hello everyone! i thought i would start a thread for women who suffer from the horrific disease endometriosis, because i dont think there is enough support for women who suffer from this disease in the outside world. i was thinking that maybe we could come together in this thread and discuss our situations and offer advice or just vent here so that we can provide support for other women aswel as ourselves. this disease can be difficult to cope with expecially when it affects your fertility, not many people can relate to the damage it can cause to someones life.

ok so ill start with me, ive been ttc for 2.5 years now with no luck. ive had 6 rounds of failed clomid, a hsg which showed fully open patent tubes, bloodtests which were normal, been tested for std's and infections which came back clear and im currently waiting for a laparascopy so i can be diagnosed with endometriosis. my gyno thinks i have this because i am ovulating normally, have regular cycles, have never concieved a child, extremely painful period cramps, backache, bleed during bowel movements whilst on my period, have ibs symptoms and bloating. the only way this can be diagnosed as you know is through lap so cant wait to get it done!

so whats your stories then? what stage have you been diagnosed with? what tests have you had? what treatment you had? how long have you been ttc? will it be your 1st child? ect.

im looking forward to gaining team members and friends though this thread! and i look forward to hearing your stories!

ok so am i right in guessing that theres no one else using this website that is ttc and suffering from endometriosis? i must be the only 1!!! lucky me.

thanks for the support

Hey! I must join you! I have been careful using BnB lately because I have house guests.

You're not alone!!!! In fact I've even friended other sufferers that I'm going to make aware of this thread.

I have had severe endo for about 10 years and was finally diagnosed with stage 3 endo December of 07. I had an ultrasound to look for other issues as well and I had a polyp at the entrance of my uterus and 2 medium sized cysts on my ovaries. I scheduled my lap, hyst and dye for Feb. 2nd 08. Tubes were clear and cysts were removed. I had a lot of yellowing inside and many adhesions that were hardly able to be reached. She got what she could and informed me that if it got that bad again that I would have to look at my other options, for instance getting my "uterus removed" (those were her words, and oh my goodness what a shock that was!)
I attacked my disease from a natural angle. I am on supplements and didn't persue more medical intervention past the surgery. I wasn't interested in synthetic chemicals because I wanted my body to do the work.
We've been TTC for 6 years now (I hardly count the months anymore......) and the first 3 were very casual, contraception free. I knew something was wrong and didn't hold out much hope at the time. In more recent years I've been charting like a mad woman and BDing all the time (which, luckily we do anyway...hahaha). After my surgery we had a difficult time trying to decide if it was safe to get pregnant dispite the dr. telling us it was the prime time, we used condoms the month afterward. (people don't know this but the chances for miscarriage are great after an intense surgery like that-especially with the endo anyway and I wasn't ready to have the joy of a bfp and then to have it ripped from me)
As of late, I am on an incredible supplement that has changed my life and my endo dramatically. I've had 2 chemicals in the last 5 cycles and I believe the preseed is the cause for getting the egg and sperm to meet in the first place! I feel that with each week that passes my body is becoming more receptive to a pregnancy and I am more confident than ever that I can do this!!!
I'm not against medical treatment, but at 26, I feel there's time for that later, after I've exhausted the means to do this naturally.
Hubby and I have been married for 8 years and have been together for 9.5. He's 33 and healthy. (I was going to persue a SA for him but opted not to after the last chemical, I might change my mind, though in the future) Oh, and in February of this year I had an ultrasound to check my ovaries and there was a perfectly functional ovulation cyst!! I was thrilled and my dr. was impressed.

Ok, so that's my story I hope I'm not too much of a naturalistic freak for you.....

I wish all the best for you!!!

Hey there both!

Can I join too? I'm not quite diagnosed at the moment, but the Doc has fast tracked me past the ultrasounds and straight for the lap & dy, cause he's pretty convinced....and now I'm a bit scared!

I've been googling like a mad woman for the last two weeks, and the information is good...but it just doesn't seem to quite answer my questions. It'll be nice to have some buddies to chat to, about this.

My story, well, am 33 have just come back from a BnB break after cycle 21 failed in January. Whilst I was away, we still tried and tried.....but no luck. It was after developing a nasty pain in my groin, which worsened with the onset of AF which sent me off to the Docs. He knows I've been trying and talked about my lack of BFP's and excrutiating cramps, and he packed me off the hospital. They talked about my lack of BFP's, excrutiating cramps, bit more medical history, DF's little swimmers, and then examined me. At the end I got two blood appointments and a date for a lap and dye. Had CD3 bloods this morning and DF has SA on 16-2, then me back for CD21 bloods, then it's me again on the 11-6 for lap & dye.

I'm so scared they're going to open me up and tell me the worst. That it's stage 4 and a mess in there.

I have a question??? Do you girls get hot sweats around AF? I used to get a night of it just before the witch was due, but now they're happening on CD1 & 2...really quite bad. Hate being hot, and it's making sleeping unbearable. Is it just me?

I'm a bit a google nightmare at the best of times, but the thought of endo and hot sweats has sent me into a typing frenzy. I'm a big fan of herbal remedies andalternative therapies, and was thinking I might try something whilst waiting for L&D.....do you have any advise or suggestions?

Big

Nicnac

can i join please? have had endo for about 9 years now, and now had to have my right ovary removed due to it... im 20years old...

Had 1 daughter but she died shortly after birth in october 2008... have since had ovary removed and am trying again for my 2nd little one...

I was finally diagnosed with endo in Jan 2004 via a laparascopy after having awful periods since the age of 12. I would pass out often and it made school really hard!

Someone asked about the hot sweat... erm, yeah, I got really bad hot sweats, not just when it was my period though, often throughout the cycle. First time my now DH witnessed an attack he wanted to take me to hospital and I had to explain what was going on, great for a 3rd date!

I had 3 early mc when we weren't trying, although it kinda gave me hope as a number of Drs had told me my chances of conceiving were slim. September 2006 when we decided to officially TTC I was put on a 3 month round of Zoladex, although being on Zoladex was really really tough it was amazing the difference afterwards, for the first time in my memory I felt like a "normal" person. I coupled the Zoladex with accupuncture which really helped.

I fell pregnant in the April but unfortunately mc at 12 weeks. Then 2 months later I had an ectopic pregnancy. They thought they'd managed to save the tube. A hsg in Jan 2008 showed my right tube to be totally blocked and I scheduled to have it removed in late April after my wedding. Never got that far because early April I collapsed, there was an infection in my tube, yuck! So it was removed.

My left ovary rarely ovulates and now I was left with a left fallopian tube and none on the right. As you can see though, in the August I fell pregnant again and now we're expecting our baby at the end of the month.

I am worried about what will happen when I'm not pregnant again, how severely the endometriosis will come back. Pregnancy has been a doddle compared to endo! I would definitely use accupuncture again for pain management, and if it comes to difficulty ttc no 2 would go back on Zoladex.

It's a bloody horrible condition and so little understood. Good luck with your ttc journeys girls and feel free to ask questions, I pretty much tried every treatment going...

Just imagining the sheer terror on your DH's face made me smile....it must be a male thing....Panic straight to the hospital!!

So so happy for you....hope all goes well in your final few weeks

Ladies! This is great!

Ok, I need to say what is working for me-
I'm sure we all have very similar things going on, yes, I used to get the hot sweats too....horrid! But in August I started to take Maca powder in conjunction with starting another thing called Immunocal. Ladies, this stuff is Amazing!!! It's expensive, but it is worth it!! Anyway, this is what it is-it's an immune booster. It helps your body create glutethione which is a master antioxidant...(and if you've done your research-and I know as endo chicks, we have!!) we are immune compromised and need to up our antioxidants!! Also, it helps with inflammation and low energy-PERFECT!

Ok, I'm really excited about this because of how much it's helped me. Pardon my enthusiasm but I have been dying to let lose this 'secret' to my BnB ladies who suffer like I have.

I would love to help you guys try it if you want so PM me and I'll get you more info if you're interested!

I have more to say but I don't want to sound preachy

I like this little group we're forming!

And hey, an awesome website that has helped me tons is-http://www.endo-resolved.com/index.html
Enjoy!

And Faerie, what an inspiration! Thank you and Congratulations!