I had my laparscorpy surgery back in November 2021. I was diagnosed with endometriosis, I also had a MRI scan two after the surgery, received my results back in Feb this year. The consultant was not helpful whatsoever left me to decided, from the mri scan they found rectovaginal endometriosis cyst, I had two options go on mini pill or get referred to endometriosis specialist, I chose the mini pill, then go back in May to have another scan, trying to get a GP appointment is a joke, so I have one tomorrow still don't know idvi have made the right choice. Also I have been called in to have plevis ultrasound at the hospital, on the 26th of April, first the consultant said MRI scan in May now been called for ultrasound scan, totally confused I do not know if I am coming or going.
I cry most days, lost the motivation to do things in life, I completely down, lost and I don't know how to cope and live with endometriosis, I can't have children bc of another health problems,I am trying to cope with the expectation of not having children and endometriosis. I have tried to talk to friends and family but don't understand. I started have counselling early days. Has anyone been through this any advice would be so appreciated.
Thanks💙
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Cockapoo-2016
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I am so sorry to hear you are going through this right now 😢. I will definitely speak to your gp tomorrow and get some answers with regards to if they have referred you to see a specialist or not and if they have see if you can get contact details from the hospital and ask them if they have booked you in for an ultrasound or an mri scan and see what they say, just so you have got confirmation on where you stand, but make sure you have been referred to an endometriosis clinic because referring you to a normal gyno clinic will not be helpful at all.
Sorry I can’t be much help with advice but the only thing you can do is keep pushing it and make sure you get referred as you definitely need to be seen ❤️.
Always here if you ever need a chat and hope you get this sorted ❤️
Thank you so very much for taking the time to reply to my question. It's very distressing when the NHS don't help you and trying to get your head around being diagnosed with endometriosis.Thank you once again
Aww no problem at all and really hope you get it sorted and I completely get that as I had quite a few issues where I wasn’t being heard and that they were not looking into things properly and it is so frustrating especially when you are in constant pain ❤️
Let me know how you get on with the doctors tomorrow and hope you get the answers you need. What I do is write all my questions down before my appointments so I don’t miss anything out and know that I have asked them everything I wanted ❤️
Hi Cockapoo, I’m sorry to learn of how you feel. If it’s any consolation, many women with endometriosis could share your sentiments. I’m one of them; I’ve had a number of laparoscopies to remove endometriosis. I also have Adenomyosis. I’ve had a miscarriages and then did IVF to use a surrogate. Covid has meat I haven’t had a chance to use the surrogate. I may never have children and came to the conclusion about a year ago. My experience with the NHS whilst not perfect, hasn’t been bad. I realise they are all very busy and trying to catch up on cancelled appointments etc because of covid. My MRI scan has been cancelled twice now but I’m hopeful. I have had endometriosis for over 25 years and was diagnosed at firstly clinically but only received a surgical diagnosis in my early 30s. I’m hoping to have a hysterectomy after I turn 40. Whilst it will not cure the endometriosis I can atleast come off of Prostap which I’ve been on for 2 years which has put me into menopause by switching of my ovaries. I’ve had severe chronic pain and as a result neurological issues too. I have tried speaking to a therapist but it really wasn’t for me. So I kept my own journal and started to use this app called Headspace. It’s helped me Along with a gluten, wheat, egg and dairy free vegetarian diet. I also walk and run when I’m not in pain which has helped with my mood problems quite a bit. I just thought I’d share what has worked for me. I really hope, you will feel better soon, and the therapist talks you through some techniques that works for you! Take care!!!
Thank you so much for for sharing your story, I am so sorry to hear what you have been through. I amare your encourage and strength throughout the whole thing. Also thank you for your advice .
HiYes I have been thru it. I guess long ago I should have seen an endometriosis specialist. I didn’t know one existed . I have not wanted to live and feel hopeless also .
I use a tens machine for pain. Friends and family and doctors don’t want to acknowledge it . It’s sounds so victumy but it’s true. I’m so sorry .
Thank you do much for replying back. It's given me some comfort that I am not alone and there is people who understand what we our all going through. Absolutely right family and friends don't want to acknowledge it. I will try tens machine for pain. Thanks again 💜.
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