Hi ladies: Hi all. I'm new to this site but... - Endometriosis UK

Endometriosis UK

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Hi ladies

Cbs2015 profile image
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Hi all. I'm new to this site but feel like I need to talk to someone else that is going through this horrible disease. I was diagnosed 3 months ago after years of medication tests etc for a variety of things but they finally found I had a severe case of endometriosis and couldn't do anything with it in the diagnostic laparoscopy. I have been put on hormone tablets to make my body think u was pregnant to stop it from developing. This was for 3 months, has anyone else had this?? Not sure if he wants me to have more surgery but these tablets don't seemed to have helped me. I'm in so much pain and it hurts to even wee never mind trying to go the other way! Which that in itself causes other problems like constipation. I'm at my wits end with it and don't know who else to turn to. I've been told my right ovary is covered and the surrounding area.

I'm at the end of my 3 months hormone tablets and I'm terrified of how my body will react to the change. Has anyone gone through anything similar??

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Cbs2015
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Daisy4567 profile image
Daisy4567

Hi, I'm not sure I can be of much help, but didn't want to read and run. I haven't had tablets myself, I've been on the Decapeptyl injection for some time now and it works amazingly for me. It does come with it's side effects but for me, personally, they are completely manageable and the benefits outweigh the negatives.

I hVe no periods, no bleeding and no pain. My hot flushes are controlled with Livial add back therapy. I have dropped an inch in height- which is not great BUT considering I bled three weeks out of four and was in unbelievable pain I have to weigh up the pros and cons.

I've been on it, on and off for two years now (mostly on, think I only had three months off it after failed IVF) xx

Cbs2015 profile image
Cbs2015 in reply to Daisy4567

Thank you. I was offered the injections but went with the tablets on his advice. Just nice to know I'm not the only one suffering 😊

Lcbxo profile image
Lcbxo

Hi, I have suspected endo and I've been put on a three month course before I've even had surgery so I know how you feel! It's horrible and I don't know if the pill will help but I hope so. Which one have you been given? Xx

Cbs2015 profile image
Cbs2015 in reply to Lcbxo

Sorry for late reply I'm not really used to how this site works so just seen this. I was on provera. Finished the course now. At first I was better then as the weeks went by my symptoms came back. Since I came off them I have felt awful. So much so I have brought my gyno app forward and seeing him next month instead of January so will have to wait and see what he says. Everyone is different so hope they work for you xx

Lcbxo profile image
Lcbxo

Hi again, it sounds to me like you need a lap to remove the endo if they didn't do anything in the diagnostic one. If you're still experiencing pain they shouldn't really be treating it with pills I don't think - the disease needs to be removed. I would force your gyne to book in more surgery if I were you. Good luck and I hope the appointment goes well xxx

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