is it just me being bombarded with 'memory of pain' by specialists?

[filous]

Hey hope you're all good.

Recently my endo specialist told me

"you've had ablasion, Prostap injections didn't help you so you can't have endo anymore, it's memory of pain".

I saw the pain specialist who told me it doesn't matter if I have endo or not, there is pain, and most of it is going to be memory of pain, so we need to try and refocus and get rid of inflammation in the body. The body remembers things that cause us pain and triggers the feeling of pain in order to protect the body.

It really seems to be the buzz in NHS Wales. It makes me feel like I shouldn't be in pain if i'm honest, like I'm making it up. I don't understand why not give me a scan or laparoscopy to check?

Has anyone else been in this situation?

Also has anyone had any luck of any benefits for endo? I'm nearly maxed out on cards because my wages was halved and now on zero pay. We get a bit of universal credit but PIP came back as zero points despite me describing how I cant move, wash etc most days. It was returned for a reconsideration, that was zero too. Now the next step is a tribunal.

Thanks x

[Endolemon]

Hello, it is just ridiculous 🤦‍♀️If you are in pain then you are in pain. Some doctors treat us like insane!

I’d recommend don’t do PIP appeal yourself. I have applied myself and got zero points too. Now doing MR with company fightback4justice. There is only a small charge 💛

[Roxita]

"Memory of pain" is a real thing. Anyone who has been in chronic pain actually has changes in nerve paths that do make the whole nerve system different from someone else's nerve system who has never been in chronic pain. This has been documented for other chronic pain conditions as well, not just endo.

I'm not saying that this is 100% what's happening in your case because there could be many other variables and of course it could be some other reason for your pain. But I wouldn't disregard "memory of pain" and changes chronic pain has caused in your nervous system. It's not all in your head, you are in pain. But the pain could be linked to changes that happened due to chronic pain before your treatments. Fortunately, or unfortunatelt another operation won't change this.

If I was in your shoes, I'd give it pain management techniques a try at least.

[filous in reply to Roxita]

Yeah i don't disagree with the concept at all, it makes sense and I've been offered steroid injections in my stomach, i will try anything!

I'm just finding it strange that they won't even check for a possible cause and just wondered if this was the norm now. I know a lot of policies have changed since covid, it gave everyone the opportunity to tweak things. I've read that ablasion doesn't take all of it and it could grow back, unlike excision that removes it from the root so to say. The European guidelines on endo also says that it is not conclusive that Prostap injections would help so I don't know why I was dismissed so quickly and wondered if anyone else has had this info.

No evidence exists on the effectiveness of GnRH antagonists for endometriosis-associated pain (Brown et al., 2010)

If you broke your leg you'd get checked, X ray , treated etc and if it still hurt they would probably xray again rather than just say you've just got memory of pain.

[K2023]

Hi, it is awful to hear the words nerve pain but after you get your head around it ,it makes sense.My consultant told me that my Anatomy was completely distorted and the mass I had for two years was huge it was pressing against all the major nerves,I even have phantom UTI symptoms because of the nerve damage in bladder .He said once I’m recovered from surgery I may have days were I feel the pain like I did with the mass there.I Initially thought I’m just being fobbed off in advance so I started looking into it .There is no way our bodies can’t be nerve damaged from the cause and the treatments we go through.As soon as I’m recovered I’m gona look into nerve pain management and what department deals with it.I hope you find your answers but don’t feel it’s in your head because it’s certainly not, keep fighting big hugs.xx

[filous in reply to K2023]

Oh I have the UTI symptoms. Dr phoned me a bit annoyed yesterday and said my sample came back negative - again. Every now and then I have pressure and pain when finishing urinating and sometimes a tiny spec of blood so I have it tested but always comes back negative.

Wishing you a speedy recovery x

[K2023]

it’s a vicious cycle but i would ensure they are checking your ureters and kidneys and do not let them fob you off .Endo isn’t picky we’re it goes and if your seeing general Gynaecologists they just don’t seem to have knowledge of it growing outside it usual areas.Speak to your GP again and tell me you are on this forum and so many woman have Endo on bladder ,kidneys and ureters it could also be that Endo is around your bladder rather than invading it ,but all give urinary symptoms,it took me a long time to get the right diagnosis .xx

[filous in reply to K2023]

thank you for your advice x

[EndoJaz]

I was told this after my hysterectomy and I carried on fighting for the laparoscopy in which they then found further endo. I am now currently on UC as had other surgeries for my bladder prolapse and elbow surgery but as soon as I mentioned the bladder problems in my assessment I was told I could get UC. I think it gets reviewed now and again but like you I find it hard to cope with all the pain and when u get told it’s all in the mind it’s the most annoying thing when you know that pain is there. Hope all improves for you soon x

[Endosufferer1]

Tribunal sounds great! Go find another doctor, pay private if you can to tell him to get an MRI! Ablation = nothing has been done. With ablation, endo comes back in three months!!!! It's excision surgery that works!

[Avourneen]

Hmmm your endo specialist doesn't sound very good. I had an ablation when I was living in Wales with a so called endo specialist. Two yaers later yje pain was horrendous I got an MRI and I had stage 4 DIE the gynae who did the ablation hadn't done any scans and had missed this and severe sdenomysiosis.

He hasn't scatually dne any proper checks or scans so it makes no sense at all to say this. Go and get a good scan with a specialist sonographer so you have actually been checked out properly.

Memory of pain is a very fashionable thing right now, it can be a real thing but that doesn't mean all pain is caused by it and there are no other possibilities. Get checked out by someone who really knows about endo.

[BloomingMarvellous]

It’s a joy isn’t it ? Sorting out poor diagnoses , poor treatments, guesswork , actual inflammation, nerve pressure / damage, lesion damage, tissue dysfunction, tissue memory and our brains sophisticated management of pain both short and long term. It’s easy, so easy to crave the affirmative opinion and certainty that X is the answer and the whole answer both as a physician and a patient. I only wish it were THAT straightforward and the trouble with a lot of this is that absolutist swagger that is presented or foisted upon us as the ONLY option or thing it can be.

Each of us is a unique blend and journey along this path and different techniques properly applied can offer, or not, some relief . When it’s poorly done it complicates things so badly. When medics don’t admit or even know they’ve offered a dumbed down service it sadly becomes more of a burden to us the patients than it ever will to them personally (apart from their obvious frustrations at “ failing” as a medic to wit they respond with various degrees of honesty or not ). Offered properly, delivered at the highest standard with sufficient support many of these things can be useful. In truth though how often does that really happen ? Many of us are left with half an answer , half a treatment process and that’s not good enough. Some treatments are a no way back approach and that’s always hard.

I like to think of each treatment suggestion as a filter which either will or won’t enable me to manage this disease process. I have an internal litmus paper that goes through a lot of questioning as to how qualified , effective, reversible, applicable, best available, how much depends on me or them delivering it , trust , history of whether it’s proven and to what level …and yup my gut instinct. If I won’t lose anything by trying for a while I will give it time of day for a set period and assess it for myself. Stress and drama however I give a wide berth. Likewise dietary extremes that cause isolation and unbalanced nutrition (like sticking to a FODMOP regime for some daft length of time instead of getting understanding as to why the gut is in a pickle ) So despite having been mindful and done in various ways over the years self care stuff, I did entertain the pain management my GP suggested. It’s taken me a while to do but it has been working and useful and it gives me an element of control back. Be clear however I do other things ( few actually delivered by medics have to say 😂) I still get flares and pain but it no longer has the same domineering effect. It’s my combination of things that helps me manage this disease. It’s not a cure and should never be put in the stead of good diagnosis, appropriate surgery, or inflammation prevention. It helps me discern the kind and level of help I need and to be far more directive about that. I won’t accept shoddy assessments because they are a waste of my breath and precious time. I guess I might be my consultants nightmare! It’s given me a degree of self confidence in asserting and pushing for good care and not accepting crap or faffing by medics “ who heard from a friend of a friend “ that XXX was worth a whizz for endo. It’s helped me know when it’s the endo speaking or not and that at the end of the day is worth it’s weight in gold.

My GP gave me a free six week trial for the Curable App and I don’t regret it one bit. Trying has cost me a bit of effort but whether it helped or not will be useful for all concerned. It doesn’t have serious bone changing side effects ,raised risk of cancer or severe consequences for my gut or my abilities to drive or operate machinery which every other option seems to come packaged with. For me it’s a huge plus.

Sometimes the messenger is pretty ignorant and clumsy but the advantage of the app is that you are in charge of how you handle it , how much you do and it’s always there when needed . You are never left waiting for that fleeting appt with an unknown pain consultant and that is key. It is however part of not the whole of the puzzle and never let them foist that particular one on you.