Trouble getting help post diagnosis

[Booknerd1598]

Hi All,Hope you are having as much as a pain free day as possible or atleast managing to rest.

My question to anyone diagnosed is have you found it more difficult getting help for either different ailements or to gynae?

Basically, since my diagnosis i have either been told other bad pain like what turned out to be a kidney infection was just my endo and more or less to get on with it. I've also been re referred to gynae ( my follow up gynae post laproscopy diagnosed me and discharged me in a 2 minute phone call, telling me i had stage 3, probably was going to need help having kids and no treatment plan), today they have told my drs to tell me to just tell me to continue with the pill. Thankfully my drs are good and are chasing up an actual appointment since i've been waiting months already and is getting worse.

I have tried so many paths and keep getting told to carry on as i am or dismissed and i am getting so desperate, i was wondering if anyone else had any experience like this or if it's just me? Or has anyone got any tips to manage?

(Just an add on I luckily was able to have my son in september,went back on the pill at 8 week appointment so have been on it over 6 months and was on it before getting pregnant, buts its slowly getting worse than before i had him).

Thank you for letting me rant or sharing anything, i really appreciate it.

-A

[Cailleach]

Hi,

Sorry to hear you are not getting much help from the hospital, sound like at least your GP is helpful? From my own experience and from what I read on here of other people’s experiences, this dismissive attitude is not unusual.

When you had your laparoscopy did they remove endo or was it only diagnostic? Do you have any more information other than that it was stage 3, ie where it was located? You could ask your GP if there is more information in your notes, or request your notes from the hospital where you were treated,

There are circumstances where it is appropriate to refer you to a specialist endo service ( BSGE). You should be able to find more information if you Google BSGE or the NICE guidelines for endometriosis, which you might also find generally helpful as to what you should expect.

Even if they removed endo at your laparoscopy it is quite likely that it could continue to grow and cause you more symptoms since then. It would appear that the constraceptive pill, which is a first line treatment, is not really effective for you. It’s not unreasonable to ask to be seen again and have further investigation.

You might want to ask your GP if there is another Gynaecologist you could be referred to as this one doesn’t seem very helpful. Depends on what is convenient for you and on waiting times, I suppose

Are you getting good pain relief from your GP in the meantime? There are quite a few options to try, so if what you have is not effective, ask for something else.

It is often a battle to be honest, so good luck and keep pushing! Xx

[Booknerd1598 in reply to Cailleach]

Thank you, for replying! Sorry it's been a while.

I saved up to go private for a consultation and it was worth it and got good reccomendation for a new pill called slynd and some diclofenac suppositories and cocodamol. So hopefully that works.

Thank you for your kind words

Amy x