The waiting : I am so close to giving up... - Endometriosis UK

Endometriosis UK
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The waiting


I am so close to giving up :( currently waiting for my 2nd lap after a diagnostic one in August. I'm stuck in a rut, pain is worsening by the day but I can't do anything because I'm waiting for this op, no back to back pill, no other treatments. It's ruining my life. No pain relief works either. Had my follow up from my first lap in november where I was seen by a different consultant because my surgeon had to go home sick. I know it wasn't his fault but the stand in could hardly answer my questions and he decided for me to have an MRI scan to see how deep my bowel endo was. ( he even said my surgeon who is head of gynae hardy doesnt do this anymore but he wanted to) it's put back my surgery and I've just had my results back and the letter said no significant endo which is the opposite to my results from my lap ( where nothing was removed!) I've been classed as severe and I had to fill out questionnaires and had the whole talk about the fact I will have an mdt for my surgery. Now I feel like because of some stupid MRI scan my surgeon is not too worried about getting my surgery done. I'm still in the same (worse Infact) pain I was in this time last year at the beginning of my push to find out what was wrong. UTI type feeling everyday, feels like a bruised bladder, groin pain, back pain, stabbing pains, painful bowels, knife like pain up my bottom, passing blood. And the goddamn fatigue. No one should have to deal with all that 24/7. I just want it to be over. My family don't understand why nothing is being done faster, but to me it's just endo- just put up with it.

Sorry for the moan, I'm just grieving the loss of what my life once was. Now it's just struggling through work..trying to manage pain and having no energy for anything else

:( xx

12 Replies

I totally understand where u r coming from. since I was told I have endo and possibly stage 4 I just cant think about anything else. it is like my life is on hold and nothing else matters. oh what I would give to go back to how it was before. I might not have had the most exciting of lives but at least it was a life.

Exactly how I life really does feel on hold. It's so easy to put all your hopes into this one thing to make you better because sometimes it feels like there is nothing else.

Really hope today finds you well and I am here if you ever want to talk. X

thanks. I do find it helps by talking to other people. im struggling at the mo because I had a lap in nov to remove an endometrioma and stage 4 endo only to find the surgeon said there was nothing. ive had problems since and ended up going for an emergency scan yesterday. it showed I now have 2 cyst both which they feel are endometriomas. the lady who did the scan couldnt believe they have been missed. so back to square one again it is for now. do u know how long u have to wait for your next op?

Dear howarth90,

I love how you write! What a frustrating situation, and (no significant endo)! WTF does that even mean! The amount has no significance on the pain. And in order for it to show on an MRI it has to be 3D flat lesions will not show up in a scan. Ugh. I'm so sorry for the ignorance you are having to contend with. Diesn't it just make you feel like you wish you could grab them by the hand and have them feel your pain! I don't know where you are or whom you're seeing for this treatment and I'd hate to suggest this on account your almost there to your surgery, but you need a specialist who deals specifically with endo cases. And usually these boards can help you find thatin your area through web sites or if you need other forums. Sounds like you need your bladder checked out as well. I am finally having my fifth surgery on Tuesday with an excision specialist he plans on putting stints in my bladder to view, no other surgeon has done that to me before. My symtons there though as well as my bowel symptoms have improved significantly as I await surgery on account of I have restricted my diet, no gluten , no meat, no eggs, no soy not that I ever had it but it's put into a lot of things I wasn't aware of like salad dressing for instance. Read about the endo diet on the endo resolved website that was where I found this specialist listed as well. Good luck I know how you feel. Keep up the fight! And bring awareness you have a great talent of writing emotions!

Thank you for your response. You have no idea how much that has lifted my mood this morning!

The funny thing is, is I am being seen by a endo specialist. A top surgeon who I do really trust and is a fab's just the stand in consultant I had who had kind of messed things up a little!

After a sleep and reading my letter again I think the surgeon was only trying to reassure me that my bowel endo hasn't done any significant damage like he had thought. There is a lot (says so in my hospital notes) but it looks to not be too deep which is a relief I guess.

Sorry I should have been a little clearer yesterday but pain and tiredness from my first day of my period yesterday had got in the way. I also have endo on my bladder and right ovary. I think sometimes it's so easy to take it personally when something like a hospital letter comes which I have to remember was done by his secretary and probably a cut and paste job! It upset me because I just need a date and some more info!

I hope you are well and thanks again

Faye xx

I know exactly how you feel and am in the same position as you! Waiting for an op but every time I call for a date it's pushed back a couple of months :(

I'm in so much pain right now and no one is taking me serious

So sorry to here that Bean18! How long have you been waiting? Is it a diagnostic lap. Go see your gp and push for some kind of pain management xx

Had a exploratory lap in September this one is for removal as the surgeon could do it before and I need the speacilist to do it - I'm in soo much pain today it's just unbearable

I'm in exactly the same situation- couldn't do it the first time. Just makes things worse as your still in pain and you're still waiting. Hope the pain eases x

I'm so sorry that life has hit you so hard with such challenges. Endo does put your life on hold and cancel your plans. I had little to no Xmas or new year cos of my endo. I've had that much trouble from my hospital I've had to go private in order to find a specialist so I'm skint as well. I often feel like my mood is really low, it's like an endo rain cloud cos whilst your mates and your cousins have fruitful relationships and fulfilled plans and can eat whatever they want I'm just prevented from feeling normal, I live off pain relief and hot water bottles and can only eat endo friendly food.

Question - does endo cause fatigue? Cos I'm rly struggling with tiredness and can't understand what it is I jut feel drained of ever bit of energy xxx

Sorry to hear you're suffering too, it's a miserable existence isn't it:(

I've just made enquiries about costs to see the same specialist private as I just can't wait anymore I'm in so much pain the last couple of days I think I now have either a bladder infection or the chocolate cysts are leaking or something

Thanks Faye,

I'm glad to hear you're in good hands. Coping with this disease really builds our character though doesn't it! Best of luck to you!

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