Struggling to cope

I really don't know if I can keep going any more. It's not so much that I'm in pain but I can't physically get through the day , I can't think, can't function, hubby bought me the most wonderful rose bouquet but we are both like zombies and he won't touch me anyway as since op marital relationship are agonising when before it was uncomfortable but livable. I took a new role the week of my diagnosis and am being sent to London all the time, far more than expected and it's crazily demanding. I've no sick leave left and an unapproachable manager. The surgeon wants another op but I can't believe it will make any difference to the exhaustion as whatever caused the lump will still be causing it and I fear like the first op I'll go out worse than I go in. I think I have lost the will and all hope of any sort of normal life. I feel like I am hanging on by a thread.

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  • Sounds like you've got such a lot on your plate at the moment. It all sounds exhausting both physically and emotionally. It took me much longer to heal after my op than i expected but i did get there in the end. It's difficult contemplating doing it all again but maybe having more information about how it will benefit you would be helpful with this? Is there anyine you can talk to or get some more support with this in relation to your work? An understanding GP or someone at work you trust? Please dont feel you have to cope alone. Sending big hugs to you Xx

  • How long did it take in the end for you and what did you have done? The op done so far was diagnostic and a small cyst removal so comparatively simple.

  • I had a diagnostic laparoscopy with some tissue removed from by bowel and rectum etc. The surgeon said he found endometriosis throughout my pelvic cavity but was only able to remove some due to risk of damage to my bowel and that I will need more extensive and risky surgery as a next step. I'm currently undergoing IVF due to fertility issues caused by the endometriosis so I've put more surgery on hold for the moment. I was very emotionally fragile after the surgery I cried everyday for around 3 weeks and my partner was really worried about me. Physically, I only did very gentle exercise for around 3 weeks until I went back to work and then began to increase gradually. But even after going back to work after 3 weeks off I felt like I had been through a lot and it took me time to get back to how things were. You have been through a lot, I think we can underestimate what these procedures however minor can take out of us and you need to give yourself a chance to heal but equally if things are just not getting back to normal for you then keeping in touch with your GP is essential. How are things going for you now? Did you get your thyroid results back? How is your mood?

    Moogs : )

  • Darling, you need to try visanne. It is dyenogest, which you can find on other names of pills. Believe me it's worth it. I still have pains from time to time, but they are more if it's cold outside or I forget to take the pill for a day or I am very tired or stressed. Otherwise, it really helps. I hate to hear people in pain, because having endo, I know ehat real pain is. Visanne is not available in UK but you can find the substance, Dyenogest, in other forms. Take care!

  • I had a mirena inserted in my op which also uses progestin though a different specific one. Levanestrol I think.

  • This disease can be very tough on our mental health, not just the disease itself, but the treatments as well. Please see your GP and ask for help if things are getting really bad.

  • I did go the GP, they'd sent me a letter to go in anyway. They are testing my thyroid finally. But the GP said she thinks the exhaustion is depression which I'm not sure I agree with though I am unsurprised at being diagnosed with depression as I have history. Off to try st John's wort initially, pharma ADs have a history of disagreeing with me violently.

  • Hi. I am with you on this. I feel this way everyday. I completely relate with the intimacy issue. My husband and I haven't touched each other in weeks. I cry about it all the time. We've been together 16 years and it has only been the last couple years(after I had my surgery) he really fully understands it. When they explained everything they did and what it affects it really hit him. But I still feel this is so unfair! We are both only 33 years old! There isn't a day that goes by I don't wonder when this pain will end. And then I feel pathetic because I shouldn't be wallowing in self pity. I just tell myself don't give up!! I have to keep fighting for my children and husband and myself.

  • I feel exactly the same every day :( so hard to keep going every day being in so much pain.

  • Big hugs x x somehow we hang on for the loved ones on our life I guess. X x x x

  • Thanks guys. One last attempt at intercourse and we have given up...

    I saw the surgeon the other day and had toughest consult yet about surgery option one vs two and it finally sank in for hubby. Poor thing is struggling.

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