Newbie to the world of endo - can anyone ... - Endometriosis UK

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Newbie to the world of endo - can anyone offer any advice whilst I await treatment?

KnittyNora profile image
3 Replies

Hi all.

I am new to this site and to the world of endo. I was recently diagnosed with endo after an elective laparoscopy. I have been suffering extreme abdominal pains for the past 2 1/2 - 3 months. I have been in and out of hospital and been tested for various bowel conditions. After the lap I was told that I have large areas of adhesions on the right side and a black spot of endo on the left side. They have left the adhesions and endo be for now as they believe that they will just grow back. I am waiting to receive an appointment to see a gynae after being diagnosed 3 weeks ago and for now have been moved to a new pill (dianette) and am taking a new type of painkiller (like tramadol but without the sleepy side effects).

I also have cysts on my ovaries (first discovered when I was 16) and have been on the pill since I was 14. My cysts have grown and so has the endo. I used to take cilest but this gave me migraines. I tried cerazette for a couple of years and have now been taking dianette for two months. I am 28 next week and worry about my chances of conceiving. I have made many changes to my lifestyle over the years to prevent my condition from progressing - losing over 5 1/2 stone (low gi diet /healthy eating), taking up exercise and generally becoming more active and health conscious. I hope that a good gynae will be able to help me prevent the rapid spread of endo and adhesions and be able to help me choose the right method of treatment for me.....at the moment, I am a bit lost :(

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3 Replies
LauraLou1983 profile image
LauraLou1983

Knittynora,

I know how you feel like others on here. I had to change my whole diet to help me with my endo, I do still eat healthy but it came back and spread so I had to get referred to Arrowe Park in the Wirral. My right ovary got stuck to my pelvic wall which caused so pain. I have been given tramadol (but feel sick and sleepy afterward so take it when I go sleep) and Oramorph as I was in so much pain, it felt like I was being stabbed on my right side all the time :-(

I also have cysts as well but hospital won't operate due to my endo ops I have had.

I know there is no cure well without having a hysterectomy. Another option is having the marina coil that can keep it at bay I have that and yeah I get pain still but at least now I'm only taking paracetamol, co-codomal and nurofen plus (ibuprofen and codeine)

Hope that helps

Lauralou

KnittyNora profile image
KnittyNora in reply to LauraLou1983

Thanks for your reply Lauralou.

I've had a bad couple of days and have been experiencing quite a lot of pain despite taking my full quota of painkillers :(

Hmmmmm........fed up doesn't quite cover it :(

Hope you've had a good week xx

LauraLou1983 profile image
LauraLou1983

I know how you feel I was like that feeling like you are it's not nice by any means :-(

Hope you have a good week as well and not in to much pain xx

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