Should I have lap?

Hi all:

I'm 48 (two kids). Lower back pain for 3 years. MRI found 1) early oesto arthritis and 2) A 4 -5cm chocolate cyst (scanned 6 monthly and unchanging).

My bleeding is slightly irregular but managable. My back pain is kind of always there but not awful.

I'm on the waiting list for a lap now, - in Glasgow, but wonder if I am making a mistake. I dread surgery, but do you think I ought to have it, just to see what's inside and get the cyst removed? I trust my gyny surgeon as much as I can. He has agreed in principal to refer me to Edin (accredited centre) IF extensive endo is found.

Thanks for advice

kira

7 Replies

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  • Hi

    With your age im sure you wld like to do this once as there is recovery to think of and twice wld mean more scar tissue.

    I have noticed that women on here seem to be more depressed and anxious after going in once and then waiting.

    I dont usually say it like this,but i think you shld get the referral and go in once.

    There will be more with what you are describing and you want this done properly the first time.

    Dont have the first one and get the referral.

    U dont want two recoveries back to back.

    Kind regards

    Rose

  • Aim for one surgery. Each surgery causes adhesions and scar tissue which can cause pain.

    You need a specialist who can see with a scan what is going on. A very good ultrasound technician will be able to see if there are any further issues for example if your pouch of Douglas has scar tissue or if your ovaries for example are still free. (A general gynae won't be able to do this).

    Doing the research as you are and asking the right questions will prevent issues later. After your surgery you must get your periods stopped. Back to back pill or an injection (although I haven't found it effective).

    If a scan does show anything and indeed even if it doesn't you need a proper endo surgeon. They can cut all of it out, this will hopefully prevent regrowth.

    I hope things work out for you x

  • Thanks for these replies. My gyny had said that NHS funding is needed for an 'out of area referral' and I can't get that unless they do initial lap here in Glasgow.

    I know what everyone means by asking women to insist on this kind of 'expert patient' stuff....but in practise i find it difficult, especially if the doctors are nice.

    My GP is also my friend, but must refer to the gyny and he has said he can't refer for an initial lap. I have had many scans - my gyny let another gyny colleague scan me for a second opinion last year, but none of them go into the detail I find on this board. At least not with me. I had never heard of pouch of douglas before reading here...

    As you say, Starstellar, even if further scan doesn't find detail, I can't access the centre in Edinburgh without initial lap surgery at home. When I phoned them, a nurse on the helpline said the same.

    I wish I didn't have this. I had no gyny problems my whole life until age 45. Now at 48 I just want to get on with the menopause and hope it all quiets down. I find it all such an unwanted dilemma.

    -K

  • I wonder if in your case it might just be better to suppress it for as long as possible.

    I took Yasmin for several years back to back with maybe two or three cycles a year and I felt very well. This was after having one large cyst removed. They said anything over 6cm needed to come out and mine was pressing on my bladder. If it's stable and not hurting it might be best to leave it.

    I'm overseas at the moment and it's been hard, I had my appendix out and they just left the rest of it. Which I didn't know. Then because I had come off birth control it got worse very quickly. I had real problems finding a surgeon, in the end found this amazing Brit (after lots of Chinese Drs) and had a huge surgery. (I'm not racist but when you are sick you don't want the extra challenge of language and cultural differences)

    He's back in the uk but in private practice, I can pm you his name if you want.

    Hope you get it sorted. But multiple surgeries are hard, mentally and physically. I had two in a year plus one round of IVF and kept working. Tough doesn't describe it!

    Best wishes x

  • Thanks Starstellar,

    yes, this is my core dilemma - whether just to leave it or not.

    I have left it for 3 years and it is mostly stable - at one point it seemed to have shrunk from 5cm to 4cm....but I'm not sure where it is now.

    I think I called for another apt and got myself on the waitlist after reading scare stories here about how endo can spread and how it can be more widespread than scans show.

    My main problem is lower back pain - but there was also a diagnosis of early stage oesto arthritis at MRI 3 years ago... however I do think the cyst adds to the back pain - it's always worse on my left side where cyst is. But it is live-able-with.

    But who knows? Maybe I should have a lap. Of course it would be ideal to have in in Edinburgh accredited centre - but if that is not possible - it seems not to be - then the price might be more than one op (?)

    My NHS glasgow gyny IS so nice and respectful though. I WANT to trust that he can do his best to remove what he finds, provided it's not extensive.

    it's just so tricky to decide, given that I hope I'm 1 or 2 years away from menopause.

    Sounds like you have been through tough times. I hope things improve. Thanks for now,

    -K

  • Why don't you try the birth control option, or progesterone only pill (I'm taking visanne at the moment) and see if it reduces your pain symptoms. This will help you work out if the back pain is endo or arthritis. My pain follows a clear cycle, now I'm back on the visanne after the IVF treatment I think things are settling down.

    Any sign of it changing for the worse get it looked at.

    Difficult choices for me now, all the IVF drugs make the endo flare up and it is so stressful. I don't know if I can keep doing it. I love my husband and would have loved to have had a child with him but my own mental and physical health is more important. We have a great life and love travel. As long as I can keep the pain manageable then I will be ok.

    Best wishes with what you decide. X

  • Hi guys - an update. I'm booked for my first lap and cyst removal on tue this week.

    Due to Scottish NHS, I am obliged to go to my local gyny for this lap as he can only refer to specialist centre if he finds complexity. I believe he would have to apply for 'out of area funding' if he thinks it is warranted.

    The gyny seems well respected and has a lovely, kind manner, so I hope things will be okay.

    K

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