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"Endometriosis & Fertility"

About: General practices in Greater Glasgow & Clyde New Stobhill Hospital / Gynaecology Clinic Queen Elizabeth University Hospital Glasgow / Gynaecology (Ward 49)

(as the patient),

After 6 GP appointments over 6 years where my terrible period-related symptoms were dismissed as normal and being prescribed a whole spectrum of painkillers, anti inflammatories and other meds, I finally decided to trust my gut and book a private consultation with a gynaecologist to confirm there was nothing to worry about. As soon as I listed my symptoms, the consultant said it sounded like textbook endometriosis and carried out a trans-vaginal ultrasound to confirm stage 4 deep infiltrating disease including a large 10cm cyst on an ovary and significant bowel involvement. They were absolutely shocked I hadn't been sent for any tests with the symptoms I was presenting with. They were also shocked that a large node of disease on my vaginal wall was missed during a colposcopy about 3 months before. I was so upset that after so many appointments and chances for tests to be carried out, I now had disease that had progressed so far, causing damage to many organs and potentially impacting my fertility.

I was referred back to the NHS as my case is too complicated to be treated at a private hospital and will require a multidisciplinary team at the Endometriosis Centre at the Queen Elizabeth University Hospital. Since being referred back to the NHS, I have had various tests including an anti-Mullerian hormone test to give a rough indication of egg reserve as fertility can be significantly impacted by Endometriosis. As I was found to have a low reading, I was referred to the Assisted Contraception Service in Glasgow to explore my options before surgery which would cause trauma to the ovaries and therefore further reduce my egg reserve.

I was told at the Endometriosis centre that since October 2021, Endometriosis is now funded by the NHS for fertility treatment. However, when I had my consultation they told me that I wouldn't qualify for funding as I won't be losing my ovaries during my surgery. They said they can put my case forward to a panel to take into account my low AMH reading but couldn't guarantee I would be accepted. I found out a week later that I wasn't accepted which was very disheartening as it showed that Endometriosis is still not properly understood by medical professionals in adjacent fields. I am now back to awaiting laparoscopic surgery for my stage 4 disease, but all surgeries at the Endometriosis Centre at the Queen Elizabeth have been off since mid-September 2022, meaning no treatment for anyone of their waiting list for almost 9 months.

This is due to overspill of hospital inhabitants into gynaecology as it is seen as 'benign' and 'routine' when the symptoms of Endometriosis are severe and life-limiting. It's very unfortunate that women's health gets such little acknowledgement, research and funding, which is now leading to extreme backlogs and suffering that didn't need to happen. As a disease that is as common as diabetes and asthma in women (1 in 10), it is shocking how unknown/misunderstood it is amongst GPs, nurses, and incredibly, apparently gynaecologists too, with widespread misinformation. This needs to change and more emphasis needs to be placed on this condition that impacts so heavily on everyday life, and sadly, fertility too. 

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Responses

Response from Isabel Traynor, Lead Nurse, Gynaecology/Assisted Conception Services, NHS Greater Glasgow & Clyde 2 months ago
Isabel Traynor
Lead Nurse, Gynaecology/Assisted Conception Services,
NHS Greater Glasgow & Clyde
Submitted on 10/06/2022 at 14:19
Published on Care Opinion at 14:19


Dear mrob22

I am so very sorry for your experience and the length of time it took for you to have a diagnosis of endometriosis.

Please can you contact me directly and I will get in touch? My email address is: Isabel.Traynor@ggc.scot.nhs.uk

Best wishes

Isabel

Isabel Traynor

Lead Nurse Gynaecology

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