It's been 4 months since my diagnostic lap now and deep RV endo confirmed. 7 from my first GP appointment when she found my nodule and mentioned the word Endo to me. I'm now having to face up to major surgery but am still really struggling to take it all in what has happened, feels so fast.
It's a hard decision to make when I am still struggling to get my head around being as ill as they tell me I am. It still doesn't seem real. I keep thinking I'm not I'll, but then double taking as I get a twinge, or I have a bad night.
Even though I had to request reduced hours at work because of the exhaustion and I have no life any more, I still don't feel like I can be really be ill enough to need this drastic surgery. Can I???
Has any one else had trouble believing and accepting it? It's like my thoughts go round on a hamster wheel. I have moments, like when they do the zoladex implants when it's all really real, but then I go back to work and it's like nothings wrong. I tell myself the pain isnt bad. Its situation normal, I'm under work pressure, loads to do everything is routine normal.
I go through the motions, feel stressed about daily stuff I've got to do. Then it comes back with a wave of weakness or a pelvic twinge but everything happening around me still is like normal. It's a very surreal feeling.
Somehow I have to get my head round this, keep going and get this op. Just don't know how to....
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Starry
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I was diagnosed last year after a lap. I lost my left ovary and tube and was told my endo was extensive.
Yes I'd had painful periods my whole life but I was always told this was normal. I then got a UTI and life changed! My endo has constricted my left ureter and caused my left kidney to fail.
I had 6 months of zoladex last year and in that time apart from the exhaustion and odd twinge I felt okay. I stayed positive as I was aiming to start my family.
Fast forward to March and following a miscarriage my endo flared up beyond what I could ever imagine. I'm now back on the zoladex. Tho this time I'm taking hrt. Still get all the side effects. And still get some of my endo symptoms!! That's what reminds me (like you) each time, how bad it is.
I too am awaiting surgery. They're gonna remove my left kidney and ureter along with the endo. They're not gonna touch my bowel or bladder endo tho coz it's too much in one surgery. They tell me I will need further surgeries but to try for my family again first.
So I totally understand where you are. I'm hoping to return to work soon but in a reduced capacity as I have a very demanding job.
Endo has totally changed my life since my diagnosis 14 months ago. Some days are better than others but it's just take each day as it comes.
Wow, to lose a kidney that must be so very scarey x . My bowel is distorted out of place with adhesions but luckily not infiltrated through.
No date yet. I'm trying zoladex as I was offered a BLO as an out there alternative to excision, but I am not seeing any improvement so far half way through a 3 month trial. So I wrote last week to say if an op was inevitable then it seemed better to tackle the nodule rather than remove my healthy ovaries and he has replied to ask me to first go back again to see the Colorectal surgeon. I then have a checkpoint with him in June and imagine if I agree it will then be July for the op.
With you 100%. I'm trying to complete teacher training and have to tell myself I'm not in pain to get through the day. I have no idea how I'm going to get to the end of the academic year and qualify. I'm too stubborn to believe that this is really bad, that I'm not 'ill', that I don't have a 'disease' and that I can do everything because if I still down and think about it, I wouldn't be able to drive to work, I wouldn't be able to stand in front of 30 students and be he best at my job.
Someone asked me if I was really fit enough to be back at work (after second lap) and I had to tell them I was because if i really thought about it I would probably only make it to work 3 times a week maybe? I'm exhausted every day, I'm frustrated, upset at what I am having to go through all the time and know that I can't tell myself to buck up and stop being a wimp because really I'm not being a wimp, I just can't help it.
I empathise i was doing some professional exams the week of my diagnosis and it was incredibly stressful. I guess if you can get through the training and nqt year then you could look at supply work for flexibility in your hours. I was lucky insofar as i went perm from contract work ( no work no pay) 9 months before i was diagnosed so it could have been a whole lot worse.
I relate completely too, thinking of you all and wishing you all the very best.
I have stage 4, diagnosed end of 2015 age 40 after 20 off years of symptoms during our first ivf.
I'm still working full time: I get the periods from hell and also bad ovulation pain, migraines, exhaustion and upset stomachs - but last couple of weeks I've been feeling better and don't know why - possibly been in flare mode since the start of the year due to other stress sources.
I'm due another operation soon as currently bowel is stuck, kidney is swollen and ovaries are also stuck. I keep thinking 'do I really need this?' 'What happens if they don't operate?' 'I'm not in pain all the time' - would the existing problems just get worse? We're also trying to preserve fertility which might be a challenge.
I was definitely in denial at first and probably still am to an extent, I think after years of being told 'nothing is wrong with you', you learn to cope and get on but then when they have a look inside and realise there are some pretty major problems going on, it all seems like a rollercoaster X X X X
Hugs. I'm 42 and had period symptoms back at secondary school and failed investigation into dyspareunia in my 20s. Youre right, i guess its the results of so many years accepting it's just what I'm like, I'm a low energy person, periods are just painful, sometimes women just randomly faint and rationalising it all away for decades. There was always a decent explanation for each thing in isolation.
Just worry even if excision is successful technically i may not see symptoms actually improve and may end up with yet more pain. But what can you do. Limping on is not really a viable option any more.
Hugs right back to you too Starry. I know, I share your worries about the excision too - although my new Consultant explained it well, saying when you cut away the damaged bits it encourages new healthy tissue to grow in its place - this would hopefully offer much better relief long term hopefully. I just managed to get referred to my new Consultant recently after a laparotomy 2015 under general gynaecology and not being referred on to the specialist - luckily in hand now and should be treated in Edinburgh bsge hospital soon. This forum has been a god send for support and learning all about endo, it's scary but feel a bit more in control knowing what's going on now X X X X
Hi. I completely understand where you coming from, I was diagnosed in September 16. I'd had no issues other than a few miscarriages but endometriosis had never been mentioned. I went in with appendicitis and came home with an incurable disease I'd never heard of.
For me reading anything I could find on it helped me to understand what was going on inside me and it helped my parents and husband understand more ( if I had a £ for every time someone says you don't look ill my hubby wouldn't need to go to work!)
I was in complete denial over it I wasn't ill before my surgery and I had ran 10k the day before the supposed appendix problems. It wasn't till my 6 week check that I realised it was here to stay the gyne said you pretty much just have to get used it and was very unhelpful. That's when the reading kicked in!!
Do you have a supportive family around you or friends? I'd have not coped with out my husband he's been brilliant and has taken every problem we've had thrown at us and helped me see it's not all bad.
I'm waiting for surgery to and it's scary but I'm just hoping it'll help and give us some life back.
All I can suggest is making sure you understand the disease and having people to talk to about it so in time you get your head round it. You aren't on your own and forums like this are very helpful.
Yes I feel the same I awaiting hysterectomy and like you after having ages of people saying nothing wrong to having a major op really it's hard to get your head around. Then on the internet seems to be lots of people curing endo with diet / excercise cutting out stress taking supplements etc I really not wanting to have op keep thinking there something else I could do to self help. But have spent years eating organic doing yoga and taking vits I've kept myself pretty healthy but can no hardly walk quality of life is awful am very isolated now as self employed but can barely work .
But yes because we don't look ill all the time endo just swollen bellies when we know we've eaten next to nothing or can't stand up for long or walk much it really plays with your head and not easily politely explained to people.
In my head like you if I get ten minutes without a pain I start thinking maybe I can manage without surgery blah blah blah 😖😖😖 then see someone else just doing normal stuff easily and realize how ill and how rubbish our quantity of life is really but then the thought of surgery 😪😪😪it's so hard I totally know what you mean .
Exactly that feeling Alice! Your mind plays tricks i guess. Sorry to hear you're feeling isolated. Take care of you x
I agree with everyone else - because so many of us have been ill for so long, often without diagnosis (and being told that how we feel is normal) it becomes normal and you think life is like this for everyone. I had always had painful periods and I had been to the GP so many times only to be given mefenamic acid and told it was just one of those things that I had accepted it. I think I knew my periods were bad, but I thought I was just unfortunate. In hindsight, I can't believe that it was undiagnosed for so long when I'd had so many trips to the GP for various problems - frequent fainting, my unpredictable digestive system, constant bouts of thrush and cystitis, bleeding after sex, smear tests that were always problematic because my cervix was stuck in a funny position and they could never find it. I had slowly adapted to manage all this - I'm self-employed because in reality I could not manage to work outside the home, I've done all the different exclusion diets, we haven't been properly on holiday in years and everything has been timed around my periods. I didn't even really acknowledge that I was doing it until recently. The only problem I didn't have was infertility, but we had our children relatively young and I suspect that if we had waited, that would not have been the case. Certainly by the time I was diagnosed I would have had issues.
Even now, post surgery, I am still finding it hard to come to terms with the fact that I was ill enough to need such drastic treatment. Theoretically I know I was, but emotionally I don't think that I have accepted it yet and I don't think I will be able to until I have more distance from it. It's too scary to think about right now. But illness doesn't have to be dramatic, it can be just a constant low level grind, and that seems to be what you often get with endo. Do you think you might benefit from some pre surgery counselling, or even just ringing the endo UK helpline and having someone to talk to? It is so hard.
I think you are spot on Hidden , intellectually my head gets it, but emotionally it's something else. Yes i t did try the Endo UK line this week but couldn't get through. I have been referred to a mental health nurse and see her Friday morning so will see what may be possible. Now i have reduced hours i could agree a regular counseling slot.
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