Back home & overthinking

[Faylen34]

After 12 days in hospital I am back home. I now have to wear morphine patches, (butec), take oramorph, cyclizine and various other medication. I've started my prostap injections so I'm mindful of monitoring my mood. I take HRT gel and tablets. It's a drain.

So I decided not to to with the emergency surgery to drain my endometriomas. The reason is my specialist is on annual leave so I had no reassurance from her and I saw a few different consultants who all had different opinions but all kept saying my endo is severe and complex. Is it right thing to do etc. I'd still have to have my big complex surgery to remove rest of endo, my tubes and sort out my bowel with colorectal and bladder. I was fearful that it would have a negative impact on my bowel and I kept being reminded of how complex my issues are. I asked if there would be any risk on my bowel and had no reassurance on that as I was told it would depend on who was available on theatre.

So I'm now on pain management and due an emergency appointment with specialist in 4 weeks with hope my surgery can be bumped up.

I do wonder if I should of done the emergency but I know I need to focus on the path I chose and focus on getting to my multi surgeon specialist surgery done. But it does play on my mind did I do the right thing. I just didn't feel reassured.

As usual it's a waiting game. Better to be in my own home and on top of meds though as I found in hospital sometimes I'd be hours behind and withering in pain due to not having it on time.

Any support or shared experience is appreciated. Thank you.

[KittyTherapy]

Hi, wow that sounds like you had a really difficult decision to make but chose what you thought was the best by you. Although people may have similar stories I don't think anyone is 100% alike and I don't think anyone could say you made the wrong decision when you did what you thought was best. I totally understand about how being in your own environment means your pain is better controlled and can massively help with the anxiety. I hope you're not waiting too long before the next step / surgery x

[BloomingMarvellous]

dear Overthinker ( and may those of us that aren’t with this issue be the first to chuck the proverbial!) , you aren’t alone. This disease first and foremost is so poorly understood so actually how can any of us easily make the “right decision “? The best any of us can do is go with those who we trust, are the most knowledgeable and skilled. Next is to back your decision not to be panicked into anything less than well considered action with the best team. From what I hear from you that’s exactly what you’ve done. You’ve stuck to your guns and good on you.

One of the most undermining experiences I’ve had with this illness is that it plays on the heart of so much that society finds hard . They find it difficult to see women’s parity, that our health needs are different from men’s , that the health care profession has an inbuilt silencing of our differences and difficulties. Worst of all we have got used to it or even if we attempt to climb from underneath the problem we are left in a sea of unknowns with the desire of medics to help with no or few tools. We are used to not being confident in a field where there is doubt and uncertainty. Who frankly can blame us for “overthinking “ ? Overthinking here is simply trying to find the answer to a puzzle where we don’t have sufficient evidence to make great decisions.

So you’ve made the best decision in a place of doubt , be a peace with the fact that you’ve done you’re best in the circumstances and try to get well before the big one. Being kind to ourselves in the face of so much has to be the best thing we can do. All the love 🧡

[Moon_maiden]

Hi

A difficult decision, personally I think you’ve made a good decision in terms of trying to reduce the number of surgeries you have. If you can get the right surgery with potentially colorectal and urologist involved that would likely be best. If you trust your specialist and others are giving you different views and not as specialist it’s good to go with someone you trust. If need be and you find you do need the emergency surgery you can change your mind. Sometimes it can’t be helped and have to go with what’s needed at the time.

I told the surgeon who took my gallbladder out that I didn’t trust him to do further surgery as he’d told me he’d check over the small bowel for adhesions then admitted afterwards he’d only given a cursory look and he considered it too dangerous to check properly.

Hope what you’re taking/using is keeping the pain under control