Head spinning a little, any advise?

[rosesinbloom]

I'm so sorry, but my head is reeling, I think it's because I'm on right now, so it's making me think about the endo even more as the pains been really bad, and I had a bad day yesterday with passing out.

Anyway, I've been referred to a gyno after a scan revealed I have an endo cyst. That was a month ago, I have another month to wait for my appointment.

I've been referred to a general clinic with a gyno, not at my hospital, my local hospital, [edited to comply with our code of conduct] has an endometriosis centre, but I am not there. I called them today and they said they are not specialists, but after testing I can be referred on.

I don't know if this is wasting my time and should I just ask my GP to be referred straight to the specialists? My head feels like it's spinning at the thought of it being a waste of time and my anxiety levels are quite high today.

I called endometriosisUK to see if I could chat to someone about it, but they have o phone access today.

I'm just in a tizzy really, hoping I'm not wasting time. Maybe because I have spoken to doctors about how badly I suffer with my periods and have been ignored for so many years, it's the time wasting there that's bothering me too.

[Lou7707]

Dear RoseinBloom

We have a volunteer on our helpline this evening between 7pm and 8.30pm if you would still like to talk to someone.

endometriosis-uk.org/helpline

Louise

Endometriosis UK

[rosesinbloom in reply to Lou7707]

Thank you for the response, I wouldn't be able to call at that time, but I will call at another time, possibly tomorrow or Monday. I think I need someone to talk to and run things through with.

[Hidden]

Unfortunately as I understand it you can't be referred to a bsge centre except in certain circumstances (so if you have confirmed severe disease, or your disease hasn't responded to treatment). This is to make sure that women with stage 4 can be seen at the centres as quickly as possible.

However, I know how unbearably hard it is to wait for treatment as I had stage 4 and from my initial referral to gynae in September 15 it was then another 18 months before I had surgery that would actually help. Going to general gynae is not a waste of time - if you have severe disease you need to go through this step in order to access more specialised treatment, and if it turns out that actually you have relatively mild disease, the general gynae may well be able to help you more quickly than the bsge centre would (as they might well refer you back to general gynae anyway).

In the meantime please push your GP for whatever pain relief you need to help you manage the next few months - the ladies on here have tried pretty much everything and may be able to suggest things you can discuss with your GP.

Hang in there. x.

[rosesinbloom in reply to Hidden]

Thanks so much for this, it's very much helped me settle down to hear it's the step I need to take.

It was a post in my first thread that said you need to go to a specialist, I looked at it today and realised I wasn't seeing a specialist, so worried that I was wasting time.

Sorry, I'm just like this, I get awful anxiety and my mind just spins like a wheel and doesn't stop!

[Hidden in reply to Hidden]

I asked my gp to be referred to a bsge centre and was approved by just asking if I could have a second opinion, as far as I was aware there aren't any requirements so long as the gynaeo or GP thinks you have endo? x

[Hidden in reply to Hidden]

No, the centres are just for women with confirmed or suspected severe disease. A GP can refer if you fit the above criteria - if you're referred and you don't have confirmed or suspected you can go to that hospital but you will be seen by the general gynae team and not the endo team

uclh.nhs.uk/OurServices/Ser...

[rosesinbloom in reply to Hidden]

What about if it's already been confirmed by a scan and that I have a cyst?

Also, as much as I have read, a cyst means it is more severe. So would that not mean I could be referred?

[Hidden in reply to rosesinbloom]

I am not a doctor and that's obviously not for me to say. The centres were specifically set up to treat a certain type of endo, rectovaginal endo, which grows between the back of the uterus/vagina and the bowel and is incredibly difficult to operate on. If you are concerned that your disease might be severe then you either see your GP and talk to them about referral to a bsge centre or you wait to see the consultant in sept and talk to them about it. The other alternative is to pay for a private appointment with one of the consultants from the bsge centre and see what they think. But sadly there are no quick solutions here. Whatever you do, you are going to have to wait for treatment and it is going to be difficult. Seeing the gynae you have an appointment with in a month may at least get you access to some hormone treatments which can reduce pain in the short term.

[rosesinbloom in reply to Hidden]

I thought anyone with endometriosis could access care at an endometriosis centre/endo specialist within the NHS.

[Hidden in reply to rosesinbloom]

No, the bsge centres deal with severe disease where women have bladder/bowel involvement. If you look at the link I posted it explains that.

[rosesinbloom in reply to Hidden]

Yes, your link says that, but I have read differently from quite a few different sources, perhaps that is UCLH's policy, but I've read of many people seeing an endo specialist who do not have bowl or bladder involvement.

[Hidden in reply to rosesinbloom]

england.nhs.uk/commissionin...

This is the NHS contract for severe endo which covers all bsge centres and explains what they do and who can be referred, and it is not just anyone with a diagnosis of endo. As it clearly says, they are there to manage severe and complex cases. The centres are dealing with the very worst cases, where women are at risk of kidney failure and bowel resection. If you are worried that might be you then either discuss it with your GP or with the consultant you have an appointment with. Maybe contact the specialist nurses at your nearest bsge centre and ask for their advice - they will tell you the best plan of action. I know waiting to access treatment is unbearable. I have been there. But sadly unless you can afford private treatment, there's a process we have to go through.

[Heloo85 in reply to rosesinbloom]

Joreilly is correct. Theres a handful of BSGE centres whereas a million gyneas! If every woman got to go to a BSGE centre, the list would be million years long. 10% of women have endo. Only 1% of those have severe endo. Those 1% need weeding out then passed on to specialists. The rest can be treated via general gynea with surgery or hormonal treatment!

[rosesinbloom in reply to Heloo85]

They should create more centres, every woman with endo should be able to access experts in it.

I presume I will get referred onto them, my symptoms are extreme and my local hospital is a centre.

[Heloo85 in reply to rosesinbloom]

The problem with that is cost. For 1. Secondly is that there will never be enough Drs enough interested or able to become specialists, and then again massively huge waiting lists. Im not saying whether or not you have severe endo, whether or not you should or shouldnt see a specialist, im agreeing with the other girl! Not to mention those endo specialists dont just deal with endo, but all severe gynae diseases including cancer!

[rosesinbloom in reply to Heloo85]

I was just going on what was said in my first thread, that you should go to a specialist, and another poster here has said it too, that they got referred.

To me, there should be a lot more, and more access to one. Yes the more severe needs more specialised treatment, however even more minor cases deserve great treatment/surgery, if it isn't severe a non specialist could do serious damage.

Isn't that true of any specialist though? You may see an ortho specialist who also treats patients with cancer, it doesn't mean others do not deserve to also see them.

I still expect I will be referred to the endo centre, and will push to be if I can.

[Heloo85 in reply to rosesinbloom]

Surgery is not actually advocated with people with mild disease. They only treat because theyre already in there! I had to wait 12 months for major surgery to treat stage 4 deep infiltrating endometriosis. So no, women with mild disease do not deserve the right to be with a specialist. I had a bowel obstruction for so long that my bowel function will now never be normal! Even after a bowel resection! Like i said, 10% of all women on Earth have endometriosis. Only 1% of that 10% have severe disease. Severe disease can become deadly via killing kidneys, bowel obstruction, Peritonitis, Sepsis and permanent damage! Yes its ridiculous that they cant tell severe disease for mild (symptoms mean nothing) but we all have to go through the system!

[rosesinbloom in reply to Heloo85]

I'm sorry you've had such trouble, but I disagree, I believe every person with the disease should be able to see a specialist, because with poor treatment it can progress to severe and then further surgery will be needed.

As I said, just because they treat cancer does not mean others do not get to see an ortho surgeon. There should be more resources so everyone can have the best quality of treatment. Everyone who has it should be able to see someone who specialises in it, I'm afraid I won't change my mind on that. Everyone does deserve a specialist in the disease.

[Hidden in reply to rosesinbloom]

not all women need that level of surgery though. My sil had some laser treatment with general gynae 9 years ago and has been fine since. She did not need that level of treatment. I had 4 lesions all over 2 cm and had to have 3 surgeries in 14 months including bowel and bladder surgery and a hysterectomy. The wait was long enough without being held up by women with mild disease being seen by the same surgeon and in order for the specialist surgeons to maintain their skill level they need to operate on severe disease as often as possible. There's also an argument for giving women the bare minimum of surgery needed to manage pain. Wouldn't wish my disease or surgery on anyone.

I know its frustrating having to be assessed by general gynae first but there are good reasons for it.