Should I push for another operation? - Endometriosis UK

Endometriosis UK

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Should I push for another operation?

nightkitten profile image
5 Replies

I had my second lap on 10th June. Before this I had intense shoulder pain but didn't tell my gyno as I didn't know about the possible connection to endo. Last week I had a very terrible period again (3.5 weeks after first Zoladex implant) and the shoulder pain returned too. My gyno says I most likely have endo on the diaphragm as I am very breathless too and get stitches when walking. But he says it will get better if I continue with the Zoladex? I would rather have a hysterectomy but my gyno says at 38 I am too young and we should try other options first. But even without a hysterectomy shouldn't the endo on the diaphragm be removed?

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nightkitten
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bonygirl1 profile image
bonygirl1

Not sure what to say to you except discuss all options with your consultant and family and look at the pros n cons of the different treatments they offer you. I wanted a hysterectomy and was told i'm too young, 37, and to explore other options first, i've now had two laps and in more pain than i started with. Good luck with what ever you decide to do X.

nightkitten profile image
nightkitten in reply tobonygirl1

May I ask what you are doing now? I've had two laps too, both within 15 months of each other, am now in more pain as you are and we now know I have endo on the diaphragm. They've put me on Zoladex but that has not worked so far :-(

bonygirl1 profile image
bonygirl1 in reply tonightkitten

I'm going back to see my consultant on the 30th Aug but he seems to have washed his hands with me as he has done the operation and as far as he is concerned everything went well, removing the endo. He has asked for me to be referred to the chronic pelvic pain clinic. I have the coil, but I've had that in for 4 years. I went to see a hypnotist 2 weeks ago, I can't say it's helped my pain that much but I do relax more after using the tapping technique. Also going to see a holistic therapist in a couple of weeks as I'm fed up and will try anything! I've cut out wheat and dairy, but only started this a week or so ago, no massive improvements yet but here's hoping! Take care X.

worth71 profile image
worth71

Make sure you do plenty of research before jumping into a hysterectomy, I have been recommended to have one for stage four endo, my ovaries are stuck together and to my bowel, bowel stuck to womb, womb to bladder etc etc, unless they remove every single bit of endo then you could still get the same pain for each bit of endo missed.

I am trying to postpone mine, not because I want to keep my womb, that they can take now (and I will have to reconsider if bleeding comes back bad, had an ablation during my lap so am hoping that helps bleeding situation) but I do not want my ovaries removed, I do not want to have instant menopause at 41, and also even after menopause ovaries still protect us against osteoporosis and heart disease, but by keeping ovaries then this could make the endo still cause pain and still cause it to spread. Since my lap four and a half months ago, I have tried to eat much healthier and drink lots of water, and I strongly believe that a healthy diet does help with the symptoms, as if I eat rubbish food....chocolate or take away or wheat/bran products then I suffer my pain big time.

Why don't you push for another lap to try to remove as much endo as they can? Xx

nightkitten profile image
nightkitten in reply toworth71

Thank you for your response. I think the operation to remove endo from the diaphragm is quite a complicated one anyway but maybe I should just push for this operation? I am constantly breathless, even walking for 5 minutes or doing housework is nearly impossible. And that is on good days where I am suffering no pain from the endo! I have noticed too that a healthy diet helps. McDonald's kills me!

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