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Endometriosis - anyone else? - Page 2

post #21 of 48
Calm - sorry I didn't answer your question about caffeine. I've never been able to completely cut it out of my diet, so I can't say. For me, sugar makes the biggest difference in how I feel, so it's easier to eliminate it.
post #22 of 48
hi, i'm new here.
sad to report that i think my endo is back after a long hiatus. i was dx'd via lap before getting pg (although i *knew* i had it for years - horribly painful period, the whole nine yards) and, of course, felt fabulous throughout my pregnancy and for many months post partum. this leads me to believe that my issues stem from a severe hormone imbalance and that when progesterone levels are high, health improves. anyone else feel that way?

i was convinced that i'd be like my mom, who also had horrible periods when younger, and my endo would magically disappear after having a child. well, i've suspected that i've been ovulating for the past few months and last night, during a 3:00 AM nursing session with my 13 month old, felt those horrid cramps come back. but, no blood! is it just me or is that weird? i don't actually have my period yet but am feeling like CRAP today. pretty lousy cramps.

so bummed
post #23 of 48
I personally quit caffeene and found it to be a great help. Also traditional medicinals makes a tea called female toner that helps a lot!!!

Erica- I'm sorry the pain is back. Yes unfortunatly pg usually just gives most of us time off, not a cure. Your theory is why I beleive that natural progesterone cream and/or vitex is so helpful to women with endo. Also diet changes that reduce the estrogen load on the body. I hope you get feeling better soon.
post #24 of 48
Quote:
Originally Posted by Autumnschild
I read an interesting article in this month's "E (The Enviironmental Magazine)" about chemicals in our daily lives that are known as hormone disrupters.
Dr. John Lee's book, "What Your Dr. May Not Tell You About Premenopause" has information on this, as well as using natural progesterone cream for endo.
http://www.johnleemd.com/
post #25 of 48
Thread Starter 
Still here, reading along. Thanks for the link, Jane! I'm with you, Erica, starting to get pain today - I'll see how it goes...

I guess the caffeine has to go. Oh, well, better off that way all round anyway. Feelin' crappy...I'll check in again soon.
post #26 of 48
Pattyla - I'm a nutritionist and I also dabble in herbs and have tried to get relief from both a whole foods diet and herbs. Nothing has really proven effective. I intend to do more research to see if maybe there are things I haven't tried yet.

I've gone ahead and made an appt with my RE. I'm not sure what he can recommend or do at this point, though

Ugh, I'm feeling SO sorry for myself!
post #27 of 48
I suspect that I have it. I've had 2 laps done and they said that they removed "scar tissue" during the second one but never specified what it was. I was admited to the hospital due to severe pelvic pain and didn't have a regular dr at that time. This was 7 years back so I'm not sure how to get those records or if they exist.

I have extremely painful periods that are also very heavy, last up to 10 days, and I get it every 3 weeks. I just recently got my health ins back so I need to call to get a check up. In the past they said that they didn't know what to do since I can't take hormonal anything due to depression, so the pill is out.
post #28 of 48
I had my first child 1/94 and after my 6 weeks, i noticed sex was so painful i couldnt do it without crying so i went to dr to see what was wrong. he did lap 1/95 and found endo and adhesions that were attaching my bowel to my pelvic area and he told me I would never be able to have kids after this. 10/97 i had another child and my periods got to be like hemmorhaging but dr did nothing except pain meds and birth control and again no more children. well in 03 i went to specialist to have another baby and he said if i wasnt pg in 6 months he would try something, well 11 months later, another baby. but during this pg i found out i had cervical cancer and had to have leap due to endo(they think). NEVER going to have more kids, well today i am 35 1/2 weeks pg and have had placenta previa and abruptions which could be cause by all of the problems for endo (scarring) and WE decided no more after this because I cant handle anymore scarring. So for all of you that have trouble, dont give up. My kids are 10,7, and 17 months plus one one the way. I know now that they were wrong and I am glad I didnt give up (although this one was a shock) so keep your chins up!!!!!!
post #29 of 48
Can a midwife dx endo?
I've kind of vowed to never ever go back to a gyno. ever again...but I'm pretty sure I have endo...I:
Often bleed for months at a time
Often only go a week or 2 between periods
Often have absolutely debilitating pain with my "cycles"...back aches that make me vomit, stomach aches that cause me to fall to the ground in pain...
I started my period when I was 9, and it lasted a year straight...
And I have been completely blown off by doctors about this...told "Maybe horomones? Take the Pill..." :
It took me 10 years to get pregnant with my son, and he's one now...and all this is starting again...
I have no idea what to do...I hate, hate, hate gynocologists, though...
I'm sure there is some horomonal element to whatever is wrong with me, but I don't think horomones can cause that much pain...last week I curled up on the floor in my kitchen when stomach cramps hit me out of the blue...it lasted about 4 hours, and came in waves, kind of like labor...(and this was in the middle of my cycle...no bleeding this time...) :
post #30 of 48
Thread Starter 
Kelly, it sounds like ovarian probs - mid cycle stuff. Apparently hormones kick start the problems, but reversing the hormonal problem often doesn't clean up the mess left behind. When there is blood and endometrial tissue somewhere other than the uterus, it causes things to stick together = pain. This endo tissue also behaves just like the tissue in the uterus, so it bleeds once a month and tries to shed.

I have few answers myself. I am dealing with massive clots at the mo (sorry, details) and...here's some great detail for ya...big clots that are black and half the size of a fist. Every month I think I have miscarried! About the gyno's, don't like them much myself because they often aren't interested in gentle things or diet etc, and want to cut cut cut. But if you can find one that is good (a woman gyno?) then they will be open to helping us find all the problems and causes.

Oh gee, I am just rambling now LOL! What the hell am I talking about?
post #31 of 48
to be honest, the women ob/gyns that I've seen were way worse than the male ones. It's like if they don't have crippling pain with their periods, they think I just have a low pain threshold, or am exaggerating, or something.

Finding the right doc is very important. It took me many tries before I found my surgeon, and I found him over the internet! Just lucky that he happens to live here where I do (but has another practice in Manhatten). I was also told that I'd never have any kids, and two docs actually said that I should have a hysterectomy!

The *only* way to dx endo is with lap surgery. Sorry. And, if you're going to have the lap, make sure the doc doing it is skilled enough to completely remove (excise) any and all endo he might find. Most docs aren't able to do that, so it's very important to find one who can. There are no other tests, though the ca125 test will have elevated numbers for women with endo (or cancer). Endo usually doesn't show up on ultrasound, either, though many docs still try to find it that way. I'd like to give them credit, and think maybe they are just trying to rule out other problems, but I really think they are just trying to make that bill go as high as possible before you wise up and find a doc who can actually help.

Kelly - for your problems, I would go see a reproductive endocrinologist. It definitely sounds hormonal to me, but you are right, the pain could be endo. Have you ever had your hormone levels tested? An RE would be my second choice for lap surgery, as they see more women with endo than a regular ob/gyn does, and have more practice in treating it.
post #32 of 48
Oh, and since this is turning into a sort of tribal thread...
thought I'd share with you what's going on with me.

af came back. Now I have no more excuses to put off surgery any longer, and I called my surgeon. My last lap was five years ago, and I am going back to that same doc. www.womenssurgerygroup.com is his website. I see him Nov 18 (the day before my baby's first birthday) and if it's anything like last time, surgery will be within the next few weeks after that.
I just can't function and take care of my family like I should, with this pain. I think most of it is adhesions from the cesarean, since the pain didn't go away during my pregnancy like it did the first time. Anyway, I know this doc is the best I can see. He really knows his stuff, and he helped me before. But I'm still terrified of having to go back to that hospital where Jenny was born (it was very traumatic experience for me). *sigh*
post #33 of 48
Awww...Stacy...
Surgery before Christmas? Will it be the outpatient kind?
If it's any consolation, you'll probably be in a different part of the hospital from where you had the C-section...In some hospitals, one area can be awful, and the others great...
Might even have different colored rooms and everything...lol...maybe once you were in you could pretend it wasn't even the same place...

Hmmm..can I ask you all a kind of gross question?
Is it normal to have, in addition to goopy black, brown, and plum clots...actual decent sized.....flesh come with AF?
I'm not sure I have endo, as I said before....but I always have lots of cloting...like Calm described...never just bright red blood...dark, thick red at best...and sometimes...err...what must be fairly large pieces of uterus...
What's a "normal period", and what's a sign of endo?
Sorry this was so gross....
post #34 of 48
Thread Starter 
And don't forget to check out Stacy's site on the first page here, my fellow sufferers.

Sorry to hear its coming back, Stacy. I know in my heart I have to face surgery again, too. Was the traumatic birth the c-section? I still have issues about my own I think. Yours was a general anaesthetic? That is what did my head in. Freaky, disillusioning experience all round that I am still working through myself.
post #35 of 48
Stacy, Im so sorry you have to return to a place that causes such horrible memories for you.

Calm, I Stacy's site, I have been reading through it as often as I can.
post #36 of 48
thanks everyone
yeah, it's where I had my cesarean (that story is also at my website, too), but also where I had my second lap, which was a totally positive wonderful experience (well, except for it being a hospital and full of doctors and all). I've always had a problem with anxiety when it comes to doctors. Probably a direct result of going over twenty years and never having my pain taken seriously.

Kelly, believe it or not, "normal" period should be thin red blood. The only time I've ever had one like that was my first AF after Jenny was born. I totally freaked out! Called my doctor on a Sunday in hysterics, I thought I was going to bleed to death, since the blood was like what comes from a cut. He laughed at me and said that's what periods are supposed to be like, that every other period I'd ever had, (thick, dark, clumpy, sometimes with huge clots) was not normal, and was probably due to the endo. There are other conditions that would cause periods like that too, I think fibroids is one. (((Hugs)))
post #37 of 48
I also suffer from the beast.
1 ab. laparotomy
3 laser laparoscopies

down to 1 tube/ovary.

I feel it was a miracle I got pg with DS @ 42 yrs old.

My Mom had severe Endo & I/m worried about MY adult DD b/c she's showing signs of endo :
post #38 of 48
Stacy- I know you! Hi! I'm so sorry you are feeling so bad again. Adhesions are the worst. Have you gotten deep tissue massage on your abdomen to try to deal with them? That made a huge difference for me with the pain that I assume was caused by adhesions. It was so bad that I couldn't stand up straight. I had minimal adhesions at the time of my lap but just a short time later they were horrible (if you can go by symptoms). My lap was an aweful experience and I will do anything and everything to avoid another one.

I had my surgery dec 13th. It made for an interesting first christmas with my IL's, me all hopped up on pain killers and all.

to all of you. I know just what you are going through. For me the real answer has been through diet changes and progesterone cream. It doesn't work for everyone. Please do consider surgery to be a last resort and search for other ways to treat this. You never know when you will react badly to a surgery and get way more than you barganed for from it. I'm not saying that it is never a good idea, just make sure you know what your risks are and weigh your options fully. Most ob's don't know much about endo (even ones who call themselves specalists or are listed on some web sites as specalists, learned that the hard way). Get all the info you can and just keep searching for more answers. One thing that endo taught me was to not put my well being into the hands of Dr's. They just don't have the vested interest that I have and only I can make an informed choice.
post #39 of 48
Hi Patty!
Yes, I do totally agree with everything you said! The doc who did my first lap called himself an endo specialist, only took patients who complained of abdominal pain, and was a total quack. My surgeon fixed the adhesions and other damage caused by my first lap as well as removed the endo that first doc said couldn't be removed, and I am very confident that he can fix the damage caused by my cesarean as well. I don't think I'd need to see him again yet, and it's been five years ago, if it weren't for the cesarean. As much as I hate doctors, I honestly trust this one. He's so different than any other doctor I've ever seen. AND he helped me before, when nobody else could.

Diet definitely helps, but it's just gotten past the point where I can function properly. As a SAHM, I can't just call in sick and lay on the couch a few days out of each month like I used to do. I have to get the problem taken care of.
post #40 of 48
anybody still subscribed to this thread?


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well, my surgery is scheduled for Dec 3, that's the Friday after thanksgiving. It's the same doc that did my last surgery, five years ago, and whose website I'm sure I've linked to dozens of times anyway, just wanted to ask that maybe you all would think of me that day. I don't do well with doctors and hospitals, uh, I kind of have some serious issues with doctors and hospitals as a matter of fact, but I know this doc is so nice and so talented with excising endo or I wouldn't even consider it! anyway, it will be nice to be rid of the pain, even if I do have to go back in five more years.
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