Hi, I am 43 and have had an ileostomy since the age of 18. This was due to a toxic megacolon and only 3 months diagnosis of ulcerative colitis. I am desperate to hear any advice anyone can give me about a recently diagnosed 10 cm right ovarian cyst. Because of the fact that I was operated on 25 years ago, twice. Once for the megacolon at 18, then at 21 I had a proctectomy to remove my rectum. I am hitting a brick wall with consultants. The ideal solution would be to remove the cyst, but I have extensive, complicated abdominal adhesions. No surgeon is prepared to even attempt to go in because of the risk. I am in agony all the time with back, abdominal, and pelvic pain and have constant chronic gushing loose motions. I also have other complex conditions including two life-threatening skin diseases. My quality of life is nil at the moment. I really would appreciate any advice anyone could give me.
Don't give up searching for someone to remove it, it only takes one talented surgeon to say yes. I'm praying for you too, and don't you give up on prayer. You are in the midst of a storm, but they always end in sunshine.
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Hello,
Open surgery might pose problems. Have you considered minimally invasive laparoscopic surgery?
Get comprehensive imaging of the area: CT, MRI, ultrasound.
Consult with a surgeon who is experienced with the Da Vinci Surgical System. This is a very precise surgical tool/method.
Read answers to frequently asked questions about how to change your pouch and participate in activities.
Hi, I'm sorry to hear how you're feeling right now. Have you asked at what size they will remove the ovarian cyst? Have they said what type of cyst it is? Tried anything like hormones (birth control) to try to get it to go away? (Again, dependent on the type of cyst). Most doctors won't operate if it's under a certain size. When you look at that size alone, it doesn't seem big, but most ovaries are the size of an almond, so I can imagine the ovary it's on is not very happy. Are you able to get a consultation at a private hospital? I had a corpus luteum cyst the size of a grapefruit removed when I was pregnant, and I remember the back and side pain. Have they offered anything for pain? Even a muscle relaxer?
I had a large ovarian cyst removed years ago. Now, when I had my open mesh hernia repair and after I came to from the surgery, the surgeon came in and told me I had loads of adhesions and that he got rid of them all while in there. Would that be possible for you too? I mean to have the surgeon remove them all while he's in there?
Living with Your Ostomy | Hollister
Thank you so much for your encouraging words. I won't stop searching or praying. I hope this message finds you well and happy.
Thank you so much for replying. To be honest, I am disappointed with how I've been handled so far. I understand the NHS is under a lot of pressure these days, but I've had extensive terrible experiences in the past. It started in November; I went complaining of a lot of pain. I had a smear; it was clear. Then I had to push for a transvaginal scan because the average waiting time was 16 weeks. I had it, and then they found the cyst; it's 10 cm. I've only had one appointment with a gynecologist. They did blood tests and suspected cancer. They gave me a CT instead of an MRI. I had to wait for the MRI, and I was in the scanner for 1 hour and 10 minutes. The gynecologist assured me someone would be in touch with the findings. Nobody got in touch. When I spoke to her secretary, she asked if I wanted to see the doctor again. I obviously said yes. She said, "I will give you the next available appointment." I still haven't been; they made me wait for nearly 7 weeks, then sent a letter to say my appointment was canceled at the beginning of May. Now it's the 10th of June. I received a letter just after I called the secretary to say the cyst is not cancerous and if I want further scans to tell her, 6 months apart. If the two scans show no change, I can be discharged! Also, I need to understand that surgery would be very risky. So I still haven't had a conversation with anyone about what type of cyst it is, how quickly it will grow, and what my options are. I'm just very frustrated. I think I'm going to go to the appointment. I know I will be very disappointed and then look into private options.
Hello, thank you for replying. I have a lot of questions to ask. Just talking about it to people who understand helps. I hope this message finds you well.
Hello, thank you for replying. Your info is very useful, especially the Da Vinci Surgical System. I've never heard of this. I'm very grateful for any information. I hope you are well.
Hey there,
They can remove your cyst by doing a laparoscopy. There is no cutting you open. I have been where you are, and I am sorry. I know how painful it is; that's how mine was done. How long has it been there, and have they given you any pain meds in the meantime to help with the pain? There will be a gyno that will help you. You might have to search a bit, but don't give up. Find someone, and don't give up until you do find a gyno doctor that will help and who understands everything else you have going on.
Learn ways to adjust to life after ostomy surgery.
Hello,
Sorry to hear about the continuing problems you're encountering receiving prompt, proper care.
The Da Vinci system: Precision robotic surgery. The machine is positioned next to the patient, and the surgeon sits at a high-technology control panel. Ultra high-definition cameras provide the surgeon with detailed, magnified views of the surgical area. The robotic surgical tools feature precision articulation; they can move finer than human hands and perform maneuvers human hands cannot. Most hospitals around the world have invested in acquiring this system and having surgeons trained in its operation.
In 2022, I underwent 7 hours of emergency exploratory surgery, resulting in a colostomy. My surgeon used the Da Vinci system for most of the operation.
In my life, this is what I've done:
You must be your own advocate for your care and treatment. You must learn as much as possible about your condition, tests, and treatments. You have to be an educated patient. To the medical staff, we're just another case. But this is us, our life. You have to be a "pain in the ass." If you're not assertive, you go to the end of the line.
My hospital is near an airport. People fly in from all over the world for treatment they cannot readily get at home or, in many cases, care they were denied.
Continue to post updates. This will help many others.
Alibob, you need to change your narrative. Your complaint should be about the significant pain you are experiencing. When prioritizing resources, the order of precedence is usually: 1) life-threatening, 2) baby deliveries, 3) gunshot wounds, 4) severe pain, 5) elective surgeries. The order changes with the different health systems, but elective surgeries are nearly always the lowest priority. In reading your narrative, you are being viewed in the elective surgery category, which is probably why you are being told if no growth is detected, your case will be dismissed.