Endo has me down....again!

This is so frustrating! I was free from pain for a mere week and now......it's baaaack! I have to wait another three months or so before I get surgery. I'm trying to stay positive but this pain is so draining. I have umbilical endometriosis and diaphragmatic endometriosis. It is also on my ovaries and who knows where else. I had to cancel plans for this weekend and call out of work. I feel so unreliable and silly. Everyone is nice but I feel bad about it. I know some or most don't understand.

4 Replies

  • It is hard cancelling or changing plans...people say they understand but I'm not sure they really do half the time.

    I know exactly how you feel and Fancy going?? XxI have umbilical endo too and had a lap nearly two weeks ago, at the same time as having my 'nodule' removed. Have you had you had yours removed and does it come back?!?

    Sorry to hear your feeling bad

  • Hi Purplecupcake!

    I've only had a biopsy done on it for the diagnosis. I still have to have the excision surgery. I don't know if it will grow back but the part the cut off on me is still the same spot I bleed from. From what I've read, the whole umbilicas has to be removed. Those people have not had recurrence.

    I have to wait until August for the surgery. So another 3 periods to go like this! Im counting down!

    Yes, people say they understand but I don't believe they do. I feel like they think im sickly. Besides this, I hardly ever get sick. I don't remember the last time I was sick. But...., low and behold, I can tell you the last time I had this pain...

    Really looming forward to this surgery.

    How have you felt during your cycle since your surgery? Does you belly button still hurt?

  • I only had it done just less than two weeks ago but so far my belly button has been a lot less painful than it was...apart from the wound healing. I'm a bit worried about what it's going to look like though...I still have the dressings on but it looks a lot bigger at the moment!! Although I'm sure I can put up with that if it means I don't get the pain and bleeding there anymore! I'm not sure if they removed the whole umbilicus or not...another question to add to the list for my post op appointment!! Still having really bad stabbing pains lower down....even though I was told the surgery was extensive and they removed a lot of endometriosis all over. I haven't had a pain free day yet...still waiting and hoping it might happen one day :( I know what you mean about counting down the periods until the op...I was too and then after my pre op assessment I was told they might have to cancel or postpone my op as I had high blood pressure. I burst into tears and said I couldn't cope with another period! Even though it's not the most fun I could imagine I was really looking forward to my op too.

    At least you've had your biopsy

    done already....they did mine after they removed it and I had no reason for why my belly button was so painful and bleeding....another thing people REALLY didn't get. Someone once asked me if I had to put a tampon in my belly button!

    Are you having a lap done at the same time? Good luck with your belly button in the meantime. The surgeon told me I was very special to have it in my belly button so I'm glad I'm not alone! Heat pads and hot baths are what I'd recommend!

  • Well I hope in the long run, you find relief. It sounds like you went through a lot to get yonthis point and I can understand the struggle. When I went to the emergency room back in March when I was bleeding, no one had seen it before and asked if I had a belly ring that pulled out, if I had bumped into something, if picked at a scab...etc.. But, I guess it is so rare that they dont know what to ask.

    I believe I will be having a lap as well. At least I will request to if the surgeon does not mention it during my next DR appointment.

    Today feel surprisingly better than I thought I would. I still did not go in to work because I'm still in pain and feel extremely weak. I am a Licensed Massage Therapist, so my work is very physical. I was supposed to work 6 hrs straight doing massage.

    I really hope everything goes smoothly with surgery so I can get on with my life! But I did realize today that while I feel unreliable, it is not ME who is unreliable. It is this disease that is unpredictable. Thinking that way helps me feel Better.

    In the meantime, hot water bottles and hot showers will be it until I can figure a better way. Feel better, purplecupcake!

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