What stage is my end?

Hi Ladies.....I'm reading on here a lot about different stages of endo and just realised this was not mentioned when i had my consultation. I am waiting on a date for surgery and have been told my tubes are facing inwards and fused to my womb. That one of my tubes is distended and swollen and that will likely need to be removed following the dye test. She said if its blocked then they should remove but that I can still get pregnant with one tube . She also said that my womb is stuck to my bowel but that they are going to leave this alone as i do not have any problems with my bowel. I am 40 and are desperate to have kids, just haven't found the right person to have them with yet! I'm hoping children will still be possible (slim chance i know with my age). I'm also worried about recovery as i have a very physical job and as such i have been warned that i can't exercise or do anything physical really for 6 weeks. My consultant has also warned me that my surgery might not happen until March (last consultation was the start of Dec) as she needs to coordinate her diary with the specialist surgeon required to do this procedure. I assumed you are in and out in a day or two but she has said i will be in hospital for 3-4 days (does that suggest i have stage 4 and what does that even mean?) Its reassuring to know (having checked this surgeon out) that he is the best in the country to do my op but I still can't help worrying......any thoughts, advice or insights into my situation would be much appreciated. thanks

13 Replies

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  • Have you been told you definitely have endometriosis? The first op I had I went back to work after a week but having a job on my feet all day it wasn't enough time off so you need st least 2 weeks. If they do something invasive you will need more time. I have stage 4 but they didn't know until I had my laposcapy but they done nothing for me as I needed a major op. I hope this helps

  • Thanks for your reply, really appreciate you sharing your experience too. I'll update after my surgery when i know more...

  • hello yes you have stage 4 endo as that is what I am and you have pretty much same thing as me. I also have a very physical job and i have been signed off since april 2016 and i have my pre op on 6th jan 2017. i been told i will not be able to return to my normal.job for 2 possibly 3 months after op as i am on zoladex and its making my bones weak and muscle loss.

  • Thanks for your reply. I really do feel like a fraud on here sometimes as it doesn't seem to impact on my life in such a detrimental and painful way as it does for others (sorry!) I came off the pill about 5 years ago and just assumed my period pain (and that was the only symptom at that stage) although horrific was just normal from what i could remember from my teenage years. However it was only due to abnormal bleeding and pain that left me doubled over and unable to work (on only 2 days of my period each month plus persistent back ache).... that led me to the doctor. After a series of very scary fast track scans, MRI's and consultations for suspected ovarian cancer, I have now been diagnosed by the EXPPECT team in Edinburgh and placed on a waiting list for surgery. I'm so sorry you have had such a long time off work that must be hard. My situation is that if I don't work I don't get paid as i freelance and I have been home (I work abroad) and not working since July already. As its so physical I won't be taking any chances with my recovery but just hope its fast as I am running out of savings and really miss my work. I suppose the worry, wait and surgery is a small price to pay for my health and the chance of hopefully having kids. I hope your op goes well and wish you a good recovery too.

  • you can get medically signed off by doctors and claim esa if needed i miss working too. dont panic too much as i was told it could be cancer too but turned out to be cysts. keep me posted on how it all goes for you. just remember you are not alone and keep thinking happy thoughts and try keep active when possible. and thank you.

  • level of pain or any symptoms DOES NOT indicate that you are this same level like other women. women with stage 2 can have more pain then women stage 4, however usually the case is more symptoms higher stage....but keep in your mind you can be the small procent where thats not the case.

    i self diagnoses myself waaaaay before doctors even consider i have endo. i suggested to them.

    i had my diagnosis lapo and ovary removed in sep and lapo confirmed i have sever endo stage 4. full excision will happen in january (removal of endo tissue). it took my a month to come back almost to normal after first lapo. i imagine recovery after my surgery in january will be way much longer.

    you worry about time of work etc BUT i wouldnt if i was you. the most important is your health and focus on that my lovely, on getting better.

    xx

  • Thanks so much for your reply....not sure if you can see the other response I wrote but your right, the most important thing is my health. Good luck to you too xx

  • endo-resolved.com

    look into this website. to me its great! you may also find interesting.

    xxx

  • I dont have a grade yet but it's nowhere as bad as yours, more mild to moderate in a few places with one big tricky nodule . Neither do I have a particularly physical job. I had a lap and ovary ungluing from my pelvic wall and have had too much pain and fatigue to go back to work after the first fortnight sick note so got a second so will have in total been signed off for 4 weeks. That takes me to a holiday previously booked so it will have been not far off 6 weeks before I go back now. Don't underestimate the post op fatigue.

  • Thanks for your reply...its good to hear other points of view and experiences. Good luck with your recovery, hope it doesn't go on for too much longer..

  • Thanks Weec, the sudden narcolepsy sleep all day reactions seem to be less frequent now so fingers crossed.

  • There is various systems grade the endometriosis. Yours sound rather severe. If you are staying at hospital for 3-4 nights. It is likely you will need 4-6 weeks off. I had extensive surgery with gynaecologist, urologist, and bowel surgeon. I stayed for 3 nights and had 4 weeks off. I then did half days for 2 weeks. I have a semi physical work and found the first few weeks back slightly hard work. I didn't experience much pain before or post operation.

    It is best take enough time off and recover well than rushing back.

    Good luck with your operation.

  • Thanks so much for your reply. I totally agree on not rushing back although I'm worried about the financial implications of that...I can't risk delaying my return to work by pushing myself too far though so I will make sure I do take the time....thanks

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