No treatment

[Kedii]

Hi all,

I just wonder if there are others there who have gaps in between referral, diagnosis and surgery with no treatment?

I stopped taking contraceptives nine months ago due to other health issues without consulting anybody and my main worry now is what if my endo has grown?

I haven’t had a lap yet but a TV scan was very much suggestive of a moderate degree of endometriosis.

I’ll see a gyne to decide the next steps, but started feeling very anxious about my decision.

Would love to hear from anyone who has a similar experience. Thank you!

[Lornalost89]

Hi. Speak to your GP or reach out to your gyne team, once I had my MRI December 2023 I was discharged from my Local hospital as they referred me to a specialist unit ( not been seen there yet) I expressed ny unease with just being left while there's such a long wait to be seen by the specialist centre, I had my MRI due to worsening symptoms etc, they listened to me after a bit of a battle, Seen me a couple more times to discuss concerns etc ( I must admit though my gp was very unhelpful when I reached out) I was then given zoladex while I wait to see the specialist. My local hospital also put me on their list for a diagnostic lap because I've never had one but from the MRI they don't want to touch me really. It's all a bit of a mind field but please reach out to the team don't wait for them you can easily be forgotten! X

[Kedii in reply to Lornalost89]

Thank you so much for the response! I hope they see you very soon! X

[Sparkles2000]

Hi .. yes unfortunately. There is a very strange way of risk assessment in the care system. I was referred under the two week rule in July 2022. Then scanned and scan showed penduculated 6cm fibroid with a fibroid uterus! Then scanned again 3 months later but nothing for pain.. then scanned again in January 2023. Then seen specialist again after 8 months and GP telling me take pain relief. So in August 2023 they agreed to an MRI. It took 3 months for my results and I paid to seen a private doctor in same trust to get my results which showed .. adeno .. endo .. adhesions plus the fibroids. Then by a miracle I got a letter for the consultant who hadn’t seen me with my results. So during the appointment I had with her she put me on prostap.. and said have this and you can then have a laparoscopy.. so after 5 months and bad side effects including .. unable to pee or poo and a lesion on my eye .. along with those hot flushes.. anxiety .. I’m sat waiting to have the op about to put my gown on she said.. no go home you look fit to me! So it’s just a two year long joke and I should be annoyed and I am because one day it will be a medical emergency.. for me .. and them. There was a lady waiting for a breast augmentation the day my surgery was cancelled her 4th op after having a number of issues. That made me less annoyed to go home as she was a emergency.. but still it’s been another month for me now with no follow up. Oh just the letter from the hospital dated 3rd July my op date saying ..I was listed for surgery in the 3rd .. and I was having endo .. adeshion removal then getting a coil fitted. It was written and sent to my GP with the letter authorised by the consultant on the same day when she had seen me face to face from 12 noon to 2pm when she cancelled my surgery and sent me home!

[Kedii in reply to Sparkles2000]

Sorry to hear that! I hope you have your op without any other delay!

[Iceprincess123]

Hello,

Sorry to read about your experience.

I have had a very similar experience, had a TV ultrasound and then was referred a couple of weeks later- no treatment given from GP, not even pain relief.

7 months later, have been given pain relief from GP, but still no other treatment as I have been referred to gyne.

You are not alone- It can be distressing waiting a long time without treatment. Unfortunately women's health is very underfunded and a disjointed system.

[Kedii in reply to Iceprincess123]

Thank you and sorry to hear about your experience too! I can’t believe it is taking that long for you to be seen! I hope you can start treatment very soon.