Literally had enough!

[Hollymariaxox]

Okay so a&e today for seven hours.. god knows why I even bothered but I felt like I had no other option. I had bloods taken, urine sample etc all the usual bits, all was clear as i assumed.. I then was told by the junior doctor that my severe lower back pain is probably mechanical 😩😂😂 (I'm 29 ! Usually fit and healthy.. ) and that all the gynae team were very busy so would have to wait for my referral appointment (in approximately 4/Months btw!)

Anyway I cried with frustration and begged her to at least try to get someone to see me from gynae .. hours later a gynaecologist came down to me and did a swab, felt my stomach etc, again all the usual bits,then popped out for ten minutes, came back and said because im not on a cancer pathway they can't see me any faster and i have to wait for my referral appointment.. in the meantime consider going back on contraception.. which i told her I am hoping to conceive!! and to carry on alternating the painkillers like I have been doing (paracetamol,codeine and ibuprofen) which I also said multiple times is not touching me 😩 I'm just absolutely done with the NHS 😩

I'm absolutely in no position to do so but just trying to gauge the going private side of things 😬 I mean I'm assuming it's worth it if you have the money, but am i better waiting to have my first appointment with NHS and then considering going private for diagnostic laparoscopy 🤔 or any advice i don't even know where to start!

[Scoutybob]

I'm so sorry to hear this. So many of us just being left, either before or after diagnosis and in huge amounts of debilitating pain. Are you still awaiting a diagnosis? And have you had any internal scans?

[Scoutybob in reply to Scoutybob]

I've just had a quick look at your previous posts. I was in a similar place where on my first scan they thought I had a tubo-ovarian abscess / PID. It wasn't! I got put on the NHS pathway but I went for a private scan in the meantime. I think it cost around £270 (I think!) and it was the best thing I could have done. She was so informative and talked me through everything slowly and explained a had severe endo and adenomyosis and I got a report. I then took this with me to my NHS appointment. It didn't speed the NHS appointment up but when I could show the report along with my images, it was taken seriously and definitely sped up from where it would have been. He then referred me for an MRI on that first gynae appointment which wouldn't have happened otherwise. This then confirmed stage 4, endometriomas, adhesions, kissing ovaries and tubal and bowel involvement. So as a result of that I quickly got referred to a BSGE specialist. I'm still waiting on the urgent surgery list but I would definitely say the private scan cost was 100% worth it - firstly for self-reassurance, secondly to speed the process up.

[Els123456 in reply to Scoutybob]

I’m really sorry to hear this. I also got treatment through an and e but it was after confirmed scan said endometrioma so I already knew I had endometriosis. I was waiting so long for a referral the an and e doctor took me to gynea and ordered me to have a scan and consultation. I would still be waiting without her! I never even heard back from my gp referral think it got lost in the system so had treatment with a different trust. Keep fighting. Do you have an urgent referral from gp? Maybe try going back through that route speak to female doctor and explain the impact on your quality of life etc and ask for urgent referral if not already. The only other thing I could suggest is going to a different a and e next time? I went in through a different trust and they asked me if I wanted treatment there in the end. Good luck sorry you are going through this that gynea doctor was no help at all.

The private scan might help for a confirmation, you really need to be seen by a specialist. A scan might help but the reason that I did not go private is that I was concerned in case I needed further treatment and wanted it to be through the nhs.

[Hollymariaxox in reply to Els123456]

Thanks, it's so upsetting 😩❤️ I have been hounding my GP about the referral, also emailed him last week to say I need an expedite because it's literally disabling at times and I can't carry on like this ! I'm calling today to check if GP has done it ! Thanks for your advice, the thing about trying a different hospital, is that my hospital local to me is a widely recognised gynaecological and endometriosis specialised one for hours 🤔 so I'm absolutely gutted that they were disappointing in a&e yesterday 🥺 yeah so the private thing to me at the minute with money etc is very unlikely I was just curious, but tbh it's no where near doable, and I feel like even £200 for a consultation is just going to land with the same answers i already know. And then end up having to pay MRI etc I just can't 🥺I wish you all the best thanks lovely xxx

[Hollymariaxox in reply to Scoutybob]

It's so frustrating 😩💗 yes over the months I have had ultrasound, transvaginal, CT scan and colonoscopy (which showed diverticulosis) had appendix removed in February, that was the start of everything, they assumed it was that but histology of it was fine. Still awaiting diagnosis, GP did referral about a month ago xxx

[Hollymariaxox in reply to Scoutybob]

It's so frustrating 😩💗 yes over the months I have had ultrasound, transvaginal, CT scan and colonoscopy (which showed diverticulosis) had appendix removed in February, that was the start of everything, they assumed it was that but histology of it was fine. Still awaiting diagnosis, GP did referral about a month ago xxx

[Els123456 in reply to Hollymariaxox]

Sounds awful I’m sorry you’ve been left like this and that’s not great care from them at all.. I sometimes think that they only see ‘urgent’ when a cyst bursts and you might loose an ovary but it shouldn’t have to get to this point. Definitely try and wait for the specialist endo centre if you have evidence it is endo which it sounds like as I think they offer the best care and experience although I had good care through my lap. I hope you get hold of your gp to chase have pm’d too x

[h0lli3]

Try looking up the endo centres nearest to you and finding out their wait times, you may have to phone them, and then ask your GP to do a referral to the one you like best consultant/equipment/wait wise. It shouldn't cancel your other appointment but check first, then you can choose where you go if the other hospital accept your referral.

[East_end]

I wish I had the option to go private too, but the thing about private is you have to do your own research about the best person to see, etc.

I am also worried about being over provided for, just because it a paid service, not being able to decide what I actually really need, at the right time.

It’s very difficult with the NHS taking years to provide and private care being able to give you everything you think you need as long as you can pay for it.