Currently on a 2 year waiting list for endometriosis removal and hysterectomy. Been dealing with this for over 12 years and I'm done. I work 50 hours plus a week and doing everything i can to keep afloat.After trying every pain medication under the sun, unfortunately the only kind that gives me relief are opioids. My GP has been fine with this over the years but now wants me to reduce.
I'm happy to go along with this if i have to (even though the timing is ridiculous when finally on the waiting list and the worst pain of my life) but its the constant guilt every time i use pain relief.
I'm made to feel like I'm weak, not helping myself and not as strong as everyone else for having to take medication. My GP has been great but has told me she's under pressure to get me off the meds. The nhs do really expect patients to live a normal life with chronic pain with very little medication to help.
I just feel so worthless and to be honest ashamed that I need to take this medicine. Sorry for the rant, I don't know where else to turn xx
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KM1986
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Hi KM1986. I'm so sorry, this must be so stressful. Has your GP advised on what the alternatives are in the two year run up to your surgery? Perhaps the Pain Clinic can provide you with some extra routes or aid in fast-tracking your operation.
It seems mighty unfair (and quite frankly immoral) of them to expect you to wait 2 years but take away the one thing getting you through the pain.
Thank you for your very kind reply. No alternatives, nothing else they can do - just need to "hang on" until my op. The pain clinic were even worse to be honest - told my to do yoga and take baths as they apparently work "just as well" as drugs.
I looked into private but its just so out of my price range unfortunately. I said to the clinician that said to me that doing yoga etc. is more effective than drugs, if this is the case then why do they prescribe them?
I did say that I find it more than insulting that clinicians feel they can tell me what pain I feel and what improves my pain when actually - the only person that knows is me.
To an extent, I understand where they are coming from with primary chronic pain i.e. when there is no obvious cause for pain however, with secondary chronic pain, there is very obvious reasons for pain i.e. endo - like your bowel is stuck to your pelvis. It's like telling someone with a broken leg to try yoga - to me it's exactly the same thing.
Quite right! I'm guessing yoga can help in the respect of flexibility and stress reduction long term (to reduce stress related endo flares) but to suggest it when someone is in that much pain is crazy. GP needs a kick up the *rse. Hope you get soon relief soon.
I’m under pain clinic hun . If you have endometriosis sometimes the pain can in the end if suffering for so long make you have the nerve condition fibromyalgia which I’m being tested for me but am more than likely to have with all the other issues I have as well. I asked the dr at the gp to refer me as I said I wanted a more holistic approach as I said I was very sensitive to opioids as violently sick when taken other medication they help but I’m away with the fairies and like you I work. The only suggestion they gave me was to just do my contracted hours only and not over time as doing too many hours makes my symptoms a lot worse . I have explained this too my boss but I’m hoping to find a less stressful job as I work in the care industry which is the worst job for fibromyalgia and endo . X I had to wait around six or so months . I was referred in the march April time and then I was seen in the November time . As they are all on the bseg treatment center they all know each other my specialist surgeon and the endo nurse as they are all part of the endo centre care where I have treatment in my local hospital . Are you under a specialist endo nurse as they look after your care if you have moderate to severe. Endo it’s worth speaking to them as well x
I think that's such a cruel approach - how can it be OK to tell someone "I can't help you with your pain for 2 years but also I'm taking away the painkillers that help you"... I'm so sorry love.
Have you tried low dose naltrexone? I was put on this for my pain by my gynae & pain specialist. 4.5mg only. It's been found that in low doses it works as an anti-inflammatory / painkiller and a lot of chronic pain patients are on it now. My pain specialist told me he sees most the women in Ireland that have endo and he puts all of us on it now. It takes a while to take effect but I did find that it reduced my baseline pain - it also usually is well tolerated so not usually side effects. It makes codeine less effective so would be mindful of that - but if you are being taken off your painkillers it might be the perfect time to try it. Might be worth printing a couple of studies from google about it, bringing it to your doctor and having a chat with her about it if it's something you are interested in.
Also, have you tried physiotherapy with a women's health pelvic pain physio? A lot of people with endo including myself get relief from this - not everyone - but generally you don't need a referral (at least in Ireland you don't) and it's another low-to-no side effect treatment so could be worth a go x
Hi allym92, thank you for this. Your first sentence almost made me cry.
I just think after being on these meds for almost 13 years, it's a very inappropriate time to take my medication away when I'm so close to surgery.
I've never heard of naltrexone so thank you for this information. My surgeon wanted to refer me to a specialist physio, but there isn't one in my health board so I'm not able to see one.
I'm sorry love that you have to go through this! I really hope you find something that will help you through this time until you get your surgery! Sending some love your way xx
I'm so sorry this is happening to you. It's so hard to live with this pain and the expectation that you just get on can really make you doubt yourself but you are not worthless or weak! You are strong and resilient and amazing; you have to be if you've put up with the pain, uncertainty, and misunderstanding that goes with living with endo.I echo what others have recommended: pain specialist and specialist pelvic physio. I found reducing stress at work and in my life generally to also help a lot - I imagine this is about having less stress hormones shooting through my body all the time, it also gave me more points in my day to rest or go for a walk etc. It was quite tricky to do because it involved reassessing a few friendships so I used a therapist to help (bonus here is that a therapist can provide so much validation and help with the shame and doubt). This is not a short term solution though, it took months and months before I really felt the benefit of a less intense lifestyle.
The final thing that was an absolute life saver for me was a Tens machine. I know they don't work for everyone but mine has made the biggest immediate difference to my life. When I am close to tears with pain it takes the edge of enough to be able to function. I started with a £20 one from the chemist but more recently splashed out on a more expensive cordless one and it is amazing. I can wear it under my clothes and no one can see it, there's no messing about with wires, I wish I got it sooner.
Oh sorry, I just reread and saw that you had a crappy experience with the pain clinic. I am really sorry.I have a similar response when doctors and specialists tell me to take a bath, do yoga, reduce stress. It is so invalidating and infuriating! It makes me want to scream and cry and rage. I feel misunderstood and not cared for. I then cope with all this by telling myself that they don't know what they're talking about and I just ignore them. Did this for years and years. However, I have more recently gotten on board with baths and yoga and relaxation as one part of the solution but definitely not as a fix all! For me it was the same as reducing stress in my life, the impact isn't immediate and doesn't provide the same level of relief as an opioid. More like how you generally notice a difference in your body if you really focus on eating really well for a month - there's just a general sense of feeling a bit better in your body/having less discomfort. I think doctors shoot themselves in the foot by suggesting things like yoga in a really patronising or inhumane way. It they actually connected to how it might feel to live your life in this much pain and were more honest with the limitations of these interventions, more patients would try them and not leave their appts feeling invalidated, alone and distressed.
You're completely right with this. I've also cut back on insane work hours (70 per week) and it's definitely helped. And I understand that baths, meditation etc all play their part. But they don't replace medicine. It really scares me that this is the stance some clinicians take nowadays. Funnily enough, the surgeons seem to get it and advocate pain relief. I did think to myself after this pain clinic appointment that this narrative of there's nothing we can do to help you, go and have a bath - could potentially be devastating for someone and make them question if it's worth living. That's how serious this info is. They don't get it.
Reading your story made me cry. I am also out of options and as others suggested I'm seeing a woman physiotherapist for pelvic floor release exercises, I'm doing pilates/ yoga exercises (check out Jessicavalantpilates on YouTube - she's a fellow endo warrior) and on acupuncture to help relieve the constant pain im in. I had to come off the opioids as they made me throw up.
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