"Simply telling me what they were doing could have helped"

I had a diagnostic laparoscopy and ablation earlier this year to treat endometriosis. I recently attended a follow-up colposcopy after treatment for cervical ectropion, CIN1, and HPV findings in my 2023 colposcopy. The latter team was wonderful; they explained everything clearly and made sure I felt comfortable and supported. They noticed my anxiety and asked if everything was okay. Although this appointment was positive, I shared my trauma from the laparoscopy a few months prior and my resulting anxiety around medical settings. They listened, provided support, and urged me to write about my experience.

Like many women with endometriosis, I've had dismissive and negative experiences with doctors, leading to panic attacks and anxiety in medical settings. Despite regular therapy to manage my anxiety, my surgery experience worsened it. I want to provide feedback to help future patients.

Before my surgery, I had one phone call with the doctor, during which I felt dismissed. I had struggled with pelvic pain for years and was finally referred to gynaecology after a long wait due to COVID. The first gynaecologist suggested possible endometriosis and cervical erosion but said it was likely nothing due to my age and suggested contraception. I pushed for a further referral. During the call with the doctor, they didn't let me fully explain my symptoms, pushed for the mirena coil, and only reluctantly agreed to a diagnostic laparoscopy after I broke down in tears.

On the day of surgery, the doctor kept cutting me off and was dismissive. They said surgery would take at least 45 minutes to investigate and swap my copper IUD for the mirena coil. If endometriosis was present, I would be under for 1-3 hours, but they would close me up and refer me to a specialist hospital if they found stage 3+. Despite my research and advice from my endometriosis support group, they insisted that excision surgery was only for severe cases and that ablation was just as good. They didn't specialize in endometriosis and would have to refer me to Derby for excision surgery. If I had known this earlier, I would have asked to be transferred, but I was desperate for relief.

The anaesthetist was also dismissive, ignoring my low blood pressure until my mum, an NHS nurse, brought it up. In the surgery room, no one spoke to me, increasing my anxiety. A nurse tried to distract me, but the anaesthetist put in the cannula and administered anaesthesia without warning, making me feel like an object. Hearing my surgeon say they needed less time than explained made me feel my symptoms weren't believed, making me feel unsafe.

I woke up in severe pain, foggy, with an oxygen mask, and a rash on the arm where the cannula was inserted. The nurses were worried about my prolonged wake-up time and the allergic reaction. Once stable, they removed the oxygen, which calmed me. Despite several IV morphine shots, the pain persisted, and fentanyl only helped briefly.

The doctor didn't speak to me post-surgery. They told my mum they found light stage 1, maybe stage 2 lesions, severe pelvic inflammation, and pelvic congestion. They suggested further hormonal treatment, but their surgery notes were brief and contradictory. I had to stay overnight due to extreme itchiness, fever, and difficulty urinating. The hospital discharge notes inaccurately claimed no vaginal bleeding and no urination issues, which worried me about the lack of investigation into my allergic reaction.

I had three incisions with dissolvable stitches, but one black stitch took over a month to dissolve. It was difficult to reach the doctor for follow-up questions. Four months post-surgery, my symptoms returned, and I am bed-bound again. I haven't spoken to the doctor, and their notes left me confused about my condition and treatment. Other doctors informed me that pelvic congestion should be treated, but I haven't been referred for further examination. The doctor promised a follow-up in three months, but I only have an appointment in September. I feel this delay is unacceptable given my physical and mental struggles.

Now, I experience panic attacks and nightmares related to my experience. Better communication, such as explaining procedures and anaesthesia, could have reduced my distress. My first colposcopy doctor was amazing, offering pain relief options and clear explanations. However, a different doctor on the day dismissed my need for pain relief, making the procedure extremely painful and traumatic.

My recent positive experience highlights the importance of sensitivity in treating women with endometriosis, who often face years of dismissive treatment before diagnosis. It's crucial for gynecology teams to ensure patients feel safe and comfortable. Having a chronic illness requires regular doctor visits, and my negative experiences have made this even more distressing. Every appointment since has triggered severe anxiety and PTSD episodes.

It is so important, especially in gynaecology, that patients feel safe and comfortable. 

Simply telling me what they were doing ahead of time (e.g., "I am putting in a cannula for your anaesthetic; you will feel a slight pinch, but don’t worry. I am administering the anaesthetic now; this might feel funny going in, but don’t worry. You’ll feel a bit dizzy and be asleep very quickly after. I need 30 minutes; we may need longer if we find endometriosis.") could have helped. Discussing the anaesthesia duration before entering the room would have also reduced my distress. Given my positive experience in the follow-up colposcopy, I wish my surgeon and team had provided the same level of care.