Do you always have to be on treatment for endo?

Hi everyone,I had stage 4 endo diagnosed this summer and had 3 laps in last 6 months. Endo was removed and was put on pill for 3 months back to back. I still got periods and breah through bleeds even tho ended up trying 3 types of pill. Last lap was for adhesions.... When surgeon went in he found cyst on rt overy and drained it.He said if he hadn't done this I would have needed more surgery for twisted overy. He also said very happy no sign of visible endo and continue pill. After op bleeding for 4.5 weeks and pain back. Had scan cyst back on overy bigger than ever and also new cyst on left overy told to come off pill as not working if getting cysts???? So am a bit worried and confused. Still have pain with no explain action for it and worried re these cysts and if not on pill will endo come back quicker????

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  • I guess what he/she means is that oestrogen is feeding the endometriosis. When you are ovulating you produce more oestrogen and the pill increases oestrogen. So if you starve the food of endo 'oestrogen' it reduces the ability of endo to proliferate.

  • Hi

    You have to be on hormonal treatment only if you have endo, or if after surgery some endo is left or there is suspicion that not all endo is removed 100%.

    If you are clear of endo 100% after surgery then there is no need for treatment at all especially if you are around 30 years old or older as all endo has shown up by that time.

    Jo x

  • Thanks so much ladies

  • Slightly concerned as to why they only drained the cyst and didn't remove it. It was explained to me that cysts on ovaries should be removed completely. To drain them leaves their wall and so can fill up again in no time!

    As I say this is what was said to me but, as this site proves, we are all being told so many different things!!! About time somebody in this country/world clarifies the treatment(s) that we should/shouldn't be having and stop treating us like second rate citizens!

    I feel for everyone on this site as I am only now getting the treatment I deserve.......because I'm paying for it!!! £16K in total after the next op (and it should potentially be the last). Thank god for parents and grandparents as I can't work properly so I didn't have the money!!!

    Anyway, good luck and I wish you well. xxx

  • I totally get what you're saying. I am incredibly lucky with my gynae but it took ten years and a twisted cyst to diagnose me. The problem is that because everybody's endo is different and personal to them, the way that it's diagnosed and treated will differ too. If there was a catch all treatment for endo, we'd all be cured by now, or at least have our endo under control :( Also I suspect that although surgeons might use different words, what they're actually doing is probably the same. I can't imagine that Livvie's surgeon would have left the cyst shells in there, when he said drained he probably meant removed.

    Livvie, when you're first diagnosed, it's trial and error to find out what works for you in terms of treatment, and it also depends on your circumstances. For example, when I was younger and trying for children the priority was to keep me as clear of endo as possible so I was having repeated laps to 'clean me up'. Now I am no longer trying, the priority is to keep the endo calm so I will have no further surgery unless it's life threateningly necessary. The endo flares occasionally and then I am given hormone treatment to quieten it down, but on a day to day basis I'm not on any treatment apart from pain relief.

    You might want to clarify whether the cysts on your ovary were endometriomas (endo cysts) or 'just' simple cysts that anybody can get, but to be honest it doesn't really make any difference; if you're going to get them, you're going to get them :(

    How old are you, lovely?

    C xxx

  • I'm 33. No kids,single. And yes gynae said simple cysts. what confusing me tho is have 1 surgeon and 1 gynae involved and after last op surgeon said if he hadn't drained,and definitely said drained the cyst would have had a twisted overy from it. Also he said their could be microscopic endo so that's why put on pill in case any left. At minute have to wait and have repeat scan in 6 weeks. Gynae did say that only concerned if cyst was over 5cm so hopefully after reading the replies it may resolve itself! Thanks for the advice ladies. And very best of luck to you all:-)

  • You might want to see if you can try Zoladex injections. I did a 6 month cycle after my 1st lap as I didn't see a difference with any of the pills I tried and ended up bleeding constantly. Also I had another lap 4 months after I finished my injections and they had minimised to nearly nothing after having had heavy adhesions and stomach/bowel fusing in a previous lap.

    there are some side effects but worth it. After my 2nd lap, I went back on the pill for 8 months but again was bleeding constantly so stopped any hormone treatment and even though I have a painful cycle for 5-7 days per month, the rest of the time I'm realtively fine.

    I understand that might not be for everyone but I don't like how the hormones from each pill etc. were messing with my head.

    Xx

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