No surgery- who is advocating for women?

[LA_LA]

This is my first post. I have recently been diagnosed with endometriosis and left with little support. I’ve been in extreme pain to the point of fainting and due to Covid-19 have had to pay for a private scan which identitied a cyst on my ovary. I’ve been referred to the hospital and have had an awful experience, which I won’t go into now. I was told by letter that no surgery is happening. I’m concerned by the advice on the endometriosis uk website endometriosis-uk.org/sites/... It seems to suggest that we should just accept that surgery isn’t happening and there is nothing that can be done. I’ve found this message extremely upsetting. Are there any other groups set up that advocate more for patients to get our voices heard? I appreciate that this is a difficult time for health services, but Covid is being used an excuse for a service that was already extremely difficult to access and lacking in support and consistency.

[Moon_maiden]

Hi

It is awful that so much was cancelled, they didn’t know what to expect. I completely understand how you feel as I’m still waiting for an MDT meeting to take place because of covid. I saw a pain consultant privately this week because things weren’t being sorted.

Emergency ops would still take place, unfortunately endo isn’t life threatening, it feels like it, and I’ve not been able to do anything because of it. In the same breath I try to understand the circumstances.

Surgeries are starting to take place, have you spoken to gynae appointments for any updates?

There is a general lack of support for many conditions from the health service, non more so than endo I’ve discovered.

What experience did you have at the hospital? Most have had something go wrong

[LA_LA in reply to Moon_maiden]

I had an initial call with the endo nurse, who said she’d call me, but didn’t. She then sent a letter to my GP (one who retired 2 years ago and I’ve never seen) that was riddled with inaccuracies and didn’t reflect our conversation and advised I had tests that I’ve already had and described in my appointment. The letter just said no surgery taking place. Endo is impacting my fertility, so it’s obviously extremely emotive and I feel completely let down. If private appointments and surgery are taking place, I don’t accept that the NHS can’t get back on track. It’s just that no one wants to take accountability. This disease massively impacts our quality of life and affects 10% of women. If this affected men, you can guarantee that more would be done. I’m struggling to engage with the activity of Endometriosis UK as it’s not clear what I can do to push the agenda and raise this with the right people. I wonder if there are any other groups?

[Moon_maiden in reply to LA_LA]

Your GP surgery website will have an online form to then get advice from a GP. I would fill that in with as much of the info you’ve described on the forum to then be reviewed. This is in black and white and you’ll get an email copy as well. They can contact the gynaecologist directly for advice or the endo nurse. Have you tried calling the endo nurse even though she was supposed to call ? Things have only just started to change so should be more info available. Many surgeries with NHS are being given in private hospitals to play catch up.

Let us know how you get on 🙂

[Linley]

I feel your pain it is making you angry and I do understand. I have looked at the wider picture. Covid is not an excuse it is a reason why all that is happening, especially if you know someone who has died from it. Granted the NHS has been struggling for years as they have got over 65 million people to serve and there is alot of misuse. The good news is that the NHS has done a deal with the private sector and ops are taking place. Help for you-

1. Moon_maiden is an Endo warrior she makes some good points.

2. Contact the Patients association re the inaccuracies with your care

3. Always keep a record of conversations with medics

4. Ask for copies of your medical notes

5. You must push for answers

5. Please give Endo UK another chance, they were a support to me

Wish you good luck for the future🍀

[AllthatGlitters]

Hi

Sorry to hear about your diagnosis.

Even before Covid the area I live in is a complete nightmare to even get to see a consultant, it’s a 1 year wait then you have to wait for surgery. It’s not good if you are in constant pain every day.

If you can get your own GP to understand how you feel and they can often write to the consultant on your behalf and let them know how much you are suffering.

Like you I have paid for a laparoscopy private at £5,500 and a year down the line I paid for a private consultation for £200.

Had I booked I for private surgery I would have had it within 2 weeks. I can’t afford to keep paying privately for surgery.

The NHS consultants often work private too so I think that’s why the NHS suffers.

I totally get where you are coming from, I am also very frustrated (not because of the covid 19 but before all of this happened) x

[AngelMumma1711]

I was due to have surgery on 30th March and it was cancelled with a week's notice. Since then it's been practically impossible to get any help or treatment whatsoever. Don't get me wrong, I don't blame the NHS or their staff at all, we have been experiencing an unprecedented pandemic situation and they've worked extremely hard - in my opinion the blame lays squarely at the feet of a government that has stripped nhs funding back to the bare bones for the past 10 years. Anyway, blame game aside, it still leaves women like us stuck in a horrendous situation. I have written to my MP, who has in turn written to the hospital; I've also made a formal complaint to the hospital too. You can do this through the hospital Patient Advisory Liaison Service (PALS). But in utter desperation, and by this stage confined to bed more often than not, I have booked privately to have a hysterectomy, which is happening in 3 weeks' time. I fully intend to take legal action for medical negligence if necessary to try to recoup my costs. It may sound awful to sue the NHS, but if the government is forced to fight legal battles and pay out claims my hope is that they will see their systematic under funding of the NHS for the false economy it is!