Help

Hi Everyone

I have just been diagnosed with grade 4 endo which has covered my entire pelvis and rectum. I had my lap 3 weeks ago and the surgeon did't remove any of it as she said it was too difficult!!!! She inserted the mirena coil at the same time to try and control my pain but within 24 hours my pain had intensified to worse that labour. I went to the doctors and they gave some strong painkillers and opoid based painkillers which didn't help my pain that much so i resorted to going to the nurse and having the coil removed, within 24 hours my pain had gone down to what it was before.

I'm not seeing my consultant for a few months and I was wondering if it right that she didn't try and remove any and if a hysterectomy including ovary will help me and it they will try and remove some.

6 Replies

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  • Sorry about all your pain it's awful I know. Is your consultant a general gynecologist or a bsge specialist in endo. If she's a general you need to get referred to a bsge specialist who is trained to deal with you specific grade of endo. That's all I know. Sorry can't help more. Hope you get sorted

  • Thanks, no my consultant is just a general one, do you know how to get referred to a bsge consultant

  • This happened to me back in january - the gynae said he was going to laser the endo and I came round from the anaesthetic to find that it was too severe and he hadn't removed any of it. At the time I was very disappointed, but in hindsight he did the right thing to leave it rather than try to carry out a surgery he wasn't skilled enough to do.

    After that I was referred on from general gynae to a bsge centre. I am having another lap in November, which will be exploratory, with the aim of planning a second surgery once they know what they are really dealing with as their scans have showed my endo to be very extensive - 4 large nodules, rectovaginal endo, further endo on the bowel, round the left ureter and right uterosacral ligament. They also found adenomyosis and fibroids. They are suggesting a hysterectomy plus removal of ovaries, their reasoning being that given the adenomyosis and the extent of the endo, a hyst is inevitable and it would be better to do it now than to carry out an excision surgery and leave me with scarring that could make a hyst too risky later on. It's a big decision and I'm still not 100% ready to make it. If you can get a referral to one of these centres that might be a good idea, they are far more skilled than general gynae and may be able to give you more options. Good luck.

  • thank you, mine is extensive and they said it was to difficult to remove without opening me up further. Did your consultant refer you to bsge? My entire lower pelvis is covered in it and I just want it sorted but don't know where to go from here

  • yes, the consultant referred me although your GP can also refer you if you ask them. The gynae who did the first lap said I needed a hyst but that he would do it with the large open cut. After a few months of faffing around he admitted that although he could do a hysterectomy, he couldn't treat the endo on the bowel and that my disease was beyond him. He then referred me to the bsge centre. They are still suggesting a hyst but it will be done via laparoscopy (so keyhole) with full excision of all the endo.

  • yes my consultant said next step hysto if mirena didn't work. I have endo on my bowel too so i think i will go back to docs and ask to be referred to bsge centre,am hoping my consultant will also bring my appointment forward as it will be a few months before I see her again

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