Endometriosis UK
34,829 members31,043 posts

Hello everybody - advice needed if possible :(

Hi everyone,

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.

9 Replies

I believe that you do have raised levels of that with endometriosis as I had a very weird conversation with my Dr about it once. Endo is scary because of its unpredictable nature. Those of us that have it end up having an odd relationship with our own bodies. It is unlikely that it is cancer. When I had my scan done and they found a cyst I was going through exactly the same process of terrified questioning. I was googling the terms they put on my scan results as nobody explained it and worrying myself stupid.

I hope your girlfriend gets through this time in her life. It sounds as if you are caring and supportive.


O wow. Hang in there. I hope you get some rest. Once the operation is over you can get a definate on the cyst. Until then try not to worry. The doctor is under obligation to discuss risk. Love to you both.



Yeah u can have raised levels with. Endo mine was and the doc told me to get an emergency appointment!!! Worried sick I was, thankfully it wasn't cancer just the dreaded endo. I have to say you sound so so supportive reading things and looking things up its nice to hear, keep up the good support your girl friend will need it A LOT!


Hello. Please try not to worry . They do automatically check for cancer when there are chocolate cysts. I had 7cm cyst in one ovary & was told by my gynae the extreme pain is when the cyst leaks.

Obviously your girlfriend has a difficult situation with having such complications but the lap surgery for the cysts & proper diagnosis is fairly simple. I had my cyst drained by laser rather than removal. Her surgeon will decide which method she prefers.

It sounds like you have found a very good gynae & she has taken time to explain things well.

Lots of luck to your girlfriend & hope you know more soon.


Thankyou all for your replies its definitely eased our minds hearing it from the people who have been there!

I will be back on here with any updates and in the mean time will just keep my fingers and toes firmly crossed!


hi RUFC I cannot offer any advice as I don't have the same conditions as your girlfriend but all that I can offer is my support. She truly sounds in the hands of a very experienced gynae consultant - you are both brave xxx


I spent a year having blood tests done for a raised CA125 that just kept going up and down all the time, then I had an internal scan and a dark shadow on my ovary was found. The C word was mentioned. Basically I almost cr****d myself with worry! I had a laparoscopy. The dark spot was a chocolate cyst and I was found to have stage 4 endo and NO CANCER! I would say do not worry. : ) All the best! X


Please please try not to worry, my CA125 is very high, can't remember the number but I was terrified when they mentioned the C word to me, it is such a tiny chance but they really do have to mention it to you but with everything else she has going on it really sounds like she has a large cyst. Just hold on in there and all the best xx


I am only 26 & have had chocolate cyst rupture at 19 and ended up having a major laparoscopy on live endometriosis & scarring and I've gone nearly two years pain free- hopefully the surgery will make a massive difference to your girlfriends life (especially in terms of pain) Glad she is getting the help she needs & has lots of support from you xxx


You may also like...