Feeling completely defeated

Sorry to be a moaner, but feeling totally defeated by my symptoms. I had my diagnosis for endo in October after years of pain. I was hoping after my op that some of my symptoms would have improved but they haven't really. My periods aren't as painful, but other than that the fatigue and abdominal aches are there on a daily basis still. It's affecting my job, my education and my confidence. I've only just plucked up the courage to try having intercourse again and that's not improved at all pain wise! I was in pure agony and burst into tears, my boyfriend deserves better than I can offer him! I just don't know what to do anymore, its taking over my entire life. Completely gutted at the mo :(

6 Replies

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  • I am so very sorry! I know how that feels. Have they recommended any other treatment options yet?

  • I'm in a similar boat to you! Intercourse really hurts me, my boyfriend and I couldn't have it for 7 months, but luckily he was really understanding and supported me. Have you tried some stronger pain killers, possibly the endo diet, apparently that works? Chin up!

  • These lap ops do not address sex pains - if you had painful sex before - it will be just the same after. Sex pain comes from either a misaligned cervix, or adhesions either inside outside or on both sides of the vaginal walls and or cervix . These are not normally removed in a diagnostic lap and removal of surface endo. You would need to speak to your gynae about what could possibly done to relieve sex pain - but for most ladies its a case of not bothering with regular penetrative sex - and finding other ways to be intimate - or take pain killers before business.

    The fatigue caused by endo does not get better with time - or surgery. Sadly that is probably down a wrecked immune system strugging to cope with every bug thrown at it and healing and battling endo. I haven't read of anyone recovering from the chronic fatigue by having surgery - if anything it can make that even worse.

    The surgery is to try and stop any endo patches from getting deeper in to organs and to free up organs that are stuck out of place by large strands of adhesions. And in that respect any surgical removal is a help in the longer term for endo, but adhesions being cut back is a temporary state of affairs as they do regrow with each surgery encouraging more of them. It's a down side to any surgery, not just endo ops - the main aim though is to stop the endo from causing more pain and damage in the future - but it dosn't always solve any damage done in the past. It is though still only 3 months since your op. You do need to give your body a lot longer than that to be properly healed and know what life post op is like.

    I wasn't free of all surgery pains till pushing 5 months. That was nearly 3 years ago - and I am still exhausted all the time. Nothing I have tried -seems to make the exhaustion side of things better. Not exercise (makes it worse) , I eat very healthily endo diet based foods for the most part, don't drink anything except for water and yet I am zonked out so much of the time.

    It really is a case of being forced to know your limits and adapting to living a life within those limits. Certainly not easy in so many ways - but you do ned to accept there are limitations on the quality of life you lead when you have a chronic condition and take whatever steps you can to not make things worse for yourself in the longer term. It isn't fair, it isn't easy and that's why this wretched endo is such a big problem for so many of us.

    We know we ought to be able to do so much more and want to be able to do so much more than our bodies allow us to do.

  • Reading your post was so interesting (well, they are always interesting, of course) anyway, I have known ever since my periods first started that for several days before I get swollen glands, sore throat, ear ache etc and naturally I assumed all women did, but reading your post made me question that... It makes total sense that my immune system just can't cope and that's why I get ill.

  • Pain during penetrative sex can be alleviated during a lap if surface endo is removed from an area such as the pouch of douglas for example. I have benefited from this some years ago. There are other life improving treatment options available for alot of endo ladies that do not include hormone injections, lap after lap and finally a hysterctomy. I have undergone a total peritoneal excision and ventrosuspension. My quality of life has dramatically improved and although recovery is slow, im finally getting my life back. The horrendous pain has gone, fatigue dissapearing and sex is pain free. I had my op 6 months ago. I really feel that us endo ladies are kept in the dark by some health care professionals due to their archaic attitudes towards our condition. I understand that sadly the procedure I have undergone will not help everyone. However, I do feel that none of us should have to suffer and adapt our lives around endo - it should be the other way around. The more women ask for alternative treatments the more chance we have of helping future endo sufferers receive better treatment on the nhs.

    Rant over.

  • Hi ladies,

    Thanks for all your kind words and informative responses. I am currently on a waiting list to see a psycosexual therapist and have been given dialators to 'train my mind into not expecting pain' when trying penetration. I was offered back to back contraceptive pill as a way of preventing the disease from developing further. I was told I probably have developed a phycological condition called vaginismus as a result of the pain from endo, which my gynaecologist told me post op that the physical pain should have been resolved, therefore leaving me with the psychological side to deal with.

    I hope that this is the case, I'm only 28 and I'm not ready to give up on that part of intimacy yet. I think this is the part of the condition that I'm finding the most difficult to accept. I want to have children in the future, so it's not really an option to give up just yet. Anyway, I appreciate and take on board all your advice, and thank you for taking the time to respond and hope your all feeling as well as can be with this horrible condition xx

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