Hey all,

I've recently had my lap and been diagnosed with endo.

My recovery has been really smooth and I've been really lucky but tonight I've just over thought this illness to the point I'm sat in a dark room alone crying my eyes out.

It's such a harsh realisation that I'm stuck with this forever, that I'll probably need numerous ops, that it could affect my infertility and that I could always be suffering from these symptoms.

I also feel really emotional that I've suffered from this for so long without realising. I've suffered in silence and just accepted that I had bad periods when all along there was a reason. It's been such a long hard battle to get answers and it really has got to be me tonight. :(

Has anyone felt this way? I have a great partner and family. Although they try to understand, they haven't suffered like I have and I just feel really alone. I have nobody to talk to or cry to who actually understands what it is like living with this :(


8 Replies

  • You're not alone!! Your hormones will be all over the place. Hope you can get good treatment and that you WONT necessarily be suffering....you have answers/reason for your struggles xx

  • Thanks so much for responding. I know I'm not alone with all you lovely ladies on here. Can just be so hard to not feel alone when nobody you're close to understands.

    I know, I'm so glad I finally have answers. I've waited so long for them, I thought I'd feel so happy once I had answer but it's overwhelming!

    Just of one them nights! Thanks so much for your support xx

  • Hello Nicole,

    I'm so sorry to hear you have suffered a long time before getting diagnosed - I can completely relate and wanted to let you know I felt exactly like this too.

    I was diagnosed Nov 2015 age 40 after 20+ years of symptoms : had just started ivf scans when they found an ovarian cyst - surgery followed then stage 4 was diagnosed.

    I felt really overwhelmed and think I was in denial for a while. I'd signed up here and was avidly reading through all the posts not really admitting to myself this was me too. I felt really emotional when I thought of how long I'd been sick and struggled on determined, and of all the days I'd willed myself to get through and make it home to hide when I'd have dizzy attacks at work or stomach probs and feel really ill.

    The good news is I've hopefully just got on the right track for better support. After going round in circles after my first op when pain started coming back and another ivf cycle, I asked my doctor to refer me to a private gynaecologist : I only saw him yesterday and he had me in for an mri scan today, with a plan for possible laparoscopy but with the aim on excision surgery if needed and trying to preserve fertility. It would hopefully mean getting much better support now and for the long-term whatever happens.

    I'm still really scared though. I'm worried about what they'll find in the mri and lots of questions about possible bowel involvement. But we'll go one day at a time.

    It's really great you've got such a supportive partner and family there too. I know it's hard to explain how you feel at times. We are all here on this site to talk to and help support each other at any time, with so much helpful posts and information we are learning and arming ourselves all the time on getting the best care we deserve. Look after yourself and I hope you can feel better. X X X X

  • Hi Carrie

    I appreciate your reply so much. It's so comforting to know you aren't alone!

    I'm really sorry to hear about your battle and everything you are currently going through. It sounds like you a finally getting there! I hope things improve for you. :-) you definitely have the right approach with taking things one day at a time. I have my fingers crossed for your MRI. I really hope it all goes well!

    It can just be overwhelming at times to know you've dealt with so much for so long and just brushed it off because it didn't seem 'important' if that makes sense? I've spent years thinking that everyone goes through this and I can't handle pain. I've spent years trying to explain to people I'm in agony when they say 'everyone gets period pain'. I've been looked down on and called a liar. I've excluded myself from trips out, family events and spent holidays ruined by a pain that i really started to think was in my head and I was a crazy hypercondriac. I just feel so emotional that this is real and probably will be with me for many years to come. :( from research there Dosent seem to be a quick fix like I thought before my op

    Thanks again. Your kind words mean a lot to me xx

  • No problem Nicole, I know exactly what you mean - both my Mum and my Dad's Mum had bad periods and I thought 'it must be a family thing' but was baffled as to why I felt so crap all the time. It was strange though, after I found out it was endometriosis and it was real, it also meant there was a genuine reason why I was wiped out and couldn't do what other people expected me to. It also made me start to listen to my body and look after myself better - as soon as I start feeling first migraine symptoms or sore stomachs I try to take a painkiller and rest up, even if it's just watching mindless TV :-)

    There's been so much more coverage and recognition of endo in the news recently, hopefully with the right research we can get better treatments soon too - fingers crossed X X X X X

  • Thank you so much. It's so helpful to be able to relate to people when you are feeling down!

    I've seen a lot in the news. Hopefully it's start in the right direction for better diagnosis!

    Good luck with everything and take of yourself :)

    Thanks again xxx

  • Hi,

    Oh my goodness, you sound like you're in exactly the same position as me! I've never commented before but feel like you understand how I feel right now. After 20 years of suffering but being told they couldn't find any fibroids and that biopsies were clear, I had a laparoscopy 6 weeks ago - basically I think they gave me it to stop me complaining about bleeding for 3/4 of the last year. Never any mention of endometriosis. Turns out, I woke up in recovery being told that I had endometriosis in several places, including a large nodule in my rectum which was cut out leaving me with stitches. However, I was so relieved to have answers.

    My recovery was really smooth and I was very lucky. I was feeling so well that I went to the doctor's so they could sign me back to work before the end of my certificate (I'm a primary teacher). However, in the last couple of weeks I've felt so incredibly tired and then the night before my follow up appointment I was like you, crying myself to sleep. Yesterday I saw the consultant for the follow up and he could tell I was feeling a bit emotional (the red eyes were a give away!) so he sent me to see the specialist endo nurse. Embarrassily, I cried with her like I've never cried in front of a professional before! She told me I'd gone back to work too soon and they both said to remember I was still healing and to be kind to yourself - if you're anything like me, I find this hard to take, especially as I had been doing so well. The consultant also told me that there was research to show that some people plateau in their recovery around the two month mark but by six months, are feeling so much better. I'm hoping this is the case.

    So, you're not alone, I think this is part of the normal recovery process although it's not pleasant! I feel very alone and have been given details of the local endometriosis group - perhaps you could see if there is one in your area? X

  • Hi

    Thank you so much for taking the time to respond. I can be really hard when you feel alone and like nobody understands but having people here who do is so comforting.

    Really sorry to hear about the long struggle you have had. 20 Years is an awfully long time to be suffering with this dreadful pain and other symptoms. However im so glad your recovery was also smooth- our stories sound very alike!!!

    I think because my recovery was so smooth(which i didn't expect) I just let it all go over my head, i was so relieved that they'd found answers for me that i didn't really think about how emotional i was!

    I have had such a build up of emotion, anger and pain over the last 7 years and to finally understand that i have a chronic condition is the most overwhelmed i think i have ever felt in my life.

    It makes it hard also because i feel like i have to 'get over' it now. Almost like people look at me and think, 'yeah you had the op and they treated it and now your pain free, so move on' But its really dwelling on me!

    I guess its a lot to take in at a young age.

    I appreciate your support and really hope you're doing better soon. If you ever fancy a chat just drop me a message. Its nice to be able to relate to people who dont judge.

    Thanks again xxxx

You may also like...