Hi everyone. This is my first post so apologies in advance if I type anything I shouldn't! I've read so many posts on here hoping to gain some kind of understanding on my current situation and have reached the point where I feel it is just best to ask. It's a bit of a long story but I'll keep it as short as I can!
When I was 20, I made an appointment with my doctor as I was having irregular periods and when I did have them, I would be in a lot of pain and would often feel sick the first day or so. I am also a type 1 diabetic and had problems controlling my blood sugars as I seemed to need more and more insulin. She sent me for an ultra sound and a ca125 test. They weren't sure what was happening internally at first as the scans weren't clear but my ca125 was around the 800 mark. I wasn't told this till 3 weeks before my operation. About a month later after many ultra sounds and CAT scans I had a laparotomy and they found I had two borderline endometrioma cysts growing along my fallopian tubes that I believe they said we stage 2 (one was 8cm and the other 11cm. One on each tube). They apparently had to peel them off the tubes but didn't remove anything else. I didn't need any further treatment and went for regular check ups and scans for the next 2 years.
I am now 25 and since August last year I have noticed that I have been gaining weight in spite of me trying to diet and exercise (I was 10st 6lbs and went up to 12stone 7lbs). As well as that, my blood sugars have been rising. I have been feeling tired, bloated,and having irregular periods. Where as the last time I had the cysts, I would often go weeks without a period. This time I seemed to have a period and then 1 week later I would have another and so on. The blood was often heavy but would alternate between appearing to be a normal period and starting the period with heavy black old blood. I was also unable to have sex with my partner as it was very painful. My breasts have been very tender and I have had pain in my back for a while. In December, I started to get very sharp pains in my abdomen as well as often feeling nauseous. I haven't had much of an appetite and when I start to eat, I feel sick.
My doctor finally sent me for a ultra sound and ca125 in January/February. My ca125 came back as 26 but they found that I had 2 cysts. The one on the right they weren't concerned about but the other is 11cm by 6cm. She said that the pain was caused due to the size of the cyst. She couldn't confirm but said that they believed that it was a blood cyst and that it had a septum in the middle. She has put me in for a laparoscopy but because I have had a laparotomy in the past, the scar tissue may mean that they will need to perform a laparotomy again and I have an appointment with the surgeon on the 1st of May where I presume we'll discuss things in more detail and decide on a date.
I have no idea what a septum in a cyst is and if it's even significant. I am happy that the ca125 test came back normal but she also sent me for a HCG, AFP and CA199 (I have no idea what these are for). This was at the end of February but I've not heard anything from them in regards to the results and am unable to contact them. The pain has gotten significantly worse and I now have 60mg codeine and 50mg cyclizine tablets to help with the pain and nausea. As of February, my periods have just stopped and I have broken out in terrible acne all over my face and neck.
I don't really know what's going on and I was just hoping that anyone who has had or has similar symptoms to me could give me any advice. I don't know the significance of my cyst this time and the symptoms concern me as I didn't have these last time. I feel very much left in the dark by my gyn doctor and it's making me more anxious than the actual cyst.