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    All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
    Endometriosis Frustrated and Depressed
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    nikki6687 posted:
    So just feeling pretty down right now. Just had surgery 3 months ago and now the pain is back. Will be seeing a new doctor tomorrow. Hopefully the 3rd time will be a charm and he will actually be able to and actually care about helping me. Really tired of doctors that dismiss my symptoms and just treat me like I'm just being a baby, or that I'm exaggerating my pain. I just love spending $60 every time I go to see a specialist to let them tell me I have to either be on birth control whose side effects I can't tolerate or will have to go through surgery again. I remember asking my doctor who did my surgery about getting medicine to have for when the pain was too much.He just told me my pain should have been completely gone after surgery, and that I "shouldn't need pain medicine" anymore which was awesome. I went in for an office visit and mentioned that the pain is worse when sitting at my desk for long periods. He suggested that perhaps I should stand for my entire 8 hour shift while trying to take calls! Spending 2 days out of my life every month on the couch (almost a month out of the year) unable to function is so much better for me than taking an occasional pain pill when when I'm hurting. I'm on antidepressants now, because I'm just so frustrated and stressed all the time and finally just couldn't deal with it on my own. Maybe eventually that can make it to where I'll still have pain, but at least won't be bummed out about it. If none of the doctors care about my quality of life maybe I should just give up trying to get help. I thought I was doing better, but now I'm having premenstrual cramping that is so bad I've been crying off and on for the last 24 hours and not able to sleep (maybe for 5 hours last night but kept waking up from the pain). I just feel like I can't do this much longer. I don't want to commit suicide, but at this point if I had an accident and died, I feel like God would be doing me a favor. Not trying to be dark but I am just feeling very defeated right now.
     
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    vi0lit responded:
    nikki6687 - I totally understand where you are at. I had surgery almost exactly a year ago. My pain came back immediately after surgery, worse than before. I cry at my desk at work as even though I could, my company will not let me work at home where I dont have to have pants at my waist and can use my heating pad. I actually have pain 2 weeks out of every month even this seems to be growing. One thing I know is that I have had endo for at least 7 years but the doctors never mentioned the possibility even though I had been complaining for years about pain starting more than a week before my period does! This is completely typical as I think they don't really know what to do about it. Everything I have read says that there's no known cause and no known cure, but the doctors dont seem to want to say that. I am turning 40 this year and never married or pregnant, so I am facing maybe never having a family. It would have been nice if they mentioned WORD 'endometriosis' back when I started complaining about it, I might be facing the same horrible choices I am now. My gyn is the one that figured it out and she told me that unless I want my ovaries removed, there's really nothing they could do without birth control - which I don't want because I would like to get pregnant. Now I have recently learned theres a decent chance of infertility due to the endo. The only things that work for me are heating pad and Ibuprofen. Even tramadol does not seem to touch the excruciating pain. My advice is 1) use a heating pad when you are sitting on your couch 2) look into FMLA. Find a doctor that is willing to work with you. They have also told me that I may have surgery again but we will see as I am also going through infertility tests and trying to conceive before I am too old. I know this doesn't sound great, but we could both have it worse. I think the most upsetting part of this disease is how little people know about it, how the doctors don't care to tell you they can't do anything and therefore don't diagnose it and to top all of that off.... Most people will think you are whining about cramps but I've been an outsider all my life and I know what the opinions of 'most people' are worth.
     
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    kimmygens responded:
    Hi Nikki,
    I can really relate to how you feeling, sometimes I cry like a baby because all I want is to be"normal" again. So you are not alone in having these dark thoughts!! I've been suffering with this since I started my period at 14, I am now 30 and have only been diagnosed 4 months ago with Endo, after I've been to the doctors a million times though-out the years with them shrugging it off and thinking I'm exaggerating about the pain, my period would affect my work as i'd either come in late or leave early or stay out as result of the pain (pelvis, lower back & left leg). I would pray that i get my period over a weekend so that i'd have at least 2 days to try and manage the pain. I eventually forced my gynae to check me out as my pain over the years have escalated, she did an ultra sound and could not see my uterus (which freaked me out big time) and then scheduled me for a laparotomy in which she discovered my whole abdomen covered with dead blood and a chocolate cyst totally contorting my left ovary which by Gods grace she managed to save. I am frustrated that it took this long for someone to take me seriously, and now my concerns are if I'll be able to conceive because of the damage done over the years. Currently i am on Visanne started immediately after op, i experienced some crazy side effects from day 1 (from hair loss, acne,mood swings, nausea, weight gain, anxiety/emotional etc) had 2 excruciating painful; debilitating periods after the op but that was it, no more pain after that, no more bloating, lower back pain etc this pill eventually stops you from getting a period after maybe 3 months (depends on the user) it stops you ovulating. My doc says i need to be on it at least for a year, i am pressing through as i do not want to go for another op. What helps me with discomfort and extreme pain when I do have it, is 1xTramadol 2xparacetamol, a hot lavender infused bean bag and my electric black for my lower back and lotsa hot black rooibos tea and of course the support of my family. Please do not give up hope!! This has dramatically changed my quality of life but I am not ready to give up without a fight!! Strongs xxx
     
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    spulcz replied to kimmygens's response:
    Hi Nikki,
    Im so sorry your going through this.. It's a shame that in the year 2014 doctors aren't all on the same page... It's more than a shame it's disgusting. That a doctor can dismiss how your feeling and it ends up making you wish you were dead.. I get it, trust me.. Some days I'm there too. But I think like this, if I gave up then that would mean that's one less person to help fight this and hopefully one day with enough of us standng up screaming, we will be heard.. Slowly it's happening.. Not quick enough when you're in pain, I know but it's starting to happen..That being said, how are you feeling today? Any better? Did you get your period? Please update us and if you need anything don't be afraid to say so. You can email me anytime [email protected] and if you need to talk or text my number is 651-560-3138
    Take care hun and I hope you're feeling better.
    (((((((HUGS to you))))))
    ~Sadie
     
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    atticusfinch24 responded:
    I totally feel your pain. I am pretty down about my endo right now. I just had my second lap in January, and I have so many complications since. The endo came right back, and I have been in chronic pain everyday. I used to work out 4-5 times a week, and have not been able to since the surgery. Sitting at a desk for a prolonged period of time is very painful, in fact sitting (i.e driving long distance) is painful. I've missed a lot of work. And feel very inhibited by this disease.

    I am about to switch gynos. After the surgery I was told the same thing, that I shouldn't need pain meds anymore. I found a pain specialist that is very sympathetic to my severe pain. However, getting treated like a drug addict or drug seeker by all other doctors is very psychologically difficult. I am 32 years old and was diagnosed when I was 26. When I do end up in the ER because I'm in so much pain...they usually just dismiss me...it must all be in my head. Also being treated like a drug addict/seeker by my friends and family isn't a walk in the park either. The people around me sometimes don't get how much pain I am in.

    The thing about endo that I have learned is that it isn't just physical pain. It's also psychological. I have had the hardest time this year as the disease has progressed this far with accepting that I can't do much to change it. Hopefully, someday, women won't have to put up with this like we did. And doctors will actually know what they are talking about. And fully understand the pain we are in.

    Good luck and take care!
     
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    kimmygens replied to atticusfinch24's response:
    It is really insane how we have to go through all of this physical and emotional trauma, starting so very young in our lives... Seriously, thousands of women cannot be wrong about this!! I'm just trying to take it one day at a time.. Wishing the best of luck to you guys, your replies surely helps me feel better. Hope Nikki is coping on her end! Thanks xx
     
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    antonellamessi responded:
    I'm so sorry your going through this.. It's a shame that in the year 2014 doctors aren't all on the same page... It's more than a shame it's disgusting.

    It sound your emdometriosis is coming back, you should not let it alonet without doing anything. Immediate treatment is need to improve your situation, or it would go worse.



    In fact, you could consult professional online doctors, like Wuhan Dr. Lee's TCM Clinic, before you go to see your doctor aganin. They would offer you professional and free help online to you.


    Hope this could help you.



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