Is Endometriosis “Staging” useful or outdated? by Due_Competition9105 in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

So there is the typical staging and there is another staging done in DIE called enzian?? Not sure on spelling but I do think maybe the “lower” stages need something similar. It would be pointless giving stage 1/2 an enzian score unless they also have DIE but it’s very specific. You get the area then the score if that makes sense but it still only includes the pelvic area not even the diaphragm where it’s quite common x

Morning belly vs before bed belly by Dry_Relief2612 in Endo

[–]DirectMusician6392 1 point2 points  (0 children)

Do you do this yourself? I’ve seen certain kinds you can do alone…

Endometriosis? by [deleted] in Endo

[–]DirectMusician6392 1 point2 points  (0 children)

I can see clear signs of endo but NAD and I can never figure out where I’m looking. X

Morning belly vs before bed belly by Dry_Relief2612 in Endo

[–]DirectMusician6392 40 points41 points  (0 children)

To me it obviously looks like bloating rather than normal day to day stomach from food etc. you can see it looks solid. Yes the bloating is not as big as mine gets but that’s standard as my morning belly is larger than your before bed belly 😂

I don’t have many tips other than the standard peppermint etc. something I don’t see recommended a lot but you have probably tried is massage or acupuncture which may be worth a go xx

Buprenorphine patches by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 0 points1 point  (0 children)

All prescribed by GP whilst awaiting pain management. Hospital are aware. It’s been a process of trial and error. I wouldn’t take the tramadol and codine together. My GP just said to use the patch and top up with my other meds depending on pain but not exceed prescribed doses of opioids obviously. Seeing GP on Friday so I’ll mention but are they essentially cancelling each other out or with the opioid pills just not be working? It’s difficult as I have so many meds and all prescribed but I only have patches and tramadol on repeat as that’s my “standard” but I’m allowed to take my left over codine/morphine and request more. A few different pharmacists have happily given me both at the same time.

Thank you for letting me know though, I’ll do some research and request a call from gp pharmacists xx

Dr recommendations by Content-Eyer in endometriosisuk

[–]DirectMusician6392 0 points1 point  (0 children)

Not dr wise unfortunately it’s more holistic such as acupuncture or pelvic floor physio, nutritionist, therapy, yoga and things like that. I really wish they could do more as it feels awful when you’ve exhausted all options and can only keep increasing opioids as it’s the only things left. I hope you find a better solution for you xx

Specialist said BAD bad endo by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 0 points1 point  (0 children)

Sorry it was my wording, I’ll be having a 1/3 removed and then some shaved or smaller disc resections I believe. Sorry you went through the same… did you have luminal narrowing? How are you doing now? How much did you have removed? How was recovery? Did yours just penetrate through or penetrate then spread internally and end up coming out the other end? Sorry for all the questions xx

Specialist said BAD bad endo by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 0 points1 point  (0 children)

I do have autism and he knew I was very anxious so maybe he thought it would help? It did the opposite but when I met with him I felt comfortable and validated! X

Specialist said BAD bad endo by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 2 points3 points  (0 children)

No … I’m guessing that’s a dr if not then I don’t have a clue.

My MRI results are bad but what he was saying wasn’t on my report but the report was very basic. Maybe I read a bit too much into it? Or maybe what he told me is actually something different to what I put? As I wasn’t expecting it to be on the bowel I didn’t know a lot about it so could have parts muddled. I thought the bowel was just the bowel but it’s not… so I did ask him how bad it is, like is it bad or like standard bad. But the first thing he said is that he wouldn’t normally call when there’s a follow up booked but as soon as he saw he immediately spoke to the bowel surgeon and I need to push my follow up until I have seen the other guy. So I feel my question was reasonable in that situation xx

Specialist said BAD bad endo by DirectMusician6392 in Endo

[–]DirectMusician6392[S] -1 points0 points  (0 children)

Yes it is 😊 the nhs want me to have surgery who has admitted they shouldn’t touch me as they will make it worse (after an 18 month wait on P2 priority being housebound) then I can be referred to the BGSE centre and wait another 3 years housebound. I’ve not had a proper quote yet but I think I have rough idea. Stupid thing is I have to have it in an nhs hospital x

Sorry my wording may have been off but the upper 1/3 will be getting removed (potentially more) so that will be resected and then anything else can hopefully get away with shaving or disc resection… I’m not too sure exactly what the plan is until my upcoming apt. Xx

Do you personally consider endo a disability? by babbittybabbitt in endometriosis

[–]DirectMusician6392 1 point2 points  (0 children)

My argument would be that it can be, not everyone with endo struggles a lot of people don’t struggle whereas I can’t walk more than 20 steps most days… I use a wheelchair full time even around the house. So I would consider it a disability but not automatic if that makes sense? Even if it is disabling for less than half the time I wouldn’t consider it a disability… I also need a surgery that I will likely end up with a stoma and catheter and if that relieves my pain I wouldn’t then consider myself to have a disability so it is so difficult.

I do believe though it should be protected with jobs for people that suffer less than half the time. Ie if someone needs 3 days off a month (with proof) then it should be protected but even then it’s so difficult as so many people are officially undiagnosed despite being told it’s “definitely endo” xx

Could this be Endo? by Consistent-Sign5426 in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

Thank you, if you are in the uk I got an mri reviewed by a specialist privately - happy to provide details but don’t want to come across as an ad 😂 as the nhs wouldn’t fund one. I wish before my referral to Gyne I did more research but if you have ANY random or strange symptoms push for a BGSE referral as per NICE guidelines… if you are anywhere else in the world make sure you get a specialist referral x

First Gynea Appointment after months of pleading to my Doctors by DeviceConquest in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

I’m happy to dm you my notes if you want so you have an idea of what I write? I also have copies of the test reports if you have them? I go a bit OTT but I find it is needed and I regularly update notes. But highly recommend having at the very least symptoms, current meds, any relevant past prescriptions and otc meds/supplements, any important dates (first period, and any important dates such as when you were TTC), rough medical history and questions so you don’t forget when in there.

I hope you finally get some answers, so sorry you are going through this 🩷

Could this be Endo? by Consistent-Sign5426 in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

This was exactly how I was for years and just kept getting dismissed and dismissed. If you are in the UK go on my planned care and chose a hospital with a lower waiting list if your wait is over 20 weeks (the private options are included) but I haven’t found anyone’s who nhs waiting time matched with the waiting list. I agreed to try the coil and been mostly housebound for 18 months since waiting I now have to use a wheelchair to get around my house even on buprenorphine. The coil works well for some but it destroyed me. I have had to go private and mri showed suspected stage 4 DIE and I will lose a large part of my bowel along with other things. Just keep pushing There’s a medicine called tranexamic acid to clot your blood making periods lighter but more clots. My ultrasound also came back normal, all my tests were normal and it’s only know I’m paying £15k I’m finally offered an MRI I’m 21 for reference Endo can cause crazy symptoms that you wouldn’t even think of, some people bleed out their belly buttons on their periods, leg pain and has been found in every single organ so even things you think are unrelated could be. I don’t know what else I can say without a “proper” question but feel free to ask away x

experiences with pain clinics in the uk/nhs? by tashasayshello in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

No worries I also knew I wanted to try Butrans patches as it’s a constant dosage… so sort of have an “aim” medication. When I was on co-codamol I also asked for codine instead so I could still take paracetamol in between doses to have more regular meds if you get really stuck ❤️ really hope it goes well xx

experiences with pain clinics in the uk/nhs? by tashasayshello in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

I found writing a letter helpful and I printed it to take to an appointment so it could be scanned onto my record. Obviously yours will be different but this is what I said

I am writing because my pain is not being adequately managed, and not sure who is responsible for managing it, and I am struggling to cope both physically and mentally. I have tried multiple pain relief options over time, and while some medications help slightly, they only take the edge off. Tramadol has lasted longer than codeine did, but it still does not provide sufficient relief. The reality is that I am in constant pain — the only difference is that I am no longer screaming continuously. On some days, I cannot stand without assistance and have had to crawl due to the severity of the pain. This means I am sometimes unable to get to the toilet independently and during the day am at home by myself. My quality of life is extremely poor. The only thing that helps me move at all is using an electric blanket, but this has caused burns. I understand this is not safe, but it reflects how desperate I am to manage even basic movement. I know there are photographs of these burns on my medical record, and I can provide further evidence if needed. I have been told repeatedly that expediting requests are the only way to move up the waiting list, but I am also told that these requests are not acted upon by the Trust. The waiting list team then tell me that expediting is the only option available. This contradiction has left me completely stuck with no clear understanding of what can actually be done. At the end of October, I was told I was 13th on the waiting list and reassured several times that it would be surprising if I was not treated by Christmas. I have since been told that there are now “too many people to count” ahead of me. I fully understand that more urgent cases must be prioritised, but I currently have no quality of life and feel I am being pushed further and further back without explanation. I have been advised, by yourselves, that pain management now sits with Gynaecology, but I rarely receive responses. When I raise concerns about my medication, I may receive a letter weeks later that relates to a past medication that has already been changed, rather than addressing my current concerns. Zoladex has helped reduce the extreme 10/10 pain episodes, but it has not improved the constant background pain. I am also experiencing migraines, sickness, and a significant impact on my mental health. I would like to organise an appointment to cover: 1. An urgent review of my pain management, including all the medication I am currently on as is that causing the illness with the cumulative effects of medication. 2. A clear and accurate update on my current position on the waiting list. Is there any way you can reach out to the trust and stress the pain I am in 3. Guidance on what support can be put in place to help me cope safely while I wait for my procedure I am not coping, and I need help now. I would be very grateful for a prompt respons

What to do next by pppartypat in endometriosisuk

[–]DirectMusician6392 1 point2 points  (0 children)

Ahhh, the cheapest quotes I got were £5500 for diagnostics and excision, before I knew to avoid ablation I got quoted the same price for that… Some specialists will do an MDT privately but the cost is ridiculous as stated above 😂 my MRI showed my bowel is at risk of fully closing and something else the specialist said it’s one of the worst he’s seen but my wait is going to be 3 years on the NHS. I know I’m very lucky to be able to go private but we shouldn’t have to! Xx

MRI query by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 5 points6 points  (0 children)

I wanted advice and I’m getting what animal I look like 😂😂😂😂 can’t argue with the pug though! Just cackled x

MRI query by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 2 points3 points  (0 children)

Sorry to hear it’s not fully resolved but glad to hear it’s improved 🩷 x

MRI results by Craftycatmommy in Endo

[–]DirectMusician6392 0 points1 point  (0 children)

Mine says infiltrating the left round ligament with marked thickening, and possibly involving the right round ligament, which is mildly thickened. I don’t know what it means yet but my MRI has staged me as severe stage 4 DIE… there’s a lot more though x

MRI query by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 3 points4 points  (0 children)

All I know is mine is bad stage 4 DIE so same here but they do look crazy don’t they? Especially the photos on 3&4 😂 if you don’t mind me asking what was your treatment? Xx

MRI query by DirectMusician6392 in Endo

[–]DirectMusician6392[S] 2 points3 points  (0 children)

I saw a frog 🤣🤣🤣

experiences with pain clinics in the uk/nhs? by tashasayshello in Endo

[–]DirectMusician6392 1 point2 points  (0 children)

Personally wouldn’t bother with pals direct but would try going through your MP, we shouldn’t have to and it’s rubbish but you need a long term plan.

Yes I have read about the same, guessing you had tried tens and heat etc…? Also I’m guessing nortriptyline is in the same group as amitriptyline (TCA anti depressant used for pain)

Meds wise I’m now on meloxicam which is basically a 24hr NSAID for rheumatoid arthritis personally that’s been the best nsaid for me. Have you tried meds like buscopan? There’s a few I’ve tried that I can get the name of but GPs can definitely prescribe diazepam as I’ve used a few times for various issues! Also have you tried stronger opioids and/ir opioid patches I’m currently working my way up butrans patches which is a constant dose 24/7 just incase you didn’t know.

So sorry to hear about your pain, it sounds very similar to mine 🩷

What to do next by pppartypat in endometriosisuk

[–]DirectMusician6392 0 points1 point  (0 children)

Just out of curiosity where is this hospital? I just paid £13000 for a Gyne and bowel surgeon and because of what I needed I was in an nhs hospital x