Hi all,
I am on the hunt for pain reduction ideas, and have had some links/ideas from a post on the Pain Concern board (I have a few coexisting health issues causing pain).
Has anyone every had a hypogastric nerve block for endometriosis - I was just hoping to see if it worked or was offerer to anyone.
My doctor wants to put me on amyltripaline which I am whole heartedly resisting but if I don't get pain relief soon I actually might just cry.
D x
Am so sorry to hear of your pain situation.
You don't outline why you prefer to stay away from this GP suggestion but I trust you have your own good reasons ! I would say however that the GP is right on the money in terms of how to try to tackle endo pain instead of the codeines, opioids, naproxen or paracetamol routes that are prescribed to often little effect or with decreasing returns.
For reassurance there are some of us who do well on the amitriptyline route or family of meds . There is prejudice against trying these meds because they were originally used to help relieve depression but actually their remit has found to probably be more effective as pain relief instead. There are some caveats when starting them and monitoring use early on especially is important to ensure like other classes of antidepressants they don't trigger a down swing. Usually that's on much higher dosages than used for the pain relief though. Many don't do well on amitriptyline because of its side effects such as sleepiness and nausea but instead do tolerate its near neighbour Nortriptyline which is less riddled with side effects . Every pain relief med comes with the down side unfortunately. For some it is just not suitable.
For those who aren't familiar with these meds. They are used because they work on a different pain pathway along the nerves which is highly relevant with endo. Endo tissue is extremely nerve dense - more than your standard tissue. The growth of the nerves here is also compromised by the fibre being without the usual protective sheath which literally means the lesion is raw nerves. Which makes the pain experience totally understandable! Opiod based meds and the likes of paracetamol don't work along these pathways so really aren't effective for controlling this element of Endo pain. I found they completely messed with my gut flora making the digestive symptoms worse still and severe constipation. Nothing sorted that . Paracetamol reduces one's stock of Omega 3 which is one of the nutrients key for hormone regulation, anti inflammatory etc and often found as low already with endo sufferers. Worse than that low omega 3 levels means more nerve pain as a consequence, which for endo sufferers is totally pants . Ultimately it does little to serve us bar open us to more pain long term.
Endo like any long term condition with pain can set off Centralised Pain Syndrome . Long and short the pain system switches on and irrespective stays on like a maverick fire alarm all week. Even when there is no immediate reason to switch itself on. In that situation very little works long term to keep the system suitably off ie out of pain and out of the stress of pain. Tackling the over sensitive system takes a different approach to work; one of which is via medication like the triptylines, the other is to use a programme to get at the problem. You can effectively use both together to really knock it out of the park. While it's not always relevant to apply techniques like this, many women however find it significantly turns the volume down on their symptoms without side effects. The best available programme for this is the Curable App. It's free trial for 2 weeks if you self start - my GP gave me access to a 6 week free trial and thereafter I pay a small yearly fee. It's been a remarkably effective way to manage the pain and I am really happy to suggest others try it as there are zero side effects ! It was a doubtful me that started it & it does take effort to run through the programme but now happy to use as part of the tool kit.
As I was at the end of my tether with the pain, unable to move or sleep and feeling life was done my GP wanted to find a way of giving me relief and head start on the nerve pain . So I used Nortriptyline after feeling pretty reticent and having not done okay on amitriptyline. I've found you can take very effectively a dose lower than the recommended lowest dose of 10mg - I use 5mg per night after the initial doses because I was too sleepy in the day. I find without it the remaining real pain does tip me into a a place where the pain degrades my life too much, so I've stayed at that dose as well as the curable app. Now I sleep, stay mobile, can think , less prone to the emotional darkness that comes with long term significant pain. It's been a journey. As long as I drink plenty of water I've found the dry mouth/ sluggish gut isn't an issue with using the meds but imagine if you didn't it could be pretty uncomfortable. Drink water and it's not a thing in my experience.
Both these together have bought me the capacity to tackle other ways to keep the Endo in check and stay mobile. For me getting quality of life again has been the best because before life wasn't worth living. All of that said a cure would be even better . Centralised Pain is no joke and it's worth a crack at for any of us to gain a scintilla of control and ease back in our worlds.
Thanks that is a really helpful reply, and useful insight.
I have a ridiculously busy life, 2 kids, high pressure job and a husband who works in the USA quite a lot. I think my issue is I can't tolerate side effects of medication - I need mental clarity, I am already fatigued and don't want to make that worse.
I do worry about the potential impact on my own mental health,. My job requires resilience and we have have a lot of death and illness in my family recently. I am well but the thought of taking anything that could alter my otherwise positive disposition also worries me, and puts me off those types of medication
I've just been diagnosed with trimeural neuralgia in addition to my endometriosis, adenomyosis and back issues. I also currently have tendopathy in my shoulder...so the pain is just some form of hell which is making me reconsider my stance.
D x
That's a stack and a half of stuff to juggle. Can see why pain on top feels the overwhelming companion you don't want along the journey. As positive as you are there will no doubt be a stress attached to all of that and stress directly fuels Endo. Endo chemistry also causes mitochondria cellular dysfunction building up high levels of lactic acid that we are less able to discharge efficiently, making us feel like we've done , correction we have done a marathon even though it's been a mere 3 mile walk or half a days work. That includes the brain. Pressured high functioning work, discomfort preventing good sleep, being so busy and life events all will take a bite out of anyone's energy status ; no wonder you are fatigued.
Those who are most likely to suffer from Centralised Pain are high achieving individuals with perfectionist tendencies. I can totally own that 😂 but it was a tough lesson to swallow . I wasn't being kind enough to fundamental needs and somehow they slipped down out of sight as I accrued more responsibilities with family and age. Add to that the chaos that fuels Endo from peri-and actual menopause plus the brain fog that came in tow with it meant my pain levels skyrocketed. I needed to tackle the whole caboodle .
If you've not come across the resource on the Balance App podcasts on perimenopause etc then it's worth an explore. Looking at testosterone from the stand point of pain, endo ( low testosterone is oft noted with endo sufferers) and brain functioning is also relevant. There are discussions here on endo and menopause. I found my medical teams weren't across this for the most part and it was a big factor.
We expect enormous amounts of ourselves without a second thought but the question is whether the pain encountered is our body signalling its limits, albeit deeply unhelpful/inconvenient in trying to struggle on. Sometimes we keep loading up without fully appreciating the weight or checking in whether it's reasonable long term or compatible with being well. For now some respite from the pain while you can take a beat to configure a manageable amount for you seems top priority.
Your brain will be better with some quality sleep and not necessarily feeling every bit of pain so hopefully the exchange will be a relatively fair one. Admitting that something is too much is a positive, listening to the voice of pain can become a win. Shutting out signals of alarm can be to our detriment - working out what's really causing the alarms to be sounding may take a bit of time to unpick but should be a fruitful long term solution.
Hope you have a really peaceful and less painful festive break with your family x
Just an addition to the very informative reply you have had alread.y. I take nortryptyline too, and I find taking it earlier in the day, late afternoon for me, means I am less dopey in the morning without it affecting me in the evening. I think to some extent it work by making me sleep at night even when I have mild to moderate pain, I take 20mg, can manage with 10 if the pain’s not too bad. A dose of 50mg was suggested, but ther is no way I could ever function on that.
Hope this helps a little. Xx
50mg I'd be on the floor 😂😱
Thanks, it is really useful to hear some positive experiences. Being able to sleep would be an added benefit. D X
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