Hi, I'm newly diagnosed with stage 4 endo including 6 cm cyst and endo on anterior rectal wall. I've seen a private Dr who has advised I'd need surgery rather than just trying hormone treatment and my options are either a lap to remove what they can or a full hysterectomy.
I'm 45, so fertility isn't an issue. The pain has been get getting worse last few months and it's really effecting my sleep, but it's certainly not as bad as what some of you ladies have described When my pain is mild I think I should go with the lap. But when it's bad I just want it all taken out just to be sure. The Dr was very careful not to recommend one or the other, he said both were "reasonable options" - but warned if the lap didn't work I need a hysterectomy anyway.
So now I don't know what to do. I guess my question is: is stage 4 manageable with a lap and then a coil? Or am I being naive? I don't want to go through one op and then be back for another 6 months later.
As a newly diagnosed person should a hysterectomy be a last resort for if everything else fails or is it really just inevitable for someone with stage 4?
Many thanks,
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Jenn2022
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Hi Jenn. I am 37. I will likely not be having children and am 75% this will be the case. I was offered hysterectomy too. Had I been over 40, I would’ve done it. I wavered heavily on what to do but knew I’d regret it. And that’s only because of that 25% doubt in my mind.
Many women say hysterectomy made their pain so much better. If I were you, I’d do it. Then you don’t have to worry about pain, cancer, etc. I had lap on 12/20. Like a bomb went off inside of my body. I am in so much less pain though after excision. I had DIE. I anticipate needing a hysterectomy in the future and so did the surgeon. If you’re done having children, vacate the blood bucket IMO.
I had mine at 42 as I had fibroids and endo and was flooding out so badly which became more and more but they left my ovaries, have since had another endo excision and now in pain from adhesions and scar tissue. I don’t regret the hysterectomy as it had to be done but I feel I am no better off pain wise and also have a bladder prolapse now. The op itself was laparoscopic and wasn’t actually as bad as my excision surgery healing wise. It’s a hard decision to make and only you can do it but if u are undergoing a long intrusive lap then hyst maybe the better option. Wish you well x
I’m just dropping in too say I’m 35 and I’m having a total hysterectomy hopefully this year. I’ve been waiting for 4 years on an urgent list. They try not to use stages anymore, but I’m totally maxing out the new ‘enzian’ measurement for endometriosis.. and could start a new stage 5 tbh. My bowel and uterus is covered, my pouch obliterated and frozen pelvis etc.
Ask yourself at 45 is it work extra suffering to leave it in… or do you feel you’d go through more surgery? We all know that the hysterectomy doesn’t cure us, but when we’ve suffered so bad so long… we’d take any relief going.
For me my cycle is 28-38 and then I bleed for 7-10 days, then again two weeks later vomiting and diarrhoea for ovulation with some blood, and then back again for period.. and that’s without the pain.
If I’m not on hormones or contraceptive pills I’m bed bound, sick and always in level 7-8 pain. When I’m on HRT and chemical menopause that 8 is rare, and the worst break through is a 7.. the pain I’d say is around a 5. But more times I’ve lesser pain and can a live a little more, unfortunately due to adhesion etc I still have pain with activities and this is what pushes my Decision. Although, I now have to decide if I want total or partial hysterectomy.
You need to really stop and way what will work for you.
A friend of mine had surgery in March 2021 and she was told she would be fully excused and back to normal with coil. It popped out, and she hasn’t been right since. She’s now on the list for hysterectomy.. I’ve a few the coil didn’t agree with.
But on the flip many love the coil and it works to some degree, except endometriosis seems to be an awful beast no matter what.
Honestly, you can only do what you think will be best for you xx
Hello, I have stage 4 endo, all over bowel bladder. I am very lucky to have conceived 2 children naturally, much to my specialist surprise, he never thought it would happen. I have put off having op as so worried about them damaging my bladder or bowel, I am looking into improving my diet, just stopping milk and having soya milk has really helped.Good luck with your decision xx
Thanks ladies, you've given me a lot to think about and it is some relief to know that other people are going through all this. Not that I would wish it on anyone.
Right now I'm leaning towards a lap to get rid of the cyst and what they can, because if I went straight to a hysterectomy, and ended up with problems because of it, I would regret forever not at least trying the less dramatic route first.
What scares me is up until about 3 months ago I had bad bloating and an intermittent ache from the cyst, but no real 'pain'. My life was pretty much normal. But everything has changed since October - now my life is just pain management and I can only dream of those happy days when my biggest problem was having to buy jeans 2 sizes bigger than normal
Hi I understand, I was pre menopausal, stage four will only get worse , I had full hysterectomy ovaries out as well endometriosis was stuck to apart of my bowel and bladder, you go into early menopause, you dont have spear tests . I hope you get on ok .
Hi Jenn2022Here is my (long) story and hope it helps you. I was in a similar position to you in Oct 2020. I had an endometrioma on my left ovary that had been growing over the years but gyn told me to just monitor until it had gotten to 7mm, it hadn't bothered me at all really to that point, maybe some cramps but nothing major. Then she recommended having it removed due to cancer concern (I had stage 0 breast cancer previously) I'm in the US and went to an endometriosis specialist surgeon and had the option of doing nothing and just wait & see, trying a menopause inducing drug like zoladex or lupron to see if it could hold it at bay since I wasn't eligible for birth control hormones, lap to excise endo, or hysterectomy + ovaries removed. I was 49 at the time so I didn't want the zoladex/lupron since I had read bad side effects and figured I am close to menopause anyway so considered either the excision or the hyst.
At that time, I elected to do the less invasive and try the excision lap first. The assistant surgeon (and you) are right that you can always go back in for another surgery as needed but you can get your organs back. So they went in and removed the cyst and most of the left ovary along with tubes and DIE all over. I also had a uterine ablation as I had adenomyosis as well. I felt great for 3 months, then little pains started again. By month 5 post surgery, I was on the floor in so much pain, throwing up and had to go in to emergency. They did an ultrasound and found a 5mm endometrioma had grown back on the right ovary. I was devastated, how could that happen so quickly? But unfortunately it does for some people.
So I decided my last hope was just to do the hysterectomy+ ovaries removed. I have 2 children already, would likely be in menopause in a few years and just couldn't stand to bear that kind of pain each month. I was out for 2-3 days with heavy bleeding and cramps. So in May 2021, 7 months after my first surgery, I had the hysterectomy. The surgeon said this was one of his top Worst cases, like a bomb exploded in my pelvis! Maybe the cyst ruptured causing the pain and endo everywhere. But he cleaned me up as best as he could. I'm 8 months post surgery now and feel good. Occasionally I feel little twinges of pain and wonder if I have a remnant or something growing back, but for the most part I feel good. I did have menopause side effects about a month after surgery, that lasted during the summer- lots of hot flashes/night sweats. But for the most part it was manageable and I got through it. It was easier to handle than the pain with the cysts/endo. I'm not eligible for HRT due to breast cancer and also scared that any hormones might contribute to endo grow back.
It is definitely a personal decision. I went back n forth many times and was just so scared about whatever decision, side effects, etc. But I'm just making it through one day/month at a time, hopefully continuing to feel better. Recovery was tougher with the hysterectomy but not as bad as a c-section. I made it through and you will make it through whatever you decide.
Also, I do know a friend of a friend who went to the same surgeon as me and went in for endo excision, got the Mirena coil fitted and has been fine for 2-3 years now with no endo grow back. So some people are lucky that it doesn't grow back or not quickly.
Good luck with your decision, feel free to message me with any questions. xx
Not sure if it helped but my experience is so that I am now so happy that the endo issue is 90% gone forever, by God's grace. Life is back to norm again.
My gynae was careful and provided painkillers which I ended using for nearly 2 years, probably she was hoping my potential menopause (I was 48 then and had incision method due to size) would help reduce the pain in due time. Anyway, that did not happen. My life was no life at all due to pain killer side effects and pain. Yes, fertility is not my issue too.
If ovaries were good, then keep that and the menopause issue could take her natural course. That far I know for sure. Mine are good and keeping them and I have my life back, with mild menopause on and off.
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