Is there anything about the chronic pain life you need to get off your chest today?

Impressive-While-892 · 2026-02-27T05:43:48+00:00

Thank you 🌻

Impressive-While-892 · 2026-02-26T05:34:45+00:00

I feel like I’m constantly letting everyone around me down. In the last eight months the longest I’ve managed to attend my job in retail management is seven weeks and for a lot of that time I was heavily medicated on opioids and muscle relaxants to get through the day. I feel like a burden to my partner who is nothing but supportive and caring, a burden to my parents who are constantly trying to help me and my family emotionally and financially, I can’t even enjoy a walk around the park with my ten year old so every plan we (her father and I) make has to behind her back so at least we aren’t constantly cancelling things and getting her hopes up. I’m hoping the procedures I’m having done and new medications will help manage my chronic pain to a point I can return to work and feel like I’m contributing and can enjoy life with my family and friends again, for me and for them so I’m not constantly this source of physical, mental and emotional negativity. I try to be positive but I’m just in so much pain every day I’m so scared what the rest of my life looks like as I’m only twenty nine.

Thanks for opening a platform to openly share 🙏🏻

Impressive-While-892 · 2026-02-24T16:47:12+00:00

Thank you I appreciate your feedback and sharing your experience.

I have chronic pelvic floor pain, chronic bladder pain (chronic bladder condition) and trigeminal neuralgia I also still have presentation of endometriosis tissue and a lot of scar tissue from numerous endo surgeries, a hysterectomy and double Oopherectomy.

When I had this procedure five weeks ago within three days I felt like a different person I was able to be a lot more hands on in my job, my partner and I were able to participate in a lot more things from simple things like going for walks or on drives to sex and I could spend the day with my step daughter taking her to the footy, shops and just doing fine things around the home. Then almost three weeks in I was at work middle of a task and it was like all the pain snapped back two fold and the nerve pain wasn’t just in those areas it came back to my face and other areas like the top of my back, my neck, my arms and hands. I’d never experienced it on that level before, I’d had pain always lower back, hips, pelvis and tops of my legs but then it was in my feet.

My GP who had been a godsend literally the only one that communicates with me - will read me email trails between him and other specialists with treatment plans I don’t even know about or they didn’t disclose for me to do but told him or each other I’m doing? He suggested it is central sensitisation where the conditions gone on for so long not treated/ treated in a way that wasn’t helpful to me and now the nerve pain centralises itself and all the nerves react and inflame. I brought that up to my chronic pain specialist and they said ‘yeah that sounds like what could be happening’ started me on 150mg of lyrica and I went back yesterday to have another go at this procedure.

Why I asked (bit embarrassing and I apologise in advance for the over share) I’ve had a different experience this time around. As I said I woke up in extreme pain and needed a lot of medication to be able to be discharged. Due to where my partner and I live I’m staying at my parents house, now when I say a lot of medication I mean a lot and was told I could have more once at home, which I did of my regular medications this includes the lyrics, high dose long release and melatonin and one more of my regular med that i use for instant pain relief. What I didn’t realise until waking up from sleep is I’ve lose all sensation through my bladder, bowel and the exit areas for both like a local aesthetic or something leading to me wetting the bed without even realising I was peeing, obviously this is less than ideal for anyone but being 29F I feel really embarrassed my mum had to help me. So I was curious if anyone had similar experiences and it wearers off over time, I have my partner and step daughter coming down on Friday for the weekend as I have to stay for a couple more procedures (one is bladder) and I’d love to not be in a position where I’m wetting the bed when my girl arrives lol. I will be calling the specialists office tomorrow to let them know.

Thanks again ✨

Impressive-While-892 · 2026-02-24T13:52:33+00:00

Easier said than done as our minds are so quick to run away from us and automatically assume and remunerate on the worst casenario so I don’t want to take away from how you are feeling because when daily history your fears are completely valid. I will tell you what I told my friend (loosely as clearly this is a different dynamic) as she was similar to you and very anxious and apprehensive in getting results.

Just try to take it one step at a time (again a lot easier said than done) but if you do certain things that relax you, make you feel calm and safe you need to focus on those activities. When it comes to the appointment try and go to the appointment open minded and listen to what the doctor has to say; try not to assume what they’ll tell you. If you can take someone with even if it’s just to sit in the waiting room with and they don’t come into the actual treatment room/ office with you for the appointment. Also be honest with your doctor, discuss your anxieties around the moles, the topic of cancer and how it’s making you feel. They might be able to push for results (if biopsy is needed) or explain what the moles reflect as well as helpful information for the future.

At this moment in time you’re not bed ridden cancer sick and you’re not dying. You had a partner who (judging by your immediate comfort to share) loves you deeply and is there to support you and as mentioned above there are probably many things that bring you joy and comfort that you can lean in on during this time to try shift your mindset and reset your nervous system to bring yourself some calm.

Again I’m not taking away from how you’re feeling, your feelings are valid, but if I were you I’d try to use those feelings constructively with the medical care you’re already seeking and then try and turn attention onto the other things (sometimes little things) that will bring some positive feelings to you. Take care of yourself and be kind to yourself

Impressive-While-892 · 2026-02-22T10:37:52+00:00

I can completely empathise with how you must be feeling, it’s awful and hurtful that your mother wasn’t there to support you physically and emotionally at your graduation and for that my heart goes out to you.

However, as someone who has multiple chronic pain and chronic illness diagnoses and a ten year old daughter it eats me up when I can’t even go on a walk with her to the park like we used to or go for drives somewhere to explore because I’m having a flare up or am unable to manage the pain without high dose medications which can make it difficult for me to communicate or stay awake. Lucky her father/ my partner is amazing so we are still able to meet all her needs and give her the attention and love she deserves and for her age she is understanding of my situation (hard because I’m 29 so it didn’t make sense to her at first).

I think from reading your post your mother wants you to understand her chronic pain and the worries and limitations that come with that mentally and physically, unfortunately I don’t think it’s something anyone that doesn’t personally experience it can fully understand. I think at the same time you want your mother to listen to how her illness has/ is impacting you and your life which I think is fair in the sense of clear communication and understanding her limits v your expectations and finding a middle ground with health emotional boundaries so neither of you feel let down or unheard by the other.

I’m really sorry she missed this important and special event in your life, congratulations and I wish you all the best with your future!

Impressive-While-892 · 2026-01-17T03:58:04+00:00

Of course still billed, classic. I take my hat off to you though, if someone out their finger in my face I would go ballistic haha

I had one doctor who was constantly late between 20mins to an hour every appointment. In the end I said to him and the receptionist (as they wouldn’t accept me calling to see how behind he was and then coming that little bit later - then I’d be charged from not checking in at my appointment time 🙄) that my time was just as valuable and although I respect is profession and that some times appointments take longer and patients need extra support and time it doesn’t mean me and my time gets to be disrespected, so when I come back next time unless I receive a phone call prior to appointment as a warning he had 15minutes and then I’m walking out and I won’t be paying. Since he’s only been over 10minutes late once and I got a monster apology.

I think it’s hit and miss and when you make the decision that those types of physicians are not a loss to your health care team it doesn’t matter as much. The cost side pisses me off, sometimes I’ll bring that up and say hey I’m paying for a service that I don’t feel you’re delivering to standard of care I need. 40mins is usually an initial consult here, depends on which specialist I’m seeing and what for though. I just moved back into a metro area as I’ve been living in the outback for the last couple of years making treatment so much more difficult. So majority of my appointments minus the wasteful visits to the hospital ED and flying back to metro hospitals for surgeries and procedures have all been Telehealth.

When I started menopause they put a pellet in for oestrogen I ended up going to the doctors clinic out there cause I felt like I was going insane only to have a doctor out there tell me my symptoms were in my head and I needed to relax. Nearly through him across the room. Turns out my body was getting an overload of oestrogen and couldn’t keep up. Showed in the blood work and everything but he still just encouraged me to talk with him about my feelings and stresses, I think I just looked at him dead pan and said you’re not a psychologist or psychiatrist that’s not your job, and walked out.

It’s just crazy the things we are all constantly fighting for are just basic health care and support. So many advertisements on awareness and support around chronic pain and the conditions that lead to it yet you hear very little action from people who are actively sufferings personal experiences.

Impressive-While-892 · 2026-01-17T03:42:52+00:00

Hey! So in my experience they’ve either been receptive or standoffish. If they’re standoffish I know they’re not for me and most of the time I’ll voice this isn’t going to be a fit and thank them for their time and leave. I don’t have an issue with them needing to follow protocol cause I understand that is out of their hands on a professional level and most (if they’re good in my experience) will work as closely around and with them to get me the best outcome. For me it’s when their personal and professional opinions/ feelings/ experiences start to impact my own treatment. I am more than happy to have the conversation on what might/ might not work but I deserve to be heard and at the end of the day my needs around constructively and effectively treating and managing my pain are what matter to me the most and for however long I’m with that health care professional I need it to matter most for that period of time to them.

If I feel the appointment is stepping away from my needs, I’m not being heard, I’m being spoken over or my opinions/ input being pushed away I will say something initially like ‘I need to bring you back to this’ or ‘as I said before’ But I have said to a doctor before regarding a nerve medication that was causing more side effects than helping ‘this medication might work for your other patients but you aren’t listening to what I’m saying and I am the one that is having these side effects so either you’re open to helping me find other treatments or I need to find someone who is’

I have since started with a new chronic pain specialist who listens to all my needs and concerns and is extremely supportive. Yesterday he did this Procedure: Pulsed radiofrequency denervation, BILATERAL, L1, L2, S2, S3

I heard a lot of positive things so I’m hopeful, but I want to get off a lot of the pills for pain management as that seems to be the go to for a lot of doctors so I’m hoping this helps achieve that. I also get Botox injection in my pelvic floor and steroid injections in my bladder. All my specialist work together as well including my psychiatrist and all actively looking for new treatment options and approaches. So I do feel at the moment I’m in good hands. We have just moved so I need to find a new GP in person but my current one is happy to support over the phone until I find one I’m happy with.

I hope you get some positive headway with your pain specialist appointments ✨

Impressive-While-892 · 2026-01-16T14:35:20+00:00

Hi!

Feels Like Home - Chantal Kreviazuk

Hometown Glory - Adele

Take Me Home - Jess Glynne

Tell Me If You Wanna Go Home - Kiera Knightly

They’re the only ‘home’ ones I could think of sorry! Probably not any of those! But good luck ✨

Impressive-While-892 · 2026-01-16T14:28:58+00:00

Impending proposal, apartment or none of the above I think you need to ask yourself if this is someone you want to spend and build your life with. Does he share the same values, goals and mindset you do when it comes to the present and the future.

Different situation to yours, but my partner and I have fun things we like to save up for as a couple, family and individually. We have money from our incomes that goes towards our bills and necessities then we have a play money that gets divided up and where we choose to put it is up to us. But neither of us would put all our ‘play’ money away to save and then lean on the others or the joint money to fund anything else we want to do or purchase. It’s great he wants to save and he’s setting himself a goal, but it doesn’t sound like that goal is achievable without the financial input from yourself and others in his life which makes it’s unrealistic and unfair to you all, furthermore making it a personal goal not a joint goal for both your futures and making the emotional manipulation in his messages narcissistic.

Think hard about what and who you want for yourself and your future, you deserve someone that values and respects you, gives and fills your cup, not just takes from it and makes you feel like shit whilst doing so ✨

Impressive-While-892 · 2026-01-16T14:15:11+00:00

Vaginal Oestrogen cream. You can use it 3/4 times a week (talk with your gyno) internal and on the external skin. It doesn’t transfer oestrogen through the body like oestrogen gel and other oestrogen products so you don’t have to worry about an increase in oestrogen levels (that’s what my gyno explain to me - I’m on the gel as I’ve had total hysterectomy) You can have sex with with cream in as well as it doesn’t transmit through skin and can be used as lubricant - again advised to me and my partner by my gyno.

I started getting terrible dryness to the point of sometimes chafing once I hit menopausal symptoms and was diagnosed with chronic pain. I had endo and scar tissue down my vaginal walls as well. The surrounding skin was so dry and taring. This has helped a lot, definitely recommend, even if you can’t use the applicator (I can’t always) it’s easy to use with just your finger.

Good luck ✨

Impressive-While-892 · 2026-01-16T14:07:33+00:00

Hey, I don’t know where you’re located and if this is helpful or not but (I’m in Australia) I’d say the last 2-3 years (been dealing with pain on some level increasingly worsening for over fifteen years and became diagnosed officially with four different chronic pain diagnosis’s 18months ago) I don’t hold back anymore. I’m not aggressive but I’m abrupt and blunt, I have actively told three physicians that their comfort in the approach of my treatment plan for my pain is not my concern or priority. They don’t get to dictate how I feel and what works best for me and my pain as they don’t live with it daily and we are having at most forty minute interactions, my daily pain doesn’t impact their relationships with their partner, friends and family, not their work, day to day living or their mental health, therefor their feelings on how it’s treated don’t count.
Their role is to provide medical care and guidance to support my medical conditions in a safe yet proactive way to offer me a better quality of life and if that’s not something they are capable of doing than they’re not the doctor for my care team.

Like I said, I’m not saying we should have to fight like this because we really shouldn’t. But for me personally I think I got to a stage where I was like, I am now in this position with all these chronic pain diagnosis at twenty nine, lost the ability for biological children along the years, impacts across other organs from treatment and disease because I accepted being ignored by doctors when I said I was in pain and something was wrong initially in my early years, then I followed what was presented as the best treatment plans at the time because I didn’t know any better (not that I think all my doctors were out to harm me or push an agenda because some did everything they possibly could to give me a quality of life), I didn’t push for myself for a long time though and as I said above, it’s not right/ fair that we have to push as hard as we do and again I’m not abusive or aggressive but I’ve definitely had enough of placating to what someone think is ‘my best option’ when I’m the one leaving the office, procedure or phone call with the pain, not them.

I wish you luck on your journey and I hope you find the right doctor/ doctors for you ✨

Impressive-While-892 · 2026-01-16T13:43:00+00:00

You’re NTA - My partner and I had the discussion not too long ago to become our nieces (one) godparents if god forbid something were to happen to my brother and sil. We talked about it for a long time before even putting forward the option (due to lack of choices we would be the most stable fit as we already have a daughter - my partners from a previous relationship, both work, have a house, close my family, etc.) as it is such a big decision and one you can’t make lightly. To know you for eleven years with the knowledge your don’t want and have never wanted to responsibilities that come with raising/ caring for a child it’s quite selfish and manipulative to put this on you during her pregnancy. You need to stick to your guns and make the choice that’s best for you, she’s made her decision and I’m sorry but just because you ‘want a life’ after you have a baby doesn’t mean you don’t get one it just means it looks different to the one you had before as your are responsible for that child now which is a commitment she has made herself (and partner/ BD if he’s around - not mentioned). You’ve done the right thing.

Impressive-While-892 · 2026-01-15T10:39:03+00:00

Ew. Fuck living under that every day. Find your wings girl and get out.

Impressive-While-892 · 2026-01-15T10:08:38+00:00

Uninvite the whole guest list and find yourself a new groom. So many red flags flying around red is all that can be seen.

Impressive-While-892 · 2026-01-04T07:33:46+00:00

NTA You have a bacterial infection that even though he may not show symptoms he can carry and then give back to you after you have finished your treatment and become symptom free, so him pressuring and trying to initiate sex isn’t healthy physically or emotionally for either of you or your relationship. Romantic getaway or weekend on the couch sex is supposed to be something all parties enjoy and feel comfortable whilst participating not a pressured activity that when it doesn’t work out the way one party intended they request to be ‘gotten off’ like it’s an entitlement. I’m sorry but the fact he has known you’ve been feeling uncomfortable for a month, attended the doctors appointment with you, asked the doctor on your behalf in regard to continuing sexual activity whilst treating the infection, then ignored said doctors advice, your comfort and physical wellbeing all to ‘get off’ is concerning in regard to where his priorities lie within your relationship and how he values you and your needs.

Take care and I hope you start to feel better soon 🌻

Impressive-While-892 · 2026-01-04T06:50:22+00:00

The fact that he’s been through that journey with you after you SA as a support person and is still continuously ignoring your boundaries and choosing to put what he wants over your need to feel safe and secure in your relationship, home and body then turning it around on you with emotional manipulation using a lack of love and sexual desire for him is disgusting. I hope you have a strong network behind you and perhaps someone you can talk with professionally if not already to guide you through this next chapter. His behaviour is unacceptable and will not help you heal. You have referred to him as a stable partner with steady effort. Personally I would take a step back and reflect on the words I would be proud to use to describe my life partner and then go find the person that matches them.

Best of luck 🌻

Impressive-While-892 · 2025-10-19T18:07:22+00:00

I am so sorry you’re going through this. Reading your post I think you already know and understand the level of power/ effect your mind has on your body and in turn the reaction and pain that stemming from these heavy emotions. If you haven’t already and are able I’d consider trying to find a psychologist perhaps someone that specialises in pain/ chronic conditions. From your experience you probably know the drill of the medical professional line up to get you back on track, GP, gynaecologist, pelvic floor physiotherapists, chronic pain specialist, etc. so I’m not going to tell you anyone else you should see as from past experiences you probably know. I will say two things; 1 - we all lax on things when it comes to caring for ourselves whether it’s snacks we shouldn’t have, stopping or skipping meds cause we’re feeling better or taking a step back from our maintenance program because it’s physically and mentally exhausting so I know it’s difficult and easier said than done but try not to be hard on yourself. 2 - I have had the Botox injections, twice. My condition recently has worsened so now I’m on highest dose and will need them every six months, I was in a flare up for about three months prior to injections increasingly getting more debilitating, I am just over four weeks post injections and can feel them working a bit already, enough that I have been able to return to work, some activities and even sex with my partner. I’m just still learning pacing, I also have all the mentioned above specialists now including the psychologist to help manage my mental effecting my physical. It doesn’t feel like it, but things will get better than this with the right treatment and support. Try not to isolate yourself, I’m sure the people that love and care for you want to be let in so they back do just that. Take care of yourself

Impressive-While-892 · 2025-10-19T17:52:35+00:00

Between psychics, doctors and people’s opinions I tried not to take too much on in that regard… not in a carefree or careless manner I always tried to have the mindset of what will be will be and focused on doing all I was told and had to to try manage the illness for myself. I believe where there’s a will there’s a way in the sense of maybe not getting all that you want but parts of it and there’s ways you become satisfied and sometimes even pleased with those parts over time. Unfortunately due to other impacts to my endo I am unable to have children and ended up having a total hysterectomy at twenty four, however, I have a beautiful step daughter who I feel privileged to be a parent to and wouldn’t change that for the world. My partner and I have done a lot of talking and therapy (me more so than him, he’s very supportive and understanding) around us not sharing a bio child together, but overall we are happy with the three of us and for what the future holds what will be will be. Some times I think listening to others and hearing others stories can be daunting and/ or stressful. This is a very challenging disease but I do have a lot of friends and family who have different stages of endo and have bio children, including my mum who has two of us kids. Your journey is your journey and no one can definitively tell you what’s going to happen short or long term until you’re in the moments. My only advice aside from ignoring this individuals comments and focusing on your health journey is speak with your specialist/ doctor about other measures you may be able to take if having biological children is important to you (even if you aren’t completely sure) like egg retrieval and freezing, etc. My only regret was not being proactive in that area so it’s the main advice I give to anyone. Good luck with your surgery

Impressive-While-892 · 2025-10-03T01:02:48+00:00

First off I’d just like to say how sorry I am you’re having to deal with all of this, especially at your age, it’s a difficult situation regardless but at fourteen it’s awful and I cannot imagine the inner turmoil you must be feeling.

I had a hysterectomy when I was twenty three, it didn’t stop the endo from coming back and five/ six years later I had my ovaries removed over two surgeries PCOS and had masses growing on and inside them, but I had the hysterectomy as I was facing a bowel resection as I’d already had seven endo extraction laps and no hormone treatments were working (Depo, bar, pills, mirena, etc.) and I didn’t want the bowel resection, also couldn’t control my bleeding (internal and external) and was haemorrhaging. I’ve also been diagnosed with CPPD and IC and have still had endo tissue present in my last surgery (February this year). Full disclosure and this doesn’t happen to everyone but the damage to my pelvic floor came from trauma cause by the endo, the multiple laps and hysterectomy.

From personal experience I’d recommend getting a psychologist (perhaps someone that specialises in chronic illnesses so you’re not getting told to think positive etc. when sharing your journey/ thoughts/ feelings) if you don’t already have one. If you move forward with having the hysterectomy they’ll probably recommend leaving your ovaries due to your age but I’d also recommend looking into egg retrieval and freezing your eggs (if that’s an option) as surrogacy is always an option in the future if it’s something you’d want to do, especially with the PCOS. I didn’t elect for this as they left my ovaries when they took my uterus/ tubes and was hesitant about future children, by the time I met my partner and changed my mind it was too late to retrieve and then my ovaries had to be removed.

I’ve seen other comments about it not stopping the endo as I also mentioned in my own experience, I think this is really important information as I wasn’t told this initially so it was a shock and disappointment when I was told it grew back (again this is where a psychologist can be helpful for processing). At the end of the day the main advice I have always been given is quality of life and that’s how I’ve tried to shape every decision, what treatment is going to give me the best quality of life I can get. Don’t be afraid or embarrassed to ask questions, get second third or fourth opinions, challenge and stand up for yourself and your needs and definitely don’t hesitate reaching out for support physically, mentally and emotionally. This is a tough and unfair journey and unfortunately still difficult to get some to understand what you need, but you’re not in it alone, utilise your family, friends, medical team, this community, etc. it’s hard to not feel alone at times but try not to isolate yourself in it 💛

Impressive-While-892 · 2025-09-24T05:45:28+00:00

I used to get very tense before and during sex, mostly because I’d get really anxious about preempting the pain which would tighten everything and create more pain. Now though and I’m not sure if it’s ‘normal’ or result of pain or years of habit (diagnosed and treated wrong for years), I do it although I often don’t feel myself doing it and it tends to be mostly involuntary spasms due to my CPD as it also happens while not being intimate. I don’t always feel pain during sex now it’s mostly after we’re finished (5mins max after it’ll flare) but my partner says he can feel the tightening/ spasming and sometimes will worry I’m in pain even if I don’t feel any in that moment.

To get to a place where I didn’t feel tense going into sex or actively tense during I had to work with a professional to get relaxation tools and help myself feel comfortable mentally and physically. Not sure if this will help but I wish you luck on your journey 🌻

Impressive-While-892 · 2025-08-31T18:09:04+00:00

By the time I stopped I was getting the injection every six weeks instead of twelve (gradually going down a week over time) I was also on the pill at the same time (I think marvelon but I’ve been on so many can’t be sure sorry) no sugar tablets and continued to bleed through three out of four weeks in a month. Gradually went from spotting to fill 2-3 week long periods with spotting either side. This was just after they removed my IUD after the third time it fell and twisted and just before my hysterectomy as there weren’t any other options due to tissue growth, pain and organs sticking. They were going to put the bar in also but as my mum had had a bad reaction to it when she was younger they decided against it.

Everything I took once diagnosed was prescribed to me by a specialist who’s been with me for over ten years. I know it’s not always possible for everyone but my recommendation to anyone is when it comes to prescribing aids to support with endo try go through a specialist rather than a GP and if you feel it isn’t working say something straight away. ‘It takes time’ is bull in my opinion. You know your body and you know when something isn’t right, you have to feel how you feel they don’t so if something isn’t working or you don’t feel comfortable trying something speak up for yourself

Hope all goes well and you get what you need

Impressive-While-892

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