This is a long story so bear with me !!
My girlfriend has had painful periods over the last five years or so. She was on the pill up until September last year and when she came off the pill she initially had less painful periods than when she was on the pill. Over the last few months periods have gradually become more painful and in July she stopped having periods altogether. After 6 weeks without a period we took a home pregnancy test which was negative so off to the doctors we went! After the doctors initially suspected possible diabetes, then IBS (due to constipation) they took some scans which revealed a 9cm ovarian 'cyst'. The scans also showed huge inflammation of both her kidneys (one because it was only working 1/5 as it should, the other because it was doing 90% of the work for the other kidney). This is a problem she had four years ago due to a 'kink' in her tube that connects her kidney to her bladder although the doctor this time suspected this could be caused by the pressure from the cyst. The Doctor said he wanted to insert stents in both kidneys (this is something she had in only her right kidney four years ago due to the 'kink') before the problem with the cyst could be sorted.
Last Friday on the 18th October she came on her period and on the Sunday and Monday just gone she was unbearable pain to the point where she was hunched up in a ball with a hot water bottle crying her eyes out. She has a high pain threshold so it was clear that this wasn't right and after a phone call and visiting the walk in centre she was referred to the hospital where they performed an examination and blood tests and said they wanted to operate in the morning as the cyst may have twisted around her ovary. They kept her in overnight on morphine and put her on an antibiotic drip due to an infection that they could not locate although they believed it could be the cyst. The next day, after discussion with the doctor who was dealing with the kidneys, they decided they could not operate on the cyst until the kidney stents had been put in....
On Thursday her kidney stents were put in and the doctor said that the gynaecologist at the hospital had 'taken an interest in her' and that she had an appointment with her the next day (yesterday) at 5pm.
We arrived at the hospital yesterday and a further examination was done by the gynaecologist before she talked us through the next steps.
She was very thorough going through my girlfriends history and told us that she believed that she had endometriosis. She talked us through the diagnosis and operating procedures to deal with the endometriosis and the 9cm cyst and mentioned that things may be complicated if her organs are 'sticking' due to the endometriosis. She showed us lots of pictures of endometriosis and talked about chocolate cysts which could possibly be what the 9cm mass is.
Here is the bit that has drove me round the bend and sent me out of my mind with worry.....
She said they needed to look at this to check if the cyst was malignant due to the fact she had raised blood at 148 (I'm assuming CA 125?). When we asked her questions she did say it was only a small chance it could be cancerous but she had to be honest with us. She did however confirm that it is not unusual for people with endometriosis to have 'raised blood'.
My girlfriend is only 31 (32 in a couple of months) and the Gynaecologist did say that their were lots of positives due to her age but as I say I am absolutely driven out of my mind with worry. The fact the 'C' word was mentioned has made me worry even more than her I think. I cant sleep or think about anything else! I was hoping that maybe some of you could shed some light on this?
I have looked into endometriosis intensely over the last 24 hours so my thoughts are with you all.