Hi everyone, 

Sorry it has been so long between updates but I had my surgery finally, a full 16 months after my diagnostic laparoscopy and over 2 years from my referral into the service and over 20 years of a&e visits, unexplained symptoms and medical gaslighting! 

It was scheduled by the hospital quite last minute, I'm told they did 3 surgeries on the 22nd, 23rd, 24th December to try and clear some of the backlog and the recent patients who had theirs cancelled due to staff sickness. They had to contract another surgeon from a hospital down south to support the MDT as the Leeds bowel surgeon was unavailable. Could this mean the hospital bosses are listening......? Or was it simply a case of the theatre being more available as it was so close to Christmas? Either way I and I'm sure the other patients, are so very thankful to the consultants and staff for working so close to Christmas to perform these surgeries. 

But enough about me. Having my surgery has not changed my resolve to see this petition and campaign through to ensure that LTHT take this matter seriously and implement some changes and additional funding for the endometriosis department, particularly as we are starting to see more BSGE consultants retiring and not being replaced as has happened at Pinderfields, who are now referring more patients to Leeds due to their reduced capacity. The wider question of what will happen if the hospitals decide to close these BSGE's due to retirements of consultants is a question for another day. But the reality is that services like Leeds will probably pick up these patients and the fact remains that they are already drowning in patients and demand outweighs capacity, so it will only get worse unless something is done now to pre-empt this! The most frustrating thing is that there are currently two trainees under the endo consultants at Leeds who will soon qualify and could easily help with this if the trust is wiling to authorise funding for two more consultants! This is only part of the problem though, access to theatre and support from MDT surgeons are also issues that delay surgeries. 

I recently met with Sir Alec Shelbrooke MP and co-chair of Endometriosis UK charity and discussed all of this. He is visiting Leeds in his capacity at the charity at the end of the month and plans to discuss some of these issues then. I did stress to him that ideally he needs to meet with the hospital decision makers as we all know the consultants are not the issue here! They too want to expand the service. He has promised to take this further as much as he can and has also promised to debate this in Parliament in terms of not only this petition, but also the wider concerns about the NHS not taking enough action about endometriosis in general. There are many wider concerns about lack of awareness/knowledge of medical practitioners delaying referrals to appropriate services.

The launch of the online hospital, which has promised to prioritise endo, is a step in the right direction but raises many questions/issues itself - who will these experts be who will see these patients? What are their qualifications and experience? If they are currently endo surgeons how will they possibly fit this into their already overstretched schedules? What tests will people be sent for and will they be done by endo trained practitioners? We all know that ultrasounds and MRI not done by endo trained specialists often come back normal when they are abnormal? How will this also impact on referrals for laparoscopy - presumably this will increase the amount of referrals coming in which will make wait times worse- what is going to be done to compensate for this? Why isn't non invasive diagnosis methods being invested in by the NHS like endosure testing? 

Anyway - I digress. Back to this petition and campaign. When I put this question to the trust recently this is the response I got:

Q: Since the endometriosis department at Leeds became a provisional BSGE centre in Summer 2025 and has seen a significant increase in referrals which has increased wait times for both consultations and surgery to over one year, what is being done to mitigate this? Are there any plans to expand funding for the department that it so desperately needs? 

A: Leeds Teaching Hospitals became a provisional BSGE Endometriosis Centre in Summer 2025, and we have since seen a significant increase in referrals from across the region. This reflects both the high level of trust in the service and the fact that we are currently able to offer specialist care that is not available in all neighbouring hospitals.

We recognise the impact that rising demand has had on waiting times. While our current waits are not out of line with other specialist centres nationally, and in many cases are shorter than those elsewhere, we know that any delay is difficult for those experiencing endometriosis symptoms.

To help address this, we are:

Actively expanding capacity within the service, including reviewing clinical pathways.
Working with partner Trusts across the region so that patients who do not require specialist centre input can be seen closer to home, helping ensure that our Leeds service is available for those who need more complex care.
Continuing to meet all the requirements associated with being a BSGE specialist centre, which includes maintaining high standards of clinical expertise, multidisciplinary care, and surgical capability.

I have since replied asking for further details on just what exactly those plans for expansion are that are mentioned in this very vague reply. It also sounds like they will no longer be accepting referrals from out of area unless it is for those needing more complex care but given the rate of stage 4 endo that is misdiagnosed by general gynaecologist, this is concerning. The obvious solution is to make endometriosis diagnosis/identification training mandatory for all gynaecologists, but this will probably never happen. 

 I have further meetings scheduled this month with other MP's and the head of health scrutiny for Leeds so will provide further updates then.

I am still awaiting a response to my FOI request to the hospital and I am still collecting stories for our open letter to the LTHT Chief Executive and I hope to be able to arrange a meeting after this with him and the key decision makers for this department to discuss what can be done to address these concerns. So please keep sharing the petition so we have a strong number of signatories when we submit this. 

In other developments, I was really grateful to Laura Colins at Yorkshire Evening Post for not only covering my story but making it front page, which is absolutely amazing for endometriosis awareness. I'm excited to be working with her in future on a national endo project. ITV have also been in touch about something they are doing in the near future; so in preparation for this I have been reaching out to other endo campaigners and influencers both past and present to see if we can come together to make something really big happen nationally with endo awareness and diagnosis/treatment. If you want to be involved please drop me an email to: vickyt1988@gmail.com

You can read the article here: YEP article

And that's everything for now, so please be reassured that despite having my surgery I am still working on this campaign and really feel we can make some difference locally. 

Thank you all again for your support.

Best wishes, 

Vicky