Pi***d off: Hi ladies, am really upset... - Endometriosis UK

Endometriosis UK

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Pi***d off

NessyFrewer73 profile image
21 Replies

Hi ladies, am really upset today. Got my appointment to see the endo specialist and its over 4 months away on October 26th. Can't believe I've got to wait that long when I'm struggling to get through a day with pain. Is that a fair time to wait to see a specialist? Any advice would be much appreciated x x

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NessyFrewer73 profile image
NessyFrewer73
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21 Replies
Kayleigh1985 profile image
Kayleigh1985

HI

It isn't a fair time to wait as you are in lots of pain but unfortunately this seems to be what happens. It can take a while to get in but your GP should be working on managing your pain for you while you wait. Do you mind me asking what you are being given for pain ??? Xxx

NessyFrewer73 profile image
NessyFrewer73 in reply to Kayleigh1985

Hi Kayleigh,

I am taking co codamol. I can't take ibuprofen because I have a hiatus hernia and am allergic to big doses of morphine. Am going to go back to gp and see if there is any stronger painkillers I can take. I just couldn't believe it when it said October!! X x

Kayleigh1985 profile image
Kayleigh1985 in reply to NessyFrewer73

I know it's such a long wait ! It shouldn't be like that ! I take tramadol with the co codamol and this often works well ? Maybe this could be an option ?? There should be other options as well for you they can't leave you in pain xxx

NessyFrewer73 profile image
NessyFrewer73 in reply to Kayleigh1985

Will see what the gp says about tramadol. I know it's ridiculous. Am pleased I've got an appointment to see a specialist, but so frustrated it's so far away. Thank you for listening x x

moxyfilms profile image
moxyfilms in reply to NessyFrewer73

I was on tramadol and Lyrica for a long period of time and it helped. The only thing I can say is be gentle with yourself when trying to stop taking them, because you may suffer some withdrawl after taking them so long while you wait. It's not pleasant. xx

NessyFrewer73 profile image
NessyFrewer73 in reply to moxyfilms

Thanks hun,

Will see what gp says about them x x

electricjaws profile image
electricjaws in reply to NessyFrewer73

By the way can't you try fentanyl patches?? I can't have them unfortunately myself as they make me go crazy with the itching, but maybe they could help you

( I can have it only on a pump when I am having surgery) as I am okay with intreveniously

So maybe you could try the patches??

Oh dear,that is most unfair!....Being in pain and all your Gp could have booked you an urgent appointment.

I got Chelsea and Westminster hospital for a 4weeks wait and was described Diclofenac for pain in the meantime(Please ask your go about this drug as its strong and has been effective for me).

Hang in there Nessyfrewer73 yould be fine.xxx.

NessyFrewer73 profile image
NessyFrewer73 in reply to

Hi Atutu,

I thought 4 months is an excessive wait when I'm in so much pain everyday. It was my gynae at the hospital that contacted the endo specialist, and was really shocked when I saw how long they expect me to wait. Will see what my gp says about diclofenic in the meantime. Thank you for your advice x x

blondielocks profile image
blondielocks

Sadly yes this is normal. I was in desperate pain.....so I ended up paying to see the specialist private the following morning, (£150) and then they prescribed my treatment and surgery back on the nhs track. I ended up having my surgery sooner than my initial appointment was!!! I couldn't bear the pain and although the fee may seem a lot to some it was really worth it to me in terms of the amount of time I was taking off work etc just made sense. Also meant I was able to pick the specialist I knew was best for endometriosis. Not just get stuck with any gynae surgeon on referral.

NessyFrewer73 profile image
NessyFrewer73 in reply to blondielocks

Sorry to hear that hun. Terrible that you had to pay to get the first initial appointment x x. Will keep that in mind though because there is no chance I am waiting that long to see him. X x

Its starting to look like you need to go private... Miss Amanda Tozer is a specialist at the London women clinic talked me through endometriosis and treatment options however consultation is £180 but immediate!(Money rules sadly).

Merging private and nhs is great for a second opinion.

NessyFrewer73 profile image
NessyFrewer73 in reply to

Thanks hun will check it out. It's very sad isn't it that they earn money from people's suffering but I suppose that's the world we live in x x

shazzzy70 profile image
shazzzy70

Hi Nessy

I too paid for my 1st consultation too with my endo specialist i rung the hospital i am with and found out what consultant i was under and i then rung spires within 6 day i was seen by him.I am not awaiting a total hysterectomy which could take upto 8 months before i have it..I am now back on the nhs waiting list for this and also i am on propstap injection alongside with livial (hrt tablets).I have just had my 2nd injection on the 1st June but still in loads of pain as i have endo and adenemyotis too..I know we shouldn't have to pay but it will cut your waiting time down if you need an op..Well i hope you get some good painkillers from your GP on Monday take care Sharon xxx

NessyFrewer73 profile image
NessyFrewer73 in reply to shazzzy70

Hi Sharon,

Seems like I will need to pay for the first consultation which is going to be difficult as I'm registered disabled because of a back injury. It's terrible that we have to suffer so much and then feel we have to pay because of how long we have to wait. I'm pleased to hear your problems are at last getting sorted. I was offered prostate to see if it made my symptoms better, then if it worked, a hysterectomy would be the main option. Will see what the doctor says about medication. Thank you for your advice 😀 x x

shazzzy70 profile image
shazzzy70 in reply to NessyFrewer73

Aw your welcome hun sorry to hear about your back..Us women go through too much grrr..I hope you get some better pain relieve on Monday..Take care and plenty of rest xxx

NessyFrewer73 profile image
NessyFrewer73 in reply to shazzzy70

We definitely go through too much. Men don't know how lucky they are he he. Thanks hun, enjoy your weekend x x

Mindstorm profile image
Mindstorm

My wait is May to August for the endo centre. I have been in pain since November but was initially sent to colo-rectal and urology. My first gynae I was referred in Jan and saw them in April so it sounds about right. Unfortunatley being in pain does not warrant speedier treatment.

Painkiller wise I take Cocodamol as my regular and top up with Ibuprofen or Tramadol dependent on need. I'll be honest sometimes it doesn't take the pain away but it does leave me at a level I can function. Just watch the Tramadol side effects - they are a little bit "woohoo" like you've had a few - which I find can be unpredicatble; different levels on different days.

Good luck.

NessyFrewer73 profile image
NessyFrewer73 in reply to Mindstorm

Hi,

Co codamol is what I take every day as well, but cannot take ibuprofen because of a hiatus hernia. Will see what the.doctor says about tramadol. Am also going to contact my gynae and see what they say. I think it's terrible that we should have to wait so long in pain to be seen by someone. Good luck to you too x

electricjaws profile image
electricjaws

Do what I do honey, find out the name of the specialist you are under and then find out his secretary's tel number and weekly ring her to see if they have any cancellations , don't be rude just explain how desperate you are ( if your lucky you may get in earlier ( I by loads of health issues fibro is just one) so I go in and out of hospital regular, I have employed this method various times sometimes it has worked , sometimes not but it surely is worth trying!!

I learnt long ago not to hold g.p's or specialists as being above me, or to feel intimidated by them , I think one particular secretary helped me get seen 4 weeks before my allotted time just to get rid of me!!!

NessyFrewer73 profile image
NessyFrewer73 in reply to electricjaws

That sounds like a good plan, will give it a go 😀 will also find out about fentanyl patches as well. The doctors and specialists don't intimidate me, I'm similar, been in and out of hospital and seen lots because of other health problems too, one being a back injury I have had for over 10 years. That's why I definitely don't I tend on waiting that long to be seen. Thanks for the advice hun x x x

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