Just finished a hellishly long last 5 day working week. It started with a mental health nurse appointment where I broke down after agreeing to counselling but not anti depressants after discussing the destruction of my career, life, health, energy by endo and my fear of this high risk op.
Then worked non stop through to half past seven with no lunch amid pressure already from boss to review the 4 day arrangement and get occ health involved. Half my problem is I'm trying to cover 2 people's worth of work and naturally doing it badly. I sent an email yesterday to highlight some achievements but no appreciation, all I got was a request to up the momentum. Beyond demoralised. Last night my hubby was so tired he dinged the car, he never has things like that happen but he is doing 3 people's worth of work and still caring for me.
Completely and utterly beyond hope and emotionally exhausted.
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Starry
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In an odd way, it's comforting to know other people are feeling as stressed out as I am.... my doctor gave me a ridiculous pamphlet this week about mental health because I've been in tears every time I've seen her for the last few months over how bad things have gotten, how it's ruined my social life and is threatening my professional life.... she also told me to download an app called Mindfulness...... it talked me through being aware of my body... as if I'm not already acutely aware of my damn body.
I don't know what the answer is because they don't seem to be doing anything for me right now to save my quality of life, but one thing is for sure: this isn't in your head. People just do not understand. As best you can, keep your head up. You've got to be so much stronger than most people to keep pushing through with all these awful symptoms interfering. I really hope something works out for you!! ❤️
Thanks for replying JackieBo it's nice to know we are not alone x I just wish I could have confidence that the procedure will make a difference to the fatigue.
It is rough and you are at a really difficult, stressful point in the treatment process right now. I'm not surprised you cried when you talked to the nurse, it's completely normal IMO. I have one particular nurse at my GP's practice that I have seen regularly over the past couple of years and I've lost count of how many times I burst into tears in her office, primarily because I felt like no-one else was listening. She really helped me through it, and helped me face the surgery which I didn't really want but knew I had to have.
With regards to the surgery - I think it is important to keep your sense of perspective. Although excision of RV endo is difficult, you don't need a lot of other surgery, like a hysterectomy so things could be a lot worse.
This link here shows the statistics for bsge centres in 2015 showing how many bowel surgeries were carried out for RV endometriosis. If you look at it it's clear that a full bowel resection is very rare. They have to warn us that it's a possibility, but very few are actually carried out.
What has gotten me scared me is after I saw the Colorectal guy in January / February how my consultant in the follow up session when I had expected to agree to it suddenly made a u turn , recommended this zoladex /oopherectomy no excision alternative instead citing the high risk of the bowel surgery.
Everyone in forums and on fb have been teling me that is a very unusual approach. When I first met him in September 16 he was confident and talked about a clean slate with no bowel resections (in the data you share it states 2 for Norwich, perhaps his private work is deemed separate / not recorded reported to BSGE).
I'm now being asked, having fed back my reluctance to go down the Oopherectomy route given zoladex experience to date , in view of the high risk to go back and see the Colorectal guy for a second time. I only saw him February, I don't understand what has changed or what extra he can tell me now. It's not like I have any other options left any more unless I could tolerate my symptoms which I am now struggling to do.
Are you happy with the consultant? I know you have private care, so would it be possible to have a consultation with someone else to talk things through? In your position I would go and see the bowel surgeon and have a frank talk with him about the bowel surgery and find out what he thinks. My concern would be not that the excision of the RV endo isn't possible, but that your consultant doesn't want to do it.
That did cross my mind as I guess there are degrees of bowel op trickiness, but if you ask it sounds like you don't trust them. He seems warm, nice, to want to help, stayed behind and missed a personal event when I was held up late once. I've no reason not to think him competent, 19 cases is not at the bottom of the op frequency table. Perhaps he is just being über cautious and I am jumping at shadows because the first op left me in a worse state after than before, which may not be anything to do with the op could simply be the endo or the coil, or even something else altogether stress, CFS, depression. God only knows. Colorectal guy is sweet, genius type but a bit of a egomaniac who just said he could do anything and described the different surgeries. perhaps Mr consultant saw something that he hadn't. Guess you are right, all I can do is go see him.
I've not yet come across a doctor who will admit that they can't do something, which can be a bit of a problem IMO. The gynae who originally diagnosed me was initially very confident that he could carry out my hyst (I didn't know about bsge centres then) but as time went on, he got more and more cagey, wouldn't set a surgery date, and suddenly told me that I could be referred on to a specialist centre if I wanted to but it was my choice. He never overtly said that the surgery was beyond him but was clearly relieved when I opted to be referred on and in hindsight, I'm very glad that I was, because he had said it would be open surgery and he wouldn't have been able to excise the deep endo. And yet I've had other doctors tell me since that he's absolutely fantastic and can do anything.
I get the feeling that you don't have 100% confidence in your consultant and feel that he is messing you around a bit by not giving you a straightforward treatment plan and asking you to make an impossible choice which can only be adding to your stress. Do you feel like he's the right person to operate on you (setting the fact that he's bsge and therefore should know what he's doing aside)?
I did until the Oopherectomy thing came up. It's put the wind up me. But he knows I'm distressed after the first op. In the uturn session he did then talk about severe adhesions and my bowel being distorted so perhaps that is why I need to go back. Hubby just thinks he is being cautious and exploring all of the ridiculously limited options. The Colorectal guy had been pushing for me to agree to hysterectomy to give him good access. it's not so much quantity as location.
I do know others have more severe surgery to face and I should be grateful for that. I guess I need to manage my emotional difficulties around surgery better.
My heart goes out to you. I know hearing other's opinion is not always easy when you feel people aren't quite in the same situation as you or don't quite understand, but I think I can understand your situation, having reply to one of your previous posts too. I used to be in a very stressful work environment running my own business singlehandedly, I worked myself into the ground trying desperately to please everyone, all of the time, never once missing a deadline and never letting anyone down. However...what I never realised was how much I was letting myself down, I was being everything to everybody yet doing nothing for myself. My mental health was suffering as I often got no thanks, despite regularly putting myself out for people to a huge extent, and a far bigger extent than most being that I battled with chronic fatigue and un-diagnosed endo. I worked very long hours, slept terribly, ate badly and never once put myself first. That went on for 13 years. I'm now 43, desperately trying to still have a family and battling with very severe stage IV RV endo and I dream of being able to turn time back and wished I'd put myself first just once.
Yes, it's very easy to say just be kind to yourself, back off work, give yourself time etc etc, as I know it is far easier to say than do and life still has to go on and you still have to earn an living, I get it, but having been in the thick of it and still fighting to come out the other side with so many regrets having not cared for myself, I feel I can say you must start putting yourself at the top of the list as it doesn't sound like you are doing. You are having to cope with a huge amount both mentally and physically and are doing brilliantly, but don't underestimate what that fight entails and the energy it uses up, what you don't need is anything to further demoralise you yet that is exactly what is happening when you get no real credit at work.
With hindsight, I wished I'd told more people just to pi** off and made myself the important one, as that alone can make a real dent mentally. What I have also realised having had to take the last two years off work completely, not only to try and recover from total peritoneal excision but also try to have a family, is that 2 years out of my 43 years so far has hardly meant anything at all. Yes, it will be hard to get back on the horse again, I may have to re-train to catch up on what I've missed, but the satisfaction of having put my recovery and my feelings first far outweighs any worry with regard to any job. It has also given me time to reflect and realise somethings are not as important as you initially thought they were.
You matter most and sometimes you need to re-focus and recognise that. Battling endo is a truly exhausting process without being further demoralised by other people's influence. Don't underestimate the energy needed, I'm 15 years down the line of battling severe chronic fatigue which came from un-diagnosed endo, plus 5 years of surgery on endo/recovery and the added stress of infertility, the fight has truly broken me, don't wait until you are forced to stop your life to look after yourself, try and pre-empt what lies ahead and start putting you at number one spot.
Thanks Sez73 for taking the time to write such a long empathetic reply. The support here is amazing. That could be my story but for the 5 years Surgery and a years age difference. X Take care of you.
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