(un)confirmed endometriosis (bowel related?) what to do ?!

Hi, I got a suggestion of endometriosis a few years ago in another country. I had long felt I had bowel problems and did 2 colonoscopies, MRI, and other blood tests which excluded inflammatory diseases and other conditions.

Because of the tiny size of nodules and the pervasive nature of endometriosis my gyn. doctor said is difficult to confirm this but the fact that I started taking Cerazette and it clearly stopped my pain crises testified the possibility. Once she examined me better and suggested it could be a deposit near Douglas Pouch so behind uterus and near to the rectum based on my pain area there.

recently, Another friend who treated in Belgium for this said that bowel-rectum endometriosis can be more pervasive than one thinks and I have had for the last half year bloating, cramping and wind episodes that I can't relate to anything (other medical tests excluded celiac disease etc). someone told me this might all relate to endometriosis.

I have left this matter a bit untouched because it was a rather traumatizing experience to have people calling me crazy about pain - doctors included because they didnt see any reason - and because this contraceptive minipill I take non-stop ceased my pain.

But now I realise I need to see a specialist and have this diagnosis confirmed as it might have spread or be in a total different condition, which was difficult so far due to moving between countries and having had little money to go to a private specialist...

I discovered today the GP might refer me to an endometriosis centre, is this right?, for e.g. UCLH, but I would like some advice then on how to proceed where to go, so I don't have to spend tons of money.

thanks for any kind of advice and help you can give me.

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  • Don't know if my circumstances can help. I have had IBS for 27yrs and got diagnosed with endo about 5yrs ago. I also have fibromyalgia. Last year I started having bother with my stomach and my bowels so I had like you lots of blood tests etc. The gastro doc said it was my IBS and my gyno doc said it was my endo. I even went to get intolerance tests as I was convinced it was something I was eating. The tests came back that I was intolerant to Fruit, dairy and pigs meat! I did cut them out but reintroduced them months ago. I am again starting to get a little bother. Bloating, wind, constipation, diarrhoea, feeling sickly etc. To be honest I am so confused about my body. Some days I can tell which illness is giving me grief but then there are days when I just guess. Hope this doesn't confuse you.

    xx

  • thanks AABB. I'm sorry to ear you also had fibromyalgia and so many complications. I confess that my levels of tiredness scare me a lot. Some days I will go to bed at 12 or 1 pm get up and be OK, others I will go to bed early sleep another 12 hours and still wake up feeling already exhausted. I should say that the fact IBS is stress related and the more symptoms you get the more pain and bad sleep you get, then you get more exhausted and weaker. so it's a complex snowball.the same happens with pain. to tell you the truth I tried gluten free diet, milk free diet and other things and the relations are too weak, so I am eating normally (did bought peppermint oil for crises and probiotics are helping apparently with it as well).

    for now I really want to address this endometriosis thing and having its current status confirmed in a more thoughtful fashion that before. I arranged for a consultation this Thursday morning with my GP and will ask for the specialist referral to an endometriosis centre if possible. I hope it all goes smoothly and I get a bit more answers to this quest of mine: is it bowels, endo, something else, or environmental problems? I dont exclude any other explanations...

    xxxx

  • We all just want answers eh. I went in for more laser treatment in feb but unfortunately it could not be done because the doc said it was too risky as I had it in sac of Douglas. that might explain a lot I suppose. Am waiting to go to my own GP to start more injections! Happy days. Let me know how you get on.

    xxxx

  • Getting refered to an endo centre means you have access not only to specialist endo surgeons but also colorectal surgeons who should know what they are doing with endo on and in the bowel, and also adhesions from endo which can constrict the bowel too. So that is definitely the way to go. There are benefits available for travelling long distances to see specialists, so check out the government benefits website for those needing medical care on a low budget.

    patient.co.uk/health/Help-w...

  • thanks Impatient this is helpful. I will see my GP this Thursday morning and request a referral. once I go through I'll leave some comment here on what I got, etc. thanks to all for supporting!

  • I developed endo symptoms and IBS symptoms in my teens and no-one put it together - my abdomen would swell up, I would have diarrhoea and spasms every time I ate, it was a nightmare.

    Your symptoms could definitely be caused by endo, and a specialist endo centre like the one at UCLH is definitely where you should go - I was treated there myself and they're very good.

    You shouldn't have to pay for any treatment, although I suppose this depends on your status in the UK?

    Take care

    x

  • I'm being treated at UCLH and it's brilliant, miles a part from my previous treatment with a general gynae x

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