This topic is about a 43-year-old woman who has been living with an ileostomy since she was 18 due to a severe case of ulcerative colitis. Over the years, she has had multiple abdominal surgeries, resulting in complicated adhesions. Recently, she was diagnosed with a 10 cm ovarian cyst, but her doctors are hesitant to operate because of the risks associated with her adhesions. She is experiencing constant pain and high-output from her ileostomy, and her quality of life is severely affected. She is seeking advice and options from the community.
Here are some suggestions and insights that might help:
1. Keep looking for a surgeon who is willing to operate. Sometimes, all it takes is one surgeon who is confident in their ability to help.
2. Consider minimally invasive surgical options:
- Laparoscopic cystectomy or oophorectomy.
- Robotic-assisted surgery, which can be safer for navigating dense adhesions.
3. Make sure to have a complete set of imaging work-ups, including high-resolution ultrasound, CT, and MRI, and bring these to any new consultations.
4. Look for a gynecological surgeon with extensive experience in robotic or advanced laparoscopic surgery, even if it means traveling or seeking private care.
5. Clarify important clinical details with your gynecologist:
- What type of cyst is it (e.g., dermoid, endometrioma)?
- At what size will they consider intervention?
- Are hormonal treatments an option to manage or shrink the cyst?
6. Pain management is crucial. Ask for adequate pain relief and consider muscle relaxants while you pursue a more permanent solution.
7. During any surgery, an experienced surgeon might be able to remove some of the adhesions, which could improve bowel function and reduce pain in the future.
8. Present your situation as "significant uncontrolled pain" rather than just a cyst removal, as this might prioritize your case in some health systems.
9. Be proactive in advocating for yourself. Learn the medical terms, keep copies of all your results, and don't hesitate to contact clinic secretaries or escalate to patient liaison services if needed.
10. Remember, others have successfully had large cysts removed despite complex medical histories, so don't lose hope.
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