Life after Surgery

[Leenie0811]

Morning Ladies,

I just wanted to find out from people in general what their experiences have been like since having surgery? I had my lap nearly two years ago (July 2017) and then I had the mirena coil as a way to prevent my endometriosis from coming back post surgery.

I have since decided to remove the coil after having it in for approximately 12/18 months as it was giving me a lot of side effects but I feel like my symptoms are going to worsen. When I discussed this with my doctor they said I need contraceptives to stop the cells coming back. Has anyone else been told this? I was always under the impression that contraceptives mask the endo.

Thanks for reading.

Leenie

[rachel239]

I've just posted about a similar issue - although I've had my coil for 2.5 years now. As far as I'm aware, hormone treatment isn't a reliable treatment for endo and I'd seriously question what your Dr said about 'stopping the cells'. Endo is progressive and I'm fairly certain hormone treatment only plays a small role in *potentially* inhibiting its development/spreading.

[Leenie0811 in reply to rachel239]

Thanks for you reply I'll go check out your post, I was really confused when the doctor said that as I've been on contraceptives for a long time and when I had my lap/excision surgery they found cells and adhesions all down my pelvic wall and bowel etc. I was lucky I didnt need any intervention with my bowel they had just caught it in time.

The coil really made me feel odd, like I could feel it all the time and although I was having next to no periods on it I kept getting boil like spots near that area which my GP said could be down to the hormones being pumped out. This was really uncomfortable and I struggled for a long time with weight gain etc. but powered on thinking it would get better.

Now that its out I have noticed a difference in the bleeding but the pain has always got progressively worse, I think when you describe it at a progressive disease it will be inevitable once youve had surgery having further surgery is on the cards. I had a friend who had medication to artifically start the menopause but she said her experience was so bad she wouldnt recommend it to anyone

[rachel239 in reply to Leenie0811]

Sorry to hear about your struggle 🌷

I had also been on numerous pills etc. before I was diagnosed, so obviously the disease develops regardless.

The coil is so strange - sometimes I swear I can feel it inside! It's making me grow a beard too, which is great 🙄

Glad I could help! endometriosis-consultant.co...

This is a good read too!

[Leenie0811 in reply to rachel239]

Thanks for the info sheet that’s really helpful! It looks as if whatever you take to try and help the pain whatever it is will only be a temporary fix.

I’ve tried looking at food triggers as well as lifestyle; trying to remain active and healthy eating have helped me a lot, until they make some kind of breakthrough it looks as if what we’re all doing at the moment is all we can do!

I had no idea the coil could do that, I did feel like if I was laid a certain way at night I could feel it, I can’t describe the feeling it was really weird!?!?

[rachel239 in reply to Leenie0811]

Part of me wonders if food triggers my flares and bloating?

I know, I can only describe it as a grating feeling 😐

[Leenie0811 in reply to rachel239]

Yeah mine was almost like it was leaning on something which felt horrible, I found personally reducing and then cutting dairy has made such a difference and I used to be the biggest cheese eater going. I never ate a lot of meat so now when I go out I mainly prefer getting the vegan option and I cook from scratch to minimise processed food.