Should I have surgery or not?

[Beautyintheordinary]

hi,

So after 2years on the waitlist for surgery I've been giving date, 15th april.

I'm terrified and stressing about it so much.

It'll be excision of endo, removing cysts from ovaries and they also want to do a rectal shave...

Anyone who has had surgery or any of these procedures, please any tips for recovery? Did surgery actually help? Did you have any complications? Did your pain get worse? Did you have any new symptoms after surgery? What were your periods like afterwards? What about scars? How long did recovery take realistically?

All I keep thinking is, the pain I have now I can handle, it's not everyday and I lead a pretty normal, healthy, active life...I don't want that to change...will surgery make me worse? Do I actually need surgery?

[Emmaja_ne]

I recently had surgery for deep infiltrating endo. I didn’t have any complications. Recovery has been okay, took me about 2 weeks to start feeling ‘normal’ I was so exhausted after the surgery. I’m 4 weeks post of now and I have not had any relief from the symptoms which I’m gutted about but everyone is different. I’m hoping it will just take more time 🤞

Good luck x

[Endofitall]

I think unless your symptoms are truly affecting your day to day quality of life surgery is a major thing to put your body through. Only you can judge the balance of benefits vs risks you’re willing to take.

I’ve had significant scarring after but I do tend to scar easily, and someone I know ended up with a keloid scar of the belly button scar, so that’s something to consider. Someone else I know had a belly button hernia that needed further surgery to repair it.

My recovery from quite a complex excision including severe rectovaginal disease took around 10 weeks to get back to normal. I had a post op complication - a haematoma (collection of blood) that meant I had a swollen painful labia for weeks and worse bowel and new urinary symptoms (never had urinary problem before except pain when emptying bladder during ovulation) for about 8 weeks. Thankfully this has settled.

It’s been worth it for me as I had horrendous pain and symptoms that were life altering. I had no quality of life. Sex was painful. It was affecting my relationship (though my DH hugely supportive). I was having time off work . Thankfully so far the op has been hugely worth it symptom relief wise. I can for first time in years say my bowel isn’t bothering me. And the sciatic pain that would make me feel like life wasn’t worth living at times has finally gone. We also have renewed hope on our very long and painful fertility journey. So despite all the complications etc I’d still do it again.

If you search posts on here “lap prep tips” and “post lap advice” etc there’s loads of great tips out there.

I really hope you can make the right decision for you.

[Tatimati in reply to Endofitall]

Hello. I had surgery last June. Than had another bleeding after 6 months and another surgery. Recovering process around 2 weeks, light bleeding, no pain. The most important trustful surgery clinic.

[Simo7]

I’m so sorry that you’re so worried. As Endofital said, only you can decide if it’s worth it. I’m on my 10th operation over 20+ years and awaiting another too. Who knows if I’d have had a better quality of life if I’d not had some of those surgeries or if I’d have ended up worse?

I think that we always try to make things seem not as bad when the operation is imminent due to the fear factor. But there must’ve been a reason that you went to the Dr in the first place?

I’ve had my bowel shaved twice and I think that was the most noticeable pain relief after, the other operations in the last few years haven’t really done much for the pain, though weirdly decreased my migraines. However when I was younger the pain relief used to last longer after operations. My concern for you would be that your pain gets worse and that you have to wait another 2 years for an op, if you’ve been monitoring your pain then maybe you know if it’s getting worse or not? Another thought, ovarian cysts can burst and cause a lot of pain (I don’t know if that’s just the endo’ chocolate cyst as apparently we have ovarian cysts that grow and deflated all the time?)

Regarding recovery again everyone’s different and every operation different - when I was younger I’d be up and out and fit within 2 weeks now it takes me a month or so 😂 Another thought is that if you’re having excision then that’s better than ablation and it may give you longer term relief and less chance of endo reoccurring in that region? I’m not sure what the science says but it’s the gold standard for treatment (though I’ve had 2 excision surgeries and it has come back in the same place!)

Sorry for rambling, it is a big decisions to make and if if you’re not in lots of pain then maybe ask if you can defer it for a few more months. However I would speak to someone close to you and get their opinion as lots of the time we put up with pain and downplay how much it actually affects our lives. Wishing you well, so sorry you’re on the endo’ treadmill xx