Endometriosis UK
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Next steps after 4th Laparoscopy

Hello ladies,

I had my 4th Lap on the 9th January. I have had 4 ops in as many years. My first op i had stage 3 endometriosis which was removed. I tried the mini-pill for 6 months which was a disaster, I put on a stone, my breasts were massive and sore and it didn't help the pain. I moved to the Mirena coil, which for the most part has been a lot better, and been helping somewhat, however the pain keeps going back usually around the year post op mark. The second and third op showed stage 1 endometriosis, which was removed, but this time, prior to the lap, he did an MRI scan to see what was going on, and a cyst was detected. So in this operation he removed a large ovarian cyst and endometriosis from my uterus. I felt fine after two weeks, and went back to work. Day 4 i felt terrible so didn't go to work, and Friday i worked from home and spent the day crying as i felt so hormonal, pain down my left leg, sore breasts etc. I had my coil replaced, so i knew this could be the coil settling in. Anyway, I went for my post-op follow up appointment yesterday morning, and you should have seen his face when i told him i had gone back to work. He said I had extensive endometriosis on my uterus, plus with the Ovarian cyst removal, he had done a lot of work, and I should be staying at home for another couple of weeks. My wounds may have healed well, but my insides haven't yet. So I am going to listen to him and do as I am told. However, he did say to me that he is concerned that i am on my 4th op, and although the Mirena is helping with the bleed, it isn't stopping my ovaries from working. This time he has asked me to go back in 3 months to see how i am going and to discuss options. He has never done this before. After the three week check, he signs me back to my GP. I stupidly didn't ask any questions (who knows why) - but he didn't tell me what stage he meant either, he just said 'extensive'. I just wondered what other options there are now. Is he likely to say have my ovaries removed or hysterectomy. I just would like to pre-empt what he is going to say so I can do my research beforehand. I am 40 years old with no children, however I am not in a relationship. In an ideal world I would have children, but my life is hugely negatively impacted by endometriosis, I would have to seriously weigh up the pros and cons. As ultimately I don't want the next ten years or so being in constant pain, and then hit the menopause for another load of hormonal issues. Just wanted some advice from people who have gone through a similar experience

Thanks ladies! Nic xx

1 Reply

They might suggest hysterectomy/BSO but that doesn't mean you have to have one if you're not ready or don't want it. There are also other drug options such as zoladex etc. I am due to have a hyst + BSO plus excision in March. It will be my third surgery for endo. All drug options have failed (mirena/decapeptyl/cerazette/norethisterone) and the BSGE consultant has basically said that my options are to have the hysterectomy or to carry on as I am and hope that my bowel endo doesn't get worse, and that in his opinion the only reason not to have the hyst would be if I wanted more children (though to be perfectly honest, at 39, with endo pretty much everywhere, cysts on my ovaries, adenomyosis and trashed fallopian tubes, the idea that I could even get pregnant seems pretty ridiculous). They have told me that I will have to take HRT until I'm 50 at which point I will have to stop taking it and I may well at that point have to deal with menopausal symptoms for a while.

FWIW my endo has never been staged, I don't think all consultants do it, my hosp letters all just describe it as severe.


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