In December I had an ultrasound which found a 12cm cyst, and had an MRI in February which found it to be an endometrioma/chocolate cyst. I’ve always had problems with my period but doctors didn’t really look into it until I got sharp pelvic pain/stabbing feeling in abdomen outside of my period. Thankfully I’m now with a great doctors surgery who took me seriously and pushed for me to have the ultrasound which found the cyst.
As it’s a large cyst I’m on the waiting list for a robotic laparoscopy. I was under the impression that all types of surgery under the NHS had a maximum 18 week wait period, but after calling the gynaecology waiting list secretary at the hospital I’m having the cyst removed, I found out I won’t be seen until the end of 2023 at the earliest.
After doing more research it looks like most other people are in the same boat too, and a lot have waited for over a year making me one of the lucky ones! The secretary said the 18 week wait period doesn’t apply to my case. Does anyone know why this might be? I assumed it would fall under the category of general surgery?
Also, has anyone managed to speed the process along on the NHS without paying for private? I obviously don’t want to take an appointment away from someone who needs it more, but I can’t imagine waiting until the end of the year to get rid of this pain and discomfort. Any advice would be greatly appreciated ☺️
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siob96
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Endometriomas are often associated with deep endo elsewhere - does the MRI show endo anywhere else? If so it's not just a matter of excising the cyst which requires great expertise, especially if fertility is important, but of excising what might be severe endo elsewhere. This requires a multidisciplinary team in a specialist centre.
If you are such a case, the 18 weeks does apply in theory but such surgery requires availability of highly specialist teams and there are few such experienced surgeons. The waiting lists are long and they are only just starting to catch up after Covid in most specialist centres. So basically they can only do what they have the capacity to do.
Hi, thanks for your response! The MRI didn’t find endometriosis anywhere else, which I know is odd because these cysts are usually only found in the more advanced cases. So it should just be a case of cyst removal. I understand that the waiting lists are long and the 18 week maximum is most likely not stuck to, it’s just the fact that I was specifically told that the waiting period didn’t apply to my case without being told why which was frustrating. It’s a robotic laparoscopy so I’m wondering if that could have something to do with the 18 week rule not applying too.
I wouldn't think the 18 weeks is applying to anyone in gynaecology and other conditions other than cancer as the theatre availability is spread across many waiting lists.
18 week pathways are when initial treatment starts and you should be seen. So this includes your MRI and ultrasound. Most surgeries were cancelled during covid and triaged according to urgency ie cancer. There are only a number of accredited excision specialists in the country and all of them have significant waiting times. I know this from both personal and professional experience. My first diagnostic laparoscopy was under a general gynaecologist in April 2021 I waited 14 months for this. I was told I had mild endometriosis after the op even though endo was found on the mesentery of my colon. I sought private advice from an accredited surgeon in November 22 as I was so poorly with ongoing symptoms. I had an ovarian cyst that lit up like a Christmas tree and endometriosis across my bowel, pouch of Douglas, utero sacral ligaments on an mri without contrast. I have been told I have deep infilitrating endometriosis and still have pain and bowel symptoms after surgery. Sadly surgery isn’t a cure as I’m sure you’re already aware and so many women have been waiting over 12 months for surgery for endometriosis. I wish you the best with your ongoing treatment. You can check your hospitals waiting times on a website called my planned care.
I'm so sorry to hear your story it's so horrible waiting all this time but it will get there! I got referred to a endo specialist in January 2022 and I've just got on the surgery waiting list last month. I phoned up for a date to speed up the process and because the disease isn't life threatening I think it does generally take longer for us where as a cancer patient for a lap or someone under private would come first. Also they mentioned patients get put under a wait depending on case I'm a P3 as I need a bowel surgeon as well as endo gyne doing my surgery so I'm on a 3month+ wait. Patients under P2 have a max of 3month wait for surgery since they are easier to treat quickly. However on a recent phone call they said I should have a date for surgery for me in a month or two and I should have it done by the end of the year. 18 week wait for treat doesn't really mean surgery it's any form of treatment which could be a consultation or a new prescription falls under action of treatment. Its just crap tbh but that's what I know and knowing when to chase them up.
I hope this helps with nhs background knowledge from what I've been told by the NHS.
All the best and hope you get a form of treatment soon
Like you Annabel, I was originally placed on a P3 and rang admissions for many many months and asked to go on the cancellations list. Even after the surgeon then expedited it to a P2 I still had a wait... Overall I waited 74 weeks to have my op which was done just 5 weeks ago! But because I had been given a scan/medication, it classed as treatment as you mention.
I really hope you both get sorted soon and aren't waiting too long 🙏🏻🤞🏻
Thank you kirsty I hope you recover well. I'm dreading surgery and time off but I need it 😫 it's nice to have time to process it I suppose lol. All the best x
My recovery is going really well thanks 🤗I was half expecting to wake up with barely any organs but my surgeon managed to save most, I had 2 large cysts and extensove adhesions removed. My left ovary was attached to my bowel and my right was tethered to my womb and the pain was more managable than I thought.
I have just gone back to work and playing sport this week and started with daily walks a few weeks back, but most definitely take the time off you need... I'd rather recover once and properly than push through and have set backs time and time again... Best of luck for the day it arrives 🙏🏻
Thanks for such a detailed response Annabelle, this info is really appreciated! Can I ask what P3 is and how you found out you were a P3? Haven’t heard about this before!
I think it’s just a shock hearing it will take so long because everything moved so quickly at the start - but that was because they thought it could be a cancerous cyst based on my blood tests so I was on the 2 week cancer pathway. Obviously I’m so so relieved it’s nothing that serious, but from it’s been a bit of a rollercoaster from going from being seen so quickly to the complete opposite!
Sounds like you’ve had a really long wait too, I hope you get the treatment you need as soon as possible!
I'm sure but someone correct me if I'm wrong lol but I think I was told P2 are quicker seen in a max of 3 months wait for surgery and P3 wait longer than 3months+ but to be honest I just wouldn't count on this *P* rubbish I think they just get you in when it suits everyone and is convenient I need more than one surgeon when I have my surgery so I have to wait longer as a P3 however I spoke to the nurse the other day and she reckons I might get a date before September but I won't hold my breath lol
I just hope we all get treated asap and they can find a way to stop endometriosis to start with I personally think it started when I first got my period. But some people say earlier. Hopefully there's a cure thats not surgery one day. I've been told they have to leave some of my endo behind because its affected some important nerves and ligaments that control my bowels so I don't see this being my last surgery if that's going to be left behind to grow yay lol
All the best pop me a message if you need anything
You're not wrong, the P stands for 'Priority' 1-4... As I mentioned I was a P3 originally and pushed to be expedited in Oct after a year wait, come round to Feb this year and asked again, I was in by March.Push with secretaries and admissions, they don't realise the impact this illness has not just physically, mentally and emotionally its exhausting too 🙈
Thanks to everyone for all of your replies! Obviously not the news I’d like but at least we’re all in the same boat, and of course the NHS will be doing everything they can under the circumstances. It’s just difficult to live with when the cyst feels so huge - haven’t been able to bend down without a sharp pain since November!
Fortunately I received a date for my pre-assessment this morning so if a last minute cancellation does pop up I will be able to take it. Although I saw someone else on the forum say these expire after 3 months, so not sure if I’ll have to get another done if there isn’t a cancellation and it ends up being late this year/next year?
Thanks again for your replies, the information has been very useful! ❤️
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