I have been on a bit of a journey over the last couple of weeks. I was diagnosed with endometriosis about 4 years ago but the symptoms were mild. This year they have increased and so I went back to the Drs. They went down the fast track cancer route and I had an MRI within a fortnight. I had the results on Monday 14th May and was told that there were abnormalities and so their advice was a full hysterectomy. The consultant was great and spent an her explaining it all. It was to be reviewed at a meeting with other consultants but she was fairly sure that this was the ye way forward. She rang back on the Thursday to tell me they were certain that there wasn't;t anything sinister there and so were downgrading the op to removing the tubes and ovaries. After reading on here I queried whether that would fix the endo and she said she would ask a specialist endo consultant. She rang back Friday and said I have been referred to the endo team and wished me all the best. Quite an emotional week!!! My appointment is Wednesday this week. She told me that may endo is stage 4 as it is present outside the uterus in my bowel and that the new consultant wants to discuss injections to make an operation easier.
I want to go to the meeting prepared so any advice would be greatly appreciated
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Munchkinola
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Hi! I have stage 4 endo. I have had endometriosis since I was 12 with severe pain and bowel involvement. I had lost 6 pregnancies over the yrs, 21 abdominal surgeries, so many different grapefruit sized tumors, fibroids, my tubes mangled, all of my intestines and organs stuck together in a ball, severe constipation etc. In the end I ended up with ovarian cancer and forced to have a radical hysterectomy. I am now 4 years after hyst and still stage 4 endo! The Hysterectomy has ruined my life more then endo has. The Doctors dont tell you how badly it can effect your life. Hormones are all over the place, osteoporosis, more surgeries still, hot flashes, night sweats, hormonal weight gain! (I was always 105 pounds my entire life until hyst, 30 pound gain and I didn't eat my way there) the list goes on!!! I had no choice because of cancer but you do.
Please really research your options before you have the doctors rush you into a hyst. They cant diagnosis cancer or endo without surgery so for them to automatically jump to hyst is very extreme. A good gynecologist surgeon will never tell you hyst for endo as that usually never solves the problem. Ive been told by top surgeons hyst for endo is a big no no. A full excision of endo is needed and specialist who specializes in doing that surgery is a must. I know they have some amazing surgeons who do that in the UK, USA and Australia so far from research. I'm also having amazing luck with my Naturopath doctors and CBD oil. Im thinking outside of the box now since western medicine just wants to rashly remove our insides for profit. Best of luck!
Good luck with your meeting with specialist endo consultant .
Past few weeks must be very tough time for you with cancer scare added to pain from endo.
I am also in similar position MRI scan confirmed I have stage 4 endo and I haven't managed to find appointments with Specialist yet , but could you please keep us in loop how your consultation goes.
I had my second lap last week and was diagnosed with stage 4 endo. There was never any talk of a hysterectomy! I was seen by an Endo specialist and a BSGE aproved centre.
Without going in and seeing how things looks they can’t know the real picture.
I would suggest talking to specialist and having hysterectomy and or tubes/ovaries removed a last resort. Good luck x
Hi I've just had a hysterectomy for stage 4 endo it was a total mess in there and had gone into the muscles of the uterus, the bowel, the bladder and pretty much everywhere so the only way they could successfully remove all of it was to have a hysterectomy. It's still very early days for me so I can't say if it's helped but I know if I hadn't had it done it would have just got worse. For me I didn't want any more children and was prepared to take the risk to try and make it better. Good luck x
I’m stage 4 and due to have my pre op next week to have the endo removed at a speacilist endo centre of excellence. Surgery is risky but better than hysterectomy x plus I am 36 and wanting children (never been pregnant) this op will give me the best opportunity x being referred is a good thing 😊 good luck with your appointment x
So at the appointment yesterday they still recommended a hysterectomy as being the best option for me. I will have a Zoladex injection to reduce my bulky womb to make it easier. Everything I read on here makes this sound like the worst thing I could do but why would they advise me to do something that wasn’t going to help??
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