[Celena]

I've been doing some reading on It, but want to hear first hand stories.... configuring something wasnt right to getting diagnosed testing and treatments up until now..... feed me you Information please!

[angel3y35]

You can come over to the TTC with endo board too. There are plenty of ladies who will be willing to share their stories.

It took me almost 5 years to get diagnosed. I would (and still do) have horrible cramps - to where I'd end up at the ER or an urgent care clinic every month. I also had/have really bad lower back pain, pain from my hips down to my knees, and stomach problems (either constipation or diarrhea). Once I was finally diagnosed the doctor tried me on a couple of different BC's which didn't work. After that I had a lap - the only real way to diagnose endo. My first period after the surgery was just as bad so I did Lupron for 13 months. My first period after that was awful again. That Dr. didn't believe the endo was back so soon so he sent me to a urologist and gastroenterologist. The only thing that came out of those were IBS and acid reflux which would not cause the pain. He wasn't willing to help anymore so I saw another Dr. in his practice. (My current Dr. whom I LOVE). He immediately said another lap. I was good for a few months after that one but the pain came back and I started Depo for over a year. I just had my 3rd lap last Feb. He removed a large cyst, endo, and repaired a hydrosalpinx. I'm now almost a year out from my last lap and the pain is back 100% again which is why I'm seriously considering a total hysto and oopherectomy.

The bad thing about having endo is the only way to keep it at bay is birth control - and even that doesn't always work. You are a lot more fertile for the first 6 months after a lap though. The m/c rate with endo is right at 43%, the avg. woman has a 20% change of getting pg every month. Endo women have about a 3-5% chance. The infertility rate is way up there too, I'm just not sure the exact number.

I'm sorry if I scared you - I don't mean to. I just know that if I were just learning about a disease that I thought I might have I would want to know everything - good and bad - and not have my feelings spared.

[.:Shortcake:.]

Celena I have Endo & PCOS. I got diagnosed with the PCOS not too long after my first loss. And then last year on July 2nd I had my HSG/Lap & and while inside they found my endo. She removed it with a laser but did say that with my PCOS & Endo it increased my chances of M/C and also made it alot harder to get pregnant. It really scared me but I have gotten pregnant since then. I do have the pain and sometimes it's too the point when I feel as if I could pass out it hurts so badly but it's something I have to deal with until I'm done having children and have a hysterectomy. I hope you do not have it.

[TTCin2010]

I have had painful heavy periods that make me vomit for as long as I can remember. The cramps are in my stomach, back and legs. I get very hot, and sweat the first few days. My flow is extremely heavy, a super tampon lasts about 45 minutes the first few days. My periods last a full seven days. I had always mentioned it to my gyno (several different ones) but they just told me it was normal (EYE ROLL)


I have never taken birth control, and just dealt with the pain. In 2009 sex started to become painful, and my stomach was tender. My pap in 2009 was painful, so i was sent for a V-US which showed two masses. I was then sent for a CT-Scan so that they could get a better look. I was told it was most likely endo, but the only way to know for sure is a lap.

The doctor in my (small) town told me that I should go harvest my eggs before surgery, because I was going to loose my left ovary and they could not guarantee my right one. I decided to seek a second opinion from a more experienced doctor.in Atlanta.

He painted a much brighter picture. He said that he could remove the endo without risking my ovaries. He did say that my tube would be removed. I had surgery in Feb 2010, my diagnosis was stave IV endo with severe adhesive diesease. I also had my appendix removed because there was sizeable endo on it. I still have endo on my colon

I told to try to get pregnant for 6 months. By April I was pregnant, and lost the baby in July. I was told that getting pregnant would be hard, but staying pregnant shouldn't be an issue because everything looks "normal" inside.

Its been almost a year since my lap, and we're still trying to get pregnant on our own. My RE wants me to go on Depo, until we can afford IVF I recently had a US that showed no cysts (but it doesn't rule out endo) I also had my FSH levels tested and they were within normal limits. So for now we are going to continue to try on our own.

Let me know if there is anything else I can help you with.

[~LaurenNoel~]

I have endometriosis too. I was diagnosed around 18 I believe. I used to bleed so heavily, that it was like having a miscarriage (impossible since I wasn't sexually active). I also had the pain that was close to unbearable and digestive issues. I was told it was unlikely I would have children. My mom and aunt also have it. The only thing that helped was taking Depo as birth control. My gyn also told me at 19 (and newly married) to get pregnant because a lot of times it helps with endo. I'm not sure if that is true since I've pretty much been pregnant since 2008 when we conceived Wesley or breastfeeding, so no periods.

[angel3y35]

Originally Posted by TTCin2010

Its been almost a year since my lap, and we're still trying to get pregnant on our own. My RE wants me to go on Depo, until we can afford IVF I recently had a US that showed no cysts (but it doesn't rule out endo) I also had my FSH levels tested and they were within normal limits. So for now we are going to continue to try on our own.

Let me know if there is anything else I can help you with.

Just wanted to throw my in. I'm guessing you probably researched Depo - but just in case. It can take 4 to 10 months after your last shot to be able to get pregnant. Some doctors/statistics say 18 months. Granted it took my endo pain away but I never would have taken it as long as I did if I had known that.

Although now that I think about it, I wonder if bypassing everything by doing IVF would cancel that out?

[TTCin2010]

If you take depo and then do IVF is doesn't matter bc they use drugs to manipulate your cycle. I am trying to avoid depo bc of all of the size effects.