Where do I go from here!

Hi new here and have just been reading the forums for a while now, I've had two laps first one no diagnosis on the second one I was diagnosed. Had troubles with heavy painfull periods as far back as I can remember and the pain was at a point I couldn't get myself out of bad on a bad day. After years of endless doctors appointments and being told it was just a heavy period and my pain freshold was non exsistent so on and so forth was finally referred to a specialist and I was diagnosed. In my first lap I had a dermoid cysts and adhesions removed without a diagnosis and in my second lap which was in august of this year they removed adhesions and a endo cyst. Since my surgery iv had a lot of pain going to the the toilet as I did previous to surgery and there is blood present sometimes I get a lot of lower back pain and always feeling tired and just doing the normal tidying and taking my boy to school and doing dinner seems a task as I just want to sleep and I am feeling exceptionally low and don't know what to do and even though my gynae specialist hasn't discharged me I just feel like I am getting no help or support I do have a endo specialist nurse and she has offered great support, but thinks my problems are more to do with my bowels and has referred me to a gastro specialist which I am awaiting an appointment for. I can't help thinking though if my pain and symptoms aren't endo related, that my pain would be different to the pains I suffered before surgery but they are exactly the same and although surgery has helped and I don't get pain all month long its started to come back the week before my cycle and lingers at least a week after. I also get fluey like symptoms at the end of my cycle. So any advice or support would be greatfully received is what I am going through endo related and if so what should I do about it? Thanks for reading sorry if I have rambled not having a good day

6 Replies

  • Hazey301, when they removed the cyst did they find endo anywhere else? I ask because endo can get everywhere, with my first lap to remove a cyst it was causing pressure on my bladder, in fact the fact that I was constantly needing to wee and having troubles going was what alerted my GP to the issue that something else was going on. With my second op it would seem that the endo got to my appendix which had to be removed and had also stuck my tubes down and also possibly got onto my intestine. Currently in a similar place to you with various digestive issues. I seem to alternate between constipation and horrible pain when I try and go (I'm taking something to soften things up a bit which you can buy in the chemist), or the other end of the spectrum, I also feel sick some days and more recently after a couple of days of poor appetite have had chronic heart-burn even though I hadn't really eaten much at all.

    The point I am trying to make is that endo has a massive effect in some people on our digestive function because of where it can spread to. It can feel a bit like IBS and can be diagnosed as that sometimes. Reproductive organs and digestive organs are so tightly packed in there for us girls that things can get a but tangled up. It's a shame some health practitioners don't seem to understand the connection. I try and educate myself as I go, I had no idea for example until recently how near the right ovary your appendix is, or what it is attached to. We just hope that our bodies work don't we.

    Best wishes, I hope my message has helped but I think you need to push the consultant who did your lap to let you know exactly what was in there, even a few small spots can cause trouble as I have had this ever since my initial diagnosis.

  • Thanks for your reply, they did find other endo and apparently removed it but while operating my bowel got cut by mistake so had to change to open surgery and since my opp its like he is reluctant to even think the endo has come back but just onfussed as to why I still have the symptoms if the endo isn't present if that makes sense newly diagnosed and don't have a clue.

  • From what I've been told and read, no one person is alike. It may be you are still healing? 90 days I was told. It may be you have spots or a bigger area of endo in one place. This is what I think I have as the pain I get is very close to the site of the appendix. My GP agrees this may be possible. My gynae is pretty useless so I'm going to try to conceive for a few more months and then go and get another opinion and then start to think about what other options I have in a bit more detail. I don't want ivf but I know he'd love children. So I have to consider that as well.

    I have found reading around the topic to help improve my own knowledge and then when you see a dr write a list of questions and write down/record answers. I took a friend once with me as I got myself into such a state about it.

    I'll try and answer from what I've found out and I'm sure others will answer you too. Best of luck there are thousands of us with this horrible thing and it isn't fair. X

  • Thanks for your reply again just want to be free of pain and tiredness feel llike its a never ending battle as for the baby front iv been trying for twelve years with no luck and after my recent diagnosis I have finally been referred to a ivf specialist and will just have to see how that goes my appointment is on the 21st of this month but it kind of gets me down its a constant struggle and people rarely understand or recognise it im thankfull I found this site and thanks for your advice.

  • Good luck with your appointment. I hope we both have positive outcomes.

  • Good luck to you to hun hope it all works out for you and thanks x

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