"Investigations for endometriosis"

My current journey began in 2020, although I had previously undergone a laparoscopy for removal of an ovarian cyst, during which I was told that a brief inspection did not show endometriosis. At that time, I was taking the combined oral contraceptive pill. Given that my symptoms were present both before and after this procedure, I now understand that hormonal treatment can sometimes suppress visible disease, which has led me to reflect on how reassuring that earlier conclusion could realistically have been.

In 2020, I spoke with my GP about worsening symptoms, including cyclical rectal bleeding, which raised concerns about possible bowel involvement. My initial consultation felt quite dismissive, with symptoms attributed to haemorrhoids despite previous negative examinations. This led to repeat checks and some delay. After this, I saw another GP who listened carefully, validated my concerns, and referred me appropriately to gynaecology. This was a very positive experience.

I was offered an abdominal ultrasound, which was reported as normal, although one ovary was difficult to locate. I was not offered a transvaginal ultrasound. I later learned that NICE guidance notes that a normal ultrasound does not exclude endometriosis and that transvaginal imaging is often recommended when the condition is suspected. No further imaging was arranged at this stage.

I then waited around a year for a brief telephone consultation. While the clinician did listen and agreed to place me on the waiting list for diagnostic laparoscopy, I felt the appointment was rushed. I asked about further imaging, including MRI, particularly because of bowel symptoms, but this was declined. NICE guidance suggests MRI can be helpful in suspected deep endometriosis to inform surgical planning and multidisciplinary involvement, and I feel this may have helped clarify my pathway earlier.

I was eventually offered a short-notice surgery date in 2025. When I asked to speak with a clinician beforehand to help me make an informed decision, I was advised this would likely delay surgery by another year. This was difficult, as NICE guidance emphasises shared decision-making and informed consent. After raising concerns, I was able to have a clinic appointment.

During that appointment, I appreciated reassurance that laparoscopy was necessary for diagnosis. However, several clinicians were present without being introduced or their roles explained, which felt unsettling and not particularly trauma-informed.

I was advised about BMI requirements for surgery. I understand the importance of managing surgical risk and was motivated to lose weight. However, during the long waiting period there was very little contact or guidance, aside from letters asking whether I wished to remain on the list. Clearer communication about expected timeframes and requirements might have helped me work towards these goals in a more supported way.

At my pre-operative assessment, I asked whether any endometriosis found would be treated at the time of surgery. Unfortunately, this question was later misunderstood and recorded as a request for sterilisation. This caused me significant distress, particularly as I had clearly stated my hope for a future pregnancy. While this was later clarified, it highlighted how important clear communication and documentation are around consent and reproductive wishes.

I did not meet my surgeon until the day of surgery. Although the surgeon was reassuring, consent discussions took place in a ward environment with limited privacy, which made it harder to raise sensitive concerns comfortably.

The nursing staff on the day surgery ward were excellent - kind, compassionate, and very supportive. Their care made a significant positive difference to my experience.

After surgery, I was told that endometriosis had been found and that I may need referral to a specialist centre for further surgery. I was also advised to restart the combined oral contraceptive pill. While I understand this can help with symptom management, I found this advice discouraging as I have been on the pill for many years and my symptoms and disease appear to have progressed despite this.

Following surgery, my symptoms worsened. When I later spoke with my GP, I became aware that the surgical letter placed considerable emphasis on my weight and framed weight loss as a key recommendation. This had not been discussed with me directly after surgery, which was upsetting and confusing. While I recognise the role weight can play in outcomes, I would have valued a more balanced and transparent discussion that also acknowledged other factors, such as disease extent and the limitations of surgery without prior imaging or MDT planning.

I also received written confirmation of my diagnosis several months later. The letter was very brief and did not include management recommendations, which felt like a missed opportunity to help me prepare for next steps, including specialist review.

Although I understand that weight optimisation may improve outcomes, I am concerned that BMI is being positioned as a barrier to further care. This concern is reinforced by referral correspondence to specialist services that focused heavily on BMI rather than the clinical complexity of my disease. NICE guidance states that referral to specialist endometriosis services should be based on disease severity and complexity, not patient factors alone.

Overall, while there were individual moments of good care, my experience was marked by long waits, limited communication, and some misunderstandings that caused unnecessary distress. I hope this feedback helps highlight the importance of clear, compassionate communication, regular updates during long waits, and alignment with NICE guidance, particularly for patients with complex or suspected deep endometriosis.