Feeling low

Hi Everyone,

Thought it best to post on here as I'm sure you will understand.

I'm due a laparoscopy on the 20th May, as the consultant suspects I have endo and adeno (the latter due to my lumpy womb that he discovered on an internal exam on the 1st April). Since the appt with him and the internal, where I discovered that the internal reall hurt and gave me another added symptom, I have found that I am having more pain in my stomach, and public area. I am also finding that I have more of a feeling that I need to see more, but I can last for more than an hour before I really have to go. I have also found that shoulder and right arm pain is increased (wonder if this is due to taking my pill without a break this month as we were on holiday).

I have this along with the usual pelvic pain, lower back pain, pain down my legs, in my hips, and maybe even more palpitations. I am so used to some of my symptoms now they just seem normal. So the hot water bottle has been out in force and I've even taken co-codomal (after years living with IBS and spd whilst pregnant, I have a high pain threshold I think).

Just feeling really low about it all and hope that it endo and that they can remove as much as possible. Not really sure where the endo could be, but due to my symptoms in lots of places I feel. I'm going to make a list to take with me to my laparoscopy, so I can task to the dr about areas to look at whilst they are doing the lap.

I'm off to see my chiropractor tomorrow, so in some ways I hoped my back/pelvis/shoulders are out of line, as at least then she can correct it and I should get some pain relief. Although as she said at my last appt 3 months ago, she doesn't know what I'm in so much pain and suffering so much when my back etc isn't that bad. My dust allergy seems to be acting up, so am wondering if I am getting the start of hay fever on top too. Prescription antihistamines and nasal spray aren't enough by looks of it, so will have to order some of my homeopathic stuff which helped last year. Not sure if the allergies acting up could be affecting the endo?

I have advised my husband that I could well need help for a week after the lap, and maybe more it just depends on what they do. As no one really appreciates how much I put up with each day and for so long now, I am going to make sure when I have the lap that I really do take it easy and get lots of help.

I also seem to have lots of wind issues and even diarrhoea, which although I've had IBS for 20+ years seems to be bad at the moment, along eight the bloating. (Consultant mentioned bloating but as I have been dealing with this since my teens due to IBS i don't really take any notice normally). I do have an intolerance to wheat, which I am going to cut right down on again, but I can't say that I've been eating more than normal recently. Not sure if this is just the IBS or another flare up of endo symptoms.

I really do hope that the lap shows up endo and adeno as then at least all my pains and symptoMs are due to something.

Anyway thanks for reading my essay of a moan!

Lisa x

9 Replies

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  • Hi.

    I'm sorry that you are suffering from such pain I completely understand why it's making you feel low. I have recently had a laparoscopy and been diagnosed with Endometriosis and Adenomyosis.

    It sounds like you have a lot of the symptoms of endo the back hip pelvi and leg pain. The endo could be anywhere in your pelvic area it can attach to ovaries, bowel tubes so it is hard to guess really. Endometriosis is very strange there are some people that have bad endometriosis and no symptoms and some could have mild endo and chronic pain.

    You will need someone to help you for at the least few days after the operation and it depends as to what they do, but you will still be sore even if they don't do a lot.

    Endo can you make you have very bloated stomach I'm very small And my stomach bloats at point of my cycle where I look about 5 months pregnant.

    I hope that this helps

    If you have any other questions please ask.

    Jo x

  • Hi Jo,

    Thanks for your reply. I really do hope they find it when they do the lap as otherwise I'm not sure where to go next to find a solution. I really do think I have it, and poss adeno too, but where the endo is who knows at this point. Considering I've been on the combined pill for 3.5 years, I dread to think of the pain if I wasn't taking it.

    Really should have gone to bed already but with the pains a bit pointless. Will go shortly. Was reading about a heat pad on another thread a minute ago, which sounds ideal as I could do with putting it on again, on those night when I wake up during the night due to pain and can't get back to sleep. Hot water bottles are great but not so good to lie on and I'm not getting up in the night to boil the kettle.

    Hopefully after the lap I will have some answers and can let everyone know. Shall go armed with questions like what if it's in pouch, attached to organs, organs stuck together etc and see what consulant says. We have no endo centre that I can find, but although my treatment is on Nhs, the consultant operates out of the local private hospital and does private work. I'm hoping that as he mentioned adeno to me after my exam he has extensive experience.

    x

  • I was where you are 5 Weeks ago desorate for them to find something and tell me what was causing the awful pain. Yes i get how you do with sleep I think that was my reply to another lady yes the heat pad is great helped me get a bit more comfy at night. You seem to have done your research which is great because you can ask those questions . I think asking about what will happen if the find it on pouch of douglas is particularly important as it is only usually removed by a specialist due to the difficulty. I have have just read another ladies post where it hasn't been removed and I believe that area causes significant pain I had endo In that area and had bad hip pelvic and shooting pain down my leg.

    Do you have a date for your laparoscopy yet?

    I hope this this helps

    Jo x

  • Hi Jo,

    Think I'm going to see about getting a heat pad as being able to wrap it round me or lie on it in bed would really help. Going to also cut out the wheat as of tomorrow and see if that makes a difference too.

    Always like to be informed and yes if they say they say they will remove from pouch if find it there, then they must be more of a specialist. Got lots more research to do, so I can go armed with my questions.

    My lap is on the 20th may so not long now and as my appt with the gynae consultant was only on the 1st April, I think I have been lucky in getting a date so quick.

    Thanks

    Lisa x

  • That's good that you haven't got long to wait and it sounds like this is really dragging you down. I would definately recommend the heat pad it's helped me get a bit more comfortable at night time which I always find difficult. I also have a diagnosis of IBS but I am waiting a endoscopy so they can look at my bowel. I have done a overhaul of my diet post laparoscopy in a effort to try and keep it away. It's a good idea to write it all down so you don't forget you sound like you know what you need to be doing. It's not long so keep positive and hopefully this will get resolved for you very soon.

    Jo xx

  • Hi Lisa - your symptoms sound very like endo in the Pouch of Douglas so if you are being seen by a general gynae they should only look and not do anything with it. You would need to be referred on to a specialist centre for excision as it is very complex surgery. Have a look at my post on POD endo x

  • It's not a moan - listening and supporting is what we are here for. I have many similar symptoms and my lap is in two days. I'm hoping after the recovery period that I will feel a lot better. Fingers crossed that you will too. Make sure you get lots of rest. It sounds like you've done enough 'powering through', now is the time to take it easy x

  • Feel free to moan, all us girls with endo need to vent, it get's so stressful at times. I developed IBS after I got endo, some kind of reaction to stress I think, so I can completely sympathise with you there, I cut out all wheat and dairy products and that made all the difference. It makes life harder as it really limits you but worth it if you want to feel better. And as to the pee problem, I can really help you there. Stop taking your pill. I had exactly the same issue, needing to pee all the time and doctors kept handing out antibiotics like sweeties but it didn't help- if I'm honest I think that didn't help the IBS either- so I decided to stop taking my pill as that was the only new thing. After a few weeks things were much better, after a few months I was back to normal. I told my doctor and he didn't believe me, said he had never heard of it, even my gyne was stumped. But a quick search of the internet and you will find many women with the same issues. It's worth a try, some people are just not supposed to take hormones, I know I'm not. Hope this helps, and I hope you feel a bit better soon. x

  • Thanks ladies. Think I managed to get a bit more sleep last night, as I don't feel quite so tired today and I managed to get out of bed earlier than normal, which was good as it was the first day back at school for the kids.

    Looking at Lindles pouch of Douglas post, my symptoms do seem to fit, so wouldn't be surprised if it's there. I have been on my pill since 16 with breaks to have the kids, and it's only been this last 18 mths that I've had the weeing issues. I did originally have an infection but when the pains came back the test was negative and the Dr said it was an irritated bladder, which could well be irritated by the endo!

    On doing some more research my consultant who will do my lap is a member of BSGE, so take that as a good sign. His profile also says he completed advanced hysteroscopic and laparoscopic surgery training 20 years ago, so hoping that means he has experience of more complex cases. Guess will find out at my lap in a few weeks. But if they find endo and leave it then I will be asking for a referral to a specialist centre in London, as this would probably be nearest for me. Unlike with my lap 20 years ago, I am now obviously much more informed and will go armed with questions to ask. Would also prefer that they leave any endo if they are not experienced enough to remove it, and then I can get referred to specialist centre. Will continue to do some more research and reading of the various posts on here, so I can go armed with questions to assess consultant , and also to make myself more aware and set some realistic expectations.

    Lisa x

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