved centre

[Lindle in reply to Macdunc29]

Are you in Scotland?

[Macdunc29 in reply to Lindle]

No. Norfolk

[Lindle in reply to Macdunc29]

I asked because of the difficulties you are having and your name. Things are a bit more complicated in Scotland but in England it is a legal requirement that you are only treated in a specialist endo centre for severe endo which it sounds like you have. I'd have to see the scan or lap report (depending on how this was diagnosed) but it sounds clear that you are beyond the scope of general gynaecology. You have a centre in Norfolk - it is on page 4 on the list below - but you can choose any:

bsge.org.uk/centre/page/4/

You don't have to pay for a private consultation but it does often get you through the door. However, if the documents clearly show severe endo then your GP can refer you. This is the NHS treatment specification that must be followed. I'd have a good read and then go to your GP asking for a referral.

england.nhs.uk/commissionin...

Will pm you in case you need further guidance. x

[CryBaby91]

Hi Macdunc. I'm sorry you're being left like this, Reading that really resonated me as I also have 2 children with special needs. My eldest has autism and adhd, youngest they can't tell me but they think it's adhd and global development delay. So I fully empathise with feeling like your health impacts caring for them! I was trying to get across to my sons psychologist that I can't always have a concrete routine because of my health, but they didn't seem to get it. Was very exhausting explaining how some days I'm bed ridden so obviously then the routine is affected. It's hard enough dealing with our own health, never mind the kids on top! Sending huge cuddles.

I wish I had advice for you, because I honestly get how frustrated you are. All I can say is that you are doing the right thing pushing to be seen! I ended up paying for a private endo specialist to get my foot in the door with a BSGE one, it was worth spending the £200 to see him and I'm now on his NHS list for surgery. It hasn't made the process much faster surgery wise but did help seeing a surgeon who is a specialist, because I know when I do have my surgery it is being done by someone who knows what their doing. If you're in a position to do the same I recommend finding a proper specialist who is BSGE registered, just make sure they also have an NHS list xxx

[Macdunc29 in reply to CryBaby91]

Thank you for your support.I totally understand where you are coming from too x x

[Gardenist]

Hello it is worth going back yo your GP to look at pain medication. I did that while I am waiting for surgery and it was surprisingly helpful. They also wrote to the consultant again, I believe this is more effective than you contacting them directly. I also looked at going private as the wait on the NHS was 18 months. I have spent a lot of time changing my lifestyle over the past couple of years to live with the pain. It's not at all ideal but it was the only thing I could have control over while waiting. Diet changes, exercise, stress management and sleep training have all helped a lot. Not with the pain really but with stomach problems/ fatigue and general quality of life and mental wellness. Keep pushing but keep it respectful. That's the best way I've found to get stressed, overworked medical people to understand I'm not going away and I need help. Good luck.

[claudia_91 Moderator Endometriosis UK]

Hello, I'm sorry to hear you've been waiting for such a long time for your surgery. The endo community is hear to support you. If you'd like to speak to someone, Endometriosis UK runs a helpline which you can read about here: endometriosis-uk.org/helpline

Hoping that you receive a response from the hospital with an update soon. Take care.

[Macdunc29]

Update: I have followed all the advice given here and would like to thank you all very much.Unfortunately all my doctor can do is prescribe me morphine which i can't take as i could not drive my kids around or be taking when i am alone at home responsible for their care. They won't refer me to my local BSGE centre for specialist endo support as i will have to start again.

My hospital is not seeing internal patients at all still and and does a maximum of one half day clinic a month for new patients. There is no cancellation list. They will not consider me for any other forms of treatment as it is extensive so i need surgery.

The next time i end up passed out on the floor in puddles of urine and vomit in front of my 13 year old autistic son or on the floor in the toilets at work i shall get someone to take me to my local BSGE centre's A&E x

[Lindle in reply to Macdunc29]

You are very unlikely to get a referral to the endo centre via A and E even when there is a centre in the hospital as centres are in tertiary care and there is a specific referral procedure.

It sounds like the scan report confirms that you have severe endo and your GP can't refuse a referral. I put the link to the NHS England treatment spec above and they have to follow that. I should write a formal letter to the GP, copied to the practice manager, saying that you wish to be referred to an endo centre in tertiary care in accordance with the NHS Treatment spec for severe endo that is a Prescribed Specialised Service under the Health and Social Care Act, 2012. Say that if they refuse please can they explain the reasons on your medical record in the light of the scan findings and the specification saying that you will now be making a complaint to NHS England as the commissioner of the service for the practice's refusal to allow you to be treated according to the specification for severe endo.

[Macdunc29 in reply to Lindle]

I have just been told by my local support group that the wait list at the BSGE centre is over 2 yrs! Not sure what to do now

[Lindle in reply to Macdunc29]

I think you are on the endo group I run and have a thread on there so will follow through there.

[Macdunc29 in reply to Lindle]

Thank you

[seeker77]

Hi sorry to hear your situation. You are right to continue pushing and to be seen. "I am unable to keep my home clean and care for my two sons (13 yrs with autism and 7yrs) properly." I'm not sure if this helps but I had a similar issue and have an autistic son. I used this company essential-aba-childcare.com/ to find a short term experienced carer who helped at home why I got things done!