Kate's Surgery Story

By Kate from the QENDO Community

Last week as part of our #qendomarchchallenge we asked the QENDO community to share their surgery stories. Many of us have had multiple procedures, while others have just had their very first and received their diagnosis. There were stories of saviour surgeons, finally finding an answer after a long road to be taken seriously; there were stories of surgeries with heartbreaking consequences, or those that caused ongoing issues that still present problems. Sharing our stories is a great way to raise awareness and reassure other women that they are not alone in their journeys. Each journey is unique and at QENDO we celebrate this.

When endometriosis is suspected, the gold standard for diagnosing, and subsequently treating, the disease is a laparoscopic surgery. While laparoscopy is, when compared with other surgical techniques, less invasive and often allows the patient to go home the same day, it is not without its risks. Any procedure may cause complications and thus it is essential to choose a specialist wisely and ask questions about any surgery they may suggest - and remember, it's okay to ask for a second opinion!

Kate, a member of our QENDO community, asked us to share her story so that she may help educate and highlight the importance of finding the right specialist for your needs. On the 6th of March Kate had a laparoscopy and hysteroscopy for endometriosis, a day procedure that she was told went well and was discharged home to recover. The next day she woke up with some pain and was unable to go to the toilet. Suspecting something was wrong, Kate called her doctor for advice and was advised that her issue was with pain management, leaving a script for her at the office. She continued to take high doses of pain medication to combat her growing discomfort. Despite drinking plenty of water, she was still unable to pass urine.

The next day, not only had the pain not resolved, it had gotten significantly worse. "The pain was so bad I decided I had to sit on the toilet until I did a wee," Kate says. The final straw that decided something had to be done was sitting on the toilet for thirty minutes, crying in pain and yet still not being able to urinate. Upon weighing herself, Kate found that she had put on 6kg since the day of her surgery - all fluid. This prompted her to call her specialist and present to the nearest emergency department. An urgent CT scan was performed that revealed her abdomen was full of fluid. Doctors were unsure at that point whether the origin was Kate's bowel or bladder. She had a catheter inserted to drain urine, and multiple doses of intravenous antibiotics to treat sepsis, a serious state resulting from infection spreading to the bloodstream, which for Kate was dangerously effecting her kidneys. Furthermore, she faced another surgery urgently to deal with the complication, being told that if the fluid originated from her bowel she would likely end up with a stoma; if from her bladder, then it would need to be repaired - a frightening thought to face before yet another surgery.

The emergency procedure took four hours, which revealed the laparoscope during the initial surgery had perforated the bladder, allowing fluid and urine to fill the abdominal cavity - an extremely dangerous complication. The bladder had to be repairs, as well as an abdominal washout to prevent serious systemic infection. When Kate awoke, her catheter remained, as well as two abdominal drains to drain away excess fluid. Her hospital stay lasted five days. The catheter remained with her upon discharge. "Fingers crossed it will come out next Monday!" Kate says.

Kate found out that her initial surgery discovered stage three endometriosis. She had a Mirena IUD inserted and has been started in progesterone based medication to help manage her symptoms. Additionally, she is researching a new specialist for a second opinion after her experience.

Kate's story is a timely reminder for us all that finding the right specialist is important, not just to feel supported and acknowledged, but to ensure that we receive the best quality surgical care. It's okay to ask your specialist about their surgical experience, their approach to surgery, and their professional memberships. When researching, look for doctors who have experience with excision surgery. Membership with AGES (Australian Gynaecological Endoscopy Society) indicates your doctor has advanced laparoscopic surgery experience. Remember, it's your body, and it's okay to seek another opinion if you're not comfortable. While complications like the ones experienced by Kate are uncommon if your surgery is attended to by an experienced practitioner, it is important to acknowledge that they do happen. Be your own advocate and take control of your endometriosis journey by being informed and getting the support you need.

QENDO is here to support you on this journey, our resources and support line (3321 4408) are available to you!

Thank you to Kate for sharing her story. If you would like to write for the QENDO blog, please email our blog coordinator here.

The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition.To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.