Stage 4 Endometriosis - Just Diagnosed

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On Friday following surgery to remove a very large cyst my gynaecologist came to tell me that I have stage 4 Endometriosis

He said the extent of my Endometriosis made the operation to remove the cyst and my Fallopian tubes difficult as my womb, tubes and ovaries were stuck to each other and my bowel and bladder and I have extensive adhesions

He is going to write to me with an appointment to see him in clinic about how to deal with my Endometriosis once I have recovered from this operation but he did say that any surgical option would be "very difficult"

Until a couple of days ago I had no idea I had Endometriosis, so I only know what I have read about it.

Can anyone with Endometriosis give me any ideas of what treatment options there might be for this, as well as what you have tried and worked/didn't work?

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4 Replies

  • Posted

    Hi, I had very similar case like yours. I had my endo lesions removed last June and even had 1/3 rectum resection due to the big nodules there. Somehow the pain after surgery was easied a lot but the endo started growing back lately. Unfortunately there is no real cure for endo. The symptom will go away by itself when we reach the menopause. Doctor might put you on the birth control pill OR put IUD in your uterus to prevent the endo from growing back, but that does not necessarily help everybody. I have read a lot of sad story of taking birth control pills and IUD really scared me.
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    • Posted

      I have finished my family. I have had my fallopian tubes removed already so I can not have any more children anyway - nor do I want them (so in that respect I'm lucky)

      My consultant gynaecologist who is also an endometriosis specialist diagnosed my stage 4 endometriosis when I had a lap to remove a huge cyst, he has sent me an appointment to see him in June to discuss what the plan to treat my endometriosis is but I have no idea what to expect? When he told me I have stage 4 endometriosis he did say any surgical option would be "very tricky" due to the extent of the adhesions and scar tissue but he said that was for him to deal with and not for me to worry about. I don't know if trying a medication would be best for me or whether to have a hysterectomy and see what happens after that.

      I have had a period since my lap and it was as horrific as it's been for ages so something needs doing asap but I don't know where to begin?

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  • Posted

    By the way forgot to mention, make sure go to an Endo specialist to perform the surgery. Not every Gyno knows much about endo. Believe or not I was surprised how come so many doctors even don't have knowledge of it!

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  • Posted

    I feel the same way as you, 8 days had a surgery to remove a large polyp of my uterus and they find out stage 3-4 endometriosis and PCOS before that I had no idea about it, it was quite shocking even more when I googled it.

    I was informed about the treatment, pills or the coil But wasn't offered any treatment as Im looking forward to her pregnant, I don't now if it's going to happen to be honest but I'll try as I'm 36 years old and have no children yet.

    Have a couple of appointments in the next three months including one with a fertility specialist but that's it.

    Wish you get the best treatment and please is anyone got any information in regards to the condition I'll appreciate the update, take care

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