No reprieve from pain after surgery =(

I had surgery and was diagnosed with Endometriosis in October, but have four weeks the pain came back and has been getting steadily worse. I was primarily diagnosed with stage 1, but having been rushed to hospital yesterday because I couldn't walk, the doctors think it's spread to my bladder and said it may have grown deeper, hence the crippling pain, and no longer be stage 1. Obviously, it's all theories and assumptions without having a look inside, but it's just left me feeling exhausted and upset.

I'm 22, trying to do a part-time masters and keep a job despite having to take sick-days when the pain is unbearable, and yet now I'm being told that if the pain is this severe, all over my stomach, back and down my legs, I shouldn't probably have surgery again to check my tubes are okay.

Tubes! I didn't even want to start trying for kids until I'm 28, and now I feel a timer ticking in the back of my mind; an invisible pressure on my shoulders silently telling me I need to start trying to kids ASAP before it is too late. It's ridiculous.

So, I'm just wondering if anyone out there as waited more than three years after diagnosis with stage 1 or 2, and still been able to have kids despite the doctors saying you only have a limited time yet to have them?

Thanks and sorry for the long rant!

5 Replies

  • Hi

    I have only recently been diagnosed, I am 39. I had years of problems though and in many ways I am grateful that I only now know the reason! I had three babies, my youngest is seven. It was only diagnosed when I developed endometriomas, which is a sign that you have reached stage 3/4. I am sure that having the worry of not being able to conceive can only make matters worse.

    I am grateful that I didn't leave it until my 30s to start trying, things could have been a whole lot different.... good luck. X

  • Marie9 when were you diagnosed? What were your symptoms please I too am 39 not been diagnosed with anything as yet ultrasound tomorrow. X

  • Hi!

    I have had symptoms since my early teens, just assumed it was how things were meant to be! I remember my parents having to collect me on my first day at sixth form college.... horrendous pain, sweats, feeling that I might pass out. It all went away when I had my babies (2003 - 2007) but returned in 2010. I also then developed mid cycle bleeding and pain. My GP said that he thought I had endo but two ultrasounds in two hospitals showed nothing. I was diagnosed with stress related IBS (I'm a teacher!) and cervical erosion. Then in October last year I was rushed in an ambulance to A&E. Pain worse than child birth, low BP etc. An ultrasound revealed endometriomas, one had burst. Unless you have a very skilled radiographer, endo cannot be detected on an ultrasound. Endometriomas do show up however. I have now found that it is on my bowel, my ovaries are stuck to my uterus and my uterus to my bowel and it is the on/in my recto vaginal septum (basically stage 4)!

    Your ultrasound may well look clear tomorrow. Ask for a detailed MRI, I had three last month and only the last one had answers. People mention endo specialists and specialist centres on here. But you have to be referred by an ordinary gynae consultant first. It could take some time!!! Good luck. X

  • Sorry, diagnosed at the end of January this year! X

  • Hello Jessica-Mae I was diagnosed late last year and I do have been trying for a baby and no luck as of yet but I do have a 4 year old as well xx I am in the same way as u terrible pain can't move sometimes it makes me sick so fingers crossed we should be fine !! X

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