Endometriosis UK
36,156 members32,135 posts

Freaking out!!!:-(

Hi ladies, I really need some support!! Been awake most of night in extreme pain again :-( I'm starting to feel really worried about what to expect with my looming major surgery. I know I have the most severe form of endo and adenmyosis and that it's everywhere but neither of my consultants have explained what the planned surgery will involve!! I have no idea what's going to happen and since my.Mri scan(still waiting for results) I'm getting really anxious that I'm just going to get a date for sugery without being informed about what's involved. Will I need a hysterectomy,bowel resection,scents in ureters,etc how long will I be in hospital and what about pain relief and recovery? I feel utterly terrified and in the dark :-( xx

4 Replies

Hi Victoria044, You need to find out the results of your mri scan, and find out from an appointment from the consultant as to your surgery or contact your consultants secretary and as these questions to them. Sorry to hear you have been awake for most of the night with extreme pain. Worrying about not knowing what is going to happen for your surgery is going to make your pain flare up more. Hope your pain eases for you soon and you manage go get answers to your questions.

Take care xx


Hello Victoria044, I think you should get in touch with your consultants and ask for an explanation of exactly what the surgery is about. Don't allow them to fob you off. You have every right to ask questions about your surgery and they have to explain it to you in plain English for you to understand. Please try not to worry, I know it's difficult but please hold on. You need to be bold and not allow any of the doctors to treat you like an idiot. If you find that the consultants are being difficult, get your GP to help. Unfortunately endo sufferers have to beg and fight for everything. They have no ida what we have to live with. Once you receive the letter about your surgery it should give you an idea about what's going to happen. Armed with the letter you can then phone the consultants or book an appointment with your GP for an explanation. I know how scary and painful it all is but we're tougher than the average person. You'll be just fine, believe me...I've had more than 12 surgeries; including a bowel resection. I'm so sorry you have to endure all of this on top of your physical pain. Please let us know how it goes. I wish you all the very best. And remember; You'll be fine.... We are survivors.


Dear lady penelopy, thank you so much for your support and kind words :-) I made an appointment today to see my consultant next week, I'm also seeing my gp to ask for better pain relief. Been thinking about what I should ask my consultant apart from explaining the surgery to me, any advice?? I will mention how worried I am about losing alot of weight( without trying. And the loss of feeling in my left leg and groin area. Thank you again and I'm feeling stronger and more positive now xx


Hello victoria044, I'm so sorry it's taken me so long to get back to you. I had a nasty flare up of Fibromyalgia and it's kept me in bed with horrible pain everywhere. I hope you managed to see the consultant. Apart from explaining the surgery, they need to tell you if you'll have any side effects, approximately how long is the recovery time, what you can and cannot do eg lifting and carrying. What you can do to help the recovery. Is it something you can manage alone with or do you need to stay with family. If you can't stay with family call the social services and ask for a carer. Don't even bother asking the GP. Remember that there's no stupid question. You're having your body cut up and your insides chopped, marinated and grilled over a slow heat so you are allowed to ask any question plus they have to be patient and respond to you until you're completely clear, satisfied and happy with the answers. They're not doing you a favour, they get paid to do their job, youre the customer who has been working and paying Tax and NI. I usually have a list of questions when I'm going to see my GP. Finally, I really really wish I coukd give you 30kg of my 90kg weight 😀. Yes definitely mention the numbness and weight loss. I hope to hear from you soon. Take care of you. And always remember that we are stronger than the average woman. Go get them!!!


You may also like...