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    Default Calling all mamas with endo!

    Okay, the thread in TTC reminded me that I was thinking of starting a thread here!

    We go through so much crap each month, maybe we can offer each other some support? I know that the endometriosis support network in London was somewhat dismantled and changing forms but here it isn't very active right now, plus I'm not in London anyways...

    So, hoping we could just chat with others who 'get it'. Cause, let's face it, I'm sure most of us find there are lots of people in our lives who don't. Either cause they don't want to or they don't understand.

    I know the days before the baby when I'd take whatever pain killers I had and still just curl up wherever and rock and cry tended to freak my husband out as he wanted to 'do' something.

    Me, I've been better since my 2 1/2 year old was born, but it is getting worse again and fast I had my second surgery six months before conceiving her and it helped for about a month and a half and the pain was back! I'm thinking it is only starting to get worse now because she weaned at two (January) so it has been awhile since hormones should have been back to 'normal'. UGH! This month was really bad. I had to walk about 15 minutes back from a seminar on the first day of my cycle and could barely stand by the time I got back, got home and spend the next hour and a half praying that the pain killers would kick in. Sometimes it sucks to be a woman!

    So, how are you all doing?

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    Endo..... my enemy..... how I hate you....

    The pain is an ugly reminder each month that I'll likely never conceive. So the pain is twofold. Yet after 9 years ttc, I've never actually given up hope.

    I take Tylenol & Advil together, just like I do with the kids if they're in a lot of pain, or feverish. I'll also set an alarm and take it in the night sometimes. Or have it at my bedside and take it when I first wake up, because mornings are the WORST!
    Adoptive Mommy to Evan '05 and Aiden '09

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    Talk to your dr.s and ask for anaprox. It will at least take some of the edge of the pain. Mine is not to bad but some months I am in bed for hours.



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    I take birth control pills back to back so that the pain only occurs 4 times a year instead of every few weeks. Lately I have noticed the pain more and more when I do cycle.

    Last month I actually considered making the dreaded appt to discuss the big H ... but my ob/gyn is still on mat leave I think and I would only ever consider that option in consultation with her.


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    Quote Originally Posted by Adoptive Mommy View Post
    Endo..... my enemy..... how I hate you....

    The pain is an ugly reminder each month that I'll likely never conceive. So the pain is twofold. Yet after 9 years ttc, I've never actually given up hope.

    I take Tylenol & Advil together, just like I do with the kids if they're in a lot of pain, or feverish. I'll also set an alarm and take it in the night sometimes. Or have it at my bedside and take it when I first wake up, because mornings are the WORST!
    HUGs to you. I'm so sorry to hear about your long struggle TTC.

    I've done the alarm to take pain killers. I've been taking four advil these days and praying the pain subsides... think I'm going to have to go back and get perscription pain killers again. Problem I've found is they only work for awhile and then don't work very much. I don't know about you, but I don't tolerate narcotics and I can't function when taking them, so the suggestions to use those as something stronger when I can't function isn't helpful, because I still can't function.

    Mornings are always the worst. That is actually how I knew I was pregnant for sure. The week before my period was due I wasn't in pain which made me suspicious. My period didn't start the evening before the day it always starts. I woke the next morning, opened my eyes and realized I wasn't in pain. I rolled over to get out of bed... still no pain. I sat up... still no pain. Walked to the bathroom... still no pain. Yup, had to be pregnant as no other explaination for no pain the day my period is due!

    I also took to setting my alarm at least an hour earlier on days I had to leave the house when I had my period to take drugs and roll over till they started to kick in before getting up.

    I think endo has to be one of the worst combination in some women - no only do you suffer as a woman every single month, but then it takes away your fertility so you can't even enjoy that aspect of being a woman

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    Quote Originally Posted by C & C's mom View Post
    Talk to your dr.s and ask for anaprox. It will at least take some of the edge of the pain. Mine is not to bad but some months I am in bed for hours.
    It worked for me for awhile. But then started to dwindle. Got to the point where it took an hour to start to work and wore off in about three. But NSAIDs seem in general to work better than many other things.

    Best advice I got for pain was from a pharmacist my mum works with - head off the pain! If you start your period but no pain - take the drugs then before the pain hits. If you know it is coming because your cycles are regular, take it the day before (or more!) I used to take NSAIDS (Ultradol for awhile, worked for pain, but I got migraines when I stopped after four or five days on it..) in lower doses for two days before my period started. It really helped. Because it is inflammatory, once the pain starts it is very hard to control. If you can catch the beginning and try to minimize it, that helps a lot. It was hard for me to do because I prefer to minimize the drugs I take and take 'as needed' so I had to rethink things a bit. I haven't been doing this lately, but think I'm going to have to again to continue to function.

    Quote Originally Posted by CourtneyH View Post
    I take birth control pills back to back so that the pain only occurs 4 times a year instead of every few weeks. Lately I have noticed the pain more and more when I do cycle.

    Last month I actually considered making the dreaded appt to discuss the big H ... but my ob/gyn is still on mat leave I think and I would only ever consider that option in consultation with her.
    This has been my biggest problem. I can't take any birth control so can't control it that way. Four times a year is an improvement, did your doctor insist you needed to cycle that often? I know some people go longer so I'm curious.

    I'm always hesitant with 'the big H' as for some it doesn't help. From my understanding it depends if the pain in an inflammatory process or scarring. Women I know with bad scarring didn't have as much of a benefit after the surgery because the scar tissue is still there. Also, I always wonder if you still have the endo on other organs would it really help a lot? So many unknowns Hope you can talk to someone and get some ideas

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    Thanks for starting this. Great timing for me.
    I have only been dealing with this for a relatively short time. It began when my periods returned after having my 2nd DD. So about 9 months ago. I've had the ultrasound and colonoscopy now to determine that it is nothing sinister. My doctor at this point has just said it's probably endometriosis and further tests would need to be done to determine that diagnosis for sure. But he has suggested an IUD would be my best option for reducing the monthly pain. I am just waiting for my husbands benefits to kick in at his new job. In the meantime I just deal with the pain month to month. Today happens to be day 2 of my AF and the most painful day of the month for me. I can't sit, I can't drive a car, I don't want to eat for fear of the pain on the toilet. It's so nice to know I am not alone.
    Has anyone had the “further testing“? What does this involve? Also has anyone tried the IUD and found it effective? What is the surgery like that you've had lhastie?
    I have so many questions, I never thought to ask LM's. Silly me.

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    Quote Originally Posted by debemarj View Post
    Thanks for starting this. Great timing for me.
    I have only been dealing with this for a relatively short time. It began when my periods returned after having my 2nd DD. So about 9 months ago. I've had the ultrasound and colonoscopy now to determine that it is nothing sinister. My doctor at this point has just said it's probably endometriosis and further tests would need to be done to determine that diagnosis for sure. But he has suggested an IUD would be my best option for reducing the monthly pain. I am just waiting for my husbands benefits to kick in at his new job. In the meantime I just deal with the pain month to month. Today happens to be day 2 of my AF and the most painful day of the month for me. I can't sit, I can't drive a car, I don't want to eat for fear of the pain on the toilet. It's so nice to know I am not alone.
    I don't know that I've heard of anyone else suddenly having to deal with endo after having a child. Mine, and a lot of women, got better after being pregnant because it is nine months where the hormones aren't making it all worse in your abdomen. That is a really extra shitty time for it to flare up for you

    I know what you mean about eating and drinking. I find I get verging on dehydrated because I barely drink because the pain when you need to go is so bad and actually going to the washroom is even worse. Anyone who complains of of period pain and then also complains it hurts to go to the washroom when they have their period always sounds to me like endo. I've had it on the outside of my bladder both times they've done surgery. Neither time did they see anything on my bowels but everything still hurts when I have my period that I swear there must be some somewhere along there!


    Has anyone had the “further testing“? What does this involve? Also has anyone tried the IUD and found it effective? What is the surgery like that you've had lhastie?
    I have so many questions, I never thought to ask LM's. Silly me.
    Further testing is an interesting way to put it... the only way to diagnose is the laprascopic surgery. Everything else apparently just makes it likely that it is endo and if you treat it like it is and it helps, great.

    I haven't tried an IUD but know a lot of ladies who went with Mirena from the support group and had good luck. I know Dr Vilos at st. Joe's was involved in clinical trials looking at its it for use with endometriosis and from what I heard it sounded quite positive.

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    Quote Originally Posted by lhastie View Post
    the only way to diagnose is the laprascopic surgery. Everything else apparently just makes it likely that it is endo and if you treat it like it is and it helps, great.
    That's basically what my dr. said. Can anyone share what the surgery entails. Someone said they had surgery and the symptoms returned. This is such discouraging news to me. I really haven't done much research on the whole thing I guess. All I keep reading is how difficult it is to diagnose and how doctors don't know what causes it and there are no definate “this is how it's treated“, more like try this, then try this...really not what I want to hear.

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    Its day surgery, and they make one incision at your belly button, if they see anything they make two more incisions, one at your side pelvis, one higher and you are sore for a couple days because they fill you with air to see better, so it makes your back and shoulders sore. I had the surgery done in June and its ben back for two months now and waiting to go back in for surgery number 2




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    Quote Originally Posted by debemarj View Post
    That's basically what my dr. said. Can anyone share what the surgery entails. Someone said they had surgery and the symptoms returned. This is such discouraging news to me. I really haven't done much research on the whole thing I guess. All I keep reading is how difficult it is to diagnose and how doctors don't know what causes it and there are no definate “this is how it's treated“, more like try this, then try this...really not what I want to hear.
    I've had surgery twice. Both times a belly button hole and one just above the pubic bone. They fill up your abdomen with CO2 so that there is space and they can look around. They go in, look around and look for spots where the endo is in your abdomen. As they described it, it looks different in different places. Different colours, textures, shapes, etc. So they look for anything that looks to be endo and burn it off. The problem is they'll always miss stuff. Too small, too hidden, etc. The big issue is that the amount of endo in the abdomen and the amount of pain don't correlate at all, so they could find next to nothing and you could have terrible pain or find a lot and not have a lot of pain. A fairly substantial percentage of women diagnosed present at fertility clinics and when they start investing causes wind up eventually diagnosing endometriosis, so most of these cases aren't dealing with the extreme monthly pain but it is still there.
    If you're going to consider it, makes sure you have a surgeon who does this a bit and is using a laser rather than electro-cauterization. I've had one of each now...
    Biggest issue afterwards is that you wind up with CO2 left in your abdomen (they get most of it out) and it rises to the top, so if you sit up it presses under your diaphragm and hurts like heck! It just takes time for your body to absorb it. Then if there were any sensitive places where they removed endo you might feel it. The first time I never saw the surgeon before or after at the hospital (really pissed me off) and they had burned something off the bladder, I was worried because I didn't know that and it was very hard to pee because my bladder hurt soooo much. The second time there was some on my left ovary and an endometrioma, well, yes, you can feel your ovaries, OW!

    It comes back. It depends on the person how fast. After the first surgery it was a bit better and they put me on Depoprovera (avoid this! Horrible, terrible, horrible) and then tried some other things, but it didn't get back to being as bad for probably a couple years or more. After the second surgery the first month was great, second month was worse and then it was back almost as bad, not quite, but pretty close! It depends a lot one what your body is up to and what's going on. I've been better since having our little one, 9 months of pregnancy hormones w/o cycling helps usually, then I nursed for two years and a lot suggest that different hormone levels help. Since she weaned it has definitely been getting worse (not that it was great before )

    The problem is the surgery is still treating symptoms and not getting rid of the root of the problem. The disease progresses from being a very inflammatory one in younger women to more of an issue with scarring causing the pain as you age. For many, if there isn't a lot of scars or adhesions it will get better with time. The problem is you want to be doing something to try to prevent it from progressing as that causes you more problems.

    Hormones is the main way they try to control it, the pill alone helps a lot of women and if you use birthcontrol to stop cycling that should help. Though not all of us can take artificial hormones If this works then why go the route of surgery just to 'diagnose' in many cases but for many this isn't sufficient.

    It is a very, very discouraging condition to deal with I wish I could tell you otherwise or tell you a miracle 'cure' but I haven't heard of one. Each woman is so different.

    Can I ask if you're taking any kind of hormonal BC? Any luck with anything so far? I'm still surprised with it arriving right after your little one, but then again, considering they don't know the 'why' and 'how' of the disease but know it has to do with getting endometrial tissue into the abdomen and growing there, I guess after pregnancy wouldn't be a huge leap of logic that it would happen then.

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    ENDO sucks !!

    I've been dealing with it as long as I can remember. My first surgery was about 10 years ago, and helped a bit. I had alot of endo tissue that was removed, it was so bad the scar tissue actually moved my bladder to a different area, and twisted my left ovary and tube into a ball. They left a small blood clot after surgery and it caused a massive blood infection, which put me in hospital for 4 days.
    I have not done another surgery since my first. After having DS in 2005 things have improved.

    Thanks for starting this thread now we can talk to others who “get it“.

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    My goodness K'sMum! Yes, nicely put. Endo sucks!

    I've heard stories about bad scarring So sorry to hear about all the problems with the surgery!

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    Quote Originally Posted by lhastie View Post
    Can I ask if you're taking any kind of hormonal BC? Any luck with anything so far? I'm still surprised with it arriving right after your little one, but then again, considering they don't know the 'why' and 'how' of the disease but know it has to do with getting endometrial tissue into the abdomen and growing there, I guess after pregnancy wouldn't be a huge leap of logic that it would happen then.
    No I am not taking anything right now. My endo symptoms started about 10 months after having my second daughter. I was nursing and still am but my period returned I think around the time my daughter started eating solids. She currently nurses about 3 times a day. My doctor suggested taking BC but I don't want to until my daughter is completely done nursing. My husband's medical benefits should start around January and at that time I was going to look into the Mirena instead of starting the BC. I know some medical insurance doesn't cover the IUD but I was hoping that since its for endo and not going to be used as birth control that it would be approved. Not that it's not worth paying the money but if I can get it covered that's even better. I don't know how much longer my daughter is going to nurse for. I am just letting her self wean. So I guess I am at a point where I don't want to do anything at all since nursing is more important to me. But when the time comes I would like to do the most effective thing.

    What age did everyone start having symptoms? It seems to suprise everyone I talk to that this started after having my children. I had my children at 32 and 34 and never had any symptoms prior to 8 months ago. I had no fertility issues at all so I wonder what caused this to happen now. You say that surgery treats the symptoms but doesn't get rid of the root of the problem. Do they know the cause or “problem“? From everything I have read they don't know what causes it.

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    I'm pretty sure I had symptoms from the beginning, so 11, but of course not diagnosed for ages. Apparently the average length of time between a women presenting with symptoms and being diagnosed is 7 years. Yup, women's health issues just don't get the attention they need! I know for sure I had symptoms from the age of 12. Problem is I think for the most part moms tend to down play cramps because they want their daughters to feel that their period is natural and it will be okay. Best thing I ever read regarding cramps and exercise was that if it is general run of the mill cramps light exercise will help, if it is something like endo it will make it them worse. That sums it up completely! Some days moving across the room is too much!

    In terms of the cause? I've read there are two ideas:
    1) for some reason in women with endo there is reverse flow so some endometrial tissue gets into the abdomen and causes havoc.
    2) this happens in all women and for some reason in women with endometriosis this tissue isn't just destroyed and causes problems.

    I'm leaning towards number 2 because I don't think I've heard a mechanism for why some would wind up with the tissue in their abdomen and not others. Also, the immunology aspect makes more sense. You body should kill the tissue/cells that are in the wrong place. Endometrial tissue on the bowel shouldn't be there and your body should deal with it. This also fits with the idea that endometriosis fits within the auto-immune disorders category. Big studies have shown that the rates of other auto-immune disorders among women with endo is WAY higher than the general population. To me, it being auto-immune makes some sense... But no, they don't really know. Thankfully there are the occasional reserachers looking at it, but it doesn't get much attention.

    debemaj, are you seeing an GYN who specializes in endo? I would for sure, not worth dealing with the rest given it takes so long to find something that works at the best of times.

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