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Author Topic: Living with Endometriosis
Lauren057
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Hey everyone [Smile]
Because I haven't seen many posts concerning endometriosis, and because I am eighteen, and I have endo, I thought I would start a post for people with it (if there are any others, I just assume there must be lol)
Something I have noticed about endo, is that not very many people seem to know about it, so here's my little bit on what it feels like to be ME with endo. Obviously, i cant say what sue down the street feels like, but here are some things that have personally affected me.
I was diagnosed when i was 17, because over a period of about a year (16-17), things got OUT OF CONTROL. What I mean by that is my period was last THREE WEEKS. I would go through stages where I would lie awake until three or four in the morning, and know I was supposed to get up for work at five, and know it was just not in any way possible, going to happen.
But, the thing about having that kind of pain, that on-the-floor-in-the-fetal-position kind of pain, where you're not really sure what you're going to do, but you're really, really, sure that moving is not going to be something that you're going to be doing in the next few hours, is that you actually get to know your body really well. You start to realize when you can move through and keep working on stuff, and when it's time to take some pain meds and back off for a while.
The best news about endo is that there are ways to manage it. Right now I'm on BC pills for hormone therapy, and have had a couple of ultrasounds to check things out. I can't say I've been glad to have endo, because it has made some things more challenging than others, but all in all, with a good doctor and supportive friends/family it's really manageable, or at least it has been for me. I'd be really interested in hearing other young women's experiences with endo, along with any magic tips you might have (lol, i'm really not sure there ARE any magic tips to this, but I'm always hopeful!) or any stories and whatever anyone wants to share.
As for me, I have my period today, and it doesn't last three weeks anymore (thank goodness) but is more like 4-7 days, maybe 10 on a bad month. I've been almost pain free for the last few months, and my lower back muscles are feeling pretty bruised and swollen (actually, I can see thee swelling, but with my heated back pad and some tylenol, it's nothing unmanageable.
Sorry for the novella, I just feel like while there is lots and lots of stuff out there for older women, stuff for teens/YA is a little more scarce!!
Thanks
Lauren

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Lauren :)

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CraftyKid
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Hi Lauren!

I am also a young woman in her early twenties who was diagnosed at 18. I too had the unbearable fetal-position pain, and that is what made me go to the doctor. I had always had very heavy and long periods but the pain didn't really start in until later. At first it was mostly extreme stomach cramps, but then I started having intense back pain and pain at the tops of my thighs. My mom also suffered from endometriosis her whole life and had trouble having children because of it. My doctor put me on birth control which helped me tremendously, and of course I supplement that with advil during that time of the month. I also found that heating pads help my pain as well.

I understand what you're going through and I've missed school and work because of it before. Fortunately, people have been understanding.

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crazyhorseperson
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I haven't been diagnosed with endo, but I show most of the signs (unreasonably heavy period; crippling cramps - similar to yours, CraftyKid; almost-constant pelvic pain; IBS which can be a contributing factor or simply be endo symptoms disguised as digestive issues; urinary issues, where I get pain at the level of a UTI very easily but there is very seldom any bacteria present, even during a thorough culture) and I've been trying to push to be diagnosed.

I am on a triphasic combined pill, and it works quite well all month, but ever since I switched back to it from the shot (I was on the pill before the shot and only had one shot before switching back to the same pill because the shot caused constant bleeding throughout the three months) I've been having period pains and heaviness similar to before I was on the pill, with the exception that because of the pill, it stops after about six days instead of lasting for almost a month.

I mentioned my concerns to my nurse practitioner the last time I was in. She had me get an ultrasound for irregular bleeding, and they saw a cyst (which I felt pop that morning) on the ultrasound, but it came back normal for irregular bleeding. I mentioned specifically my concerns about endometriosis, given my history and current period symptoms, and it was like she blatantly ignored it.

Should I try to make an appointment with her specifically to discuss the possibility of endo? She did say we should wait until after the third month of pills (which I'm on now) and see if it continues to be this bad, as it could be my body adjusting to the hormonal changes of the past few months. Should I instead try asking at the office for a doctor with experience diagnosing and treating endometriosis and related pelvic disorders? I like my current doctor, but I'd much prefer one that completely listens to my concerns and attempts other testing. (I understand that the only true diagnosis for endo comes from a laproscopy.)

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Heather
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Is the current doctor or clinic you have seen about this specifically OB/GYN, or is this a general physicians office?

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crazyhorseperson
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It's a general practitioner office, but I see my current nurse practitioner as an OB/GYN and general practitioner, if that makes sense. It's not any specific place, but it's the most convenient (all of my family goes there because it's the nearest adult doctor office.)
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Heather
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Okay, so it sounds most likely to me, then, they soundly suggested what they did, and I would stick to their plan. So, wait out this last month of pills, maybe schedule an appointment in advance arojnd the time you will be done with them so you can all reevaluate together.

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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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I might actually wait until spring break just because it'll be easier to arrange an appointment without worrying about classes (I'll finish these pills at the beginning of my spring semester, and with how my classes are scheduled, I have trouble getting an appointment that's convenient in terms of transportation and classes) and that way I can take note of if the fourth pack (assuming I'll get to that one, and I think I will, as spring break isn't for a few months) improves or not. I know I put my body through a lot of stress, because I was on this pill for about three years, then got only one of the Depo shots before returning to the pills...so I know my body is in a lot of hormonal upheaval at the moment. I'm just regretting switching to the shot in the first place, because my withdrawal bleeds before it were quite bearable and the ones I get now confine me to a bed (I haven't found that pain medicine helps very much at all with my cramps, for some reason.)
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crazyhorseperson
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Update: I'm calling tomorrow to make an appointment with the gynecology practice near the college (assuming they don't need a referral, because if they do I'll just have to pick up the pile of paperwork and take it to my other doctor). For some reason, each time I masturbate (non-penetratively) I bleed soon after orgasm. When I'm with my boyfriend and orgasm from penetrative sex, I don't bleed at all. Also, I have massive, disabling cramps as soon as orgasm hits (when I'm doing it solo, not with boyfriend) that feel approximately like I'm being punched in the uterus.
When I was first put on the pill, the pediatrician didn't make any effort to find out what was causing my period issues, and instead shoved me on the pill. My GP told me previously that her 'treatment plan' is to switch me from pill to pill, rather than do any sort of tests for hormone imbalance or anything similar that could cause these issues.
After the appointment at the new place, I'll make another update so that if anyone else has similar (cramping/bleeding after orgasm) issues, they can see my post and have at least some idea of what could be the cause.

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Heather
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Just FYI, if you don't already know this, a screening for endo will involve an ultrasound. Hormone imbalances are also not a likely cause for pain and unexplained bleeding.

With a provider investigating all of this well, I'd expect them to do a bimanual and pelvic exam, a full STI panel and potentially an ultrasound.

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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The strange part is, I've had all of those done at some point or another (well, I've had a few STI tests but not every single one, but I was low*er* risk because boyfriend and I have been monogamous for three years and were each others' firsts), and the ultrasounds both showed cysts on ovaries but nothing else. The pelvic exam and bimanual exam were both normal, with the exception of the fact that my inner-thigh ligaments are so tight that I had trouble putting my legs far enough apart, so the nurse practitioner ended up *forcing* them apart, which hurt... I wasn't able to call today about an exam, but I'm calling ASAP and even though they'll get a records transfer, I'm honestly hoping they do all of the above tests again, just to be sure. I had a blood test for anemia after the heavy bleeding started and it showed up normal.

Edit: By the way, thanks for helping! I knew that ultrasounds are used for endometriosis, but I thought they weren't as effective because sometimes it is too small to detect. (On the most recent ultrasound, they did have trouble finding my right ovary, which was the one that had evidence of a cyst...transvaginally, she had to put the probe in at a very odd angle, and she actually commented on the weird placement of it! Not sure if that's related)

[ 02-03-2014, 06:16 PM: Message edited by: crazyhorseperson ]

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Heather
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For sure, if they all haven't been done in a while -- the last year or so? -- or you have had new symptoms since then, they'll probably want to repeat them.

I'd just go ahead and write/type down as much of this history as you can yourself before going in: all the symptoms, tests and when you had them done, things you think may make things feel worse or better, the works. That way, if you space anything in the moment you are covered, and same goes with if your previous records didn't include anything.

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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Yes, I do think I'm going to do that. If I had known better at 15/16 when I was first shoved on the pill, I would have asked the pediatrician if there were other options, but my mother scheduled the appointment and basically told them she wanted me put on the pill, because 'it helped when I was her age!' (yes, mom, but it obviously failed somehow because you ended up with an unplanned pregnancy) ...excuse the tangent. >.> That and the way she was so dismissive ("It's normal to clot bigger than a quarter several times a day!" "It's normal to soak a heavy pad each hour for several days in a row!" "It's normal to occasionally bleed for a month!" etc.) made me hesitant about bringing up my concerns, because everything I thought wasn't supposed to happen, I was told was 'normal'. (This makes me think she had similar period issues, unless it was just her reluctance for me to go to a doctor and get 'the talk' from someone who might tell me how to be safe, instead of just 'don't do it'.)
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Heather
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Well, you know, back in the day (cue the creak of the cane I don't have just yet), what they did if there was any issue was, in fact, just put you on the pill. A lot of us were on the pill from a pretty young age because of having menstrual problems, without having asked for it: it was just what was done. There were not a lot of other things available, and also not even information about things like endo or polyps, and that did seem to work for a lot of people, so it's not that odd for her to be thinking that way.

And yeah, she may well have been saying it was normal for her, so that is her understanding of what's normal.

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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I think also the fact that the symptoms worsened after going back to the pill from the shot could be that there are residual hormones.
Changes between pre-shot pill and now:
-Started Wednesdays/Thursdays before; now, it started Friday the past few months, but I'm having brown spotting and light cramps *today*, instead of later, this month
-Much heavier bleeding, clotting came back, and really bad cramps
-More acne (which started when on the shot)

I know my body is very sensitive to medications, because I had to be put on a special low-dose medicine for GI issues because the other dose (usually the lowest given) was too high, and I've had similar reactions with pain medicine (Vicodin especially, one pill knocked me out and half of one made me loopy - normally it takes two to make someone very tired, and that's what one did to me!).

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Heather
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Totally put all of that in your notes for the doc! [Smile]

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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I think I'll start writing them down now, actually, since I have time (for once, we had a snow day today so I got more work done than I expected to and have free time, which is rare at college). Thanks for being supportive and helping explain things. [Big Grin]
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Heather
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I really like, myself, going into a doctor, especially a new one, and giving those notes with my health history and current symptoms right to the first nurse or clinician I see, so they can give them to the doc to look over before I even see them.

That gives them time to read them and form some questions, and then it's all right there for both of you.

I feel you with this stuff: health mysteries, especially painful ones, are absolutely maddening and can also feel really scary. Here's hoping you have some answers, or at least a start to them, soon.

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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I hope so too! The part that's confusing to me is that I had spotting before starting the placebo pills, immediately following a non-penetrative orgasm, and the spotting has continued to today but now includes some cramping. I have almost constant pelvic pain that feels like cramps, and then a crushing cramping pain immediately upon orgasm (as I've already mentioned - just realized that), but the bleeding immediately following orgasm only started this month. And now I'm having spotting at the start of the placebo week, along with very mild cramping, and it's brown instead of the usual pinkish beginning blood. I knew my bleed was likely to start earlier this month because it was a few hours earlier last month than the one before, but I didn't expect it to start now! (Sorry if it seems like I'm rambling, it's just been bugging me - I'm not looking forward to a potential week of really bad cramps, especially now that I'm back in school.)

Edit: Another reason it might have started this early is because about six of my friends all synchronized and had their periods last week (I'm at a college with almost all girls, so we synch up pretty often, but being on the pill, I didn't think that would happen to me).

[ 02-03-2014, 07:43 PM: Message edited by: crazyhorseperson ]

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Heather
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No, it's okay. Just wish I had some answers for you, but alas, you'll need to start with an exam and at least some initial feedback from the doctor who examines you.

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Heather Corinna, Executive Director & Founder, Scarleteen
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Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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crazyhorseperson
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I'm probably going to call tomorrow since I have all morning free from classes, but unfortunately an appointment might have to wait, because we had a big snow today and an ice storm is predicted for tomorrow night - and then another snow storm at the weekend! (PA hasn't had this much snow in years!) At the moment, I'm doing a lot of self-care to help with my anxiety and the anticipation of a potentially stressful week - I've found wonderful line drawings of horses to color on my laptop, and that's always relaxing. When I get answers, I'll be sure to update you guys - I noticed other forums where people had similar bleeding problems but the cause was unresolved, so I want to help out anyone else with similar symptoms any way I can.
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crazyhorseperson
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Another update: I think I might have realized why the bleeding is different this time. Depo-Provera stays in your system for a few months after it's not effective, right? And for some women, it causes menopausal hormone levels, just because it 'takes over' the body's job of producing hormones. This is the third month of pills since switching, and I think it might be that the shot (even though I only had it once, and then switched back - number of shots doesn't effect how long it stays in your body, though, from what I've read) made my body stop producing hormones, so it's fully dependent on the pill hormones, hence the low-level spotting almost immediately after taking the first placebo pill. It is gradually getting heavier, but I'm not cramping. I don't know if I should be grateful that it's more pleasant than usual, or annoyed that it's different!

I just wanted to run this theory by you, I'm planning to mention it (as well as bringing in the page of symptoms, like you suggested) to the doctor when I have my appointment, but I still wanted to just run the theory by you. [Big Grin]

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Heather
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Well it is not so much it stays in the system as it is that it often takes folks' bodies a little while to regroup. It also does not take over the bodies job of producing hormones, so much as it influences their levels with the synthetic progestin it is.

When seeing healthcare providers with something like this, I tend to think it best to leave the theories to them, and just do our part to supply all the information we can about our health history and symptoms to theorize with. Doctors often have limited time, and we obviously want to use what time we can get with them best, and having them correct our own theories tends to, IMO, not be a very productive use of that time.

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Heather Corinna, Executive Director & Founder, Scarleteen
About Me • Get our book!
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

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