my endometrioma was missed during lap :'(

[dawntildusk]

hi everyone. I had a lap in nov where they were supposed to be removing an endometrioma and possibly my ovary and tube if not more. only to find the surgeon said there was nothing. I have been having problems since my lap so gp sent me for an urgent scan which I have had today. I was devastated to find that I have two cysts which they say both look like endometriomas. the lady doing the scan was amazed they have been missed. so now it looks like im back to where I was 5 months ago and now facing another op. it has been such a hard few months not only for me but my family too. I am dreading having to do it all again.

[Brownlow]

Hi Dawntildusk,

That's really too bad. Unfortunately endometrioma can be difficult to pin down. It could be that they burst prior to the op so therefore nothing was seen visually. If they burst they can grow back very quickly. This might explain why they are now being seen on a scan. I'm not an expert on these matters but I think you can have cysts that are embedded within the ovary. In this case surely you would not see a cyst when looking at an ovary during a lap. I don't know if it's possible to tell if there was a cyst on an ovary that previously burst.

Prior to your lap, how was it determined that you had an endometrioma? Did you have an MRI or ultrasound? Do you recall any excruciating pain in your side between any pre-lap scan and the actual lap?

If you do go for another lap to have them removed make sure the endometrioma are CUT out and not drained or lasered. Best way of ensuring they don't grow back but no guarantee. If it comes to ovary removal I suggest you make sure you hang on to one ovary and also be very clear that you know where you stand in terms of fertility before any op. If you want children in future any op concerning the ovaries could affect your ovarian reserve i.e. reduce the amount of eggs you have. This might not be too much of an issue depending on your age.

Good luck. x

[dawntildusk in reply to Brownlow]

hi thank u for your advice. I am 34yrs old. I had transvaginal scans prior to my referral. I was expecting another scan when I was referred to gynae however the consultant said straight away she thought it was an endometrioma and that she suspects I have stage 4 endo hence the lap. they didnt do another one. to be honest with u most of my symptoms are during my period however since my lap I have had spotting, discharge, and pains in between. this is unusual for me. I am feeling so deflated. has the last few months really been for nothing. should I be complaining?

[Hidden]

Hi there I am sorry to hear this. To reassure you though, I had the same on my right ovary picked up with an internal ultrasound 2 years ago. I have tried various different medical treatments but the biggest change in my life has been to learn to deal with my anxiety attacks. I had an internal ultrasound last October....... Ovary is now normal size and no sign of the fluid on the ovary. Keep hope, miracles do happen and keep believing in the magic of you.

hugs

Jen xx

[Brownlow in reply to Hidden]

Hi Rainbowdream,

I would also echo what you have said. So important to get on top of anxiety and stress. I use deep breathing, yoga and mindfulness meditation.

Dawntildusk,

This is just my approach but I don't feel that the solution lies entirely in modern medicine. For me it has been only one aspect of my treatment and for now I am avoiding it. I have endometrioma for over a year, possibly longer. One of my ovaries is stuck to my bowel. A year ago I completely changed how I ate and how I lived and while I still encounter pain I'm in a better place. I cut out gluten and dairy, reduced sugar, reduced meat intake and rarely eat red meat, occasional alcohol only. I exercise more, meditate and do other things that would take too long to list here.

From Pain to Peace with Endo is a great new book by Aubree Deimler that I recommend. There is so much we can do to try to help ourselves and it's all documented in her book.

On the medical front, make sure your gynae is an Endo Specialist and not just a general gynae. If she's not on this list bsge.org.uk/ec-BSGE-accredi... go back to your GP and change your referral to someone on this list. Start asking the same questions that I asked in my earlier reply and discuss the possibility of a lap to cut out the endometrioma.

You can then decide on an op and/or changing your lifestyle. x

[dawntildusk in reply to Brownlow]

I will look up that book thanks. the hospital I am under is included on the bsge list but not with the doctor it shows. was thinking I will try to ring the secretary and see if it is something they can change for me. definitely want a surgeon who knows about the disease so they know what they are looking for. and I will make sure I ask about excision not laser. thanks for all your advice ladies it sure helps to talk to people in the same boat. x

[dawntildusk]

hi rainbowdream. thats good to know. I didnt realise endometriomas could go on their own. the hospital said that was why I needed to have the lap in the first place. i am finding it very hard to stay positive at the moment as I feel like it is consuming me. feel like I need a good shake up!!