Endometrioma cyst with septum & symptoms but normal CA125?

[Kamiko]

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.

[TinaB1]

Hello Kamico.. and welcome.

You're very young to have gone through so much. I don't know why you can't get in contact so that you can fully understand your results. You need some answers so that you can get a diagnosis, treatment and then be able to move on with your life.

A raised CA125 can be due to inflammation, fibroids and other benign conditions. It can also be raised in the presence of benign cysts which are a lot more common than Ovarian which is relatively rare. I say rare so as to comfort you as it's easy to think the worst.

I think you need the help and support of your GP. I would suggest that you go there to ask about your blood results and to find out when your laparoscopy will be. It is true that once a laparotomy has been done, you might have formed scar tissue making it harder to make the op simpler, but many patients have laparoscopies after major surgeries. I have myself.

I know that friends here will support you but if you need to talk with someone, why not call the Ovacome helpline on Monday?

Love and hugs. Xx

[Kamiko in reply to TinaB1]

Hi Tina. Thank you for your response.

According to my GP, now that my case has been handed over to gynaecology she's not able to access their tests and so can't tell me anything. I don't know if this is true or not but I'm not able to contact my gynaecologist as I was never given any contact details. I've just been told that I can ask anymore questions at the appointment with the surgeon but that isn't till May.

I'm going to make an appointment with my GP tomorrow regardless as my symptoms are getting worse and I feel I need stronger medication. Hearing about your laparoscopy has reassured me somewhat so thank you

I'll also definitely call the helpline on Monday and hopefully gain some help through them.

Thank you again and I hope your health is well x

[TinaB1 in reply to Kamiko]

You're very welcome. Xxx

[Nancy222]

That's an awful lot going on for you, Kamiko, so here's a big hug. Sounds like you've got some complex issues going on.

Is there a way you can access copies of your tests? What I'm about to say might not work for you, but when I started all this back in February 2016, I got copies, took them to my GP, and asked, "What does this mean?" Sometimes I had specific questions, other times my questions were general. I let the admin assistant to the GP know I would be asking questions about my situation.

That might not work for everyone, but my GP has said that he feels more involved in my treatment because of this. (I also make sure I have his admin assistant scan copies of my tests into their system.)

I think it's fair to say that most of us have difficulty taking in all the information at appointments. Do you have someone with you?

It's really good that you're taking steps to see your GP. And if he/she can't help with "What is a septum in a cyst?" it might be time to find a new GP.

And finally, I will say that asking "Why am I taking this test?" and "What does this mean?" have been questions that were difficult for me in the beginning, but got easier the more I asked.

I wish you all the best and hope you get the answers you need. It's a lot for you deal with.