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Is there a board for Endometriosis talk?

post #1 of 21
Thread Starter 

Hey ladies, I'm kind of new around here.  Wondering if there is a designated board for endometriosis discussion?

post #2 of 21
None that I've seen & I've been here too long (15 mos). I have a consult for laprascopy tomorrow for endo & I have a friend on here that had hers a few weeks ago so we could possibly help.
post #3 of 21

I was just diagnosed with endometriosis a little over two weeks ago after a laproscopy. We've been stuck in the unexplained category for so long that it seems bizarre that we actually have a problem to focus on. I am really intimidated by Lupron but since we are doing three months of Clomid at 150mg now, it will likely be needed to tame back down the endo that I'm going to accelerate with stupid Clomid. Agh. And I am a doula who has the next three months full of births. Like 5 between now and mid July. It's like I'm a masochist deep down.

post #4 of 21
Rochelle, I'm glad you've found something that may help! I've said it before, but I don't know how you do births while TTC. hug.gif I'm assuming they cleaned out the endo they found during the lap? Hopefully that will help you with your Clomid rounds! I'll be lurking and rooting for you. goodvibes.gif
post #5 of 21
Perhaps this thread could be the endo discussion. I'd like that. I was diagnosed with endo last week when I had a laparoscopy.
post #6 of 21

I have endometriosis too. Hi, ladies. I had a laparoscopy in October 2010 to try and figure out why I was having terrible pelvic pain. A "mild" amount of endo was discovered and taken out at that time. Turns out it wasn't the endo causing my pelvic pain, but a hip out of joint, or something like that. I did physical therapy and now have no pain.

 

I lost my first pregnancy in March 2011 (blighted ovum) and my second in July 2011. No cause given for the second loss. I have a short luteal phase (10 days), as well as interstitial cystitis, which is well-controlled with meds and diet currently. We have just started trying for another pregnancy after a break from August until last month, while I had a LEEP for cervical displaysia, and we made sure it did the job. If it's not one thing, it's another.

 

So... I've been wondering if I should have another laparoscopy to see if the endo has grown back and if so have it removed again to increase my chances of, you know... an actual live baby. My gyno really doesn't seem worried about me getting pregnant again, and maintaining the pregnancy, but I feel like it may be time for some actual action to be taken. I don't really know. We will be licensed for foster care next month, and that's kept us really busy.

 

It's really nice to have somewhere to talk about this.

post #7 of 21

Rochelle- did they remove the endo at your LAP or just diagnose? It seems strange they would recommend Lupron... Hope we can be here for support.

 

Resque- if it was removed in 2010 and they got it all it shouldn't be back but it all depends who you had remove it and how thorough they were, what mode of removal they used. Are you having any symptoms it is back?

 

My lap was 5 weeks ago. I also take pycnogenol 50mg 2x a day to reduce inflammation (30% reduction in endo symptoms in 12 weeks). I have stage 2 endo that was found on my bladder, by my left and right ovary, and my left ovary was rescected due to a complex chocolate cyst. I'm already feeling much better but I'm just past ovulation on my first complete cycle post LAP. I had 1 day of EWCM on CD 15, was hoping for a better O but better luck next month.

post #8 of 21

Rochelle - Did the doctor tell you that Clomid would make the endo worse? I had a bad reaction to Clomid so I'm on Femara. My doctor said that Femara could possibly help with endo. I'm not sure I believe him though!!!! I have noticed that when I take progesterone in my LP, I have less AF pain so I'm assuming the progesterone is beneficial for people with endo.

 

Resque - I've read all kinds of stuff about endo recurrence. Some sites say that only 40% of people get a recurrence after the lap. Others say that almost everyone has a recurrence, generally after 1-2 years. Also it sounds like most pregnancies happen with 18 months of lap so if you are past that. However there are plenty of people who get pregnant years after a lap. My cousin had 4 laps when she was in her 20s and started TTC about 4 years after the last lap. It took her about 9 months to get pregnant but it happened without any further intervention.

 

toothfairy - I've never heard of pycnogenol. Can you tell me more?

post #9 of 21

yes, toothfairy - tell us more about pycnogenol, please :) also, maybe you can educate those of us who are not going to a napro doc about the things you have learned? this might be a good thread to do it on!

 

 i had a lap on the 1st of march to remove stage 2 endometriosis and a polyp in my uterus. rochelle/sourire - i was on clomid prior to having the endo removed and i definitely think it made my endo worse! i am now on my second cycle on femara and second cycle post lap and i don't know if it is the femara or the removal of the endo or both but i have none of my typical lp symptoms like pelvic pain, night sweats, sore breasts... etc. also, i had a miscarriage in 2010 and prior to getting pregnant i never had endo symptoms. there was something about that miscarriage that threw my body out of whack for a good year and a half before i was finally diagnosed/had the surgery.

 

resque - i am so sorry for your losses. how sad to go through two losses so close together :(

post #10 of 21
http://www.nutraingredients.com/Research/More-evidence-for-Pycnogenol-endometriosis-benefit

I started taking Pyc about 14 weeks ago. My first period on it I actually bled through my pants (horrifyng, right?!), but it was because I didn't have cramps. Yeah, the cramps that wihout advil or tylenol every 4 hours had me curled up on my bed for 15 years... I had slight cramps for the first day but nothbg prior to AF actually startin. I was amazed.
My first period after lap was painful, not sharp, gut wrenchng and unbearable, but just dull and annoying, just enough that I couldn't ignore the dull ache. I took tylenol twice to relax for sleep but it was nothing compared to the past.

As far as NaPro, I haven't had my first official appt, just a phone convo. But he did say magnesium,b6(before o), iodine, fish oil & vitamin D. I don't know much else just yet, but I have noticed a lot of positive changes. My nails aren't thin and peeling, i'm warmer (used to have icy cold feet, for years), better evergy, i don't get sleepy after lunch(who knew vitamin deficiency caused that), and the fibrocystic tissue in my breasts has decreased!
I've also noticed after LAP-- no breast pain after o, less spottin and what i had was pink, not brown, no night sweats.

I don't know much about Clomid affecting endo but Femara is just better overall so... Why bother?
As far as recurrence, agan it depends on the mode of removal. I got my DVD so I know mine is gone. My doctor would say mine wont be back, he got it all. He has an excellent reputation. He also said most pregnancies occur 6-9 mos after LAP because it takes your body a long time to detox the inlammatory response frm endo. I think the pycnogenol has made that go even faster.

It is just nice to be looking toward the future.

Rochelle- honestly, if you are ttc and your doc is suggesting suppression therapy, I'd find a new doc. Suppression is for symptoms, it wo n't make you any more likely to conceive after using it. Also, 3 months just isn't long enough to give yourself after endo is removed you are still likely inflammed and need time to heal. I just want the best for you and uninformed docs are 2 steps back in your process. I can't push NaPro enough if you have any local providers.
post #11 of 21

thanks, toothfairy! can you give us the dosage for pycnogenol as well as the magnesium and everything else you listed? also, i take vitamin b complex everyday... is there a reason why your doc said not to take b6 after O?

 

since i got yet another bfn today (12dpo) i want to start out this next cycle with this regime!

post #12 of 21
Ummm the pycnogenol is 50mg after breakfast & dinner. Buy it on Amazon, it is very pricey in stores.
The B6 isnt necessarily just before O i think it is jst important bc a lot take it only after o, which is backwards. I'll clarify next week after my appt.
Magnesium is with calcium i think 500/1000... Normal dose. Vitamin D is 5000 units. Rainbow light prenatal one multi... i take 2 kelp tablets but did a month on 1 then increased , tey are whole foods brand, not sure of the dose exactly.

Again, I'll clarify what else I hear next week. Anyone else get good advice from your docs?
post #13 of 21

Sorry, I just kind of disappeared again. It was finals time and I graduated nursing school a week ago so it's been crazy hectic. My husband and I also finally said some vows and had a reception (after 5 years of marriage!) on the same day as my nursing school graduation. I barely held it together as I spoke about his unconditional support regarding our infertility struggles and his encouragement on the days when it doesn't seem like anything could be worth all this. There are some days when I don't really know how I manage to work as a doula, but I also kind of feel like if that is the closest I get to giving birth myself, I will take every second of it. My day today included an early morning new client interview followed by being the only person not expecting at a La Leche League meeting. And then I have a prenatal with a client tomorrow and speaking about the benefit of having a doula at a International Cesarean Awareness Network meeting on Monday night. It's a weird place to be the infertile in the room. 

 

And yeah, the Clomid has been pretty awful this month with the higher dose. After getting my first positive opk on Thursday night, I got two more yesterday, and another one this morning that was still positive. FF tells me that means I am ovulating today which would explain the pain I've had all day. I am glad the weather is warm enough for a dress because I can't fathom wearing pants right now. I'm looking into cutting out gluten, dairy, and giving up the copious amounts of coffee that got me through nursing school. I would love to get a second opinion from a new doctor but there aren't any in my area that specialize in infertility and the closest RE's are 2-3 hours away in all directions. 

post #14 of 21

double post

post #15 of 21

and then a triple post! Sorry!

post #16 of 21
Deleted
Edited by here we are - 11/9/12 at 10:26pm
post #17 of 21
Welcome here we are,
I'm not sure this board is very active anymore but there are a few women with endo still floating around so hopefully you'll get a few more responses. I was diagnosed and had my endo treated via LAP in March. I had a lot of bowel adhesions but honestly only had occasinal IBS type symptoms, like upset stomach/diarrhea moreso than pain. I did notice it was worse at the start pf AF but never had any real pain the rest of my cycle. Are you eligible for laproscopy to have it treated? I'm sorry you are in so much pain. Endo really is terrible.
post #18 of 21

I have Endo and, I believe, this is the only board that ever had a specific Endo designation. There are quite a few of us suffering from Endo who are on the IVF board and on the Infertility One Thread.

post #19 of 21

I'll revive this thread though and say I am sorry you aren't feeling well. I'm having lots of pain tonight. Neither vicodin or percocet is touching it so far.

post #20 of 21

Thought I would come back and update. After many many months of failed attempts, due to my luteal phase being too short (in general 8-9 days), and my doctor trying me on every kind of progesterone available (the cream, the pill, and the shot all failed to raise my progesterone and extend my luteal phase), and several months of Clomid by itself (100 mg actually made my luteal phase SHORTER!), I tried the progesterone suppository as a last-ditch effort. Last month, on Crinone alone, my luteal phase was 14 days- I stopped using it at day 13. I had never gone over 11 days in my life. 

 

This month, on Clomid plus the Crinone... I am pregnant. Who knows if it will last, but I'm just tickled pink to know I can still GET pregnant. For now, that's enough for me. 11DPO and counting!

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