Endometriosis
I was wondering if anyone here knew much about endometriosis?
I've apparently had it for a long time, but it was always written off as just 'painful menstruation' even though it was debilitating to me. Every time I got my period since I was 14 I had to call off school or work, I would get sick and shake violently and it was a constant stabbing pain that even the strongest pain killers would not relieve. Finally in January I had surgery and it was confirmed. The doctor would not take out my uterus because of my age and my insurance was about to go out. So instead he put me on Norethindrone.
He told me my endometriosis had mutated and gone outside the uterus as well as in, it had stripped the mucus lining on one of my uterine walls; It was pretty bad. He said he scraped as much as he could out, but didn't want to take all of it because my body couldn't handle that. So I started taking the pills, one a day at 5mg. They were supposed to put everything on pause (which doesn't sound healthy to me), meaning no more periods or pain, but I ended up spotting for 60 days straight with slight cramping. My doctor kept telling me it would stop but it didn't. So he upped the dosage to 10mg a day. That stopped everything, but I started feeling sick and tired all the time. Food I eat doesn't sit well. It just feels like lumps in my stomach.
So once my prescription is out, I'm not going to take them anymore.
But I want the endometriosis to stop growing and I want to make my periods less painful. For the pain I figure I'll make teas out of red raspberry leaf, dong quai and other herbs and up my calcium/magnesium intake a few weeks before my expected period.
What I don't know is how I'm going to manage the endometriosis. I know there's natural progesterone creams out there, and wild yam cream, but I don't know much about them or even if they would help stop the growth.
So, If anyone knows anything about endometriosis and stopping it, please let me know. And I just want to clarify, I understand you are not prescribing anything, just offering suggestions, and I will thoroughly look into any information I get.
Thanks guys.
Its a hard road, because the more you have periods, the more you bleed and the scar tissue increases. My aunt has endo and was infertile by the time she was 20. The scar tissue can also harm your other organs depending on where it is spreading. It may not be possible to stop the endom., I don't know about slowing it, I have a little as well as tons of cists on my ovaries, and other than birth control pills to lessen the bleeding, like only having 2 periods a year, we were told, If you want kids, try and have them now, you might still be able to, but don't wait very long. So that's what we did, I'm now 31 and with three kids am having almost no periods, my ovaries are toast.
Aw man.
:(
Yeah, any information I've read on it has been pretty disheartening. It's so frustrating to live a highly-active lifestyle but always have this dragging behind me. I wish it was just a bad dream. But I guess its with me for life. I just wish I could find a safer, natural route.
A hysterectomy will stop the endo. and if you still have your ovaries you don't need to worry about hormone replacements since you are young ( I think). Once you heal you can have a normal sex life (as I have been told that the scar tissue can cause massive pain during sex). It means the end of your reproductive years, though. That's a big decision to make, but if you are comfortable not having biological children (it might be possible to freeze your eggs and use a surrogatet) and adopting if you want a family, then that would stop the pain and scar tissue. The surgery is significant, and there is a few weeks recovery time, like a major c-section, plus the emotional toll, but it may be an option to consider if the pain and growing scar tissue is a problem.
Unfortunately, it really has nothing to do with how healthy a life you live, and it often starts as soon as you hit puberty so the damage happens fast and early.
Lots of tough decisions, good luck to you.
I want a hysterectomy. That's what I tried to get the doctor to do in the first place, because I knew I had it bad (I had a feeling) and I knew the pills wouldn't work.
But now I don't have insurance and am not financially stable. Hopefully around October I'll be back in Portland, OR and helping on farms and maybe at a local bakery to start setting up plans for my own farm and cafe. And then maybe I can get it done. I have absolutely no idea how expensive it would be for me, but my mum had a hysterectomy where they left her ovaries and she's extremely happy with it.
And I always wondered why sex would hurt for me. It wasn't extremely painful, but it was uncomfortable. Now that I've had some of the endo scraped, I don't notice it as much. I didn't make the connection until you said that, but it makes sense.
Thanks for the help and support. I really appreciate it. :)
Hey, if you're coming up to PDX, I can give you the contact info of my acupuncturist/Chinese Medical Practitioner who's also a midwife, and specializes in women's health! While I don't believe she can 'cure' it, I do think she could pro'lly help slow it down/stop it in it's tracks.....
Hanashi, that would be great! You live in Portland, I'm assuming? I miss it so bad there. The people are so much better than here on the East Coast. Not to mention there's a better sense of community and actual stuff to do.
But I'd love to get on the natural track to getting this under control. Thanks!
YUP!! I'm in the 'deep SE'....=o/ but am more than willing to live amid the crackheads, as long as they keep to themselves, if it means I can be up here and give my kitties enough space and stairs to run!
acupuncturist's site
i don't understand why the doctor decided to go against your wishes and leave your uterus. if your endo is that bad, you may not even be able to have children by now anyways.
i would not recommend trying to hurry up and have kids, though. i would recommend seaking a second opinion and trying to get that hysterectomy before it spreads and becomes worse. if you want a family, you should be able to love non-biological kids just as much, right?
i just don't think you should feel like you have to have kids too early because you want to get it out of the way before your body quits on you. if you're not ready to take care of them right now then it really won't help matters at all.
i'm sorry that you're going through all of this. but at least now you have a diagnosis and you can start planning how to deal with it.
i hope you feel better. :(
also, the only cure i know for it is a hysterectomy, which is why i'm confused as to why the doctor refused.
i cannot even imagine how that feels. the doctor saying, "i know doing this will help you, but i think you are too young so i won't" and you're just there with your jaw dropped like, "what? seriously?!"
i feel like no one else should ever be able to tell you that you HAVE to keep something in your body if it's causing harm.
although, i did just remember that my mother-in-law's endo was cured by pregnancy... hmmm.
i don't know how bad hers was, though.
I don't suggest having children if you aren't ready, that's just what our doc mentioned in the course of our appointments, since we were already concerned we were not getting pregnant after trying for 2 years. It was the right choice for US, and I am glad we did, but it isn't right for everyone, it is just something to consider. If you are in a place where you want to have kids, but keep putting it off, the endo might be a factor in wether you continue to put off that decision.
My doctor probably just assumed I was young and dumb and didn't know what I was talking about when I told him to just take my uterus out. I have never wanted children, and knew that if one day my mind did change, I would adopt. For many different reasons.
I tried to explain that to him and he laughed. He actually laughed at me.
And he knew my insurance was running out but wanted to stick me on pills anyway. He kept reassuring me (because pills make me nervous) that if anything were to go wrong or I had any questions to just send him an email and he'd help me out. But if you read my previous posts, I ended up spotting for 60 days straight. When it first started, I let him know and he sent me back something along the lines of 'It's fine. Keep taking them.' Two weeks went by, still spotting, sent another email, 'You're body just clearing out, keep taking them.' I mailed him one or two more times and finally he told me I need to double up on the pills. Finally the spotting stopped. It just seemed outrageous to me. He wasn't being paid anymore so he put no effort into answering my questions or concerns and lied to my face in the office when he told me different.
But that's all over now, my insurance is gone and he will never be my doctor again.
Seriously, thank you guys and gals for the support. I feel more positive about it, and like I really can get better. :)>>>
My doctor probably just assumed I was young and dumb and didn't know what I was talking about when I told him to just take my uterus out. I have never wanted children, and knew that if one day my mind did change, I would adopt. For many different reasons.
I tried to explain that to him and he laughed. He actually laughed at me.
me too! i have NEVER wanted to give birth but have always felt that if i wanted children i would adopt. layla was a little bit of a stray from that plan as heidi gave birth to her, but at least she wasn't in my uterus! that allowed me to enjoy the pregnancy so much more! haha.
but seriously, another major factor in my desire to adopt is this:
there are so many children who are already in the world. these children are just as deserving of loving families as the ones who were fortunate to be born in the right place at the right time and lucked out with one from the start. i feel that it's more responsible for us to take care of these children first before creating more children who also need parents.
NOT trying to offend anyone. not at all. obviousy heidi and i created another child. but if there are any more for me, they will most likely be adopted orphaned children. but as far as my beliefs, i do feel that adoption needs to be considered more often. so kudos to you! i'm glad to hear someone else say that they want to adopt!
eta: i forgot to mention, i also hate it when i tell people this and they tell me "you'll change your mind someday". uh, no i won't. when i was four years old and played house i was always either the auntie, the daddy, or i ADOPTED a baby. i NEVER ever ever ever wanted to have babies, even when i was little.
But that's all over now, my insurance is gone and he will never be my doctor again.
Seriously, thank you guys and gals for the support. I feel more positive about it, and like I really can get better. :)>>>
i'm glad to hear that you're feeling better about all of this. i'm also super glad to hear that you'll get another doctor. it is terrible to be in the position that you were in, i'm sure. i can imagine you just felt completely powerless and at his mercy, which isn't how it should be. it's your fricking body. he's not the one that has to live with a uterus full of endometriosis. if he was and it was as bad as yours, i'm sure he'd be ripping it out himself.
sheesh.
GFVegmom,
thank you for clearing that up. i'm sorry i didn't quite get it the way you meant it the first time. i do agree with what you are saying. if she was already wanting kids and was ready to have them but had been putting it off, then yes... she might consider the endo as a factor in speeding up that process and doing it sooner rather than never.
oops.