Alternative problem to Endo?

Hi all,

I've just come back from my second laparoscopy, and have been told that the treatment for my endo is going well and that there is less than before. I now have to go back to my consultant to see what the problem is now. My symptoms include:

Severe period pains

IBS

Blood in stools almost daily

Constipation / diarrhea

Bloating and a rock hard stomach

Mood swings and occasional depression

Pain in hips, groin and all the way down legs

Just wondering if any ladies have these same symptoms, and if so, if you have been told it is something other than endo?

Thanks

xx

13 Replies

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  • No that's endo. Sorry x

  • Well, this is what I thought, but according my consultant, this isn't the only thing going on, but she doesn't know the actual problem at the moment :( xx

  • Hiya Ali, Is your consultant a normal gynae or an endometriosis specialist at an accredited endo centre? X

  • I believe she is just a gynae, and I think this is the problem, I have yet to actually see a proper endo specialist, which does concern me : \ x

  • bsge.org.uk look up your local accredited centre and ask to be referred (or aspiring endo centre if you couldn't get a nearby accredited one). If you suspect endo to do with your bowel you could individually research each specialist to know which are more skilled with bowel endo than others. I am not sure if you are able to specifically ask to be referred to a particular surgeon on the NHS or if you can only ask to be referred to a particular endo centre. I researched all the specific surgeons in my local-ish area and found one who was very skilled in the type of endo they think I have. I am now seeing him privately. I genuinely would encourage you to research reseach research and get youreslf to a specialist. Good luck xx

  • Thank you very much for that advice, I shall definitely look into it and have a word with my consultant when I go back in the next few weeks. I really think it's time to be seen by a specific endo specialist, as I still don't feel I've had the right help with all my problems, and I'm starting to feel very down about it. This site has been a massive help though, and all this advice is so welcome and useful. Thanks xx

  • I cannot think of anything else that gives symptoms the same as endo. In my experience these doctors don't seem to know what they are talking about esp when it comes to endo. They seem to guess as they go along. Endo does give a lot of 'knock on' effects but it all boils down to endo. Even one tiny spot of it causes umpteen symptoms. Honestly you would think they know that by now, but they never cease to amaze me the cr.p they come out with. Plus we know our ow bodies, unlike them x

  • There is a chance this could be adenomyosis - some theories state that although we know for certain that adenomyiosis /adeno - is like endo but grows only in the muscle wall of the uterus - there are thoughts that the same cells may also be able to grow in the muscle wall of the bowel. If that proves correct -then bowel endo could be either endo or adeno.

    at any rate - the treatment options would be the same

    Surgical excision by endo specialist colorectal surgeon and also hormones to stop periods.

    It is highly likely that you can have both endo and digestive problems which cause IBS. It need not be directly linked to endo - in that surgery for endo may not relieve the digestive issues. But by altering your diet to identify the foods AND drinks that make your symptoms worse and cutting them out of your diet will certainly help calm things down.

    Keeping diary of what you eat and drink and what the reaction is afterwards will give you clues to what to avoid in the future. Cut them from the diet - then perhaps reintroduce them few weeks later and see what the reaction is. This way you can confirm your suspicions and avoid those trigger foods completely in the future.

    Th endo diet or coeliac diet are usually good starting points - to figure out what suits you best and stick with the safe foods and drinks.

  • You can read up on Adenomyisis might be worth it. I have endo & adeno the symptoms are so similar.

  • Woops yes forgot to add the link -here it is

    adenomyosisadviceassociatio...

    Thanks for reminding me Clem

  • I feel your pain.. I have been told I have ibs too and am taking lactose 3 times daily to help with severe constipation and diarrhea it helps pull water into the bowel and can be bought over counter at pharmacy. Additionaly impatient mentioned diet, may be worth seeing if that helps as I find gastro symptoms really up my pain, so although above provides small relief may help you a bit too.. also for leg/groin pain I have found a bath with dead sea salt (u can get in Holland and Barrett) sometimes helps taking away the aches.. good luck xx

  • Thanks for all the advice ladies. I remember adenomyosis being mentioned before on this site, and I though that what others were saying did sound awfully similar to my own experiences. I have another appointment with my consultant after I've recovered from this last laparoscopy, so I think it might well be worth bringing this up and seeing what she says.

    I already do a gluten-free diet, as I found it helped with my IBS about 4 years ago, and haven't looked back since. I still get severe bloating though, and most days I look about 5 months pregnant, it's getting quite embarrassing now. I don't know ladies, I had hoped this latest laparoscopy would provide me with some conclusive answers and I could get to some kind of recovery, but now it feels like I've been put back to square 1 and have to start all over again to find some answers : ( xx

  • You should defo push to speak to an endo specialist as I had to do this and I am still waiting for my date, i have been dealing with a general gny who has no idea of endo really and has given me 2 laps that he can tell me nothing about.

    I however agree with the girls below, adenomyiosis seems a reasonable assumption, this is what I now want to talk to the consultant about as I have all your symptoms and I have also been gluten free which makes me feel good but doesn't get rid of the bloating sadly :(.

    Keep fighting for the right person and who you really want to see. It is mental battle to keep positive but once you have the right doctor hopefully things should start to look up as someone is finally listening (or this is what I tell myself!).

    Good luck :)

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