Feeling so tired & down. Wish endo would do one!!!

Sorry to moan but just feeling so unwell and tired all the time. Had my lap just over 2 weeks ago where they found stage 4 severe endo/ frozen pelvis. Saw a really lovely endo specialist last week who will do the next op. He explained the endo is everywhere. My bowel, bladder, uterus & ovaries are all very stuck together. He started me on monthly injections of decapeptyl until next op and since then the pelvic pain has really flared up. I am also currently full of cold so generally feeling crap! All i want is to feel better to enjoy xmas. Me & my husband really want a baby & i had hoped to start trying around now but when i gt the diagnosis my plans went out the window. The specialist said he will do his best in next op to give a window to try for a baby but cos endo is really bad may need IVF. I am very fortunate to have a gorgeous 4 year old boy but would love to complete my family. As i am sure most of you will understand how the pain just effects your entire life. People really don't understand either. I am thinking the decapeptyl is prob making me feel quite down as it basically puts you into menopause. I really do feel like a failure at the minute. My husband is fantastic & so supportive but i feel so guilty for always being tired & in pain. The injection can apparently flare up pelvic pain for couple weeks so i am currently pinning all my hopes on feeling better next week. I hope all you other sufferers get a relatively pain free xmas. Xx

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  • Hi Cat247

    I know what you mean! I hate this illness so much, and the way it takes over your life even though you try your hardest not to let it. I'm a pretty active person, I run a very busy pub, have two dogs and a horse so am out walking and riding as much as I can, but it does feel like a battle of wills every day - me against the endo that makes me want to curl up and not face anything. I've been on Zoladex for 5 months which basically does the same as the one you are on, and it made me feel very down as well, not to mention all the other horrid side effects, the sweats were the worst! there I am trying to chat to customers in the restaurant and I can feel sweat dripping down my back and beading on my forehead... And I've probably flushed as red as a tomato... Attractive!!

    The guilt rings a bell too - it's such a vicious circle. I feel dreadful so I'm in tears yet again, my poor long-suffering husband comes and hugs me, says all lovely things, goes and sorts the horse out, covers for me at work when I can't walk from the pain, and what do I do? Cry more because I feel guilty that he's doing all this, and having to put up with me crying!

    It's not an easy illness to talk about, and any gynae problems aren't exactly socially acceptable. I had my first lap last week, my left side is covered in endo, huge cyst on ovary, bowel stuck up out of place, recto-vaginal as well (but seems to not be in my bladder yet), but I'm sure most of the lovely regular customers who are all asking how I am don't really want all the gory details about possible bowel resection etc! It's good to have this forum to be able to have a vent with people who understand.

    All I can say to you is what my husband says to me - you are so strong for fighting this, you don't let it rule you even if there are days when it makes you feel like it has the upper hand. Please don't ever think you are a failure, you have a people that love you - ok you may not feel like doing cartwheels round the Christmas tree this year, but I am sure that you will still have a wonderful time, and can create some beautiful memories that will help you get through the painful times.

    Thank goodness for online shopping!

    Take care and lots of hugs, xx

  • Thank you FMcB79 thats a really lovely message. Its nice when you have people to talk too who understand. Sorry to hear about your diagnosis i hope they can help you going forward.xx

  • Hello there, I have read your posts and have literally cried! I feel the same the majority of the time, and at the moment struggling to read anything nice, bad or indifferent without bursting into tears at my desk, in the car, shopping, at clients - you name it!

    My husband is the best support I have ever had, like you too and I feel guilty a lot of the time that I am not good enough..

    All I will say is that although it is a struggle every day to muster the enthusiasm, smiles and get on with life, it is worth it..Keep strong and know that we are all here for each other, and we have some wonderful times and men to celebrate too! I joked the other day with a friend of mine who needs another cyst removing from her remaining ovary that we have been chosen as special people to have this - I think this is partly true as there is truth in the saying that what doesn't ruin you makes you stronger.

    Good Luck, and keep on talking its amazing how much relief and understanding I got when I actually plucked up the courage to openly talk about this condition to my friends and work colleagues.

    You are a brave person and I truly believe that we all the more beautiful for our problems.

    A couple of sherries on Christmas Day will be my get through medicine! xx

  • Isn't it just really hard to struggle through the day, it will make you feel a little better to know that us ladies on this site are with you on that one and all suffer badly from this so we know how you feel as other people dont have a clue. It's such a horrible disease and no doubt about it does wreck your whole life. So sorry you are suffering also from depression which tbh is part of it. Will this gynae take the remaining endo out for you, which he should do and help you be pain free for a while and able to conceive. I have had 4 laps in the last 2 years, gruelling and wrong I should have had to go through 4 of them to get all of my endo out. They wouldn't treat men like this or even animals, disgusting the way they leave us suffering even after an operation. Keep up on the pain killers to try and keep on top of pain but who wants to take them forever, but just for now until you have your next op. I live on them right now as just had my 4th op, so sorry for your suffering x

  • Thank you for your kind words and support ladies. Feeling a little brighter today so to make the most of a good day i cheered myself up in the hair salon. Yes WP22 this gynae is going to try and remove the endo which is good. I wouldn't say i'm depressed just get down days which i'm sure all us lovely ladies do on here. Going to try and pick myself up and carry on until the next op. Its great to chat to people who understand. Sharpee i agree we are special. Hope you are all feeling ok today.xx

  • Hi there,

    My heart goes out to you. It's awful what the disease can to do a women an how it can affect the rest of your life an your plans. I was diagnosed with the diease in 2011 and I due to go in on6/1/14 fir my second lap operation as I am having a lot if back pain, taking infections every two weeks, painful periods, tired, depressed, sore to get up an down from bed an chairs ect. My guns doc thinks it has spread to the bowl an bladder etc. If you don't mind me asking what systems did you have wen you were dignosed with stage 4?

    Thank you for your time, hope u feel better soon. Happy New Year hope you have a pain free or less pain in 2014.

  • Hi Shelly144 thanks for your message. Sorry to hear you are suffering so much too. Fingers crossed your 2nd lap will help. Just waiting for a date of my clear up op. My symptoms when diagnosed with stage 4 were horrendously painful periods that left me bed ridden and very sick. Extreme back pelvic pain mainly on right side. Bowel issues like constipation but sometimes the opposite during my period. To be honest if I googled endo symptoms I have pretty much all of them. My specialist said I was so textbook he should be recording what I said and playing it back to the pain clinic as this is where I was so mis diagnosed for so long. When they did my lap they found everything very stuck together like my bowel bladder womb and ovaries. I am now having monthly decapeptyl injections which put you into temporary menopause until my next op. It's great not having periods but still suffering with most other symptoms :( best of luck with your next op. What did they do with you after your 1st? Such a crap disease isn't it but nice to know we aren't alone.xx

  • Hi cat, thanks for it response. After my first operation they put me on the pill, I have tried a number of them an they showed no improvement of the pain, tried pills to cancel periods an to make them lighter but they were also no good. Tried herbal remedies,Acupuncture, then got marina coil inserted it was causing more pain an infections an then I was rushed into hospital with serve pain an a bad infection an the Dr said that the last thing to try is the prostab injections which I did but with the side effective ok was getting my go said not to take another an also with me being fine. Now I'm go in in for 2nd operation after a fight. Had to go private to see a specialist doc as the on on the bus was useless. She did a. Scan an see that my bladder is squashed, womb laying to my back, see could see the bowl an she thinks it could be. Stuck to the womb. I'm taking infections every two weeks and I have really bad ibs symptoms.

    Yeah it's awful what us women have to suffer and its only really those suffering with the disease understands, this is why I like to go on this site. Thanks again for your kind d thoughts, wish u all the best for your next operation. X

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