Grade four endometriosis

Hello, I am 32 years old unmarried woman i am suffering from endometriosis grade four with ovarian cysts. I got my second laposcropy done in march 20 2015 ( this time laposcropy cystectomy open surgery done) my doctor said that I have large endometriosis which was glue to my orgen which was not coming out with laposcropy so she had do done an open surgery she said that she has cleared all the endometriosis as much as she can but there are some endometriosis which is glue with my instentine she can not handle it so she put me on zoladex 3.6 mm for three months. She said she has to put me on life long medicine so that I can get atleast 5year without endometriosis. I just want to know that is after all that surgery and medicine what are the chances of recurrence rate. Is there any other cure of this disease? after hystectomy can it be cure? what are the chances of my condition bcoz I just don't want to take life long medicine it's really frustrating .thanks

6 Replies

  • Hi there

    So sorry to hear you're suffering. Unfortunately there is no cure for this awful disease, only treatment. How effective the treatment is differs from person to person, so hard to say.

    Is your specialist from an accredited centre? May be worth checking to ensure you get the best treatment to minimise it reoccurring. There is a lady on here called lindle, who has the weblink.

    Also, has your specialist recommended you go on zoladex for life, or have life long treatment using a variety of methods? Only ask as zoladex should only be prescribed for up to 6 months.

    Take care X

  • As long as you have endo in the wrong places, you will most likely still have pain and flare ups. Hysterectomy doesn't cure it, but if you have adenomyosis; removing the uterus will cure that. They say that as long as you have your ovaries that you will also have more chances of having your endo survive. I have been doing lots of research on this, and it is outdated information. There are cases where the women have NO ovaries, NO hormone replacement therapy and still have endo thriving. Why? Because endo can produce it's own estrogen. It is a self supporting life system in there. But you have to remember, everyone is different. What works for you might not work for me.

    You can always do a trial run. You just have to give it a good 6 months before you might notice a difference. I wanted to try Lupron, but my insurance company refused. And you might want to look into that "lifelong" thing, because it can mess you up down the road with other health issues. You have to weigh the pros and cons. But personally, if it were me, I would do a trial run. At this point in my painful life (35 years old), I am willing to run outside naked and dance to the full moon while gathering pixie dust if they thought it would help the pain. ;)

  • The key to getting the best treatment possible is to find a specialist endo centre and excellent surgeon to give you the best possible chance of a pain free future and to have it all excised as anything left behind will continue to cause problems.

    I was offered zoldex but refused as I'm really sensitive to any hormone imbalance and I just lose all control emotionally but everybody is different. X

  • Hello, sorry to trouble you again. My doctor says what ever endo she has left it will go by zoladex I have been given two shot already and she prescribed primolut 5mg for three months and after completing the course of zoladex she will put me on some medicine which will run life long because she said without medicine I can't live endo free life. If I don't take medicine I will have to undergo surgery again and again. She also said that she can give me atleast 5 year of endometriosis free life.I just want to know that will this help me to stop recurrence of this problem? And is true if somebody take life long medicine this problem will stop.

  • Ok the cold hard facts are the only way to stop endo is by excision surgery and by making sure nothing is left behind.

    Zoldex will not cure endo but (May) surpress it but as soon as you stop zoldex the symptoms will return.

    As for the other drug you mentioned I haven't heard of it so can't comment but if it stops your periods then yes it will stop it from growing again but what you need to look at is what side affects could you get from this?

    Happy to help Sharon

  • Oh and you will only need repeated surgerys if it's not treated properly in the first place. X

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