sympathetic ears…

[endotheline]

Sometimes I think no one else gets it

I was lucky to get surgery on Wednesday. This is my third surgery but I really was so so poorly afterwards. I’m feeling lonely, tired, emotional and in pain.

I hate people worrying about me so I’ve kept it quiet ish, hardly anyone knows and now I feel useless and uncared for (even though it’s my own fault I told virtually no one).

I left it a long time this time between surgeries and although I had a wonderful surgeon, the endo was ‘extensive’ apparently. I am bruised, in pain, I look 6 months pregnant, I feel my belly is going to fall out my bum. I’ve hardly managed more than a mouthful of food since Wed. He had inferred I was being a bit optimistic about speed of recovery and said now I’m way into my 40s, recovery would be slower. I’m due back at work Tuesday.

I think I’m still emotional from the general anaesthetic but I just need some love.

I had a hysteroscopy, endometrial biopsy, Novasure endometrial ablation and laparoscopic Helica removal and Helica ablation of endometriosis.

Sending care to others out there who need it.

x

[AllthatGlitters]

Hello sending love your way 💛it’s a tough journey going through all of this. I hope you get some relief now after surgery. Your recovery time / back to work seems very soon, only a week? I didn’t recover for at least over 2 weeks with the novasure endometrial ablation/hysteroscopy. Look after you first! X

[endotheline in reply to AllthatGlitters]

I think it’s because I must have got lucky last time. I had no pain before at all and was very active the next day and back to work within a couple. I had expected (naively!) the same thing. I now feel a bit of an idiot!! I can feel improvement but it’s verrrrry slow…

[Tatimati in reply to AllthatGlitters]

sending lots of love. I had 2 surgeries and already recovering.

[ChicagoGrey]

Bless you, I recently had surgery and they gave me a 2 week sick note, but I needed another week on top of this and looking back, I think I went back too soon. Depends what your job is I guess. I would suggest reaching out to your GP

Take care of yourself, hope you start to feel like yourself again soon!

[endotheline in reply to ChicagoGrey]

How are you feeling now? Was there a point you started to feel a real positive difference?

[ChicagoGrey in reply to endotheline]

I’d say around 4 weeks after surgery. But my job is quite active & long hours. I didn’t haven’t any infections & wounds healed well.

Saying this, I’m now about 9 weeks post surgery and it doesn’t appear to have helped the pain. But I find the Tens machine & usual pain relief helps a bit.

[endotheline in reply to ChicagoGrey]

Oh no… do you mean the surgery hasn’t helped or that it’s still some post op pain?

[ChicagoGrey in reply to endotheline]

I think the surgery has helped in some aspects but not the pain. All post op stuff done with.

[Cleo45]

Hi Endotheline,

This group is why we are here, to support each other! Just know you what you have been through (which is a hell of a lot!!) is nothing to be quiet about although I totally understand where you are coming from and I am guilty of underplaying things myself.

Do you have anyone close nearby that can look after you and help you ? It's a hell of a lot to go through on your own.

I would imagine you would have a sick line for work and can use that to take some time to recoup and look after yourself? You have been through a major op

Sending you lots and lots of love x

[endotheline in reply to Cleo45]

So thankful for the group.

My boss is very needy. He’s on a long haul flight on Tuesday so can probably be a bit more laid back that day. I wonder if I’ll just explain I may not quite be 100%. The last time I had this procedure, maybe I was super lucky but I truly didn’t get hardly any pain and I remember vividly walking 4 miles the next day. I was back in normal clothes too. So I kind of was expecting that do when he said I wouldn’t feel normal for a month, it was a bit of a shock. I was obviously very lucky and much younger last time!!

[Welshtwin]

I feel you pain. I never tell anyone when I'm in pain I hide it. Take care plenty of rest x

[endotheline in reply to Welshtwin]

Not sure why we do it. I just don’t want anyone who really knows me to feel sorry for me!! Even though I now want you guys to sympathise. Doesn’t make sense does it?!

[MrsPaddingtonBear]

Hello

Firstly, you are not alone!

You have just been through an extensive operation, you are tired, your body is in shock, your sore and hurting. Have you got adequate pain relief? Also keep an eye on your temperature just to make sure you don’t have a post op infection as that can make you feel a lot of pain and very unwell. Don’t worry too much about eating, that will come in time. Just keep drinking as much as you can. Don’t rush back to work, if you’re not ready you’re not ready, your health comes first. Good luck and be gentle with yourself.

[endotheline in reply to MrsPaddingtonBear]

They gave me a bag full of drugs but almost said I had to choose between pain or pooing! I’m so scared of getting constipated badly as had it very bad after both my child births. But I do have enough drugs to treat the whole of my home town I think!!

[Tropic]

Oh I hear you! I had surgery on Monday (my second). I am feeling very sorry for myself! Feel so flat, crying, sore. I feel like no one understands. I’m so sick of this endless torture 😭😭😭😭😭

[endotheline in reply to Tropic]

Oh gosh. I’m sorry. I absolutely sympathise. How are you today? I’m not too bad if I stay in one position now but if I try and move I yelp in pain. I’m meant to take the dressings off today but scared to!

[Tropic in reply to endotheline]

Sorry for being such a downer when you are going through it too! I am having a terrible day to be honest. I feel so alone be cause this disease is so isolating. Feels like friends and family don’t get it. I’m so sick of the endlessness of this. And just.so.tired. And I had a big argument with my husband. Can I blame all of this on the anaesthetic??

I’m sorry you are in so much pain 😪 are you taking strong pain relief? I’m scared to take it after what it did to my bowels for 5 days.

My doctor didn’t tell me when to take my dressings off. I wonder if I should take mine off too? Mine are itchy which I think is a good thing and mean they’re healing?

[endotheline in reply to Tropic]

You sound like me!! As oddly I fell out with my husband yesterday! We normally get on fine but he just snapped ‘why are you trying to pick a fight with everything?!’ That set me off even more with crying!

I have the same issue with drugs. I don’t want to experience the awful constipation I had before. The pain would be worse I’m sure!! I think we can blame everything on the GA. My anaesthetist told me he used 14 different kinds of drugs in my concoction. Afterwards I was given paracetamol, codeine, morphine and something beginning with N. None helped really.

I got told to remove dressings after 2-3 days and they’ve given me spare to reapply. I’m scared to remove them in case all my insides pop out!!

[Tropic in reply to endotheline]

Oh wow! It’s comforting to know we’re not alone in our experiences, isn’t it? That is a lot of different medications!!

It was awful when I woke up from the op. Apparently the medication I have been taking for endo stops pain relief from working. No one told me that, even though I put the medication on my hospital admission forms. The anaesthetist told me that it takes 72 hours to clear the system. Even though I hadn’t been taking it for 3-4 nights before my surgery, he said it must have been still in my system because I woke up in absolute pain! I was crying, moaning, trying to tell them with my oxygen mask that I was in pain. It was so awful. Once they got my pain under control it was much better, but such an awful experience

[endotheline in reply to Tropic]

I was surprised with the pain I had. And they wanted me to sit as my oxygen was so low but every time I sat up, I almost passed out/was sick. It was a never ending cycle and a very very long day. But every day I hope will get better now. Let’s keep our fingers crossed!

[endotheline]

I’d be lost without you guys I really would (I need that emotional looking emoji here!!).

I do have my husband and two girls at home but my husband has had to work some of the time. My teen is a bit haywire at the moment but thankfully my 11 year old is being mega lovely.

The worst thing is I honestly feel I’m carrying a bowling ball around. I’m so big and heavy (or feels like it). My main pain is if I try to do anything abdo related. That makes sense of course but you don’t realise how often you use your abdominal muscles. Plus the sickness I didn’t think would last this long. I know I’m meant to be eating lots of fresh fruit and veg. I managed some baby corn and broccoli last night but that’s about it.

I’m guessing the general anaesthetic was making me super teary and emotional.

I know it’ll all be worth it when I’m more recovered. The consultant did warn me I’d take longer to recover than 8 years ago (but I was sure he was wrong!)

I do truly appreciate your replies as you’ve made me feel more human and not alone. Where would we be without this group?!

xx

[Tropic]

Also, it’s like a gave birth to a 💩 this morning. I was so backed up because of the pain relief (I’m 5 days post surgery and hadn’t been to the toilet since before surgery). It was so painful I was screaming and thought I would pass out!

[endotheline in reply to Tropic]

I haven’t been either yet but I’ve hardly touched any food yet so I don’t feel blocked… yet!

[MangoStickyRice]

absolutely don’t be afraid to take more time off for recovery. I took one week and was then pressured into going back to work (I only had a laparoscopy and they found nothing). Going back a week later was the worst decision. This time (next one I have is scheduled for May) I’m taking off 2 weeks then a phased return. The main issue I had was having to sit at a desk unable to be in a position that eased any pain. I was exhausted because I was battling my body for 8 hours a day being tense and uncomfortable.

[endotheline in reply to MangoStickyRice]

Oh gosh. I’m glad you have more time off next time. It’s pretty invasive whatever they do really. And the GA is something else!

[Cocoacupid]

hun you need to take care of yourself and I really think if your still poorly you need more time off . Unsure what you do for work but if it’s manual sort of work you need to rest for longer. If they say a month or two off you need it. When we get older we do take longer to heal. I had a diagnostic lap last year and five days later was in the hospital with sepsis you need to recover properly don’t do what I did which was a little walk ten mins into town . Although took me longer. As I thought you’re supposed to be up walking around so you don’t get blood clots. Which was probably too soon after surgery. Hun you do need to reach out to your support network don’t keep things to yourself. I’ve done that before while I had a mental illness which wasn’t properly managed at the time and kept myself to myself as I didn’t want people to worry. I thought that if I wa suicidal to keep away as didn’t want to drag people down around me. Little did I know that was the worst thing I could possible do. Thank goodness because of a medication change and a review and being told I’m probably autistic and it’s not a personality disorder I am a completely different person now as I understand myself a little more. If I start feeling a bit anxious or feel overwhelmed I reach out now I don’t keep it in. Although sometimes I don’t contact family at times but I do go to the gp and I tell them how I feel and then I go and see friends and family after . Xx take care xxx I know sick pay is rubbish but I wouldn’t rush back to work if your not feeling ok.

[endotheline in reply to Cocoacupid]

I know you’re right. I felt sad he said I wouldn’t recover as quick now I’m 46 but I truly feel 26 (not right now of course but usually!!!). I do a desk based job so hoping I can take it easy-ish. It’s just a very very busy environment and I try to cover India, UK and US time zones. That will need some re-thought and attention I think!!

[Cocoacupid in reply to endotheline]

At least that is an easy ish sort of job mine is the worst possible as being in the care industry. Xx but your still using your brain and if your anything like me with probably fibromyalgia I have brain fog and things and am only 38 but some days I feel like I’m 90

[endotheline in reply to Cocoacupid]

Oh bless you xx it’s definitely hard.

[Tropic]

It’s called Naltrexone. I wonder if anyone else is taking it. I should probably tell the others. I won’t go back on it, the anaesthetist said it’s dangerous to be on because what if you needed emergency surgery? And you were on it? Anaesthetic wouldn’t work. That frightened me right out of ever going on it again! Not that I found it helped much anyway, but it did help me sleep (I was taking it at night) and it’s hard to tell what medications make a difference when you’re taking several at once. But yes, stay clear of that one!

[endotheline]

one more thing… these comfy bottoms have been my saving grace!!!! Not sure if we’re allowed to advertise (I have no affiliation with them) but they’re from Ooh Betty. I am tall and no comfy bottoms fitted yet they make these to measure length wise. You can choose colour combinations too!!! They’ve not dug in at all thanks to the huge waistband you can fold down or pull up which is amazing. Had to tell my fellow endo girls. Excuse the post surgery pic but I was so happy with them. Sad today as I’ve had to put them in the wash.

Happy Easter all xxx

Grey and pink joggers

[Salamander88]

Hi, Really sorry to hear what you're going through and sending you strength and love - and hope the surgery brings you some relief in time and that the post-surgery pain starts to settle soon. Also just to echo what others have said really about options for buying yourself a bit more time before returning if you need it. Please take things as easy as you can, and keep asking for help, here and from anyone that's around offline, you're not alone! x