endometriosis ? lower back feel so raw..help?

Discussion in 'Fibromyalgia Main Forum' started by kirsty28, Jan 13, 2006.

  1. kirsty28

    kirsty28 New Member

    i have had lower back pain for months and months now.(can radiate thru to pelvis, down legs etc).sometimes it lessens which is great but other times it is so severe...when i have my period it gets sooo much worse where it is almost to the point where you pace about in distress...before this was diagnosed fibro as had aches and pains in different places but they don't hurt as much now...its all in the back and legs, buttocks...
    i had a internal scan about 2 years ago for pelvic pain and they said i had slight cysts on the ovaries..but not had a laparoscopy...
    the thing is ...if i managed to get a laparoscopy i bet on the day my back/pelvis would not seem that bad...would it still show up?? i would love someone to look today as its bad but my periods are irregular so it could be hard to go for one when i could know it would be bad...saying that its bad most of the time anyway...
    altho i don't want endo in a way it would answer some questions for me..
    what do you think anyone???tjhe pain is sooo raw and nasty like a rectangle shape over my sacram/lower back...i have read you can have adhesions near the sacral bit of your back???
    thanks from the u.k xx
  2. CanBrit

    CanBrit Member

    Many years ago I had an awful time with my periods. Horrible burning pain and awful bleeding. It also used to be worse around ovulation. They diagnosed me with fibroids. When they finally did my hysterectomy, the surgeon found that the endometriosis had attached itself all through my lower organs. He spend an extra hour trying to clean me up.

    I was diagnosed with FM 1 1/2 years ago. It started after a 24 hours bug. The first place it hit was my lower back. Somehow I'm sure that a lot of this is related.

    I would really push for the laparascopy. They left me with one ovary after the surgery and several years ago I had a cyst burst. Man, that was painful.

    Keep at them. Sometimes I wonder about the skills of some of the medical profession.

    Keep well.

  3. tandy

    tandy New Member

    I have alot of what your describing,...and I have Endo and Fibro. The pain is very bad at times.(not always) Its all across my low back and goes into my butt and my legs,..??? My legs ache almost daily.
    I think the thing that really clued me in on something "not being right' in the pelvic area,.. is along with bad period pains I'd also get just as bad pain at ovulation time too.
    I also had small non functional cysts on both ovaries.
    I use a heating pad alot on my butt/low back,.. that helps. so does hot baths before bed.
    To DX endo they need to do a Laproscope to look around inside the pelvic cavity and female organs.
    No other test or scan will show Endo.

    The surgery is'nt bad at all. But it IS a surgery and you will have inscision pain for about 3 days. Its not a easy thing, but its not bad. And its better to know and have an answer for all your pain.
    I waited 2 yrs before I went thru with the Lap.
    Best of luck~
  4. alissab

    alissab New Member

    i too have these same problems. my legs ache daily (can not keep them still), my back hurts...sometimes it feels like it could break right in half, and i can't sit in one position for too long as i get very stiff and more achy. i was recently diagnosed with fibro myself and the flare started in september, soon after my mother-in-law passed away. i stayed at the hospital for four days straight (night/day) and out of the four days i only slept two. i guess it was the emotional stress that brought on the flare. i had two laprascopic surgies done five years ago for a cyst on my right ovary. i stopped having periods for about two months and had really bad pains on my right side. i finally had an ultrasound and found out that my cyst had ruptured, etc. my periods are still rough to get through; my back hurts terribly at my time of the month; this may sound gross, but it's hard to use a tampoon as i can feel pressure on my right side; and if i push on the right side of my stomach (any time) it hurts. i scheduled an appointment with my doctor for next week to have her check out my stomach and order an ultrasound. here we go again. the laprascopic surgery isn't that bad. your in and out in a jiffy and a few days of healing is required. good luck to all. this fibro thing really sucks at times, but i try to keep my chin up and roll with the punches. have a great weekend everyone.
  5. kirsty28

    kirsty28 New Member

    .....for replying...its hard to know what to do...
    love kirsty.
  6. victoria

    victoria New Member

    Hi I was dx'd with endo 24 years ago with laparascopy as I was quickly getting nowhere with what doctors thought... started reading the books myself and self-dx'd, doctor sorta 'dared' me to do the lap, I wanted it, and guess what - severe endo, and no laser surgery then. All I was told to do was to try 6 mo of bc pills...

    I really didnt think that would do it... so kept reading all kindsof things and talking to many people... ended up going on Candida diet very strictly... guess what, took away symptoms altho I still had endo.

    Have you checked out the endometriosis association at:

    Its a very worthwhile group to support, they have linked dioxin to endometriosis for instance, also found about 80% of their members have CFIDS or fibro.

    They also found that for symptom relief, the candida diet is the best.

    I found out I was more allergic to eating molds (cheese) and yeast (bread etc and wine) even more than pure sugar... eating those foods could bring on a severe endo attack in no time at all. Still true today even tho I'm past menopause.

    Menopause is no cure-all, there have been many reports of women not having problems with their endo until after menopause, as late as 70 years old or more.

    My last lap plus laser surgery was 10 years ago, it was still severe, had it done because I also had a cyst on ovary... but as long as I keep my diet, I don't have symptoms at least. I have never personally taken any of the hormonal brews that others have tried, always felt the side effects weren't worth it and they were too untested - and still are - when I had such a simple answer at hand...

    Good luck!
  7. Sheila1366

    Sheila1366 New Member

    Sorry to heat you think you have endo.I have it and it is no fun.As far as I know a lap. is the only way to be sure.Even without pain,if it's there the doctor will see it.Getting an answer to mystery pain is always good for everyone.The wondering causes so much stress.My endo. pain was insanely painful.I had a internal ultrasound a month ago and found I had cysts on my one and only ovary.It hurts,sometimes alot but nothing compared to endo.As a matter of fact I was for sure the endo. was back til I had the ultrasound.
    Good luck and get checked out for your own peace of mind.
  8. cbrogan6

    cbrogan6 New Member

    I have always had painful periods, but it was getting to the point where I would only feel ok about one week of the month. The rest of the time was a dull, crampy feeling and the pain spread to my back & legs, my joints hurt also. I was diagnosed with Crohn's disease about 6 years ago, but this felt different. I decided to see my OBGYN and she immediately suspected endo and had me scheduled for a laparoscopy before I could blink! The surgery wasn't too bad, but I was in pain for a week or 2 after, not awful, but annoying.

    I had stage 3 endo (there are 4 stages) and she used a laser on what she could see. She showed me the pictures later, and it looked kind of like blisters. It will definitely show up if you have it, whether you're hurting that day or not. Mine is mostly around my bladder, I hear it can spread to all kinds of places.

    After I was diagnosed, my doctor put me on the Depo Lupron injection, which suppresses your hormones and puts you into a temporary menopause. The injection lasts for 6 months and I am done with it now. Looking back, it definitely helped with the pelvic & back pain. However, my joint pain has increased, and progressed into achiness all over. Sometimes it feels like my bones hurt. That led me to 2 rheumatologists, who diagnosed me with the fibro. I'm not sure how I feel about that, I have heard that Lupron can cause a lot of the things I'm feeling. I don't know if I would have agreed to it if I had researched it more.

    Anyway, what you're describing does sound like endo, and a laparoscopy sounds like it could be a good idea. I didn't mean for my reply to be so long! But this stuff has been on my mind lately so I guess I needed to get it out of my system. Endo is not fun, but it is good to have a name for what you feel. I hope you do not have it, but if it turns out that you do, you should search for a doctor who is knowledgable in that area that you trust and can communicate well with. Best wishes to you!!
  9. kirsty28

    kirsty28 New Member

    ...fot the post being long, anyones experiences is great for me to try and understand what could be going on...
    thankyou for sharing it with me.....
  10. munch1958

    munch1958 Member

    The only way to tell if it's endo is to have a diagnostic laparoscopy. They need to visualize the implants and take biopsies. Make sure you have a pain map filled out before the surgery so they can check areas where you have pain against your body.

    Also, VERY IMPORTANT, do not take Danazol or Lupron to surpress your menstrual cycle for at least one month prorior to the surgery. The drugs shrink the implants and they can't be seen. It defeats the point of the surgery to go look at them.

    It is very important when traveling to see big name endo doc to choose one that specializes in removing endo from where your endo is located. Back pain radiating from nodules on the uterosacrial ligaments is another source of low back pain.

    If you have pain with BMs during your periods you need to see a doc that specialized in removal of bowel endo. I had stage 4 endo with disease in the rectovaginal septum. If you have an obliterated cul-de-sac you have rectal diseaese behind the scar tissue.

    [This Message was Edited on 02/21/2006]
    [This Message was Edited on 02/21/2006]
  11. tandy

    tandy New Member

    I already replied above but I'm back to finally answer your ONE question.
    (I forgot)lol

    Yes,...A Laprascope will show any endo even when your not having symptoms.
    When you have symptoms all the area of endo get bigger/swell with inflammation so they are easier to find,but they never go away. Even when your symptoms ease up its till there.
    Most endo are like little purple or white blisters. They can be on any surface of your female organs and thru-out the pelvic cavity. Most will bleed with your cycle and the blood has'nt got an escape route out of the body.
    any bleeding is a irritant to our bodys, it just sits there and hardens over and eventually turns into larger growths. Chocolate cysts, organs can web together also,etc.
    Its a very confusing disease,and stubborn to cure.

    The Lupron after my first surgery acually helped me alot.
    Many get bad side effects from Lupron but I did'nt.
    Its been 3 yrs since my last Lap. to clean up.
    I'm overdue,as I have increasing pain again.
    My Gyno says to give her a 2 week notice when I'm ready for another Lap. I plan on going in before summer hits~ (kinda get it out of the way. So I can maybe have some painfree days in the nice weather)
    Best of Luck to you~
    There are some very good endo sites I can tell ya about if your interested.
    Let me know
    Hope your doing a bit better this week :)
  12. SherylD

    SherylD Guest

    I have alot of what you all are describing...I go to the gyno in Mar..

    I won't be surprised if this topic comes up.

    For those of you that have had it affect your bladder..Do you have a lot of pressure and when you have to go..you have to get there fast?? I have a lot of discomfort if I wait to long to go.

    Also..do you all have a lot of pain with sex?? I am sure you do..I do and for days after I just ache...like I am having my period..I always feel like I am having my period.

    It use to be I would have one week were I felt ok..now it seems to be all the time..

    Tandy..I would love those websites so I could do some reading..

    Kirsty..sorry for butting in on your post..I hope you don't mind..this just really worries me too..

    Thank you..

    [This Message was Edited on 02/21/2006]
  13. kirsty28

    kirsty28 New Member

    thanks for all your advice...my pain since i posted has been a bit better thank god...still there so i will go back to my doctor..i am so pleased to get some replies that might help me..
    i just wonder why the pain can be sooooo bad , like crawling the walls bad and then be not so bad...it sure confuses me but i should not complain..
    hope u feel better 2..
    love k, u.k
  14. tandy

    tandy New Member

    The best one by far that I've stumbled on is obgyn
    dot net
    On their homepage theres a drop down select a topic on the top/left.
    Select Endometriosis zone (its about the 5th down)?
    Then once there,... under support(on the left again)
    There should be chat forums or message forums.
    click into that. (you may need to register at this time)?
    its nothing,..very easy/fast.

    You can read posts for each month. Most current being February. Theres just so much info.
    either reading others posts or articles from endo zone.
    Hope this helps~
    (ps. I just use my name Tracey there)
    Hope you find it ok.
  15. suzyqdoglover

    suzyqdoglover New Member

    Hi Kirsty,
    You have just described what I had 5 yrs ago before my complete hystorectomy. I had endo and polysistic disease it took the doc's years to diagnosed just like this fibro. The pain was just horrible and I was just like you. I wanted a name for it. I am sorry to say I have not been anybetter since the hysto. I don't have the severe pelvic pain anymore but I have so many other problems like ,fibro flares all the time now and I have to take estragen everyday,otherwise I have hot flashes and several other problems. I have problems with sleep and depression more so now. I don't know what is better. They didn't tell me I had cyst in my overies until the surgery. They were loaded with them. The doc had to remove both of them. Try hot baths when the pain gets too bad. I don't know what to tell you but, GOOD LUCK AND GOD BLESS YOU!