A friend of mine is an advocate for LDN and keeps going on about how much it will help me. I am obviously reluctant as I have tried hundreds of different things over my 30 years with endo and nothing has helped me. I am on alot of meds and I am just reluctant to come off all the drugs to start something new that my gp wont prescribe. There is testimonials that LDN helps with endo pain, however I havent found any post hystorectomy and I am just not 100% as my hormones are all ovr the place as well as my horrendous pain, anxiety, etc
P.S. (I dont want to scare you all, so just to say, I was misdiagnosed for 20 years and by that time my insides were stuck together and endo was all over my bowel, bladder, ovaries, womb etc. I had a full hystorectomy to try and aleviate the pain but unfortunately it didn't work for me. Again just because I have found nothing to help, doesn't mean many things might not work for you if you know what I mean. As there are many options before hystorectomy that you can try and do work for some people)
Sending you all massive hugs xx
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Lubu
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So sorry to hear your story. Compared to other pain relief options it has a good side effect profile and I have heard people say really good things about it--though never from an endo sufferer. It seems worth a try. Thanks for bringing it up as I hadn't thought of using it for endo pain. Where is it available now in the UK? I'd looked into it for fibromyalgia a while back but the Scottish pharmacy that used to prescribe and dispense it had stopped doing it at that time. I'd be really interested to hear your results if you do try it. Wishing you best of luck and some pain-free days. xxxx
Hi Lisa, thank you for your reply, my goodness you have a lot going on. Im glad you got relief forom your fibromyalgia. I have a freidn who suffers badly from this. I think I will pass your reply onto her if that is ok??A friend of mine had mentioned it to me so yesterday I began to research it. I have found a few people on the LDN research trust website ldnresearchtrust.org/. I havent got to the stage of looking up where I can get it as yet. The thing is, because everyone endo journey is so different , I havent found anyone that is similar to mine. I had asked my GP about it a few months back and she said no . She wasn't so keen as the NHS don't prescribe it and she was reluctant even more so due to the cocktail of different medications I already take along with going through the menopause. The thing is, I am on alot of morphine each day and you have to come off that completely before taking the LDN. I struggle everyday even with the morphine and to be honest, it terrifies me the amount of pain I will need to go through coming off morphine as that is the only thing that allows me some pain relief to get out of bed in the morning . Its a difficult one. If I do find out more information good or bad, I will post on here in another reply.
Yeah, I don't think you can get it on the NHS and most GPs here would have no idea what it is, unfortunately. I think there may be some use within the MS population, but it isn't generally accepted outside that. The standard dose for addiction is much higher than people use for pain relief and so it would have to be compounded specifically for low dose use. This is common at pharmacies in the US, but there are only a handful of compounding chemists in the UK. All pharmacists do here is count pills and bag them up, no actual mixing. Funny that GPs are happy to prescribe morphine but not something that uses your own body's pain relief system and has few side effects! Since LDN is all about the opiate receptors I'm not sure how it would work for you if you'd been on morphine a long time.
I don't actually have a lot going on with myself. This is all my 19 year-old daughter. I looked into LDN a few years back when she was bedbound with ME/CFS with a lot of fibro-like pain associated. We got her recovered to the point where she had "only" POTS symptoms left and this year was able to go to uni. She was loving it. Some POTS flares along the way, but she'd made lots of friends, was doing amazing with her coursework and seemed to finally be getting her life back. Then a few weeks back she started having severe pelvic pain radiating to her back. Went to A&E but no help. Just an ultrasound and bloods which showed nothing, really. No painkillers helping (though only tried naproxen and that level of thing, nothing stronger yet). So I brought her home and am paying for her to have private gynae investigations. Seeing her bedbound again, in so much pain, I just can't bear it. She's having a lap on Saturday, but if they find nothing and she has to cope with this pain I'd very seriously consider LDN.
The Scottish pharmacy Imentioned used to do prescriptions themselves after a questionnaire for patients. Not sure what happened with them.
Oh Lisa, I really feel for you and your daughter. To be doing amazingly well and then to have the rug ripped from under you. You must be so worried. Do you think it might be endometriosis?? The good thing is (if there is one), she has age on her side and there are so many different things that can be done to stop the endo from growing and possibly even taking it away altogether. Please let me know how she gets on. I will tell you that when I was about 22, I was diagnosed with CFS/ME and then realised years and years later that I had been misdiagnosed for 20 years and it was infact endo that was causing all the symptoms that led to the ME/CFS conclusion from GP.This is more than likely not the case with your daughter, but I thought I would let you know . By the time I was diagnosed, I was late 30's and as per original post, my options were extremely limited due to the severity and no intervention to try and stop it. If I have learned anything, its just keep pestering GPs, consultants. I had a second opinion after being fobbed off being told it was all in my head and i must have a really weak pain threshold, like you if it wasn't for my Mum I dont know where I would be. it was that second opinion that diagnosed endo after a laparoscopy. Best of luck and please let me know how your daughter gets on. Please feel free to contact me if you ever want to chat . big hugs xx
Thank you for all the kind words. I do think it could be endometriosis for a few reasons. She's always had heavy, painful periods. She has POTS (postural orthostatic tachycardia syndrome) and people with POTS are 4x more likely to have endo than other women. She had an episode of severe unexplained pelvic pain in 2019, but we only got as far as an ultrasound then which showed nothing. The pain gradually resolved and so it was left at that. She's been on continuous combined birth control since around that time so things have been suppressed. This recent pain started with some blood, as well, so something's going on. When I hear stories like yours it makes me think I'm doing the right thing to pay for private care to have a look inside. It just isn't right to be made to wait until things are so complicated and irreversible damage has been done. Terrible. I know something is going on with her so even if it isn't endo, maybe they can see and resolve something. My dream scenario is that they find something, excise it, and that actually improves her POTS, as well. I've heard that can happen as the endo can cause so much inflammation that everything is affected. Wishful thinking, I know, but she really deserves a break like that
Very interesting to hear you were also diagnosed with ME. I think for so many girls, all these symptoms start around the onset of puberty and menstruation. Fatigue, pain, etc. It's not a coincidence and I hope one day all the pieces of the puzzle are put together and people don't have to suffer for years before they're taken seriously. There just don't seem to be enough knowledgeable and caring doctors out there.
Yes, sounds like endometriosis. But I promise you Lisa, catching the endo at this stage is a good thing as you are right, it is possible for them to lazer the endo away and for her to go and lead a great life. My sister is living proof of this and I have 1 niece age 10 and 1 nephew age 14. She still gets bad periods but it is well controlled, so dont let my story worry you. I totally agree, it is all linked back to puberty and your first period. Its just awful that the diagnose takes 8 years STILL. At least it has got better over thwe years but still not good enough considering everything we go through and the fact that I couldn't have kids. I know I am not the only and it is really tough to get your head around. Again your daughter has age on her side. I have really enjoyed speaking with you. So yes please keep me updated and in the mean time please send me a message if you can I can help. Big hug to you, you are a wonderful MUMMA xxxx
Hello Lisa, just wanted to chip in. Read my profile. I also just wanted to add to anyone reading this to head to the ESHRE endometriosis patient guidelines which were passed to me today by Lindle, another active member on here. It’s updated and current and things have changed slightly since my diagnosis many moons ago. Google it, it’s easy to find online. It’s the best thing you can read. I have it in PDF form but unsure how to upload on here. It needs reading by everyone, medics to mums and all endo warriors. X
Thank you vey much for your advice. I read your profile and you're the same age as me. I never had endo, but have had recurring dermoid cysts--my mother had these as well--and lost my ovaries age 40 because my symptoms were ignored until it was an extensive mess with adhesions and lots of pain. Getting rid of my ovaries was the best thing that ever happened to me moodwise and everythingwise and for my particular circumstances (already had 3 kids, suffered from severe mood issues around periods, getting recurring cysts) but I know it isn't the right thing for most endo sufferers. I have no idea what they'll find inside my daughter. It won't be dermoid cysts as those would have showed on an ultrasound. Could be endo, but could be nothing visible, I guess. That would be the worst. If she has surgery and is still left with pain and no answers. If it is endo then I'll be sure to read the patient guidelines, but not jumping to conclusions just yet. Her gynae is a BSGE member and heads the NHS endo clinic at the hospital, though we're seeing him privately. Daughter's POTS consultant, who we love, has said we're in very good hands with this doctor, so that was reassuring.
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