Conservative or Radical Surgery?

[Jem33]

Hi,

I have stage 4 endo, bilateral endometriomas, adeno, ovaries stuck to back of uterus and that stuck to bowel.

I’ve tried the Mirena coil, decapeptyl 3 monthly injections with Tibilone and currently on Cerazette. I’m also on the waiting list for surgery at a BSGE centre.

My question is how did everyone weigh up what surgery to have? I initially choose conservative with the excision of endo/cysts and unsticking of my organs but now I’m thinking maybe I should just go ahead with a hysterectomy. I know that’s not a cure either but I’m scared I’ll end up with multiple surgeries just because ‘I don’t feel ready for a hysterectomy’. I’m 39 and my family is complete it’s just mentally I felt overwhelmed by the surgery options at my consultation.

It’s hard for me to know which of my symptoms are endo or adeno and I worry that if I have conservative surgery the adeno will just get worse.

Any thoughts welcome and appreciated.

[Fizzypoptastic]

Hi there, I’m 43, have endo & adeno. Stage 4 with pelvic, pouch of douglas, bilateral, uterosacral involvement. I had the Mirena fitted in Feb 2022 & endo excision in March 2023. My family is complete too. I was given the option of a hysterectomy but I personally thought that was a bit extreme as a first ‘treatment’ option. I hadn’t tried any hormonal contraception prior to this.

I’m happy with the Mirena & with the amount of pain suffered due to endo, it has been a Godsend.

Prior to diagnosis, my hormones were all over the place so I’m not ready to put my body through an early menopause.

I have developed Alopecia Areata recently though, no idea what has triggered that or how bad it will get. All the NHS offer for it is a steroid cream, which just makes the hair greasy so I’ve stopped using it.

All the best with your journey. xx

[Jem33 in reply to Fizzypoptastic]

Thanks for your reply.

The mirena was a terrible option for me it made my pain worse with additional symptoms, the GNRH analogues brought extra symptoms as well. I’ve not been too bad on cerazette to be fair but still constant pain and painkillers every day to get through. My period has not returned after the injections so maybe that’s why I’m not as bad.

My current option is surgery I’m just trying to make a decision as to how much I should have done and that has me in such a dilemma. I can’t seem to weigh up the consequences of each. Ie conservative my recurrence rate will be higher and I’ll more than likely need more surgery, a hysterectomy but keep my ovaries and possibly have to have them removed at a later date whilst risking regrowth by keeping them or having a hysterectomy and an oopherectomy and there be no going back?!

As I said my family is complete so I don’t need to keep anything for fertility reasons I’m just scared that I’ll age rapidly (yes I know that sounds so vain), I’ll bring on all these menopausal symptoms early and/or the surgery won’t even work and it will have been a waste of time.

[Damby]

hi Jem, had much the same as you and had a hysterectomy conserving just my ovaries when I was 33 (now 37). It was, without hesitation, the best decision I have ever made. Took about 9 months to feel fully healed but I would go through I all again in a heartbeat if I needed to. Due to having my ovaries I have occasional flares but it is NOTHING like what I struggled with before. I have pain free months, a decent sex life, and can wear clothes and swim suits without worrying about flooding. I’m no longer constantly debilitatingly anaemic and I feel like my immune system finally works. Hope this helps. X

[Jem33 in reply to Damby]

Thank you for your reply.

If you don’t mind me asking what were your symptoms before and then after the surgery you had?

[Damby in reply to Jem33]

Hi Jem,

Sure. I had debilitating pain for most of the month, bowel pain over my period, horrifically heavy periods with large clots and crazily heavily flow. I was very anaemic and needed iron infusions. I had endo on my bladder, bowel and sacroiliac nerves. I had many adhesions from endo and four caesareans, which were being made much worse by the endo. I still have flares but they are few and far between and I do a lot of work to keep stress/cortisol levels low and to eat well. My surgery was 7 hours with an endo specialist, colorectal surgeon and urologist. Hope this helps.

[Damby in reply to Damby]

Ah sorry - after surgery I just took time to rebuild strength. In the past four years I have had maybe four or five flares. Sometimes just two days of burning pain, once a flare for three weeks - this was helpful because I learned that stress is a major factor to setting off the inflammatory response in my body. Hope this makes sense.

It’s pain that can be managed with OTC pain medication, where before I was on every prescription pain drug available just to be able to be up.

[Jem33 in reply to Damby]

This is super helpful information thank you so much for sharing with me.

[Cocoacupid]

Hun I’m stage four with frozen pelvic organs all in my bowel I have asked for hysterectomy after this next surgery but I can’t have both as I have to have my bowel cut and then rejoined and because I had sepsis from my diagnostic surgery they can risk doing both at same time. I don’t have children and I’m 37 but I don’t have a boyfriend or husband I just want to have a pain free life if possible but if I do meet someone later on which I doubt I would adopt as there are so many children in this country who need a loving home. Xxx

[Scoutybob]

Sorry to bring up an old thread but your situation sounds almost identical to mine and you're asking word for word what I've been saying.

I have stage 4 endo, bilateral endometriomas (7.5cm and 4.7cm on the last MRI in June), endo through into the tubes, kissing ovaries and significant bowel involvement as well as adenomyosis.

I'm due to have my surgery in 6 weeks and at the moment I'm booked in for conservative surgery but really don't want to be in for multiple surgeries and I also don't know what pain is endo and what's adeno.

For reference, I'm 41 with a complete family. I saw in another post you opted for the full pelvic clearance. Would you still say that was the right decision for you?

[Jem33 in reply to Scoutybob]

Hi yes I would say it was the right decision for me.

Dont get me wrong I still have hip/pelvic and some abdominal pain but I don’t have the heavy dragging inside, the pain with any movement, periods, excruciating ovulation pain. Even though I have pain remaining which is being investigated my insides feel free if that makes sense. I actually hate to think what I would be like now had I not had the surgery.

I choose the full surgery in the end as I just couldn’t face multiple surgeries if this would have been my best option. I think I would have been so cross with myself. I had the option of going private at the time which I knew wouldn’t be an option in the future. I even waited until nearer my surgery date to decide whether to keep my ovaries or not. I was scared to go into menopause so young. I just didn’t feel ready. But once I made the decision just to have everything out it lifted such a weight of my shoulders and I thought ok this is my journey and I’m ok with that.After my surgery both surgeons said my ovaries were covered in it so I’m so glad I had them out.

I hope you’re able to come to a decision that sits well with you mentally and works physically going forward.

[Scoutybob]

Thanks so much for that. Yes I’m the same in so many ways. This has affected things like choices with work and I really don’t want to be in that repeat surgery pattern. But at the same time menopause does freak me out. However, I guess at least it’s controlled and you know it’s happening?

I’m very aware that for definite the one ovary is ‘covered’ which is the one with the smaller endometrioma but they’ve said there’s multiple so I’d be worried about it returning there and it’s the ovary with the larger endometrioma that they’re already saying I might lose.

Plus if my pain is from adeno instead then I probably do need to just go all in…

[Jem33 in reply to Scoutybob]

it’s such a big decision reading your messages takes me right back to when I had to make it so I feel your pain.

I felt changing my outlook on it helped. Instead of being sad that I would be wombless and letting the thoughts creep in that I would ‘be’ different after I reminded myself this is going to make my life better. I won’t need sick days (hopefully) I won’t be limited in my physical ability anymore, I won’t be miserable. I still have days where I struggle it’s need all peaches and cream but it was definitely the right choice for me.

I’m extremely lucky that I don’t have any menopause symptoms expect hair loss/thinning and a few signs of aging like worse eyesight (not terrible) some achy joints, tiredness (but I do have a stressful life) and a little brain fog (but I was always forgetful). But these latter symptoms could just be what I would’ve experienced anyway. My hip pain is apparently bursitis so unrelated but I’ve to get more scans etc which will give me peace of mind the endo is not coming back.

What would stop you doing the full surgery? Or what would make you get it? And theme decide from there maybe

[Scoutybob]

I suppose I worry that it’s going ‘all in’ straight away because I haven’t had a previous surgery and wondering if it’s foolish. But then I know people do it for adeno alone and my endo is everywhere as well as that and my gut instinct is that it will return if my ovaries are left.

From a short term perspective I’m concerned that the full pelvic clearance will be a bigger recovery and I really need to be back at work asap as I can’t afford to be off for long. But I know that’s a false economy if I end up returning for surgery.

As things stand, life has been on hold as we haven’t known when my surgery would be and also going on holiday etc as I am doesn’t feel viable and travelling triggers it, and I don’t do much socially because of it. I don’t want to go back into that cycle again.

But you do hear of people that say it was the worst thing they did and it’s made it worse and that does scare me.

[Jem33 in reply to Scoutybob]

I absolutely hear you.

I’m hopeful that as my surgery was done by a BSGE specialist that I won’t have reoccurrence but they just don’t seem to know enough about it and as we are all different there is no size fits all.

I was off work for a month and worked from home for a month before going back to the office. It was definitely an adjustment going back. But now a year on I go to the gym 3 times a week, Zumba and I am able to socialise and interact easier with my friends and family. I just take the time to rest when I need it and I try not to be hard on myself.

[Scoutybob in reply to Jem33]

That’s amazing.

I work remotely so that’s a big plus. And they are very flexible. At the moment I’m planning to have two weeks annual leave and then review and maybe start back with flexi hours and help. But I’m aware that might need to be upped. Although good to know you were back after a month!

[Jem33 in reply to Scoutybob]

You will know your own body better than anyone so will be able to judge after whatever surgery you decide to go with.

Just don’t lift anything heavy or drive if you can’t do an emergency stop. I looked healed on the outside but wasn’t on the inside

Wishing you lots of luck