Feeling depressed!!

Hi all, I really just need to rant! Ive had a laparoscopy and been given the injection to help with pain but nothing seems to have made a difference! I have been in daily pain for 8 months now and I don't see an end to it :( the pain seems to get worse when I go to the toilet although they said I don't have endo on my bladder so im a bit confused as to why I feel so uncomfortable when urinating! I don't want to live the rest of my life like this being in pain every single day. The pain doesn't even seem related to my periods it doesn't get worse when I have a period it's the same feeling every day. I'm beginning to wonder if this pain is even caused by the endo as my gynaecologist seems confused why neither the surgery or the injection has made a difference to my pain :( xx

7 Replies

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  • Hi - if you have been treated so far by a general gynaecologist I'm afraid the reality is that they are unlikely to have removed all the endo that was there. Have a look at my post on endo and its symptoms to see how you relate to them and how to locate a specialist in the condition. The injections are only effective sometimes in minimal endo and can only be taken for 6 months anyway due to the side effects. The fact that you got no relief shouldn't indicate confusion but that yours is more than minimal. You need to be seen by a specialist in the condition so try and take courage and take charge. The means are now available to help you. xx

  • Hi, sorry nothing seams to work, if you don't mind answering some questions,

    did you have your endo excised or lasered,???

    Where did they find it???

    Did you have any adhesions, ??

    If you give more info there are some very informative ladies on here,

    Good luck xxx

  • Thank you I will have a look into seeing a specialist. Do I need to go through my gp for this? .. They said I have it on my pouch of Douglas and left uterosacal. As far as I know it was lasered. He seemed to think it was mild but I'm not so sure as there must be a reason im still in so much pain. I'm constantly crying and struggling to work :( I never realised how much this was going to affect my life. I was completely fine 8 months ago without any pain and I never even had pain with my periods. Thank you for your support im just feeling very sorry for myself and i don't know anyone personally who is going through this so its hard to explain to people why im so miserable and in pain all the time xx

  • That's when my pain started constantly, before that had pains here and there and painfull periods 21/24 day cycle ive to my lap 21st

    Check with you consultant if he lasered it, really it should have been excised cut out as this cuts from root, not only from surface like lasering, most docs use excision treatment now, so then it dosnt grow back in that same place, how long ago was your lap ?.

    Xxx

  • Hi

    To me it sounds as though your pain is related to your bladder but not endo. Intersitital cystitis which isn't the same as the bacterial type is referred to as the evil twin of endometriosis as the two are frequently found together. I have endo, adeno and intersitital cystitis although the pain caused by the gynae conditions is very different and I can easily recognise the difference. It is often overlook by gynaes and patients too often are told that they must still have endo present when the endo may not have caused any pain to begin with (endo doesn't always cause pain). I think rather than trying to find a specialist your next stop should be a urologist Unfortunately my interstital cystitis is refractory to treatment despite trying all the medical treatments available and looked after by a fantastic team of urologists at a London hospital it is now looking as though I will need reconstructive surgery on the bladder. Both my endo and adeno are well controlled including the pain by zoladex which was the last treatment available after trying everything including combination of treatments by an endo specialist who I'm still under.

    Most IC sufferers respond well to treatment and some just need diet modification rather than medication but it's definitely something you should look into rather than suffering

    Hth x

  • Thank you all! My last lap was a month and a half ago. I went back to see my gynaecologist and he said I shouldn't still be getting similar pains.. Alaine, do you mind me asking how ur interstitial cystitis was diagnosed as ive had a cystoscopy and seen a urologist, they said my cystoscopy was clear and I would have blood spots if I had interstitial cystitis. Ive been eating a lot of fruit lately as ive cut or dairy, wheat and gluten and stuffling to find stuff to eat. Maybe it is aggravating my bladder! Urologist diagnosed me with overactive bladder although that seems to have been the only thing that had calmed down since the op im not going to the toilet as often as before so I'm guessing his diagnosis was wrong! Along with also being diagnosed with ibs whih too seems to have sorted itself out! Feels like the doctors don't know what's wrong with me and are diagnosing me with anything to get me to shut up cx

  • Hi

    Sorry for the long delay in replying! Whilst spots of blood can be seen during a cystoscope it isn't necessary for a diagnosis of IC. My first one didn't show these but I had all the classic symptoms so was given the diagnosis. The second cystoscope showed severe bleeding and my bladder was covered in them. You could have bladder pain syndrome which is virtually the same as IC but is given when you don't meet the full criteria for it to be diagnosed but the treatments are the same. You may find all you need to do is alter you diet for the pain to improve which you'd need to stick to so it might not be endo at all and is a common mistake when endo is removed many doctors don't look for other causes of pelvic pain so the patient never gets properly treated and continues to suffer

    I see a dietician privately every 5 weeks to help with the IC and also endo and adeno and is extremely useful. Also women's physio has helped enormously as all these conditions have caused painful bands of tissue to form which is treated in a variety of ways including trigger point therapy. Again I go private as locally the nhs is useless and I can't be seen at the London hospital where I'm treated as my GP is local. Plus going private in London means I can ensure I'm seen by someone is very qualified and without limit to the number of treatments the nhs will pay for. The physio also gets refers from my own gynaecologist for her private patients which has worked out well. With all of these conditions you need to do a lot of homework and be prepared to do things yourself to benefit as well as medical/surgical treatments to get the full benefit. These don't have to be hugely expensive and the physio in central London is very reasonably priced. Hope that helps and good luck 😊

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