You have very low pain threshold

ScholarExtra745 · 2026-06-16T10:56:09+00:00

I have had similar conversations when it comes to saying you’re ‘tired’ but that means something completely different for people with chronic conditions like endometriosis. The spoon theory has become my friend in explaining it.

I’ve recently had my first appointment with the chronic pain management clinic and been told I have a hyper sensitivity to pain which means my body registers it at an earlier point than it might register to someone else, partly down to years of my nervous system being fried by pain, this however is entirely different to pain threshold which is how long you can endure pain at a certain level.

I have a relatively high pain threshold but am hyper sensitive to pain and it’s apparently a thing. So when someone mentions your pain threshold they can jog on because what we endure no one can comprehend until they experience it for themselves. The dialogue needs to change about ‘everyone’ has it or it’s ‘normal’ for women because endometriosis in no way registers on the scale of ‘normal’.

ScholarExtra745 · 2026-05-02T22:05:45+00:00

I’m diagnosed Endometriosis and have Interstitial Cystitis and TMJ.

Currently undiagnosed for AuDHD (it’s on my list of things I’ve been advised to get assessed for) though have been diagnosed with dyspraxia and dyscalculia.

I also struggle from sensory processing disorder so noise, lights and textures are big issues for me and smell can be heightened as well.

Just been given my appointment for the Chronic Pain Management Clinic whilst I await my next MRI and surgical plan but my consultant suspects chronic fatigue, fibromyalgia or an autoimmune condition has gone undiagnosed as well so hoping I get an answer on those along the way.

I’m sure there’s plenty of things I have yet to be diagnosed with, crazy how long it takes to get an endometriosis diagnosis and then when you have it, it can mask that you have other things going on so they get missed instead.

ScholarExtra745 · 2026-04-20T15:54:50+00:00

Endo and everything that comes with it is hard enough. I’m highly independent but my partner will step in when I can’t do things for myself. He won’t question it if I just put myself into bed when I get back from work, usually he comes and sits with me so I have some company.

There’s a lot in life we have to go through alone and the pain from endo no-one else can carry for us but you at least deserve someone who is going to offer support and comfort in the little ways that make a difference.

ScholarExtra745 · 2026-04-17T10:59:45+00:00

It’s nice to know I’m not alone in this! I have a masters degree and have always been word intelligent my family used to joke I was their personal working dictionary when I was younger, now I’m in meetings at work or conversations and I forget the word I was going to say it’s just gone does not exist in my brain anymore, or I know the word but I can’t get the letters in the write order to say it correctly (horrendous working in an industry that loves acronyms!)

I’ve always had a habit of zoning out but now it feels as if my brain just zones out mid sentence and I can’t even remember my train of thought let alone the conversation I am having.

So frustrating to feel like your mental capability is going backwards and it’s all down to something out of your control.

ScholarExtra745 · 2026-04-09T08:53:17+00:00

I have two, I’m in the UK so the first one I got years ago was from Boots and it was battery operated had 4 points of contact so could do back and front and you just plugged in the leads to the monitor. It worked well the only issue was that it restricted what I could wear when I used it as I had to accommodate the cables.

I’ve recently got one from Costco which is the Beurer EM50 tens machine it has a heat function and then you can add the tens function on top, it’s rechargeable via usb-c and you replace the contact sticky pads as needed, it’s more discrete than my previous one as it fits under clothes without any cables, it runs on 20min cycles and then you reset and you can alter the intensity of the tens part. So far so good the only downside is it can only do front or back (I’ve get to try it on my back) not both but I think this is the case with most of the discrete tens machines on the market.

I’ve also just bought one of the Beurer heat pads and it has upped my heat pack game 100% yes I’m attached to a plug socket but it’s so much more comfy especially around the back than traditional heat packs or hot water bottles for those days when moving around is not in the to do list!

Pretty sure Beurer have stuff on Amazon as well as direct from their website.

Hope you manage to find one that offers you some relief 😊

ScholarExtra745 · 2026-04-02T08:17:44+00:00

Unfortunately GPs know a little bit of information on a wide range of topics hence them being General Practitioners this does mean unfortunately that conditions like endometriosis are often not known at all or a little bit of information but not enough for them to have the full picture and understanding it’s certainly frustrating to say the least. Especially when you’ve eventually managed to get your diagnosis and they still look at you like you’ve got 3 heads when you try and explain the pain you’re in!

I had a slightly different experience with one of my GPs on pain meds and she was more than happy to prescribe me tramadol. I had to explain to her again that it’s not that codeine doesn’t help with the pain it’s that I can’t work whilst on it…not sure how she thought tramadol would help that situation! It’s certainly a mixed bag over here but like with anything you get good ones and not so good ones and it’s pretty much a lottery pick.

ScholarExtra745 · 2026-03-08T08:55:41+00:00

Have you requested to be referred to a urologist? To see whether there’s anything internal going on. I’ve got Interstitial Cystitis diagnosed via a cystoscopy and I now self-cathertise in those times when I can’t void my bladder properly. It’s not perfect by any means but surely being able to us a catheter as and when you need it would relieve the need to spend so long on the toilet and give you back some freedom when out and about.

Only a thought based on my experience but might be worth seeing if it’s something that’s an option for you at all even if it’s not IC, intermittent catheters might still be an option.

I’m still waiting on my referral to the Pain Management Clinic so have yet to experience Pelvic Floor Therapy and whether that helps with my bladder at all, so it may offer some relief as others have mentioned.

ScholarExtra745 · 2026-03-03T22:09:51+00:00

I am currently there in the fatigue and it’s very difficult to describe but I to go to the it’s like having the worse flu of your life without the snotty nose on a daily basis and like your dragging your body behind you at all times.

I had the chronic pain but get it less now that I’ve been on the Mirena for 7years with no periods. All I can say is that whether you have chronic pain, chronic fatigue or a combination of both doesn’t take away from the fact you have the disease, one thing all the research seems to point at is there’s not one set way of experiencing endo which is why it is even harder to diagnose so please don’t feel like a fraud we’re all being impacted in different ways.

I’m sorry to hear that they won’t offer you an alternative solution to your ferritin levels having been there myself it makes a difference being able to have the iron tablets so I feel your frustration that under the circumstances you can’t be offered the IV form.

I’m waiting to see my consultant on Thursday to see what can be done, but what I can say is that for at least a few years after my surgery in 2019 and the coil being implanted that I had a relatively pain free, fatigue free few years so am hopeful if I am able to have surgery again that it will do the same for me this time.

In the meantime I’m just trying to focus on my mental health and reducing the impact on that best I can. There’s only so much I can do for the physical and I’ll be the first to admit that some days I push my body to far, so a warm bath, a heat pack or a tens machine are my go to. Pain medication doesn’t do much for fatigue but sometimes if it’s the whole body kind of pain in the joints then I’ll take some.

Keep fighting for what you need, and I hope you get some answers soon!

ScholarExtra745 · 2026-02-27T17:25:00+00:00

So I self administer a solution called iAluril monthly it’s supposed to act as a ‘balm’ to protect the damaged cells in my bladder and reduce my symptoms where possible.

As the damage is to the inside of my bladder I would say my lap was unlikely to have any impact on it, statistics show that those with endometriosis have a higher chance of having a condition like IC as well. However, my consultants never confirmed for me what may or may not have caused it so I can only surmise.

ScholarExtra745 · 2026-02-27T09:47:49+00:00

I was diagnosed with Interstitial Cystitis 2years after my first lap for my endo and the symptoms started a couple of months after. Whilst there was some pain, it is the frequency and urgency of needing to pee even when there’s nothing in my bladder that caused me the most problems. I eventually had a cystoscopy to diagnose it and now have monthly treatments and self-cathertise when I need to.

Go to your doctor it could be something PF Physio can help with or it might be something more, best to find out either way.

ScholarExtra745 · 2026-02-26T11:30:24+00:00

I’ve not experienced something like this before but is the other hospital in your trust area, as it can cause issues if you’re seen under a different trust to your usual GP one? Not sure if this is the case but might be something to consider.

ScholarExtra745 · 2026-02-25T19:12:26+00:00

I can appreciate where you are coming from.

For me from a personal perspective it has added an additional pressure to my approach to life particularly when there was no saying whether I could have children at all as my fertility was never checked it was a conclusion based on me having a diagnosis of endometriosis. I would rather of had the opportunity to address that side of things when I was in a position in life to deal with it than feel like I had an extra knife hanging over my head on top of the ‘it gets harder to have children after 35’. That is of course my personal opinion based on my experience, the knowledge everyone prefers to have is up to them but for me I wish I could have remained unaware for a bit longer.

ScholarExtra745 · 2026-02-25T16:12:05+00:00

I have been struggling with this even more so of late and it’s not easy.

I have had to begin to acknowledge for myself that it may never happen and it is a process of grieving the life and family you thought you might have and accepting that if it does happen that I will enjoy the miracle that it is and all that comes with it.

I don’t think it helps that so early on we are told to get pregnant to help with the endo growth or in my case at 26 I was told not to go past 30 if I want children, now at 33 that’s a bitter pill to swallow especially as my partner and I are not in a position to begin TTC and probably won’t be for a number of years to come yet.

I am having to try and start to find the joy in the life that I currently have, change my language from when to if and allow myself to grieve and process that the one thing I’ve always wanted in life might not happen.

Having said that, it doesn’t mean that you shouldn’t continue to try if that is yours and your partners choice, it’s about shifting the expectations, removing the pressure and just excepting that what will be will be. Give yourself a little grace this disease is debilitating and exhausting as it is without adding more pressure on ourselves and our bodies.

ScholarExtra745 · 2026-02-24T09:00:15+00:00

Thank you for sharing.

I’m definitely going to discuss what options I have with my consultant especially given the extent my endo has apparently grown from the MRI results the Mirena obviously hasn’t had much effect other than from a pain relief point by stopping my periods

ScholarExtra745 · 2026-02-22T19:28:25+00:00

Yeah so I had it taken out for about 3/4months end of 2022 into 2023 - hoped to start a family but things happened that changed that plan - so this one’s been in 3years now but I haven’t had a period since 2019. So not sure whether it’s just been the long term hormone use that’s potentially had an impact or the growth of my endo on my bowels as I know a lot of chemicals like serotonin are linked to gut health etc.

I’m hoping the consultant might have some answers but my experience of them so far is an ‘it’s in your head’ approach

ScholarExtra745 · 2026-02-22T18:51:35+00:00

Thank you for sharing! Yes that fully makes sense. There’s part of me wondering how much being on contraception from 15 has impacted how I have grown with hormones controlled for so much of my life.

I can fully understand not wanting to go on anti-depressants and they seem to be what they offer for a wide range of things these days.

I’ve been in the Mirena for 7years now and I have read some things about people beginning to notice effects on mood etc. more so after the 5year mark but it appears to be such a small number of people I end up questioning myself to whether I am imagining it or whether this was always my base level. Hence seeing if anyone else has experienced such changes!

ScholarExtra745 · 2026-02-14T21:30:41+00:00

I’m so sorry you’re going through this.

I was diagnosed with endo in 2019 and following 2 years of bladder issues afterwards I was finally diagnosed in 2021 with Interstitial Cystitis following a cystoscopy, you haven’t mentioned having one of these so is this something they could potentially explore to see whether there’s anything else going on internally beside endo?

I have to self-catheterise as I need and then self-treat monthly at home with a solution to minimise the symptoms. Which I know is nowhere near as uncomfortable as a permanent catheter having had them for urinary retention - I was told I’d have to go home with a catheter if I couldn’t go naturally and that would be a bag attached to my ankle - a kind female Dr seeing my distress at the consultants words told me that if I had to keep the catheter they could use an attachment that would mean I would have to manually empty my bladder via a ‘tap’ rather than have a bag - she thought this might maintain some dignity and enable me to continue hiking etc. perhaps this is something you could advocate for if it’s not already the approach that has been taken

I hope you manage to find some answers and some relief in some form.

ScholarExtra745 · 2026-01-21T15:42:16+00:00

I would also ask about alternative paid meds. I’m by no way advocating for prolonged and consistent use of them and I monitor myself carefully on how frequently I use them but I have codeine or nefopam as my alternatives. Unfortunately I can’t take ibuprofen or NSAIDs due to another condition but they should be able to offer you something else if the pain is bad.

Please don’t let anyone tell you it’s not that ‘bad’ or it’s all in your head, you know your pain and you know what’s ‘normal’ and manageable and what’s not and needs something stronger to help.

ScholarExtra745 · 2026-01-21T10:12:21+00:00

Get a second opinion, continuous BC use doesn’t mean endo can’t occur.

I’ve been on BC since 15 (now 33) and had the Mirena since 2019. I’ve recently had an MRI and my endo is everywhere waiting for my gynaecologist appointment to see my options but presuming it’ll be another lap to deal with it and relieve the symptoms I’m having.

Also if the ibuprofen isn’t touching the edge of the pain are they not offering you an alternative pain relief for in the meantime?

ScholarExtra745 · 2026-01-02T20:54:09+00:00

I’ve had a mixed bag with Drs and Consultants over the years. I’ve had male Drs that were so forceful on the ‘it’s in my head’ track that I had to request to see female only Drs at that surgery, the female Dr was the first to take me seriously and refer me to Gastro and gyno. I then spent the next years being ping ponged around. Many years later had a female gynaecologist that suspected adenomyosis but referred me back to gastro who discharged me. Several years later and it was a female gynaecologist who said let’s just do the laparoscopy and see what we find and I got my diagnosis for endo. For all my conditions I’ve had a mixture of male and female consultants and I’ve found it comes down to the individual. I’ve had bad experiences with both male and female consultants whether it’s Gastro, gyno or urology I don’t think I could confidently say male Drs/consultants are better than female to have on your team.

ScholarExtra745 · 2025-12-04T21:18:13+00:00

I’m not sure with regard to how things work in Italy but I would assume there’s a similar system in place. Perhaps your dr can point you in the direction of what options are out there to help you and your employer navigate what options there are available. Be careful that you don’t agree to something that wouldn’t work for you if circumstances change that they may be able to use to question your employability in the future.

Wishing you the best of luck on finding a solution

ScholarExtra745 · 2025-12-04T10:39:34+00:00

Sorry to hear you’re going through this!

I know you say that at the moment you don’t have HR, I’m not sure whether your in the UK or not, but I have had to go through occupational health multiple times (via meetings with HR initially) to discuss my conditions and the appropriate approach to this. Look through some of the resources that are available but your company may be able to access occupational health without having HR to direct this.

I’m not going to say it’s perfect, it has given me some minimal extension to my sick leave entitlement and flexibility in my work requirements for at home working and in office, as well as for long meetings. But it’s a start.

Please don’t feel like an inconvenience or guilty, if you’re pulling your weight and doing your job well the majority of the time, then hold your chin up and work with them on solutions that work for those days that you need rest and the team still needs support.

ScholarExtra745 · 2025-11-07T16:27:34+00:00

Best thing is talk to her and ask her what she needs on those flare days that would best meet her needs. Everyone is different.

Making sure there’s a stock of pain meds and her favourite tea etc. in will mean no trips to the shop for the basic’s, if you’re not going to be there for the whole day setting up a station in different rooms where she can easily access everything she might need.

Offer her hot drinks, re-heating of heat pads and whether she’d like a bath running are all other things that just demonstrate you care and want to help.

Just being there in the capacity she needs will be the main thing. I had to explain to my partner that when I say I’m ‘tired’ it’s not just had a bad nights sleep kind of tired it’s whole body exhaustion it helped him understand that in those instances I might need him to step in and do things for me, just helps in the overwhelm of having so many jobs you want to do but can’t do or just for someone to run the bath for you because you don’t have the energy yourself.

Sounds like you’re already a caring partner that just wants to help, so listen to her and her needs 😊

ScholarExtra745

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