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  1. #21
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    Quote Originally Posted by Anita18 View Post
    Having to take it at the same time every day does get tedious, but I figure one measly little pill per day is nothing compared to some of the drug regimens many people have to take in order to live.


    I do get your point, Anita. The thing is, I do not have to take anything to live (and fingers crossed that things stay this way for a loooooong time, if not always). So why would I want to take anything?

    I do realize it doesn't fully make sense, but I really don't like to take anything unless I really have to. And one poster mentioned the often forgotten truth: if you take pain medication for just anything frequently, you gradually have to up the dose - which means more and/or stronger pills.

    My periods used to kill in my teens - yet my mother would never allow me to take anything, and she had a real knack for finding my private stash of Advil. "What poison are you sticking into yourself" was the comment each and every time. She never did understand just how much it hurt. Same with other medication - if only possible with the given medication, she'd always make me dissolve whatever I'd been prescribed in hot tea...


    Quote Originally Posted by AJ Skatefan View Post
    I know someone whose fibroids were so bad that she was anemic from all the bleeding. After a couple of minor procedures she was finally hospitalized and got an emergency hysterectomy. She bounced back better than ever and was wishing she'd done it years before. So if it's bad, just go for the hysterectomy.
    While I really appreciate everyone's contributions, sometimes I really wish people would read before answering. I've stated at least twice that I have very light and virtually pain free periods. At this point, my period days are the only pain free ones.

    And "just go for the hysterectomy"?

    Just last night I was reading statistics on how many hysterectomies are performed in the US precisely because of fibroids - which could have been dealt with or managed in a different way.

    You know, perhaps I might want to have children at some point, and perhaps I'm not keen on early-onset menopause at the age of 29...

  2. #22

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    Well, I'm just telling you the experience of my friend. She tried all other options first. But she was older than you so I can see why you don't want to do that.

  3. #23
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    Someone did suggest endometriosis.org. From what I have studied and heard, endo and fibroids often go hand in hand. While one doesn't cause the other, they are often found together. Additionally, only the severest of endo cases are spotted during ultrasounds. For years I complained about the pain and was given endless ultrasounds only to be told that there was no sign of any problem.

    My doctor's web site has some great info, including videos of him talking about both fibroids and endo. http://www.thomasllyons.com/dr__lyons.htm. I am not trying to say to go see him. I just personally think he is awesome and have been so much better since going to see him. Things aren't perfect yet, but there is progress.

    There is also a clinic in Atlanta that specializes in endo and fibroids. The web site is http://www.centerforendo.com/. I spoke to one of their call center nurses for about an hour when I was first diagnosed. For insurance reasons I went with Dr. Lyons, but these guys were just awesome about answering my questions and what not.

    I was diagnosed with fibroids about a year ago. The experience of being diagnosed was horrible for me. I had put on a few pounds in my lower stomach for seemingly no reason (later learned that it was due mostly to the fibroids). I felt pressure all the time and had to go to the bathroom all the time (usually rushed there). I had heavy and irregular bleeding that made me anemic and was experiencing horrible pain even when it was not that time of the month. It had become unbearable for me.

    I went for my annual OB/GYN appointment - a new doctor since I had moved. He was horrible. He performed all sorts of tests, but told me that I was walking so obviously the pain wasn't that bad. He told me that he thought it was the 14 pounds I had gained and that if I lost the weight I'd feel better. When the ultrasound revealed the six fibroids and that my uterus was nine times the size that it should be, he said that was probably the cause and that women often had fibroids.

    He said the solution would be a hysterectomy. I don't want children so I was fine with that, but he hesitated. I asked why and he informed me that with the size of my uterus and a previous abdominal surgery I had already had made me high risk. Since I had not had children vaginal hysterectomy was out. I asked what was I supposed to do. His answer? Go to a pain clinic and learn to live with the pain. Suggestion two was to see a psychiatrist and learn to think about other things than complaining about pain.

    After I threw the referral to a psychiatrist (he said I was probably just depressed) back at him and stormed out, I began doing my research. Dr. Lyons was the name that came up again and again for me. While you may or may not have endo, there are support groups in most areas that you can research. They are fabulous at recommending local doctors who specialize in endo and fibroids. I have found that finding a doctor who specializes in endo and fibroids was right for me. I don't need fertility counseling or discussions about that. I needed a doctor to help me stop the pain.

    So my advice to you is to find a doctor who specializes and will talk to you. I ended up taking my best friend and my mother to my first appointment with Dr. Lyons. He called all three of us back before he ever examined me and went through my whole medical history. He answered my questions and theirs before the exam and then again afterward. I can't tell you how much that helped me. No, it didn't stop the pain, but to find someone who knew what he was talking about and listened was great.

    We put off the hysterectomy for another few months because I have only recently gotten a new job. I know I have to do it, but I didn't want to miss the time at work yet. I was put on continuous doses of Loestrin birth control pills. I don't have periods now and rarely have the pain or other symptoms. Only on really bad days can I tell there is a problem and then a low dose of pain meds is all I need. I don't want to be on the pill continuously so eventually I will have surgery, but in the mean time I'm able to function.

  4. #24
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    Quote Originally Posted by Lothlorien View Post


    I do get your point, Anita. The thing is, I do not have to take anything to live (and fingers crossed that things stay this way for a loooooong time, if not always). So why would I want to take anything?

    I do realize it doesn't fully make sense, but I really don't like to take anything unless I really have to. And one poster mentioned the often forgotten truth: if you take pain medication for just anything frequently, you gradually have to up the dose - which means more and/or stronger pills.

    My periods used to kill in my teens - yet my mother would never allow me to take anything, and she had a real knack for finding my private stash of Advil. "What poison are you sticking into yourself" was the comment each and every time. She never did understand just how much it hurt. Same with other medication - if only possible with the given medication, she'd always make me dissolve whatever I'd been prescribed in hot tea...
    BC pills are completely different from painkillers, though. Hormones are really potent stuff - it only takes a little for your body to react to it, and it never gets to the point where you have to "up the dose."

    I don't like taking drugs either, which is why I decided not to continue with BC. But I don't judge others if they choose to do so. It's all about having the knowledge first to make the decision with.

    Quote Originally Posted by Lothlorien View Post
    And "just go for the hysterectomy"?

    Just last night I was reading statistics on how many hysterectomies are performed in the US precisely because of fibroids - which could have been dealt with or managed in a different way.

    You know, perhaps I might want to have children at some point, and perhaps I'm not keen on early-onset menopause at the age of 29...
    Hysterectomies won't give you menopause, since IIRC your ovaries will still be intact. The procedure will take out the uterus. Which I think is still a very invasive surgery (especially if you feel you might want to have children later), but it's really up to you. If it's the last resort and the pain is too much, don't feel bad about opting for it. That's what it's there for.

  5. #25
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    I forgot to mention that the fact that you said you were about two years off the pill. According to some of the research I did, it is very likely that your periods will become more painful and heavier (as they were in your teens if not worse) the longer you are off the pill or some form of hormone therapy.

    No, I don't have scientific proof, but anecdotal evidence. I have many friends who have gone off the pill to try to get pregnant. While struggling to get pregnant their symptoms seem to gradually or sometimes even more rapidly come back.

    My advice is to just kep asking questions of all your doctors. If the symptoms you have don't match fibroids according to the Internet, tell them that. Make them convince you or look for other answers. You know your body. They are just making educated guesses.

    That said, while there are typical fibroid symptoms, not everyone experiences them that way. It is one of the things about pelvic pain. There are so many possibilities that could be causing any discomfort or pain.

  6. #26
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    Quote Originally Posted by Anita18 View Post


    Hysterectomies won't give you menopause, since IIRC your ovaries will still be intact. The procedure will take out the uterus. Which I think is still a very invasive surgery (especially if you feel you might want to have children later), but it's really up to you. If it's the last resort and the pain is too much, don't feel bad about opting for it. That's what it's there for.
    One of the choices some women are faced with is if they want to take the ovaries too. My endo is so severe that I was told that was the best solution for me. But others can do fine with them still intact.

    The original poster said she was not diagnosed with endo based on the ultrasound. However, ultrasounds don't always show endo unless it is so severe as to deform the organs or attach them, etc. Mine wasn't diagnosed until I had an exploratory surgery.

    There are surgical options for fibroids. However, the concern is that the younger the woman the more likely it is they will reform.

  7. #27

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    To the OP, how big are these fibroids the sonographer reported?

    Your issue does kind of sound like endometriosis. My sister has that - lots of pain even sans period. BC didn't work, so they switched her onto Lupron for a while - an injection that puts you into a temporary medical menopause. It worked for her pain but the hot flashes were unbearable. An acupuncturist fixed her up for a long time. She stopped going once things got better, although now the pain is back, so she's looking for a new acupuncturist (she changed cities in the interim period).
    "Marge, if you're going to get mad at me every time I do something stupid, then I guess I'm just going to have to stop doing stupid things!" - Homer Simpson in the Mr. Plow episode

  8. #28
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    Quote Originally Posted by Cheylana View Post
    To the OP, how big are these fibroids the sonographer reported?

    Your issue does kind of sound like endometriosis. My sister has that - lots of pain even sans period. BC didn't work, so they switched her onto Lupron for a while - an injection that puts you into a temporary medical menopause. It worked for her pain but the hot flashes were unbearable. An acupuncturist fixed her up for a long time. She stopped going once things got better, although now the pain is back, so she's looking for a new acupuncturist (she changed cities in the interim period).
    Birth control didn't work for me either, it actually made things worse. Acupuncture is very good for all kinds of illness and injuries.
    Without fear you cannot find courage

  9. #29
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    Quote Originally Posted by Cheylana View Post
    To the OP, how big are these fibroids the sonographer reported?
    The sonographer didn't give me any details, just mentioned their presence.

    Again, it's possible I have endometriosis as well. I'm seeing my GP next week for the results next week, so I guess I'll find out more then. I had never heard of fibroids before, so thought I'd ask on here about other women's experiences.

    Whatever it is, I hope the doc can help me, and fast. It's gotten a lot worse over the past few months and this month it is just horrid. Woke up from the pain last night and it was so bad I took 2 pain pills - and then spent 2 hours nearly in tears because the stuff didn't kick in.

  10. #30

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    Maybe you have this as well as the fibroids? http://en.wikipedia.org/wiki/Mittelschmerz

    ETA: Regarding endometriosis, by the way, one of the screening questions is whether you have pain on defecation. So if it's not TMI, do you?

  11. #31
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    Thank you again to everyone who offered info and suggestions.

    Altai rose: no pain.

    I saw my GP today. She confirmed that the symptoms and the results do not add up and said that overall I'm too young to have this kind of issue. She feels that she can't treat this on her own and is sending me to a gynecologist (someone who specialises in this kind of stuff, she said).

    Apparently my uterus is somewhat enlarged and bigger than it should be and I've got cysts on my ovaries. The horrible pains I had a few days ago were probably when the cyst popped. Three fibroids, one 4.7 cm the other two are 1.2 or something like that. 4.7 cm seems quite large to me, but then what do I know...

    So, more waiting.

  12. #32
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    Waiting seems to be what Doc's do, but the right answers will come.

    Fibroids can cause extreme pain even not during period time, I know the single one I have causes me discomfort at odd times. It caused my uterus to tilt and that doesn't help either.
    Without fear you cannot find courage

  13. #33
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    Ovarian cysts can cause you to have the kind of pain you've mentioned and any female any age can get them. Ovarian cysts and Fibroids both can cause an enlarged uterus. So can a hormone imbalance. Worse things as well but we won't mention them unless they are the cause.

    You being in the range of late 20's is the only thing that has my worry button on. I do feel for you because I'm going through something similar but I am 37 and already had a child so it's bit more understanding for me. You're about 10 years younger and I can imagine my fears if this was happening then to me. Being a female sucks sometimes I will pray that everything's "minor" and that you find an "easy" treatment. Me too.

  14. #34

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    Quote Originally Posted by Lothlorien View Post
    She confirmed that the symptoms and the results do not add up and said that overall I'm too young to have this kind of issue. .
    My mom developed endometriosis when she was a bit younger than you are. It went undiagnosed for close to 10 years because she was "too young to have this kind of issue". Excruciating pain from what I gather.
    The last time I read about endometriosis (about 8 years ago) I remember that 10 years was not uncommon for obtaining the diagnosis.

    No offense to GPs but I never seek their advice on anything related to the nether region. Maybe I and my family have been unlucky with our GPs... In any case, when I move to a new city my first order of business after finding a place to live is finding the best OB/GYN practice in town (given my family history I'm a bit paranoid about it and I know that waiting time for a first appointment can easily be in the range of 6 to 12 months in a successful practice; so I line up a good gynecologist early - before I urgently need one).

    Good luck finding a good gynecologist! I hope you have a diagnosis and a treatment plan soon.

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    I didn't have endrometriosis, just fibroids. I was having so much pain that my doctor did laser surgery & it was extremely successful in eliminating pain. I only had a few small incisions around & on my navel & he burnt off the fibroids on my uterus.

    If you think you may want children you need to deal with this whether it is fibroids or endrometriosis because if you wait your fallopian tubes may be too scarred for you to get pregnant.

  16. #36
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    I spent most of my teen years with menstrual pain, heavy bleeding, all that fun stuff. Once got called a 'hypochondriac' by a doc, who finally ordered an ultrasound which diagnosed a massive popped cyst. I asked him if it was a 'hypochondriacial cyst or a normal one'. Never went back to him. Heavy irregular periods off and on. Pill helped. Off pill at 30, had son, never back on pill. Massive migraines, triggered by PMS/DMS/PostMS... I got to the point where I lived with the pain. When little cysts would pop, I would barely notice them.

    2 years ago, after I bled for weeks, my regular doc sent me to an OB. He diagnosed 'massive' fibroids, and tests found that I had a very small but cystic right ovary, the uterus was the size of a grapefruit and further tests revealed cervical cancer. I'm an extreme case, of course. Opted for a total hysterectomy, my days of birthing were done and I was quite done with the pain of the past 30 some years.

    What I found odd was when tampons would just come back out - later found it was because there was no room 'up there' for the things.

    I was lucky, my new doc was the head of the hospital OB/GYN department and pushed for extra tests. He also never discounted my concerns. I found what was helpful was to walk into appointments with questions written out. I also once told the nurse "I'm keeping my pants on and need to talk to him first."

    There's never 'too young' anymore. Push for extra tests and if you don't like the OB, go to a different one. Mine saved my life.

  17. #37

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    Quote Originally Posted by dbell1 View Post
    I spent most of my teen years with menstrual pain, heavy bleeding, all that fun stuff. Once got called a 'hypochondriac' by a doc, who finally ordered an ultrasound which diagnosed a massive popped cyst. I asked him if it was a 'hypochondriacial cyst or a normal one'.
    A way with words -- I would have liked to see his face.

    I'm also a little aghast that a GP has been working through the Lothlorien's issues until now. This is definitely gyn territory and complexity.

    I hope that you get whatever referral you need very quickly. 4.7 is good size but certainly not huge. The cystic ovary is something else that I would have thought they'd want to evaluate with blood tests somewhat contemporaneously to see specific hormone levels.

    Best of luck -- I think that a Gyn should be a lot of help, particularly if it is one who is more GYN and less (or not at all) OB.

  18. #38
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    Just FYI, here are my ultrasound results:

    The uterus is anteverted and bulky measuring 14x5.6x6.4 cm. The endometrial thickness of 10mm is normal. Three fibroids are seen. There is a 4.7 cm one in the posterior fundal region, 1.7 cm and 1.1 cm one in the anterior body. The right ovary has a volume of 5.1 ml. Four follicles are seen measuring up to 8 mm. The left ovary has a volume of 17.1 ml. Ten follicles are seen. There is a 3.2 cm cyst probably reflecting physiological follicular cyst but this could be observed on a review ultrasound in 6 weeks to confirm resolution. No free fluid. Badder and kidneys are unremarkable.

    Conclusion: Bulky fibroid uterus. 3.2 left ovarian cyst probably physiological but follow-up is suggested.

    So... I don't get the difference in volume between the two ovaries, it seems rather a large difference? Also, a couple of days after the ultrasound I had that horrible pain which gradually moved up to the right ovary and I think I felt something pop there. Yet the result indicates a cyst on the left ovary, not the right one...

    This definitely is problematic as far as having children goes, but then I've got nobody to have them with... (not saying that this won't change), but still. I think knowing my family medical history would definitely help, but I know zilch.

    On that note, do fibroids get it the way of one's sex life?

    tarotx - Sorry to hear about your experiences, tarotx and thank you for your thoughts. Praying for the same for you.

    dbell - yikes... so glad to hear you found a good doctor eventually. How is your health now? I have a friend who had a hysterectomy and then recovered brilliantly, but then I'm not sure what her medical history was.

    Ania and barbk - the reason why my (brand new in fact) GP has been handling this is because I only realized a couple of months ago that I probably should get this looked into... and I was in the process of an interstate move at the time and would need to find a local doctor. I must say that I haven't seen a GP in a while... anyway, I think the doctor is a good one. She did send me for the ultrasound immediately and now gave me a referral to a gynecologist who apparently also is very good.

    And now, another question... I've never seen a gynecologist (a combination of a mental barrier and lack of need until now). What should I expect?

  19. #39
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    For me, the fibroids and other issues absolutely got in the way of my sex life. It went from very healthy and fun to non-existent. Of course, my ex bf was a total tool, but it was painful and sporadic and probably contributed to it ending. After hysterectomy? Well, the Premarin is a wonderful drug when given in the right dosage and I'm a happy woman again. (May have to do with a change in men, rather than the 'change of life' though)

    Gynos - find one that will talk to you first, without the standard 'spread 'em' exam. I lucked out, mine was very in demand, but I managed to get an emergency appt. because the scheduling lady took pity on me. He's since delivered a friend's child (high risk) and she raves about him. Ask around at work, friends, your doc's office. Google them, I found lots of info about my doc and the oncologist on medical sites. I found it helpful to walk in there with a list of questions. He and I used to joke about my book with the sticky notes.

    Speaking of internet searches, find a good site (mayo clinic, webmd) and stick with it. I found that the web is full of horror stories, but what you need is sound, practical advice.

    Here's an article I found explaining fibroids and pregnancy. http://efibroids.com/uterine-fibroid...-and-pregnancy

    And a link to a women's health board with some fibroid and cyst information. http://forums.about.com/ab-womenshealth

    Side note - this all led to a very healthy discussion with my sister (who had an early hyst) and my mom who is still dealing with a prolapsed uterus. I've become a walking billboard for early testing and diagnosis with friends and their daughters. For some reason, women don't normally talk about things like this, which is a shame.

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    Quote Originally Posted by Lothlorien View Post

    So, more waiting.
    I have nothing really to contribute in terms of fibroids, but I always think it's a good sign when things aren't done pronto. If it's really serious it's amazing how quickly the medical system can work

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