painful cramping : Hi everyone So, I had... - Endometriosis UK

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painful cramping

Emmynoo profile image
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Hi everyone

So, I had laparoscopy/laparotomy almost 4 weeks ago. Small patch of endo was found as well as adhesions. My bowel was stuck to my left falopian tube and womb which had to be separated and repaired.

Over the last few days, I have been having extremely painful cramps - exactly the same as I was having during my period before I was put on zoladex. I have been on zoladex for a year. I am upset and concerned that the extreme pain I was in initially had returned despite surgery and still being on zoladex.

Has anyone else had symptoms return so quickly after surgery?

Thanks

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Emmynoo
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Am sorry to hear you’re in pain again after such a short time.

Pain is a complex beast. Like donkey says in Shrek “ I’m an onion , I’ve got layers …” It’s presence can indicate there’s a physiological reason such as returning endo, endo that’s not been spotted and remains, adhesions forming, healing, inflammatory response from infection , tissue tension and damage in an area developed by your body coping around the endo process or that the pain pathways have remained hyper vigilant and can trigger at a hairs breath. All are real causes for pain. ( ie not in your head !!) I assume that you’ve had check ups and aren’t running temps or other signs of aggressive infections for the medics to need to intervene, endo can and does return quickly and that has to be a watch to see how it develops. Pain can come from a number of causes so it’s a question of nibbling away and trying differing approaches to improve things.

Cramping can be from more causes than just endo. Some think it’s down to prostaglandins being poorly balanced causing worsening around specific points in the cycle. @leah.Brueg on instagram has got some interesting discussions around this subject. Others think magnesium deficiency has a role especially if the cramping is associated with adenomyosis.

Chronic infections causing inflammation whose presence is associated with endo development can still be present Post surgery so it’s worth considering . The two that I found were an issue and common to a lot of endo folks were Klebiesella ( associated with UTI’s and weak bladder control and can cause lactose intolerance post infection) and LPS that lots of people find Berberine helps with. Tackling these may help reduce new sites for endo taking off if they are right that they’re maybe infective agents involved with the promotion of lesions.

Inflammation of tissue can be associated with leaky gut - another vulnerability with endo sufferers . Getting the gut to heal, stopping the irritants finding their way inappropriately from the gut into the blood stream, really helped me. I used high quality Omega 3 ( with both EPA and DHA balanced well - can be problematic with vegan versions ) to sort out mine once had also figured that often endo folk had a higher requirement of it. It knocked the pain right on the head for me but it’s a slow burn not an overnight thing ( 3 months is the usual advice)

Some women find Serrapeptase a protolytic enzyme helpful to discourage the formation of new adhesions and breakdown old ones. (Can’t use them if you’ve got internal metal work like plates on bones or stents etc as it also clears that which isn’t okay … folk start rattling instead ) .

Pelvic floor mobility and strength can be a factor and often a BSGE centre will have specialist physio’s to help with this and reduce the pelvic floor reactivity . I found this plus hypopressives helpful in managing pelvic mobility.

Lastly I’ve found little if no relief with pain relief or hormones over the years but some women find central acting pain relief with things like nortriptyline helpful as it reduces the pain pathway signals. It works on the principle that these have become over stimulated with the pain over years.

A lot of people dealing with chronic pain are also finding a pain education programme helps with the day to day management of pain a useful way to improve relief. The trouble with attending courses or just seeing a GP /specialist is they aren’t there on the day to day basis to deal with the shitty times. You’re on you own for the most part and that’s tough and demoralising.

I’ve found for the unwinding of pain pathway triggering the app “ curable” useful. I was given six weeks free access via my Dr on the NHS and now pay a small access fee to continue as it’s been a real positive. I was pretty sceptical as have tried all manner of things -like many of us - and the inference “it was in my head “ really was my point of resistance as it had been thrown at me too often as the root cause of my issues ( if only ). Having had so much pain dismissed over years as the diagnosis was missed it was a sore point ! The long and short of it though is all that pain has caused long term changes and responses and I had to also tackle that to be able to work out what was pain from physical cause or pain that was old pathways firing off because they were on a hair trigger. The latter variety I have now got ways to tackle& that’s freed me up from a lot of daily pain.

Sorry this is so long but hope you find some useful points & even comfort in some of them. For me it’s not been one thing that’s been the magic bullet . Whatever the cause pain dictates and is exhausting and small improvements over time can only be a good thing x

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