To be so fed up of having a chronic illness

[Propercrimboselecta]

Just that really.

I am in pain most days, and have been for 2 months solid now with no let up. Usually I have flare ups but right now it's constant. The issue is that on the outside I look fine. I've had so many people be awful to me, saying I'm looking for reasons to have time off work (I'm self employed....) or making it up.

It's endometriosis so there's not a lot the doctors can do for me. My GP has suggested further surgery but said to wait until after I've finished having children as continued surgery will bring my already lower chances of conceiving down even more. Unsure how successful the surgery will be.

We have one child, almost 2 years old. I've never wanted kids particularly close together as I think it would be so difficult. We have talked about trying for another in a year or so depending on the circumstances at the time (income has been really hit by COVID). I'd actually be tempted to try now if we weren't in the middle of a pandemic when our income is all over the place.

I'm just finding this so hard now. I feel like a broken record so have come here. My husband and my parents are so supportive, my closest friends are great. Some wider family upset me a lot saying they thought I was cured years ago (there is no cure) and why do I still talk about it or act like it's a problem. I don't know why they would think that, as I do a lot to try and spread awareness of what life is like living with this. The NHS symptoms checker really minimises it too (painful periods and pain after sex? I'm in pain every day, period or no period, sex or no sex).

Not sure what I'm expecting from this post but as most people with chronic illnesses can probably understand, I'm beginning to feel like a burden on my family. I've been up all night in pain, have taken pain meds this morning and am sat in the bath now whilst DH plays with DD. I've asked him a few times does he think I'm lazy or that I use it as an excuse and of course he says no and that I didn't choose this. I just get so worried.

I'm so sorry your going through this. I don't have a chronic illness myself but one of my dc does. You wouldn't know as they look fine but even as a child people have been judgemental and made accusations it's attention seeking and has been used as an excuse. We are talking about a life threatening illness aswell! I just think some people are so narrow minded and cannot be bothered to educate themselves or for just for one minute put them selves in another person's shoes and imagine what life must be like for them.
You know how your feeling and the effect your symptoms are having on your life. You have my upmost respect having to cope with something so debilitating everyday whilst trying to get on with your life as best you can. Thankfully you have support from the people closest to you. Anyone elses opinion if judgemental is meaningless. Unfortunately some people will always criticise something they don't understand. Give them zero time.

I'm really sorry that you have this illness as I know just how demoralising long-term chronic illness can be....I have one too.

But look at it methodically. You have very supportive DH and close friends and family which is excellent. Focus on them and not those who hint that it's not a 'real' illness, they don't matter as you do not have to justify anything at all to them . Their ignorance of your condition is just that, ignorance, and it's their problem, not yours.

Also focus on self-care of yourself. If you need time off from work, then that's what you do - please do not refer to yourself as lazy you're not, so you rest when possible. Listen to your DH as he sounds wise - you did not choose this condition and he understands.

I remember feeling guilt, shame, weakness, lazy, all manner of things when my illness first hit me, but once I'd got my head around things - which took a couple of years - I said to myself 'well.I may have IT, but IT hasn't got me'.
Twenty years on, I'm still here. There are good days and bad days - but everyone has those.

You are not a burden. You are a person who needs to live their life somewhat differently than before, but you are still that same person as before. Focus on that. Don't lose yourself by drowning in those negative thoughts. Embrace your loving friends and family. Be yourself as you are now, today, one day at a time. All the best.

I have endometriosis too. It's shit and people have very short attention spans for other people's illnesses, I don't really mention it unless asked now. It is so much more than period pain or pain from sex but people don't understand it.

Have you spoken to a consultant about surgery? I had 3 surgeries before I got pregnant and I got pregnant within the first couple of cycles so I'm not sure it really does limit your chances.

At my worst I managed to use a tens machine up until 2 weeks before my surgery without having to take more than over the counter pain medication. Have you thought about trying that?

I spent a lot of time researching endometriosis, it's an oestrogen dominant condition so anything which reduces oestrogen in your system helps - cutting out caffeine, losing weight. It sounds ridiculous when you're in a shitty place with it but diet can really calm some of the symptoms. I wouldn't have believed it when I was on my knees with it but it's been about 9 years since my last surgery and I believe that's down to diet.

Youd really rather be in constant pain than have an only child or 2 children 3 years apart? I must admit I find that hard to understand.

I have endometriosis too and am in daily pain so I know where you are coming from. It sucks. People just think it's bad periods but it's so much more than that. I have 3 dc and am a single parent with no one to help on a day to day basis.
Your DH sounds lovely. My now exH accused me of being ill just to control him and ruin his life I've had endo for 34 years or there abouts. Diagnosed 24 years ago. Wow, just realised as typing how bloody long that is to be in pain every day.
How old are you? I had dd1 at 30, dd2 at 32, ds at 39. Ds was a bit of a surprise My gynaecologist said when I was pregnant with dd2 that I am evidently very fertile. After many cycles of analogues like zoladex I was amazed that I ended up with 3dc. Now I'm 44 and perimenopausal and looking forward to the time my periods stop and my ovaries shrivel up and die for good.
What pain relief do you take? Are you on the pill? The pill taken continuously helped me a great deal but I was still taking opiates daily.
How well do you cope now with working and your child? How well would you cope with two dc and your symptoms? If you ended up a single parent would you be able to manage? Pregnancy aggravated everything for the first trimester for me and then despite ebf my periods returned after 17 weeks with all 3dc.
There are so many things you need to consider here but it will probably boil down to head or heart for you as that desire for dc is all-consuming at times.

I’m so sorry, it’s a horrible debilitating yet invisible condition. I have stage 4 endo, have had multiple laps and only stay functional at work etc as GP prescribes tramadol to take the edge off.

We have one DD (6) and desperately want to give her a sibling but no luck so far despite tests being normal (apart from hormones a bit out but not enough to prevent conception). I’m on the waiting list for another lap as that’s the only way they can see the extent of it and laser off the adhesions etc. Last time my pelvic organs were all stuck together by adhesions (but that doesn’t show up on a scan so I had to beg them to do the lap).

Have you spoken to a consultant about surgery? I had 3 surgeries before I got pregnant and I got pregnant within the first couple of cycles so I'm not sure it really does limit your chances

Yes, I have had one lot of surgery and already. They said that further surgery will reduce my chances of natural conception even further so I want to wait before proceeding as it was very hard TTC for DC1. If we manage to have a second child in the next couple of years, I'll get a specialist on board and have excision surgery, I've heard mixed things but I want to try it.

Youd really rather be in constant pain than have an only child or 2 children 3 years apart? I must admit I find that hard to understand.

Yes. I would like two children. We have considered TTC now but my husband has been made redundant more than once due to the pandemic so it's really not a good idea right now. I live in constant pain anyway and there is no cure for endometriosis so that may not even change, but the surgery would cause further issues with my fertility as a definite, hence why I'm waiting. We were talking about it recently and we have warmed up to the idea of 2 closer together (3 years apart would be how it worked out if I were to get pregnant soonish) but with the pandemic/finances, it's a bad idea.

FlatteredRhubardFool
I used to be on the pill but it made everything much worse, I now have the mirena coil and it has helped somewhat. I think this never ending flare up I'm stuck in seems to be partially related to stress.
I take paracetemol and ibuprofen daily, on tougher days I take codeine (so still a lot of the time), on days like today I take tramadll and naproxen but try hard not to as tramadol is not something I want to rely on. I've been using codeine for many years now to manage pain and thankfully have never had any problems with it.
I'm 28.
I think I'd do fine with 2 DC. My mum had a chronic illness when I was young and she really showed me that our illnesses do not define us. Her support has been incredible for years. Work wise I'm ok too, I work a self employed job, less hours as I care for my little one through the week. But it's very specialist and therefore well paid so with both DH and I working, the hours are fine. I love my job too, which helps.

HikeFoward I'm so sorry you're going through this. Have you looked in to excision surgery? It is meant to be much better than ablation, it's what I'm going to try and have next

Can I just say how much I appreciate all your replies. This can be quite isolating, during an isolating time anyway. Usually I'm very good at putting on my big girl pants and getting on with it, managing my pain and not letting endometriosis define me. I think with lockdown and other factors putting a strain on my MH, I'm finding it harder today.

Can I ask you all what your daily symptoms are? Sounds awful, really feel for you.

Op, I feel your pain, as I have endo as well. Nearly 16 years now, along with 8 other chronic conditions.

I'm exhausted most days but just get on with it. You will never get those who have nothing wrong with them to understand.

Focus on yourself.

@Propercrimboselecta your financial issues won’t last forever . If you want two children it would be sensible to tv now. Even if you are skint for a couple of years life goes on. You can have your surgery and be in less pain. Health is far more valuable than money.
I don’t think you are thinking things through clearly. Also a three years age gap isn’t small or difficult.

I have fibromyalgia and the constant pain is so tiring. On the days when I genuinely struggle to stay awake or get out of bed I feel the family must think I'm putting it on,even though they've never said that. Its exhausting so I sympathise with you Op.

Can I ask you all what your daily symptoms are? Sounds awful, really feel for you

For me specifically, on the average day my uterus aches and kind of burns, I have back pain and leg cramping.
On a worse day I feel like my insides are on fire, everything inside feels very swollen and aches and it radiates through my body a bit. I can get quite tired. I have endo on my ligaments so my pelvis joints and legs can hurt.

I think my endo has spread to my bladder as it hurts when I really need a wee in a similar way to endo pain.

Sex can sometimes trigger a worse day but also sometimes it is ok.

I have the coil and I used to have no pain free days a month but since having the coil, I have a handful of them, which is amazing. At the moment I'm in a month long flare up caused by external stress.

Right now I'm snuggled up with DD watching a disney film so at least we can chill together. My relatives live really nearby and we have a childcare bubble with them so if DH is at work they are able to help if I'm getting tired, which I don't fall back on a lot but I'm very lucky that I can. Most of the time I can just get on.

your financial issues won’t last forever

Is it not a bit crazy to TTC when I'm working less hours due to the pandemic (limiting the work I'm able to carry out) and DH has been made redundant twice?

We have agreed that when his job situation is more stable it may be good to TTC

I wouldn't even stand a chance of getting to the GP to get my coil removed if we wanted to TTC now, as they're manic as a main vaccination centre

I don't really think people ever really think how someone else's illness effect them - until it happens to them. It's the same for many things in life - you can have empathy but no real understanding.

sorry you are in so much pain.

I so hear you OP