Hi, my name is Nicola, I'm 43 and live in Yorkshire in the UK with my husband and 7 year old son.
In January this year I thought I had a urinary infection as everything felt heavy down there and I had some pain. I went to see the Dr who said my symptoms were a bit strange. She did a bit of prodding and poking and found the source of the pain - my ovaries. I told her that I was diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was 18, so she sent me for an ultra sound scan as she thought maybe one had grown.
The lady operating the ultra sound got very excited when she scanned me. Apparently to diagnose PCOS she needs to count 8 cysts, my ovaries were covered in hundreds of cysts, so many she couldn't count them. She had never seen anything like it before and she had been doing this job in over 32 years! She said she couldn't see any sinister, I might get referred to Gynaecology but she wasn't sure what they would do. My Dr got my results and referred me for an urgent appointment with Gynaecology at my local hospital. I was seen, by this time I had no symptoms and no pain at all. However, I spoke to the Gynaecologist, she took some bloods and asked me to book an MRI scan at another hospital. This I did. I then got a call from a Gynaecologist at the second hospital to tell me that he didn't think it was cancer (I didn't know they were looking for cancer!) but my scans were being sent to Christies (a specialist cancer hospital) in Manchester for a second opinion. However, I would probably need surgery! This took me back - up to this point I thought it was just polycystic ovaries gone mad!
I then had a cancer nurse phone me up the next day to ask me what I knew about my condition. Turns out that the Dr wasn't being completely straight with me. It was thought I might have a rare cancer called Pseudomyxoma Peritonei (hence why they were sending my scans to Christies), I had an 8cm wide 'mass' of cysts on my left ovary and fallopian tube and more on my bladder and womb. I was being referred to the Royal Preston Hospital to see a consultant who had experience of this.
I saw the consultant who told me that I needed a full hysterectomy, bilateral salpingo-oophorectomy, omendectomy and appendectomy. I was also booked in for a CT scan. My operation was scheduled for 11th April (luckily this was 2 days after our planned 3 week holiday in Japan which was very well timed - kept my mind off everything). In the meantime Christies apparently discussed my case but for some reason, they weren't sent my scans so weren't able to comment on it that well. I went in and had the operation, I was in hospital for 7 days. After the operation, the consultant said that he suspected it was pseudomyxoma peritonei. He had to leave some cysts behind my liver as he wasn't qualified to go to that part of the body. I then had to wait another 3 long weeks to get the results.
We arrived to the hospital and I was seen by a Doctor I had never seen before. She told me it wasn't cancer, but inclusion cysts. I was stunned! I didn't really understand and certainly had trouble computing what she told me. She said that in her 9 years at the hospital she had never seen results like it before. She said that I was being discharged from the Royal Preston Hospital as they were a cancer unit and I didn't have cancer. She wasn't interested in discussing it and told me not to worry about the cysts left behind as they were non cancerous. They were referring me back to Lancaster Hospital and I was to follow up an appointment with them if I didn't hear from them in 6 months (I realised on the way back to the car I had never seen anyone from Lancaster Hospital - so how was I to do this?). I felt a bit let down that I didn't get to see the surgeon again and that I was given very little information on what condition I had - did I need the surgery I had just undergone?
Luckily, I have a very good GP, after a conversation with her, she phoned both the Royal Preston Hospital and Christies to find out what my diagnosis was. She found out that it is Cystic Mesothelioma. A very, very rare disease with under 200 reported cases worldwide, it is benign, nobody knows what triggers it, how it multiplies, but in 50% of cases it reoccurs after surgery and in very rare cases it can turn malignant. (The only treatment is surgery - so I did need it after all!) I am obviously concerned that I have a number of cysts left in me - could they trigger a reoccurance? I have been told to expect to hear from the Gynae dept of Lancaster hospital in 6 months or so and to expect a management plan of some sort of scans to check on me. However, my GP said, the Drs there wouldn't have heard of the disease, so the first thing they will do is google it to try to find some info about it. It seems like it is the blind leading the blind. Apparently my case is going to be discussed at Christies again, but I don't hold out much hope that I will hear from them - I have never heard from them, even though Drs keep expecting me to.
Just wondering if anyone else is out there in the UK with the same diagnosis? I would be very interested in knowing what treatment you have received and any management plan put in place for you. What type of scans are you scheduled to have and how often? Has anyone had a reoccurrence, and what symptoms did you have or was it caught in scans?
In the meantime it is 7 weeks since my op and although my tummy is still sore, I am doing well, luckily I live in the Yorkshire Dales, so I have been walking, walking, walking in the wonderful scenery here to get back to fitness. Obviously I have gone straight into menopause and am suffering from night sweats, bladder infections etc. I have been told I can't have HRT as it might trigger a reoccurrence. My GP has asked Christies to confirm this - but they haven't replied yet. Has anyone else been told the same?
Thanks for listening.