New and freaked out!

[Evalina93]

Hi! New here I recently had a laparotomy to remove a large cyst, and they found stage 4 endometriosis. Bit freaked as they cannot perform surgery due to too much risk to the organs it is on, and now have to search for a hormone treatment which works for me ... anyone have any top tips for dealing with the long hormone journey, without eating all the chocolate in the world?!

[Rachel_1666]

Hi Evalina ..

hope you have had a good week.

I am/was in a similar position as you they found two chocolate cysts one in each ovaries which they removed in March. They have also diagnosed my endometriosis as serve. After having that laparoscopy surgery procedure they put me on Zoladex (a medical menopause) which will “starve” the endometriosis. I am to be on this for them to go back in to remove it and unblock one of my tubes.

Being on the Zoladex will hopefully make it easier to remove.

Did your specialist not recommend something like this?

Let me know if you had any other questions..

Rachel xx

[Evalina93 in reply to Rachel_1666]

Hi Rachel, thanks for sharing your experience! As i am only 25 i don't think they wanted to put me on a medical menopause, and surgery would involve removing a section of bowel, so doing anything we can to avoid surgery! Fortunately, the hormone treatment i am on seems to be working right now; still eating all the choc in the world but got to see the pros and cons!

Thanks

[Rachel_1666 in reply to Evalina93]

Hi Evalina,

No worries .. it’s good on here to hear people’s experiences and just to have people to talk to.

I am also 25. 🙂

My next surgery I have been advised will include a bowel specialist also 😕

What have they put you on? (If you don’t mind me asking)

Yes definitely pros and cons along with all of it!!

Xx

[Evalina93 in reply to Rachel_1666]

Hi! They put me on the combined pill to control it, and it seems to be going well so far.

They didn't mention any treatments like yours, but i think that because they don't want to try to remove it because the risks are too high annoyingly.

Still, whatever treatment works! How did you get diagnosed? (if you don't mind me asking!) I was diagnosed totally by accident through surgery for something else, so would be interesting to know of other peoples diagnosing experiences! xx

[Rachel_1666 in reply to Evalina93]

Hi Evalina,

Pleased to hear it is working out for you..

Yeah everyone is different so different treatment works differently for everyone.

I just knew something was up as I was very blotated, had month long periods, my boobs were so tender too. So went to the GP and I eventually had a couple ultrasounds which showed two chocolate cysts one in each ovary. So I was then scheduled to have a laparoscopy to remove them. But they thought even then, due to the size of the cyst and then being chocolate cysts I most probably had endometriosis. Which is what they found in March when I had my surgery.

Xx

[Vicmcvicster]

Hi I'm new here too and in pretty much the same postion, although i had the cyst appear just months after my first surgery, so bloody painful.

I've just started the hormone treatment too in a bid to try and avoid more surgery.

And I'm exactly the same, finding the whole new diagnosis thing totally overwhelming also scary making decisions about things like putting yourself into medical menopause in you early 30’s!

Just hoping it works and stops the pain

[Evalina93 in reply to Vicmcvicster]

I hope it does work for you! It has started working for me now, did take 3 months so have to give it a good go! xx

[Whitey_kj]

Hi Evalina

I could have written your post, I found myself in the exact same position as you in March of this year. I had 3 large chocolate cysts that I knew nothing about until one burst landing me in A&E and then my journey started. I’d had no symptoms until this point and knew nothing of endo

I had my lap in July of this year to remove the cysts and have a good look around. They removed all but 1 cyst, there were 5 by the time in went in to surgery, as it’s too dangerous, but again just like you they found endo on my bowel, bladder and the back of my womb so everything is sticking together making things very painful. They couldn’t remove there and then as too dangerous on the organs currently

I’m currently on Zoladex (like Rachel) for 3-6 months, I’m on number 2 and it is helping me whilst I wait to see the bowel consultant and endo specialist. I’m only 35 and no kids at the moment but there was very little choice about treatment, we had to hit it hard and this was the best way. I’m hoping it will just be temporary and once we get to a good point the pill will hold things at bay and under control.

I’ve found doing some gentle exercise has helped with pain and generally feeling a bit brighter, and in a good mood and kept my love for sweets at bay!! Well at least under control 🙄.

Don’t be frighten to ask questions when with ur consultant about all the options to avoiding surgery for as long as possible.

Good luck 🤞