I started seeing a gastro doctor early 2014 after suffering with chronic IBS for years, since having my gallbladder removed in 2002.
I have IBS symptoms every day to some extent but around three years ago i started to get monthly pain attacks, which coincided with my periods and would mean i literally couldn't move for a day each month. It would affect my stomach muscles so bad that for the following two days i would still be in agony and not able to move as normal.
The gastro doc did a number of tests, MRI and CT scan and concluded all was ok. He did at first say endo was a possibility and put me on the pill, but it made me feel awful, made my IBS much worse and didn't stop the pain attacks, so he concluded it wasn't that.
On the last MRI scan they found an ovarian cyst. The gastro doc said it was nothing to do with my IBS and a separate issue and he concluded he couldn't help me any further and i was referred to a gynaecologist to follow up on the cyst, as it was a complex one. My grandmother died of ovarian cancer and so this was a huge worry for me. All my blood tests showed really high CA125 levels and it was a very stressful time with little information being given.
With my family history i was referred to a specialist surgeon in London and i was being operated on a week later. During the surgery, which they did laparoscopically, they removed one of my ovaries, which was completely covered and a cyst from the other ovary and lots and lots of tissue. I then had to wait 4 weeks for the results, when it was confirmed it was stage 4 endo. The doc said 'it was a right mess in there'.
The surgery was hard and it took me a long time to have minimal pain. I was off work over a month, when originally they said only 2 weeks, and i was made to feel bad by my GP when i couldn't go straight back. i had asked the surgeon to take everything if he thought it was needed, as i have no need for my ovaries, and didn't want to be faced with repeat surgeries, but he wouldn't even consider it as i was too young, i am 39.
Since the surgery periods have been heavy, but that has always been the case. The first after surgery was awful, but each one since became easier and now just the normal heavy i used to have. I don't have the pain attacks from my IBS each month, but i have awful period pains, so now have a day off each month, which is better than the 2-3 days i used to have. I have always had bad pain, but the pain attacks were worse and as were happening at the same time, sort of pushed that pain to one side.
i had my 6 month appointment a couple of weeks ago and was referred for an ultrasound to make sure all was ok and as it should be. We also discussed treatments and he said there was no cure and it would come back and that as i couldn't take the normal pill i should try the mini pill, although there was only a slim chance it would help.
Firstly i don't really want to take the mini pill if there is only a slim chance it can help. My main reasons for this is the interaction with my IBS. Pretty much every medication makes it worse. The only pain medication i can take it buscopan and 1 dose of paracetamol in 24 hours, anymore than that and i get really bad. So as you can imagine my recovery after last op was longer as i couldn't take the pain meds. I am also concerned with the side affects, such as the increased risk of various female cancers, for DVT's, as i have a family history of those, and also i suffer with panic and anxiety and so do not want artificial hormones to interfere with what i already have to cope with. Is this understandable? obviously if i was told take this pill and it will sort it out i would try, but his exact phrase was 'slim chance' and it would make me feel awful for months whilst my body got used to it.
Are the risks of feeling worse and other side effects worth a slim chance.
Secondly i had a follow up ultrasound last week and today have had a letter to say there is already a multiocular cyst on the remaining ovary and the scan has to be re-done next month. Can it really grow back that fast?
i can't talk to the surgeon, he doesn't really want to listen to my concerns, especially those of an anxious worrier who always thinks the worst. This is just bringing back all the history of events from last year and i am thinking ultimately isn't it likely i am going to have to have the same surgery again?
I'm guessing that because the multiocular cyst last time was only endo, that they would assume the same, but they will never know for sure unless it is removed?
Does anyone have any experience of it coming back this quick or be able to give me some advice etc. I really thought it was all done, and whilst i have to deal with a day off each month, its better than what i had and i can cope with it as i know its not curable. I am used to feeling ill on a daily basis, and i can deal with all that.
thanks for reading my long post, would be grateful for any help