stage 4 endo surgery - success stories?

[M1673402]

so I’ve had surgery for stage 4 in an accredited endometriosis centre….it was only a week ago, they couldn’t remove all my endo from my bowel/one of the ovaries and have said I will likely need radical surgery in future and that cysts will likely come back. I also found I have adenomyosis.

Just wondered if anyone had any stage 4 surgery success stories? In terms of pain relief or fertility? And how early did you see a difference? I am feeling very disheartened and wondering has this surgery done anything 😩

[Starry1977]

Hi I had surgery b4 I knew I had endo. I was getting heavy periods and intermittent pain during period, ovulation and bowel. I also was getting pain in left hip, groin and down that leg. My ultrasound only showed a cyst but it was 4cm so I opted for removal . My lap showed stage 4 stuck ovaries, obliterated PoD frozen pelvis, endo on bladder and appendix. He removed it from bladder, ovaries but left the rest. A further mri has shown endo near mesorectal fascia and ademenoysis. The surgery has helped. I don't have any severe pain now. I'm also trying different POPs to see if they help. I'm 46 so can't speak about fertility as I'm too old anyway. Any further surgery I have will also be radical due to the severity . I do feel like something is coming back. ( lap was may 2022) I'm getting more discomfort in left ovary , like tugging and heaviness. Low level pelvic cramp for a week during ovulation and the week b4 I came on I had bad bladder pain holding a wee. Overall things are better but Im going to ask for another ultrasound at next appointment.

[M1673402 in reply to Starry1977]

Thank you for sharing this, I have similar symptoms to what you had and endo affecting similar areas, just feeling a little down with not knowing if this surgery will actually help and wondering how it will impact on fertility too. This is my second endo surgery after the attempted first found that the disease was too severe and needed a specialist team to treat. Really keeping my fingers crossed for some improvement but I guess it’s too early days to tell just yet

[Fizzypoptastic]

Hi there,

I’m 43 & suffer from stage 4 endo in the pelvis & POD. I had surgery just over 3 weeks ago so this isn’t necessarily a success story but just to say that I’m glad I had the surgery as I’d progressed from stage 2 endo 2 years ago to stage 4. I had polyps in my uterus too which were removed a year ago, same time as a Mirena was implanted. I hadn’t had any surgery or hormonal treatment before this.

I will require surgery again if the significant plaque left behind in my POD flares up which will require a MDT present.

Good luck with your recovery and all the best with your fertility journey. xx

[M1673402 in reply to Fizzypoptastic]

Thanks very much and thank you for sharing. It’s very hard to know how long time between surgery will last and when to just bite the bullet and have radical surgery, doesn’t help that getting answers from the surgeon on what they even did is proving very difficult! I was told this time round I would have a bowel and gynae surgeon, then on the day the bowel surgeon was sick and they told me they couldn’t remove all the endo from my ovaries and bowel 😩 Such a hard journey. Sending support, hope you’re starting to feel better too x

[R_elep]

Hi. I’m not sure how long to wait before calling things a success but hope my story gives you a bit of positivity 😀

I had sever stage 4 endo affecting both ovaries, 10cm cyst on one, 3cm on the other, bowel and rectovaginal involvement etc and had surgery with 2 surgeons (bowel and gynae simultaneously) and the mirena inserted at the same time.

Before surgery I was in and out of A&E, inflammatory markers sky high, in the worse pain I’ve ever experienced in my life. Since surgery, I barely have any acute pain that is as severe as that.

I get aches, random shooting pains down my right leg (my big cyst was on the right side) and feel like a bit knotty at times, but only very rarely to I need painkillers for any of these.

The only thing I’d say is that I am bit more emotionally up and down (I think because of the mirena) and general energy levels aren’t as high as they used to be (even a year on), but I can still manage medium level exercise etc.

I haven’t crossed the fertility bridge yet, but am looking into egg freezing (as I’m 32 and even before my endo kicked off I’d always thought I’d freeze my eggs at around this age), so that can be something to consider / weigh up.

So on the whole I’d say it’s great you’ve had the surgery and wish you all the best on your journey! ☺️

[M1673402 in reply to R_elep]

hi, thanks so much for sharing! It’s great to hear a positive story and I’m so glad to hear your pain has reduced so dramatically. I will keep everything crossed for a similar result from mine! Good luck with the egg freezing, I am 38 and unfortunately it looks like my chances are extremely low but at this minute in time I would be grateful just not to be in pain any longer, anything else would be a bonus! X

[R_elep in reply to M1673402]

No problem! Best of luck for your surgery - I’m sure it’ll go amazingly! X

[Fizzypoptastic]

Oh, that’s disappointing. I feel for you. It takes guts to prepare oneself for any kind of surgery. You’re very brave for having gone through with it.

Please allow yourself time to heal.

I’m feeling tons better than I did initially. Thank you.

Sending you lots of hugs and positivity! xx

[M1673402]

thanks again! It was only last Friday so need to give myself time to heal and get my head round it all! Thank you x

[Gardenist]

Hello I had Stage 4 and have a success story of sorts. I've had 4 surgical procedures over about 15 years 2 conservative before having 2 children (difficult but it happened naturally) and 2 radical after. Each time I've had a good 2 years pain free, and some good years while pregnant and breastfeeding followed by a return of endometriosis. I'm hoping that I'm at the end of it now as I don't have ovaries anymore. I honestly feel the best I have my whole adult life (I'm 43) even though surgical menopauseis a challenge in itself. It has been hard work and lonely at times. I changed my whole lifestyle to mitigate pain and symptoms and while it really helps surgery has been the only thing that relieved the pain. I hope you recover well. It takes longer than you think as a lot will have happened inside despite the outside looking not too bad. I felt the worst after surgery both in body and mind but it gets better as you heal. I find it helps to focus on what my body can do, rather than all the negative things and to treat myself kindly. Advocate strongly for yourself and research and try out different approaches. It's amazing how individual we are when it comes to hormones and inflammation.

[M1673402 in reply to Gardenist]

Thanks very much for this. I am in medically induced menopause at the moment, not sure when this will wear off (injections not stopped) but it has given me some relief, I was on this for 9 months but now I’ve had the surgery fertility is on my mind again. It gives me hope that if I eventually have a hysterectomy I hope it will help with the pain! Glad you’re feeling much better. It is very tough, just over a week down and I’ve definitely feeling down now whereas outward I look like I’m healing! It does feel extremely lonely, even when you have good support! Thanks for sharing your experience x

[newstart2020]

Hi there, hope you're doing ok there. it's not easy to figure out what to do and when to do it, there's so little reliable information out there. i had surgery for stage iv endo (bowel stuck, ovaries stuck, etc) in oct 2021, with Khazali in England. He also found adenomyosis and told me i'd have to monitor that, as i didn't want the complications of hysterectomy. i was crippled with pain before surgery. now i have no endo pain whatsoever. i have regular physio (lots of facia work), have to be careful with my diet (stomach damage from endless painkillers over the years) but i do have a bit of an ache which i know is the adeno. i'm in natural menopause so can't speak to your fertility, but i'm still taking the progesterone pill zalkya 2mg (which khazali recommended to suppress any endo which wanted to reappear post-surgery), plus two pumps of oestrogel to help with menopause symptoms. the surgery i had in 2021 changed the quality of my life more than i could have hoped. i'm one of the lucky ones, for sure. any decent surgeon will speak to you first about fertility and be able to advise, hopefully.