|
Post by ouchy on Mar 24, 2007 11:57:46 GMT -5
It seems like a lot of the pain women experience w/ endo is emotional--from being scared they won't be able to conceive. Yes, I'm currently pregnant, but becoming pregnant was never a concern of mine, even with hormonal issues that pose a way higher infertility risk than endo. I would have been cool with never becoming pregnant. It was never a top priority, as I could have been just as happy traveling the world without any worries about taking care of another human being. In addition to traveling, I could have also had the opportunity to pursue my doctorate sooner rather than later. If I were sterile, I could have adopted.
My question is: Does anyone still experience most of their pain in the physical sense? Knife-stabbing pain? Crazy labor-contraction-type pain? Make you curl up in a fetal-position-type pain? Is anyone's biggest concern still the same as it was when younger??? The physical pain experienced each month? That has always been my biggest concern with this endometriosis, that and the thought that my organs were being tied together and the pain each month, mainly because of statistics, I guess. Most women with endometriosis are fertile, so I never really worried about that. I know how to chart my cycles, and as long as ovulation was happening, I knew I was pretty good to go, just a matter of timing.
Anyone else feel this way? Biggest beef about endo being the pain and what it does to your insides?
|
|
|
Post by erzulie on Mar 24, 2007 12:04:30 GMT -5
Yeah, I do! Of course you already know I don't want to get pregnant anyway, so i don't know how I would feel if it did, but the pain is pretty bad by itself! I get really bad stabbing pain each month and it shuts down my life for at least a day. I really hate it when I get random pain at opther parts of the month, even though it's not as bad it just really bothers me that I can't even predict when I might be in some kind of pain. it can hit at any time, and it's not normal, and it bothers me. And I get scared of what could be happening to my guts. I'v felt a little better since my surgery because nothing was too bad then, but I still worry because I know I have scar tissue on one fallopian tube and my utero-sacral ligaments are getting deformed, so I'm scared of what could happen later if it keeps getting worse. I worry about possibly needing a hysterectomy one day and I REALLY don't want one!
Thanks for making this thread, because I feel left out a lot. Some people talk so much about interfility problems that I think they must think people like me who aren't concerned with that have it easy, and I really don't think we do! Sometimes my complaints of pain get lost amidst complaints of infertility or fears of infertility and I wonder if people even care what I have to say. I think the physical pain does count for something! If that were the only symptom--and for the majority it is--I think we would still need this forum!
|
|
|
Post by ouchy on Mar 24, 2007 12:21:41 GMT -5
Thanks for your reply. I'm glad I'm not the only one. I was beginning to feel a little left out, too! I guess that one of my fears is that this forum will eventually turn into an infertility forum, and that wasn't the intended goal at all.
|
|
|
Post by cherry on Mar 24, 2007 12:26:04 GMT -5
I definitely don't think anything less of women who are not looking to have children, cos lately I am wondering if I want to. Maybe I am just ducking out in anticipation that there could be problems with conceiving etc. The emotional pain of endo goes way beyond the threat to infertility, I am just worried that a day will come when it makes me somehow less of a person, cos of the physical effects sapping YOU out of the things you do. At the moment my concern is with the pain, and what the hell is going on inside if it hurts this bad. It has been a steady progression since just before I was diagnosed, and since my hormone treatment, the pain seems to be getting more severe everymonth, but worse than before. The effects of the pain on my life are my biggest worry. It sucks your personality out of you, makes you into this hunched up, crying, depressed robot. As has been said, I am prepared to adopt if I simply can't have a baby and still want children that bad. But again, a hysterectomy is also a nightmare of mine. The thought of donating marrow or a kidney doesn't bother me but a hysterectomy does, it terrifies me. And in my mind, the pain is the one thing that would bring about that kind of drastic action. The pain frightens me more now than when i was younger, cos it is progressing in it's severity. When I was diagnosed I never would have imagined this, never mind within a year of diagnosis, a pain so severe it makes me puke, knocks me off my feet literally and makes me a miserable person xx
Edit: Also, reading the descriptions of some womens' pain on here, and the involuntary physical reactions they have, it scares the living daylights out of me xx
|
|
|
Post by ouchy on Mar 24, 2007 12:31:56 GMT -5
I guess I was relieved to have a second lap a couple years after my first to see how things were progressing. My appendix did have to be removed, and my colon had to be freed-up again, but my tubes and ovaries were still unaffected, although the back of my uterus was covered in it. I guess for me, having a look inside when things start getting extremely painful helps me cope and know that even though my pain has made me pass out before, my insides are a lot less affected than what I imagined my insides to be to feel like this!
|
|
|
Post by cherry on Mar 24, 2007 12:44:20 GMT -5
Thats what I am looking for in a second lap, to see what is going on and what has changed etc. I knew endo was the reason they had a look the first time, but I didn't think much about it, didn't look into it cos I was convinced there'd be nothing wrong. Then I had terrible pain after flying, just before the lap and I knew ther'd be something wrong, so I just ignored it instead. This time I will have the list of questions, will want to see the letter to my GP when it's done, and have it taped. I feel like I'd be going into educated this time around. I know what utero-sacral ligaments are now! I am scared of what it could look like inside now, just cos of the weirdness and severity of the pain I feel some days. You just wonder sometimes 'what on earth is going on in there, it feels like little imps are having some helluva party and are trashing my insides' And the way you are treated by some people, cos through no fault of your own, your life grinds to a halt every month (and sometimes between) is not fair. You're not scrunching your face up like that cos you want to exercis your facial muscles. xx
|
|
|
Post by erzulie on Mar 24, 2007 14:51:16 GMT -5
I think it's usually not as bad as it feels though! I was so scared before my laparoscopy because the pain was getting so much worse so fast. It was to the point where I was in constant pain, and pretty bad pain too, so I was terrified half my guts would need to be removed. In fact, it really wasn't that bad. It's a relief to know for sure though!
By the way, I never said I wasn't looking to have children! Someday I might, but I don't plan on getting pregnant. It's just not one of the options that appeals to me.
|
|
|
Post by scarlett on Mar 24, 2007 15:08:58 GMT -5
I think there are so many different elements to endo that people can start to feel like maybe they are the only ones dealing with a certain part of it - pain, infertility, pain with sex, etc, but the great thing about this board is there is a place for it all. I had started to feel a little like maybe I didn't have as much 'right' to be here because I don't have as much pain (at the moment) as a lot of people on here and for me infertility is the BIG issue. So I guess that's a little the way felt Ouchy only reversed.
|
|
|
Post by erzulie on Mar 24, 2007 19:04:33 GMT -5
I think you're right scarlett. And we all have the right to vent about whatever it is that's bothering us!
|
|
|
Post by kb on Mar 25, 2007 8:09:18 GMT -5
For me the biggest problem is the pain, i think many of the other emotions are just a side effect for me to the pain, just like the nausea and fatigue.
Have never greatly worried about fertility, have been a bit concerned, but its not my priority, i probs will want kids one day, but not at the moment. At the moment, i just want my life back, and to get that, i need to solve the pain issue, everything else will resolve when that does.
|
|
|
Post by angelas on Mar 27, 2007 10:41:40 GMT -5
For me its everything, but the physical pain is what gets me down so much since it prevents me from being able to do so many things. I read in another thread people talking about others who seem to use endo as an excuse for everything. That really hurt because I know a lot of my postings have been about me not being able to work and such right now due to the pain that I am in. In no way have I ever thought this disease was an easy way out for things I don't 'feel like' doing. The pain is very real, and very dibilitating. But I am also glad that I can still join all types of threads, regarding all areas. If this forum were ever to turn into something specific I would probably have to leave.
|
|
|
Post by Tiff on Mar 27, 2007 12:10:36 GMT -5
For me the two biggest problems are conceiving and even more so the pain. Just the beginning of March I was hospitalized because of the severity of the pain, I could not stand up, all I could do is curl up in fetal position and hope it got better. Don't get me wrong I really want children, and that is why I am doing what I am doing to conceive, but I know there is always adoption and if it doesn't happen for us, we both are more than willing to adopt. So I feel the physical aspect of endo is what is worse for me. Also I feel people don't understand and becuase of that, it makes it real hard to talk to people who do not have endo, they feel I am a hypocondriac! Which is very hard to know people think that way of you. My biggest fear is that I will have to live with this pain for the rest of my life, and for the rest of my life I will have days that I am literaly incapable of doing anything because the pain is that bad. It scares me to think that every month for the past year is had been getting worse and worse and I do not know when it will stop.
|
|
|
Post by erzulie on Mar 27, 2007 16:20:03 GMT -5
I read in another thread people talking about others who seem to use endo as an excuse for everything. That really hurt because I know a lot of my postings have been about me not being able to work and such right now due to the pain that I am in. In no way have I ever thought this disease was an easy way out for things I don't 'feel like' doing. Angelas, what thread are you referring to? I don't remember reading anything like that! I think everyone on here has probably been in a situation where they couldn't do something because of the pain, so I'm shocked anyone would say that! If people were badmouthing other members of the forum I can do something about that, because it is strictly against our rules.
|
|
|
Post by ouchy on Mar 27, 2007 16:31:05 GMT -5
It was probably me, saying something about how a lot of people do seem to blame everything on endo, including car problems. But I never bad-mouthed anyone. It was a generalization and more about people who think every single thing that happens is a result of endo--i.e. cramped wrist, sinus problems, jaw problems, nosebleeds, stub your toe, etc. I never paled anyone's pain, though. I understand that all pain is real. I just think sometimes that we tend to blame a lot of symptoms on endo that probably have nothing to do with endo. If it was all from endo, we'd be the only ones who suffer from sinus problems, jaw problems, nosebleeds, etc.
|
|
|
Post by cherry on Mar 27, 2007 17:58:02 GMT -5
That was me as well, I do remember that little convo and there was no veiled accusation or finger pointing I promise. We all know how it can get so bad you can't do a thing, and how useless you feel when you have to take time off. What I said was based on my own experience, how others think I use it as an excuse cos they don't understand, and how I had started letting it be the reason everything was going wrong. Absolutely no meanness in it though, it was poking a bit of fun at ourselves and generally affirming that endo was not gonna take over our lives
|
|