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Endometriosis - What now?

WildCard

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First of, I understand this can be a touchy subject. And, since it applies to me, I would appreciate it if everyone refrained from sarcasm.

Thank you.
*************

OK, I knew I was at risk for Endometriosis, especially since my mother had it really bad. All through high school I had very, very painful periods. I missed a lot of days because of it. However, we went to a OB and they never found anything to indicate that I had it. Birth control pills did nothing, so I eventually quit taking them.

It was until the past six months that my symptoms got really, really bad. I was constantly tired, even when I slept all day. What I thought were strained muscles in my back and legs simply continued to hurt, getting worse with time. My menses became either extremely long, or would skip for no reason.

I finally went back to the OB on base and after several tests, they concluded that I had Endometriosis. Further investigation, they told me from the amount of scarring and lesions on my fallopian tubes would render me infertile.

So, I can't have kids. It never really bothered me before, but it seems that now that its "been taken away" I'm a little disturbed. I guess it's a good thing I wasn't dead set on having children.

Anyway, I'm not sure how to take this. I won't lose my job with the military, which is good, I will be put on meds for when things get bad, but I won't be able to have surgery for another two years.

Any advice ladies? Perhaps some of you have encountered this yourself? My mom seems to be taking it rather badly and has pulled religion into it. I believe she told me that since I "pursued a career not meant for a woman" God "cursed" me to be barren.

And then they wonder why I won't go to church. :doh:
 

Aquarelle

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:( I'm sorry to hear this. I've not dealt with anything similar and I don't really have advice, but I can imagine that it would be difficult to hear that you can't have kids, even if you weren't sure you wanted them.

It seems strange that your mom would tell you that this is a punishment from God.... when she had it as well! Did she choose a career not meant for women, too? :D I don't mean to belittle your mother - I'm sure it's upsetting for her and she doesn't mean to hurt your feelings, but you'd think she'd be a bit more sympathetic!

Anyway, take care, and try to look on the bright side - at least you will feel better physically, and if you do decide you want kids someday, there's always adoption.
 

Domino

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Bless your heart. :(

Endometriosis is a physical condition, not God cursing you. Sometimes I think people believe the painful and unhappy physical experiences they have are easier to attribute to God's disfavor than see it as purely something going wrong. Believe me, I've been in that position a thousand times. I'm still in it, still struggling with it. And as to being in a field "not meant for a woman", I'd be hexed for being a mechanic, so cast that superstitious thought from your mind. You should be proud of your achievements.

However - from one lady to another - I know FULLY what excruciating pain during your cycle can do to you, physically and psychically. It's pinned me down since the age of 12. I can still remember December 1989 being a month of a very rude awakening into adulthood. I don't have your condition - my pain comes from a severely over-active nervous system - but I've been to the edge, where I'd black out and my body would start to go numb from the waist down as a sort of 911 maneuver. I ready to kill myself to make the monthly nightmare STOP.

Suddenly being told that you have a lot of scarring and can't have your own children must have been a really nasty blow. I'm so sorry. I've been of the same mind as you, that I hadn't had my heart set on it, but the idea of it being taken from me would be very hard. I've never met that man that made me WANT to have kids so that must make a difference, but as a woman, I'd want it to be part of my function by MY choice.

I'll tell you what I did to help, and I hope it will make some difference for you. I don't know how much control you have over your diet presently, but when you can, try going organic. When I cut out meat (not good for everyone) I noticed a HUGE difference in my pain levels. I went further and drastically reduced my intake of any and all omega-6 oils (such as are found in almost every shelf-stable baked or fried product). The healthy ratio of omega 6 (inflammatory) to omega 3 (anti-inflammatory) should be something like 3:1, though I've had, through my own problems, to reduce that ratio even further with omega 3s taking more of a lead.

This may sound a little "new age"y, but I went through a long stretch of time making peace with my body, spending a lot of alone time in silence so I could hear the rhythms of my own body and let her know that no matter what, I didn't blame her for what was happening, that we weren't enemies, and that I would fight for her. That brought a lot of calm to my physical body as well as my mind.
 
O

Oberon

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There's another thing you can do, though I would think twice and three times about it before doing it: Go on the Pill, and never come off.

The five sugar pills in a monthly pack of oral contraceptives are there mostly to make you feel normal. They really serve no medical purpose. You could ask a doctor's opinion, and if he or she concurs, just be on oral contraceptives 24/7/365. You won't menstruate, and no menses = no endometrial pain.
 

Domino

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She said that the pill didn't help her at all. That's usually the first line of defense, and it appears it hasn't worked out. I know there are ways to STOP the cycle completely so that you only menstruate every 3 months or so, but I've always looked at something like that as a court of last resort. I can't imagine what it does to your hormones.
 
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Oberon

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She said that the pill didn't help her at all. That's usually the first line of defense, and it appears it hasn't worked out. I know there are ways to STOP the cycle completely so that you only menstruate every 3 months or so, but I've always looked at something like that as a court of last resort. I can't imagine what it does to your hormones.

The bold part... that's what I meant. It's not the last resort, though. The last resort is a hysterectomy.
 

Blown Ghost

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I've known a few ladies who have had this. I'm a guy so I don't have the requisite bodyparts to understand entirely, but I've always been curious what the pain from endometriosis and ovarian cysts is like. What kind of pain it is, where you feel it, if it happens some times of the month more than others, does it get worse when you move or do certain activities, etc. I am interested to hear this from anyone who has either of these conditions because I'd like to understand how it affects your daily lifestyle in ways that a medical article wouldn't cover. Please don't feel the need to share if you don't want, of course. I wish you the best of luck in fighting it.
 

Halla74

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So, I can't have kids. It never really bothered me before, but it seems that now that its "been taken away" I'm a little disturbed. I guess it's a good thing I wasn't dead set on having children.

Firstly, I am sorry that you are experiencing pain and discomfort, and I wish you a speedy recovery to managing the difficulties of endometriosis. :hug:

Regarding children, please look into the possibility of cryogenically having your eggs preserved.

Your eggs can be harvested, and kept viable for a loooong time on ice.

I have my kids' embryonic stem cells cryogenically preserved, and they are guaranteed to be viable for 20 years.

Human eggs have thicker cell walls and membranes than embryonic stem cells, so they should be good as long, if not longer.

If you are willing to explore this option, you can have a surrogate mother carry your children and bear them for you. Maybe a relative or a friend would be willing to do this for you. I know one forum member here who did so for a family member. It is possible.

From the perspective of a male, that is the most advice I can offer.

Good luck, and God bless you!

-A.
 

Usehername

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There's another thing you can do, though I would think twice and three times about it before doing it: Go on the Pill, and never come off.

The five sugar pills in a monthly pack of oral contraceptives are there mostly to make you feel normal. They really serve no medical purpose. You could ask a doctor's opinion, and if he or she concurs, just be on oral contraceptives 24/7/365. You won't menstruate, and no menses = no endometrial pain.

I have done this, and while I know it is not relevant to the OP (I'm sorry to hear:( -- no words can describe how much that sucks), in case anyone else is going to try this, you will eventually bleed, probably unexpectedly, so have supplies!

Coincidentally, I am in the waiting room waiting for my first US experience at a health clinic to get a BC 'scrip, because I am scheduled to have debilitating cramps my second day of teaching 101 and I am nervous enough as it is!
 

Usehername

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I've known a few ladies who have had this. I'm a guy so I don't have the requisite bodyparts to understand entirely, but I've always been curious what the pain from endometriosis and ovarian cysts is like. What kind of pain it is, where you feel it, if it happens some times of the month more than others, does it get worse when you move or do certain activities, etc. I am interested to hear this from anyone who has either of these conditions because I'd like to understand how it affects your daily lifestyle in ways that a medical article wouldn't cover. Please don't feel the need to share if you don't want, of course. I wish you the best of luck in fighting it.

Many experts believe that severe contractions constrict the blood vessels feeding the uterus. The resulting pain can be compared to the angina that occurs when blocked coronary arteries starve portions of the heart of food and oxygen.
-mayo clinic

This just describes severe dysmennorea, aka menstrual cramps, the OP probably has it worse. :(
 

WildCard

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@Blown Ghost:
What kind of pain it is, where you feel it, if it happens some times of the month more than others, does it get worse when you move or do certain activities, etc. I am interested to hear this from anyone who has either of these conditions because I'd like to understand how it affects your daily lifestyle in ways that a medical article wouldn't cover.

I'll do my best to help you understand. Just bear with me because I may use wierd analogies to help. :)

All of my pain (usually) is during menstration. It starts with a sensation similiar to a pinched nerve in my lower back, then goes down my legs. I also have pain in my lower abdomen that, when I described it to my male buddies, immediately said that it was similar to being kicked in the nuts.

If it's going to be a bad month, I will begin to get nauseous and see spots. I usually bleed so badly I must wear an adult diaper or risk looking like a murder victim (and to save my poor sheets). This means I must take iron pills while this is going on to prevent my iron from getting too low.

Sometimes activity helps, usually in pacing. So sometimes I will pace for hours. Also, a temperature below 78 degrees makes the cramping much worse.

Oddly enough, I also cramp during ovulation. Similar symptoms as described, only much more mild.
 

targobelle

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um may I be bold and ask how bad is bad scarring?

I just asked b/c my mom had really bad scarring and even a blown fallopian tube due to a burst eptopic pregnancy, and then managed to have 2 more children. I don't say this to get your hopes up, I know it's painful and uncomfortable, my sister has it, she still had 2 children but has had a slew of other complications.

As for your mom she is obviously having a hard time with the news. hopefully in time she calms down and becomes more rational. You are in no way responsible for medical conditions that you cannot control.. Someone else made mention that she(your mom) had it and suggested that she (mom) too did something to upset God.... *rolls eyes* That made me laugh.

Wish there was something they could do to help. I would seriously look into options that help limit your menstrual cycle.
 
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kyuuei

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Being a fellow military chick, I feel your pain.. not everyone is very approving of my career choice either. Luckily, my immediate family is very supportive and proud.

Back to you. Your mother is obviously having trouble accepting the news.. if it wasn't your career, she'd probably find something else to blame it on though. People tend to do that. Imo, if anything, the correct religious thing to quote would be that God never gives one more than they can handle. God doesn't set people up for failure.. only for the chance at success.

I agree with Halla's statement.. being infertile doesn't mean not having kids anymore, so if they are in your future, you'll be just fine. :) Whether adoption, or working with children, or having a surrogate mother is in the future, you'll find a way to be satisfied and fine with it. I think I would be disturbed to have the choice of natural pregnancy taken from me suddenly as well, even though I have no intentions of having my own children.

As for the Endo itself. Sorry to hear it. The pain is there, and always will be. My hips have damage from the wear of the gear overseas, which sped up a normally quite slow process. When it comes to things like this, knowing your body is a big deal. I would normally recommend proper hydration (as proper hydration is known to ease the pain of normal periods as well), but a fellow soldier already knows the importance of that.

Currently, Im in a situation that you described above.. the pain being so harsh that I'm taking more than recommended doses of over the counter medications to offset it so I can operate, and I'm way more tired than I ought to be, but so far no Endo has been found. Outside of pain medication, nothing else much helps me, and I just have to do my best when I can. This makes me worry that endo could be a diagnosis in my future.. :\
 

JivinJeffJones

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I had a good friend with severe endometreosis who was a missionary. Going out specifically to do God's work in various 3rd world countries for years didn't alter her condition one little bit. Not that that's why she was doing it. So shut yer yap, WC's mom! :steam:
 

Domino

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I cramp during ovulation too, sometimes ferociously. I have a friend who does the same thing. It's something that started up some time within the last 10 years. Used to be I'd just get really hormonal and my ovaries would start saying "BAAAAAABBBIIIEESSSS!!!!" while I dutifully ignored them. Now it's my ovaries shouting at me to breed while cramping.

Nice.
 

Such Irony

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I'm so sorry to hear that WildCard.

Just curious as to why have to wait two years to have surgery.
 

Blown Ghost

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...

Sometimes activity helps, usually in pacing. So sometimes I will pace for hours. Also, a temperature below 78 degrees makes the cramping much worse.

Oddly enough, I also cramp during ovulation. Similar symptoms as described, only much more mild.

Ouch! Thank you for writing that for me. That must make your job extra difficult. It is disappointing that your mother isn't supportive. How about your co-workers?
 

Dyoni

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My mom seems to be taking it rather badly and has pulled religion into it. I believe she told me that since I "pursued a career not meant for a woman" God "cursed" me to be barren.

WTF.

Anyway, I have the same problem. It's painful, and a major pain in the ass. My mother and all her sisters had the same problem, and the cycle of 'treatment' usually was that you deal with it until you can't deal anymore, then they will stick an instrument through your bellybutton and laser that shit out of you. Then it will eventually grow back, and you will just have to keep getting it done every few years until you have a hysterectomy.

I really don't want children, so I guess the sterility part didn't bother me. A lot of my relatives that had endometriosis still bore children, though, so you might be okay in that respect.

Some people already mentioned birth control. If you're not already on it, I would definitely recommend it, too. You might consider methods of birth control that make your period stop completely, or make them come less frequently than every month. I haven't tried this since I find the idea of not having a period every month to be sort of unusual, but every doctor I've talked to has strongly recommended it.

Good luck!
 
F

figsfiggyfigs

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I've had cysts on my ovaries before, so I know the pain you are going through; it's unbelievable. Mine actually came too often when I was younger, that's why the cysts occurred in the first place. When I first noticed something was wrong. the pain was so powerful, that i felt like someone was stabbing me, I started seeing black dots and shaking, shortly after, I passed out. My mom thought I was over reacting, but it got worse from there. Some nights I couldn't even sleep, I'd be crying from the pain so often. I lived on Ibuprofen during those days. They regulated be with BirthControl. that stuff is magic.

Sometimes I wonder how much damage it has done on me, even though my doctors said that I would be fine. Something that can be that painful must leave a trace. I've gotten so used to the pain, that sometimes I can't tell the difference between regular pain and pain that is not supposed to be there.

I don't have Endometriosis, but i'm sorry to hear you do. It must be very difficult for you and your mother. I can't imagine how much worse your condition must feel like.

if it makes you feel any better, know that I too know how it feels to go through something that causes you pain and then have your parents tell you that you were "cursed by god" for something you do not think is wrong. So there are members on the forum who you can relate to : )

I for one, admire that you're in the army, it's something I've always wanted to do. :)
 

Domino

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I wish I could tolerate birth control pills. They totally do me in, make me horrendously ill. The up shot, periods don't hurt. The down, my whole body felt like it'd been slammed in a car door and my heart rate was skipping and wildly fluctuating.
 
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