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Post by scarlett on Mar 24, 2007 14:55:29 GMT -5
I wanted to start this thread for 2 reasons:
1 - I'm still confused about what level of cramping is normal - if any - during your period. Does every woman who has pain get it from endo or is some pain just part of having your period?
2 - How have your cramps during your period changed over the years? I'm asking this because for years I always had really bad cramps during my period since being about 13 - these felt like my uterus was actually contracting, it was like a griping, waves of pain kind of thing and was always from the centre, where I guess my uterus is. Painkillers and hot water bottles helped and it only lasted a day or two. Then, about a year ago that changed totally and I started to get what I now think of as 'endo' pain - this was extremely painful, crippling, sharp stabbing and pulling pains that made me think I was going to pass out, throw up, etc. Painkillers did zero. This pain could be anywhere, though mostly on one spot on the left side (probably at my left ovary) That's when I started going through the process that led to me getting diagnosed with endo.
Now I don't ever get the first type of cramping, contracting pains and I'm wondering if this is because my uterus is stuck to my bowel, etc and maybe it can't contract any more?
When I was diagnosed my dr said I'd had endo for years, like, over a decade, so basically ever since i was a teenager, because I have stage 4 and so that's how long it takes to grow.
My questions are: - why the sudden change after years of the same type of cramps? - is any pain normal during your period? - does endo really take that long to grow or are they just guessing, I've read it can grow at different rates, so maybe it really speeded up in the last few years, causing the change for me?
Sorry for the long post, but I'm really interested to know what others experiences are. I realise we may never know the answers to some of these questions for sure, but reading other people's experiences really helps. Thanks!
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Post by ouchy on Mar 24, 2007 15:25:28 GMT -5
Hey, scarlett.
Some cramping is okay, but according to my gynecologist, if the pain puts you out of commission or limits daily activities, this is NOT a normal type of pain.
My pain got worse and changed over time to concentrated spots, what I thought were my ovaries and uterus. During my lap, it was revealed that I did have endo on the back of my uterus--causing the centralized pain? Who knows. I'm guessing so. However, what shocked me the most is that the stabbing pain I felt on my right side wasn't from my ovary at all--but from my appendix being covered in endo. After it was lasered off the first time, that pain completely went away, although it gradually returned after a year or so. During my second lap, my appendix was removed, and I haven't had any stabbing pain there since. What I thought was endo on my left ovary wound up being my sigmoid colon tacked over to my pelvic wall (both laps). Even though I imagined both of these stabbing pains to be affecting each of my ovaries, I had 0 endo on my ovaries. My doctor said that because all of our organs are so compact down there, it is actually difficult to know for sure what organ is hurting.
I don't think that time has a whole lot to do w/ the spread of endo. I actually think that some women just get more and some don't. The agressiveness of the individual disease? My thinking for this is that judging by my pain, I've had endo since I was around 12 or 13, and I still have "mild" endo. If it was true that if endo is present since the early teen years and grows to stage IV by the time you're an adult, all women would wind up w/ stage IV. I think it just depends on the individual woman.
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Post by cherry on Mar 24, 2007 15:55:10 GMT -5
I started out pain free but cos my periods were so heavy and long and close together they wiped me out. I started having 'normal' cramps after a very long period about 18 months after menarche, and I can only describe it as a central gripping pain, easily dulled by hot water bottles, rubbing and patting my tummy or ibuprofen, but quite smooth compared to what I feel lately. I tend to think of my pains in textures which may make my descriptions weird. This period I have concentrated on the 'texture' of the pain cos it took my mind off how intense it was and how dizzy it made me. I get twisting, pulling and stabbing pains, pain that I can only describe as a huge weight over my middle, sometimes feels like someone is grinding their heel into my tummy, intense aching that spreads on my lower left which can also be accompanies by stabbing pains. My bladder seems to be affected at random times as well as during my cycle, can feel like it is being crushed and pulled apart at once, and I need to pee a lot but peeing hurts too. There can be some aching on my upper right abdomen just under my ribs, which 'echoes' back to my kidney areas, and the pains lower down often echo up into my stomach as cold burning and stabbing pains. I get the horrible stabbing pains down around my er, anus and vagina as though something is trying to break out through a new opening. It really shocks you when that happens! You just jump up cos you're like 'I have this funny pain in my bumbum and I cannot tell anyone why I just jumped up suddenly!' The change seems to have come on suddenly, after a few isolated incidents of intense pain that I ignored cos it wasn't happening every month at first. I'd say the onset that I can definitely say is my endo pain, has been in the last 3 years, including the few odd times before it became regular. Lately it has been increasing in severity quite fast. My lap found mild lesions (consultant mentioned adhesions but later said there weren't any) in POD, ligaments and front pouch between bladder and uterus. It's good that you guys ask these questions cos they help me remember things I should tell the doc, and the answers are always interesting xx
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Post by scarlett on Mar 24, 2007 17:17:36 GMT -5
Cherry, the pain and progression you describe sounds very similar to mine. It makes more sense if that's what happens to other people too. Since my laps my pain seems to be more generalized and more like an all-over stinging and aching sensation rather than very sharp and focused. I'm thinking the severe pain I had before was where my ovary was attached (to my pelvic wall? - can't remember exactly) and when it was freed up by the lap it went away. I still have a ton of endo around my bowel which wasn't touched in the lap, but I guess that doesn't cause me pain right now - hopefully ever.
Ouchy, yeah, I wonder what triggers it to grow more for some women than others. It just freaks me out that there is no rhyme or reason to this disease!! It's also so strange that for example I have it so severely around my bowel and bladder but virtually none on my ovaries which is one of the most common sites apparently.
I read recently (in the book Endometriosis for Dummies unbelievably!) that some current research and future studies hypothesize that there are in fact different types of endo, which account for the fact that some women have severe and debiliatating pain while others have much less. I would be interested to see where these studies lead.
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Post by ouchy on Mar 24, 2007 17:40:29 GMT -5
Scarlett...same with me! Anatomically, the ovaries and tubes would be the first place for it to go if it is really caused by backflow. However, I don't have any of it there, either! It's so weird.
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Post by kb on Mar 25, 2007 2:45:21 GMT -5
Hmmm how to describe it, apart from awful, lol.
Most of mine is across my lower abdomen and a general 'pushing down pain', it can feel like a clenched fist in my belly after sex, i get sharp pains to the side, probs around where my ovaries are. I of course get the regular cramping that can be so severe it prevents me moving at all (like yesterday). The pressing down and cramping type pain also radiates to my back, seemingly when its very severe.
Mine became worse all of a sudden, the pain has always been similar in nature, but is now more frequently severe, and unlike as a teenager it now never goes away. I suspect that the constant pain may just be a residual ache left from the severe pain, but thats my own theory, nothing been told to me to suggest that, my only basis for that is that it actually went away for a few hours once, after being in a 43 degree celcius bath in turkey, leading me to my theory. Just gotta find another 43 degree bath, lol.
Ive heard a similar thing to Ouchy, that if the pain puts u out of commission or affects daily activities, thats not normal. Ive also read that if the pain cannot be relieved by regular analgesics it is not normal.
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dee34
New Member
time to find an answer soon!
Posts: 19
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Post by dee34 on Mar 25, 2007 13:00:40 GMT -5
well when i am in pain which is a lot , the pain changes but when it is really bad and i am about to faint it feels like i am trying to pass a grape trough my virgina and it is out my back the pain too like all of the pain goes around my pelvic down my leg and groin lynph nodes are always swollen and sore But for years i have been trying to describe the pain, stabbing, knife like pains right down to my cervix area It gets so bad that i cant talk to anyone around me and my breathing starts to go very slow But when i am not in pain the chronic fatigue is just as bad which last for over a week before my pain starts again, right now my period went from very heavy 10 days long too now no periods for over 4 months and still have severe pain which has a cycle so the best time in the month is the middle of the month for 3 days pain free and have energy so i try and make the most of it those days I was able to work 50 hours a week not i am out of work and can only work a few days when i get some work sent my way We have a hard time us women it isnt fair what we have to go trough and other women dont understand either when they have a 3 day pain free period I am glad i found this site to find others like myself as i was all on my own here I live in USA and have a sister who had cancer a month ago and all the rest of my family are in Ireland which my dad has cancer and going trough cheamo there So this year has been bad for our family and i lost my job in November after i came back to visit my dad and my boyfriend broke up with me too that month I am so fed up with every thing right now and pains every day isnt helping all the other things going on in my life Ops sorry for go on saying all i did ,needed to vent a bit i guess No need to read , as i am sure you and who ever is reading to board already Thanks
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Post by Tiff on Mar 26, 2007 17:56:10 GMT -5
My period pain is very similar to what you guys have had. It first started out as being just real painful the first day of my period but normal bleeding. I was about 15 when the pain was starting to get bad. By the time I was 20 my periods would only last 8-10 hours because I was soo heavy that I was soaking through tampons every 30-45 min. And the pain would be so bad I had a hard time standing up. Since my lap last March and 3 months of Lupron the pain had gotton worse. I am now up to 2 weeks a month of pain instead of one and my bleeding has gotton a little lighter but still only last 2 days or so. Last January I fianally found an outstanding gyno who aknowledged my pain and told me pain this bad is not normal and something must be going on so that is when I scheduled my lap and was officially diagnosed with endo. Pain this intolerable is not normal!
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Post by angelas on Mar 27, 2007 11:04:50 GMT -5
I have pain all through the month.. but with my period it is very similar to cherry's description in that I get the 'shock' pains that make me jump in my bum, and I also get a tugging and pulling feeling on the outer area of my vagina. The cramps are contraction like, as well as nausiating. For the first day of my period (and usually the night before) all I can do is lay all curled up and cry. I have yet to find anything that helps with that pain so I've learned just to live with it and try to breathe... I've always had pretty bad cramps and pretty heavy periods, but I do think that there have been a lot of things that have changed as I've gotten older. Either the pain has gotten worse, or my tolerance has become less!
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Post by camille on Mar 27, 2007 14:06:53 GMT -5
ditto. plus the legs, oh the legs...weakness and pain down to my feet, lower back stiffness and ache, the headache...I don't think this is normal pain...
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Post by crnacc on Mar 27, 2007 18:52:36 GMT -5
I only have the pain during my period but painkillers never help, I have to lie on my side in a fetal position and put a heating pad there but it will last up to an hour. It feels like someone is grabbing my uterus and twisting. My pain is just mainly pelvic, doesnt radiate to the back or anywhere else. I have taken pain meds but continue to have the pain unless I really dose myself with a lot. Dr had given me Ponstel, what a joke that is! I have taken cramp bark, but usually 3 to somewhat settle it down, but i have a dull ache in the pelvic area the whole time I have my period. Birth control pills helped but caused other problems so now I have a consult with an ob/gyn for endometrial ablation. I have never been diagnosed with endometriosis, always thought you would have the pain all the time not just during your period. Am I wrong?
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Post by angelas on Mar 28, 2007 13:26:40 GMT -5
There are some of us that don't experience pain all the time and some that do. Have you ever had a chance to discuss your period pains and otherwise with your doctor? Have you ever had to miss work or cancel plans because of your period? I'm pretty sure there is a thread on all those sorts of questions that you could ask yourself to really determine whether what you feel is normal. I just don't know what they are off hand : (
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Post by crnacc on Mar 28, 2007 20:00:38 GMT -5
Well, this is embarrasing to admit but am 40 years old, a nurse, and am just figuring out that my monthly flow is nowhere near normal. I bleed a lot during my periods. I have always thought that was normal because I have always done that and never known any different. My first horrible cramps started when I was 21, in nursing school, missed a test and got demarked for it. And, the ob nurse instructor in school gave us a lecture about how women need to suck it up with menstrual cramps and put up with the pain, not lay on the couch. Obviously she had never had horrible cramps! And subconsciously I took that in and thought ok, I will suck it up. But with age the pain is worse and I am not suffering anymore! there has to be relief and no one should have to put up with the pain. i have discussed periods with my drs, first dr was female, and she was on the mindset also to suck it up, second dr male, and he has worked with me on treatment, just referred me to ob/gyn. i am hoping he can do something for me.
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Post by kb on Mar 29, 2007 0:14:31 GMT -5
dont be embarrassed ur just figuring that out, some women never figure that out.
I blame society in general for the lack of knowledge on whats normal and whats not.
Even in school when the girls are brought into a classroom while the boys play football, the information given is not quality. They tell you u will only bleed a few tablespoons, and it seems more than it really is.
Alarm bells should go off there, but they dont explain properly, they dont tell u its not normal to bleed through a maternity pad overnight, that its not normal to bleed so heavily that an overnight pad needs changing every half hour.
Even doctors will tell u clots are normal, they are but they dont tell u when they become abnormal. Little clots are normal, above the size of a 10cent piece are not.
People bleeding anywhere from 3 days to 7 is normal, 2 weeks is not.
Pain is normal yes, but it shouldnt interfere with daily activities, it should be able to be controlled with regular pain relief, and it should not get worse as your period goes on.
Sex should not hurt, my greatest regret is that i didnt slap my specialist who told me that 'maybe you just have painful sex'.
Ive had friends ask what i go through, so i try and explain as best as i can, whats frightening is when they say, 'i get that too' and i frown and say, thats not normal, and there like isnt it? All of a sudden there thinking on it, next time i talk to them there telling me more, things that they had ignored and never realised were a problem that they just put up with. All i can do is tell them to see a doctor, dont ignore it. They go to a doctor and get told stupid things, i had one friend who it could be felt on vaginal examination and she got told its only mild, there is nothing i can do for u, put up with it. Then had to explain, it cannot be diagnosed properly without a lap, they cannot know its mild from that, and treatment should have been offered.
Grrrrrrrrrrrrrrrr, this world is so frustrating.
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Post by crnacc on Mar 29, 2007 10:37:57 GMT -5
thanks, i agree, it isnt explained properly and if that is always what you have done then i assumed it was normal. i only seem tired that time of month but not really rest of month, especially the days after heavy bleeding. i didnt know that a clot more than a dime size is abnormal either, which means i do have a problem. my main work in nursing has been gerontology, so not really having periods at that age. i was told by first doctor that i have a uterus that tips back, she said it was tipped quite a bit. i dont know if that has anything to do with the pain. my friend has endometriosis and thinks i do, but i have had problems for 20 years. is it possible to not get more problems besides horrible cramps with this? like abdominal pain from endo tissue growing in other places? i am glad i go to ob/gyn next month as i really need answers
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