I am due on my period (like, today) and last month was absolutely horrific to the point where about 5 different family members begged to take me to A&E but I just wouldn't because a) I felt guilty taking up NHS time and b) I couldn't physically move from the pain so the thought of sitting uncomfortably in A&E for 8 hours terrified me. However, as things are getting progressively worse, my GP and specialist have suggested that this month when the pain reaches its peak and my meds don't work I should try going to A&E so I think I might actually take their advice. However, someone I know suggested that instead of this I should make an urgent appointment with my GP and demand them to refer me for an emergency appointment at my local pain clinic. I didn't even know this was a thing and don't know what they would do different to the emergency department. I've had a little look through some posts on here about the pain clinic but not much info so I was wondering if anyone has done this before and if so, do you recommend it? What do I say to get referred? What is the process etc?
Thanks in advance 💛
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endo_the_stigma
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Sorry to hear you're dealing with so much pain! I haven't experienced going to A&E for pain myself, but I've read lots of stories on here of people who have, and they have often just been given more pain meds and turned away. And if pain meds aren't working for you, it sounds like you might end up waiting a long time uncomfortably, like you say, and not get much help.
I've also read lots of stories on here of people being referred to pain clinics. Some have found them really helpful, some haven't. I've heard pain clinics try alternative methods of helping you deal with your pain, such as psychological techniques, TENS clinics, physio, etc. Everyone's endo is a bit different, but I think it would definitely be worth a try for you, so that's what I would do. See if you can get referred to a pain clinic. If you can't, or it's a long wait, try A&E if you feel you need to. You know your pain better than anyone else! Hope you feel better soon x
Thank you for taking the time to reply. I am through the worst of it for now but in a couple of weeks I imagine I will be back in the same position so I'll just see how I go but last weekend I completely lost feeling and the use of my legs which was worrying. x
If you lose feeling/use of your legs again, definitely go to A&E! And even if it's better now, you should at least tell your GP about this, and be forceful. That's not something that should be ignored.xx
As CitizenErased just said losing limb sensation, movement certainly merits a&E/ investigation to ensure its not spinal disc related, cauda equina etc. I have had loss of sensation before ( could move limbs but delayed sensation). I had an mri which showed a disc lesion. My sciatic signs used to flare with endo which was accounted for also by severe endo. If the signs are better still tell your gp to be reffered to a spinal team. If you can't use legs etc this needs urgent invests ( if in doubt call 111 when I called before they said urgent,sent an ambulance and the hospital rapid assessment team prioritised ruling out cauda equina via mri).
Regarding a pain clinic I was told to go last year when my pain became refractory to all pain relief even opiates. I was told I had a follicular cyst by gynae but not been diagnosed with endo ( told it would go). I pursued more investigations and now in hindsight know I had grade 4 endo, adenomyosis, frozen pelvis, rectovaginal nodules, ureter nodule, repro tract severe scarred and attached to the sigmoid colon, an endometrioma.Which explained the pain- I have just had MDT surgery.
I think the main thing is for me that severe pain was my bodies warning sign. I am not sure what part of your endo journey you are in but have you had any recent imaging ? has your gp reffered you to gynae? Is the pain just during menses etc? ( mine progressed to worse in menstruation and ovulation but pain all the time).
Ultimately endo can cause horrific pain and you sound tough, but I don't think we should be forced to accept a pain level where being almost hospitalised is the normal. There are over issues endo pain can mask ( had a friend who thought was having a flare and actually had appendicitis). If in doubt call 111 I have found them most useful before in triaging whether they think I should go a&E or wait to see a gp etc. Yes a pain clinic is fair enough to manage pain but has your GP also considered reffering back back gynae?? Never feel like you are wasting their time, we only get one body.
Thank you so much for taking the time to write this reply, it is very much appreciated to get such an in-depth opinion/advice about my journey from someone who has been through something similar.
To answer your question about where I am at and whether my GP has referred me to Gynae etc; I was dismissed for almost 11 years with excruciating period pain which progressively got worse and then in the last 9 months, I pushed harder and eventually had an MRI where it was found that I have a retroverted uterus, endometriosis and adenomyosis (both clearly showed on the scan which worries me that it may be severe) and I am waiting for a date for laparoscopic excision surgery through the NHS as it is over £7k privately due to the severity of what they could see on imaging and the fact I would have to stay in over night.
Nothing was picked up on my spine through the MRI so I'm thinking its maybe the severity of the pain just causing spasms/lose feeling in my muscles maybe? I'm really not sure.
Every month gets worse, I am in pain constantly with maybe 4 good days a month, and my periods and ovulation are horrific - usually have to have a few days off work each month etc. I think next time I lose feeling/use of my legs I will do as you suggested and ring 111 and see what they say.
Again, thank you so much for replying and I hope you are doing okay, it sounds like you have had it really rough.
Really empathise with you being in such pain waiting for lap. I needed MDT surgery ( with colorectal urogenital)and was told NHS is a 18 month to 2 year wait. I was in pain daily, left my work ( to work part time online) and no medication was helping even induced menopause. In desperation I paid private, with the kind help of my brother who helped me pay part. I am 4 weeks post op now.
I'm glad your spinal MRI was fine that's reassuring. So from what a neuropelvic surgeon had said you can have endo even within a couple of cm near a nerve ( not always directly on it) and it can still affect nerve signalling. I had sciatic signs which seemed to flare up during menstruation initally. I was told when it happened to both legs though it is extremely rare to be bilateral but not impossible. Maybe worth asking if your under the care of an endo specialist if it could be this. But yes if it happens again I'd try calling 111. The spinal team always said if any saddle/ buttock/ genital reduced sensation or pins and needles, issues urinating ( retention) or defecating accompanied with any limb innervation issues or complete loss of limb use, these are always treated as emergency.
Oh bless you, that sounds rough but I'm glad you managed to get your op sorted (even if you did have to pay private) - hopefully it will do what you need it to long term.
Thank you so much for your kind words and advice♥️♥️
I was referred to a Pain Clinic but had quite a long wait (6 months?) before I was seen. They were willing to offer more options for medication than my GP had as they have more experience, they did also discuss other non medication options, but were certainly happy to give meds, and to give me regular reviews until we were agreed that I was on the best combination. I think you have to face that there will be side effects from the meds and balance it out with the pain for the best quality of life you can.
Different areas will have different wait times and the option of asking for an urgent appointment is worthy looking at,
I am shocked at your GP’s attitudes, surely A and E is for unexpected events not an option for something that can be predicted. They should be able to prescribe medication for flare-ups. The only difference at A and E would be if you needed it given into a vein ie via a drip they can do that.
If you are going to A and E it is worth phoning NHS 24 first for advice, sometimes thy can give you an appointment time at an out of hours clinic ( at least that’s how it works here,)rather than having a long wait at A and E.
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