Severe pain triggered by sitting or lying down- does anyone else experience this?

[JoMarch15]

Hi all, my first post on here!

I was diagnosed with stage 2 Endo after having a lap last December. The surgeon found it in the space between my womb and bladder, womb and bowel, and around my left ovary and all down my left pelvic wall. It was excision surgery and he took out everything that he could see. But the pain still hasn't gone away.

I get pain in the 10-14 days before my period and it's always triggered by sitting or lying down. If I sit or lie down for more than half an hour I get excruciating pain. It's so bad that it makes me sick and I can pass out. Painkillers, TENS, heat etc don't do anything. It lasts between 20 minutes to a few hours and in that time I cannot move at all. The pain I get during the rest of the month is so much easier to deal with.

The surgeon's offered Prostrap which I don't want at the moment. I had the Mirena replaced during the surgery and I ended up feeling very suicidal, so I'm trying to avoid more hormones until I'm absolutely desperate. Both the surgeon and specialist nurse have said that they've never seen anyone else whose Endo is like this and they don't know why it happens when sitting or lying down.

Does anyone experience the same thing? Does anyone know what this is or why it's happening?

I'm so fed up. I really hoped that the surgery would make things better, at least for a while.

Thank you 😊

[redpot]

hello,

I'm really sorry to hear that. I also had excruciating pain at times when sitting down or walking, like you to the point of throwing up sometimes. I had 2 laps and they took my left ovary out the 2nd time. What happened for me (it may be different for you) is that after the 1st lap, I developed adhesions (when scar tissue sticks together) on top of endometriosis returning, meaning that depending where it is and which parts adhere to which, some positions/movements can become very painful.

I'm now a year after the 2nd lap and it's returned again - initially I thought like you that I'd be completely rid of it after the 1st surgery but I've come to realise that it is more of a chronic issue. I'm now trying another type of hormone and see if I get on with it (I was given a Zoladex implant a few years ago but I had to have it taken out as I felt awful with it).

I really hope it gets better for you and you find some ways to relieve your pain.

[JoMarch15 in reply to redpot]

Thank you for your reply. It sounds like you've had a really rough time of it! Could adhesions have formed so soon after my first op? It was only 11 months ago.

I find that if I can stay standing and walking, it stops the pain. It's only when I sit or lie down that it becomes unbearable.

I think it's just something that I'm going to have to learn to live with, or consider more hormones.

[Mindfullness4791]

I'm sorry to hear this. I have a provisional diagnosis of Adenomyosis and find sitting hard. Unfortunately I sit at a desk for 9 hours a day. I make sure I have a cushion to sit on and it really helps. X

[JoMarch15 in reply to Mindfullness4791]

Thank you for your reply.

I've heard of Adenmyosis but don't know much about it. I'll have to do some research. I have looked at getting a cushion to put between my knees at night. X