Endo back? So down. Any advice please

As I type this, I'm in bed, at midnight, sobbing my heart out because

A) I had a laparoscopy for stage 1 endo last year, which I was told they had removed all of and 'shouldn't have caused pain anyway'

B) the same exact excruciating pain I had before surgery, on my right lower side, between my abdomen and back that feels like someone is crushing and burning my insides at the same time, is back.

It hasn't even been a year :(

I'm on the pill, which I've taken without breaks and was told I wouldn't have periods but I've had two since I started it.

How do you any of you fellow cope with this? I have a 12 hour day in work tomorrow, I can't convince my boyfriend to try for a baby because he doesn't feel 'ready' even though he's 30, no matter how much I sleep I'm always tired.

When did this become my life? :( does the pain ever stop? I'm 21 and I feel so old and tired and I've never felt so crushed by this disease before. I'm devastated.

7 Replies

  • Hi Darling i Feel ur pain. I'm also in same boat as u. I had my op in October last year. I also feel like its back. So confusing . I had 1st stage removed frm my intestine and bladder. Hope we get some answers. Hav u made another appointment with ue specialist? Xx

  • The exhaustion is so hard - you're not alone. I'm 33 and have been off work for nearly 8 months now due to this stupid disease... Everyone outside of it has their attempts at being positive or their well meaning suggestions... As if changing your diet will magically take all the pain away and let you get an uninterrupted nights sleep... Oh how we wish....

    One thing - Is if you have the ability to look into some time off work, I reccomend it... When I finally took my doctor up on his suggestion to do that - I finally learned what the connection between stress and pain was really all about. It's amazing how much worse stress makes our pain... it doesn't mean that our pain is less real, far from it... But it does mean that self-care and stress management makes a difference... A real difference.

    Do you mind me asking what you are on for pain management?

    Don't give up - You're not alone.

  • Hi Hun I really do feel for you and unfortunately it does try to take over your life but please don't let it. I've missed out on a lot over the past 20 years because of this disease but I have also gained a lot. Like a very supportive son, partner and friends and now this forum of very strong women who are coping everyday the best they can. I know it's easier said than done and some days I really struggle with this but remind yourself of the good things in your life and fight this disease with your strength. You are a strong person. I had some advice recently to help keep positive when my pain is so bad that I can't stand or do everyday things. To write myself a loving and caring letter and to read it each time. Exercise does help I love dancing but since last November I've been unable to attend classes so I try to go swimming twice a week. My hot water bottle is my best friend. I hope this help Hun. If you ever need to chat just message me take care. Julie x

  • Oh hun I feel for you and at such a young age :(

    I was 28 when I was diagnosed.

    Please try not to let it take over your life, I know it's Sooo hard.

    I'm a store manager so I have to literally drag myself in some days or the shop wouldn't open. Then for a member of staff to call in sick with a bloody COLD!!

    It makes me Sooo mad. We look healthy on the outside and the condition isn't widely known about. I've lost count of how many times I've tried to explain about it.

    I had a cyst removed in 2005, my first lap in 2008 and the second lap in 2012 so I'm due another one any time soon.

    My gyne explained that a lap isn't a cure and it can grow back anywgerr, if this is true I don't know. But I've got my next appointment to be looked at again on 20th April.

    You're not alone. I'm so glad I signed up to this forum, I have learnt loads about the disease and I thought I knew a lot already.

    Hope you feel better soon

    Jo XXX

  • Hi. I know this pain all too well. I hate to say this but the whole have a baby thing doesnt mean endo will be cured... Many posts on here state that it can b worse during and after pregnancy. My endo returned after my 1st lapo within 4months... Iv had my 2nd lapo 5weeks ago and the pain never went this time. I feel awful and need retur work monday and all i wana do is cry. Are you also diagnosed with adenmyosis... I believe my main pain is due to this.x

  • I don't want a baby so it "cures" my endo. I want one because I've always wanted children and waiting longer and longer scares me and makes me think I may not be able to conceive the longer I let the endo grow and spread. What is adenmyosis? :( x

  • Im not too good at explaining this.. so here is a site....http://m.adenomyosisadviceassociation.org/#/Adenomyosis.html

    Much better explanation. I feel same as you about having a baby and i hate that docs keep telling me to just as a cure which im aware aint true. I want one for wanting one and i also worry its going to be tooo hard to concieve the longer time goes.x

You may also like...