Dear Endometriosis Specialist Team,
I am writing to share an update on my current health and to kindly request some clinical guidance regarding my ongoing treatment plan. I want to preface this by saying I have complete confidence in Mr XXX and the entire team. I am deeply understanding of the immense pressure that the NHS service is currently under, and I have always been incredibly grateful for the care I have received. Throughout my time being treated by the team, I have always been, and remain, entirely willing to explore and try all medical options offered to me over surgical intervention. However, following a series of administrative delays, I currently feel somewhat unsupported and left in the dark regarding the next steps in my care.
- Administrative Timeline and Care Management May 2025:
I was seen by Mr XXX team and commenced with a change from Zoladex plus add back to Ryeqo and advised that I would have a 6-month review. Unfortunately, this appointment did not take place.
August/September 2025:
I contacted the Endometriosis Nurse to advise that my pain was beginning to increase and that I was experiencing new symptoms/side effects which had commenced in July 2026 and was not settling. I was advised that this was unusual for side effects to start after 3 months of treatment but a note would be made on my record for review by Mr XXX at my routine 6 month appointment which was due in November 2025.
Late December 2025:
Having not heard back, I chased the bookings department and was subsequently allocated an appointment for February 2026.
February 2026:
Following my clinic appointment, I underwent an MRI scan and a DXA bone density scan. I have not yet received the results or any feedback from either of these investigations.
February–April 2026:
I was prescribed Provera for two months alongside Ryeqo. While this provided a temporary improvement with the bleeding, it did not completely resolve it, and the irregular bleeding has now returned to its previous status.
Current Status:
I have reported these concerns to the nurse, but my next follow-up appointment is currently scheduled for August 2026.
- Current Symptoms and Clinical Dilemma:
Having been on continuous, heavy hormonal suppression for over three years (two years on Zoladex followed immediately by 13 months on Ryeqo with no break), my symptoms are shifting. While my pain is not currently unbearable, it has been steadily worsening over the last 6 months. Alongside this, my gastrointestinal symptoms have escalated significantly; I am experiencing severe, regular bloating and profound constipation, often going 5 to 7 days without a bowel movement.
On clinical advice, I was recently prescribed Naproxen to help manage the worsening pain whilst I await further review. However, as an NSAID, Naproxen is known to exacerbate bowel issues. This has left me in a very difficult position where trying to manage the pain actively worsens my digestive health, and I feel I cannot simply leave these symptoms to deteriorate any further.
- Request to Cease Ryeqo Due to Side Effects:
Because of how heavily these cumulative issues are impacting my physical and mental well-being, I feel the best option for me right now is to stop taking Ryeqo. I have given the medication a fair trial of 13 months, but the side effects—which only surfaced after the third month—have progressively worsened. To support my requirement to cease this treatment, I have outlined the specific side effects I am currently suffering from:
Mood Changes & Severe Anxiety:
The profound estrogen suppression has triggered intense, daily anxiety and low mood, making it incredibly difficult to cope with daily life.
Gastrointestinal Issues & Debilitating Bloating:
My digestive system has slowed down drastically, leaving me with regular bloating and the severe constipation mentioned above.
Persistent Headaches:
I am experiencing frequent, draining headaches that seem linked to the hormonal fluctuations.
Loss of Libido:
The medication has caused a complete loss of interest in sex, which is taking a secondary toll on my well-being.
Irregular Bleeding & Facial Puffiness:
I am still experiencing unpredictable bleeding patterns alongside gradual facial fluid retention.
Hot Flushes & Night Sweats:
I have recently started to again experience nighty sweats which are disturbing my sleep and often result in me having to get up and have a shower and/or change clothing, I am also experiencing regular daily hot flushes which come out of nowhere and affect my ability to focus and function both at work and home.
I feel a strong need to take some control back and allow my body a chance to balance out hormonally after years of continuous suppression. However, because I want to do this safely, I would be incredibly grateful for the nurse or medical team's advice on the proper protocol for stopping the medication to avoid a sudden bleeding or pain flare-up.
- Personal and Professional Impact:
As the team knows, endometriosis is a condition I have lived and suffered with for my entire adult life, since my mid-teens. Its effects on my life over the years have been profound. Currently, the daily anxiety caused by these worsening symptoms, combined with the anticipation of further pain, is causing my mental health to suffer badly. It is also placing a significant strain on my professional life, my daily routines, and my personal relationships.
My Request:
Given the worsening nature of the pain and bowel issues, waiting until August 2026 feels too far away to address these changes. I would be incredibly grateful if the team could kindly assist me with, Safe clinical advice on how to stop taking Ryeqo. An update or copy of my February 2026 MRI and DXA scan results. The possibility of expediting my review appointment so we can discuss the next medical steps forwards.
I would also like to highlight my ongoing efforts to alleviate and help with my ongoing issues, I am a healthy weight and have a very balanced and healthy diet, I exercise regularly 5-6 days a week at the gym and take daily vitamins and supplements in order to ensure my ongoing health and wellbeing are in good order. As I was also informed previously that I had Osteopenia I take a daily Vit D and Cod Liver Oil along side, B12, Milk Thistle, Collagen and Lions Mane.
Thank you so much for your time, your continued support, and for everything you do under such challenging circumstances. I look forward to hearing from you.