Still pain after surgery: Hello, sorry if... - Endometriosis UK

Endometriosis UK

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Still pain after surgery

DAML8 profile image
10 Replies

Hello, sorry if this is a stupid question but if you've had excision surgery why is there no change to the pain i am in? I had excision surgery in February, (i have previously had 4 ablations and a hysterectomy, then my ovaries removed due to adenomyosis and endo). My consultant said he removed lots of endo, but i am still in daily pain (not post op pain...I’ve had enough operations to know the difference lol) what would still be causing me this much agony?

10 Replies
Afrohair profile image
Afrohair

Sorry you are in pain when I spoke to my specialist he said there are no guarantees surgery will help you feel better sometimes it can make endo worse I’m hoping what your having is healing pain but from a lot of research the more ops you have mean that you will very much have some kind of pain to deal with on a daily basis there is no immediate cure for endometriosis not even a hysterectomy I think the best thing to do would be to come to terms with the disease and try diet changes I’m sorry if this post comes across as awful it wasn’t my intention But If your really worried please contact your surgeon for more details you may have an infection or something adding to surgery pain it usually takes up to a year to heal internally I’m so sorry your suffering x

DAML8 profile image
DAML8 in reply to Afrohair

No it doesn’t come across as awful at all. I appreciate your honesty and to be honest I have kind of given up hope of being pain free anyway after so many failed operations. Every consultant says they can get me a few years pain free if nothing else but it never happens that way for me. So i guess i’m just one of the unlucky ones and need to come to terms with a life of pain. Thank you for your advice x

Afrohair profile image
Afrohair in reply to DAML8

I’m so sorry I didn’t want things to appear negative and dampen your mood as someone else said it can take up to a year for recovery internally and also the more ops you have the harder recovery.that Dosent factor in you being a year older etc . I’ve had 2 open surgery’s on my abdomen( not for endo) and my second was definitely the hardest .some endo sufferers have fast growing endo so decide to stop having surgery eventually and use diet changes to help I’ve not had surgery for endo yet but diet has really helped me x

DAML8 profile image
DAML8 in reply to Afrohair

No need to apologise honestly, i have pretty much come to terms with the fact that this is my life now. Funny you should say that...I have actually been thinking about not having anymore surgery. I have had 5 ops in the last 3-4 years and im no better off so i have been thinking it might not be worth putting my body through it all anymore. I will definitely try to change my diet. Any diet tips or endo recipe books you could recommend would be greatly appreciated x

Afrohair profile image
Afrohair in reply to DAML8

I have a post on meal ideas I’ve just boosted it to the top of the page there is also a book called nourishing traditions which is very helpful x

Afrohair profile image
Afrohair in reply to Afrohair

Gluten free and diary free are the way forward x

DAML8 profile image
DAML8 in reply to Afrohair

I will have a look. Thank you :) x

Marcia71 profile image
Marcia71

Excision can take a lot longer to feel full benefits from - up to 6 months to feel the full benefits. I too was really doubting at a few months after as I'd had a couple of ablations, hysterectomy and excision before my latest op. Latest op was for excision of deep infiltrating endo in vaginal vault (created at hyster) and I was in awful pain fro at least 4 months before I started improving. I'm now just over 7 months and so much better. Any pain I have now I'm sure is muscular - I'm told by pelvic physio I have an overtight pelvic floor so was just starting new physio programme to help when UK went into Lockdown so that's delayed things for me. I'd say it's still a bit early for you to look at physio but once you are at 6 months then do think about trying that as it would seem you've had a lot of surgeries and your pelvic floor may just be objecting a lot.

DAML8 profile image
DAML8 in reply to Marcia71

That is good to know. Hopefully I’ll be lucky and start to improve soon. I just feel so deflated after every failed surgery. My quality of life is poor and my days are filled with pain. Fingers crossed the surgery will turn out to be successful like yours. Thank you for sharing your story with me. I really appreciate it.

Bubble_by profile image
Bubble_by

I have the same thing... My laparoscopy was in early March and while I would say there was been an improvement in my pain (theres definitely less of it) I too, have pain on a daily basis. Like other people on here say, it can take up to a year for a laparoscopy to fully heal, so I'm living in hope atm 😅

However, I have pre-exsisting issues with my pelvic floor and pelvic pain issues (which I now understand to be caused by endo) and i cannot do anything more long-term for these things until September (which is when my follow up is and hopefully my pain clinic will be open by then 🤞) and I suspect surgery has made these issues worse in the healing process.

I know how miserable it can be trying all these different treatments and not having anything working, so I fully understand your situation and hope you find some answers soon 💕

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