What's your story?

Support for anyone who has been diagnosed with endometriosis, or thinks they may have endo.

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What's your story?

Postby Sen » Fri Jan 18, 2013 10:49 am

Hello Ladies, wow, I never thought I would end up in this section of the forums when I joined in the summer last year..
As far as I knew, I was healthy with no fertility problems, and when DP and I conceived on our 3rd cycle, I felt positive i'd be leaving the TWW ttc boards behind.
But no. :doh:
M/C at 5 weeks.
I thought, OK, no problem, hundreds of women have early m/c's, i'll just try again.
The following month we conceived again!
Then I collapsed at 9 weeks, the pregnancy was ectopic and my right tube had burst, I was bleeding internally and needed emergancy surgery to remove the baby, the tube and all the blood.

This afternoon my results came via post, diagnosing me with endo.

What the heck do I do now?!

I know this board is quiet and I may not get many (if any) replies, but I wanted to hear your stories, with or without current success. How do you cope, how if your life?
I hope someone wont mind sharing their experiences with me (and the rest of the world).

Charlotte (34) DF (23) DS1 (2)
'One n Done' for now.

:angel2: M/C 4th Sep 2012
:angel2: Ectopic & Left-Side Salpingectomy 4th Dec 2012
:bfp: 11th July 2013
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Re: What's your story?

Postby ambernicole8484 » Fri Jan 18, 2013 8:30 pm

I was diagnosed with endo in aug 2012, among other things. I'm constantly worried about blocked tubes or ectopics. In fact, I remind my dh every tww that he has 4 hours to get me to hospital if I collapse. Anyway, you can't loose hope. There isn't really much you can do for endo besides bcp, and well, I'm sure that's not an option for you same as with me. I've heard that gluten free diets can help but I have never tried. Depending on how severe your endo is and how long it takes to get a BFP you might be able to get another lap (I know. Fun right?) to keep your chances high.
Me 30 ~ DH 31 ~ DD 11 - DS 12/5/14

BFP ~ 4/2/14 <3

10 years and 11 months after our sweet baby girl, our sweet baby boy arrived <3

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Re: What's your story?

Postby AGFVB » Sat Jan 19, 2013 3:02 pm

I was diagnosed with endo in 2005, I had a baby in 2000. I never had any symptoms or issues prior to 2005. I have had 6 laparscopies, one of which was Laparascopic excision at the Center for Endometriosis Care in Atlanta, GA. The surgeries since then were for ovarian cyst removal and removal of scar tissue. My last lap 18mos ago my doctor saw no active endo, just scarring. I was pregnant in 2007 (unplanned) and had a miscarriage at 7-8 weeks. I have spent countless hours researching endo, I think I could write a book! I cannot take BCP due to a blood clot, so I only manage my endo with pain medication. I did have an Mirena IUD for 3 years which controlled the endo because luckily it stopped my periods. I had it removed 15 months ago. I was hoping I would get pregnant without trying but hasn't happened. I started my first round of Clomid this month and am also taking Prometrium. My doctor has always told me it is a good sign that I have been able to conceive. After 3 rounds of Clomid she will have to refer me to a fertility specialist. I am hoping I get a BFP this month! My periods and ovulation are very painful, it is a very frustrating disease that few people can understand what you are going through. I desperately want to get pregnant because I feel the only relief I will get will be from a hysterectomy. Trying to remain positive and hopeful!
My Ovulation Chart
|| [url=http;//www.fertilityfriend.com]Ovulation Tracker[/url]
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Re: What's your story?

Postby venusmillennia » Wed Jan 23, 2013 10:30 pm

I was diagnosed with endo Dec 2012. I've had painful cramps and pretty constant spotting for almost 2 years. I was finally diagnosed through a laproscopy. My tubes, ovaries, appendix and part of my bowel is stuck to the back of my uterus. I'll be starting lupron in the next month or two for 3 months to calm my endo down then off to surgery for me. If all goes alright my Dr is still optimistic that I'll get a Bfp. It's a scary road to go down but we're not out yet. Keep the faith. :D good luck to you!
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Re: What's your story?

Postby ete29 » Mon Feb 11, 2013 11:58 am

I had no idea I had endo when we began TTC. I had painful periods, but only the first day and I thought it was normal. Months went by and I never had a BFP. I began going it the gym every day after work to reduce stress. That caused pain in my ovaries, which showed cysts when I had an ultrasound. I had a lap and they removed the cysts and other visible endo. They left the endo on my bowels untouched. I followed the endo diet and went to an acupunctureist and began taking various things to aid digestion. I always had loose bm I think because of a gluten sensitivity and the naturopath said I was deficient in various nutrients. I conceived DS two months later. I breastfed him for a year, then got pg with DD without trying. I breastfed her for two years. The whole time I was pg or breastfeeding, I had no endo symptoms. I thought I was "cured". Now that in not breastfeeding I have extremely painful ovulation pains so bad I'm afraid to be driving on the day I ovulate...like extreme menstrual cramps, nausea and bowel pain/pressure like I'm about to birth a baby :omg: . I have Mirena so my periods are light, and not abnormally uncomfortable. Sigh. My disc wants me in birth control pills to prevent ovulation, but I'm afraid they will make me depressed. So I haven't taken them. There's my long winded story :) endo sucks,
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Re: What's your story?

Postby hkdonu » Thu Feb 14, 2013 2:20 am

hi and welcome,
when I was young my cycles were really long and irregular and af was bearly noticeable (very light and only 3 or 4 days - I know brilliant right?) I started on bcp when I went to uni for convenience (so I'd know when to expect af) and I met my first bf and it seemed the best idea to stay on it (really not ttc then like most 19yr old's!)
when I got married aged 28 dh and I talked about starting a family but he was out if work so we put it off and I stayed on bcp. then summer 2011 just before my 30 birthday I had horrific abdo pain ( gp sent me to hospital ? appendix) tests showed nothing but pain came again following month so referred for us scan for appendix or pcos which showed nothing, 3rd time it happened I was able to show there was a pattern and gp referred me to gyn who suggested lap to confirm endo
I had the lap Jan 2012 and finished the pack of bcp I had and didn't get any more as dh and i decided there's never going to be a good time for babies but if we only have a small window we should try now (hes still out of work) in my head we've been ttc since march/April last year but realistically with over 10 years on bcp it's only really since September/October that my body would be back to 'normal' ( coincidentally when i started having pain again) I've been charting as my cycles are still irregular and getting longer and I'm having months with no ovulation but there's not much point going back to the gp till summer as they'll set we've not been trying a year yet and we should give it more time.
hope you all get your bfp soon, fairy dust to all of you x
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Re: What's your story?

Postby Menehune » Thu May 16, 2013 6:26 pm

Hi! I was diagnosed with endo in Dec 2012. We've been TTC #1 since 2009. I also have mild PCOS and uterine polyps. My periods always ranged from 27-35 days, with an occasional 40 day cycle. I had random periods with excruciating pain. I never really thought much about it until we started TTC. I was on BCP for the better part of my 20s, so that was probably masking the endo and PCOS. I think the endo came back raging when I came off BCP and we were struggling to conceive. The lap in Dec 2012 showed endo on both ovaries, and on my bladder (I'm still trying to figure out what a bladder flap is). I used to have a very weak, small bladder, and since the lap, I have a "bladder of steel" which is actually pretty awesome :rofl: . I'm thinking the endo on my bladder was the cause of my weak bladder.

Last year (before the endo dx), I had a rough 6 months of digestive issues. My docs couldn't figure it out between doing elimination diets (gluten, dairy, etc.), blood tests, and even a colonoscopy. My RE at the time refused to do a lap saying that my symptoms don't present like endo. I love my current RE who did not hesitate to recommend a lap. I also didn't find out until last year that my mom had endo when she was about my age. None of my other 3 sisters seem to have fertility issues as they all have 2 kids each. I still sometimes have shooting pains during periods, but the digestive issues have eased, thankfully.

We are proceeding with IVF #1 in the next month. We are really, really hoping we get lots of good embryos so we can *hopefully* conceive #1 and freeze the remaining embies for later transfers, as needed. It has been a long, arduous journey. I am thankful for this forum as I have often felt alone in my journey.

Best wishes & baby dust to all!
Me - 36 (PCOS/Endo/polyps), Him - 37
TTC #1 since Jan 2009
MM/C Apr 2010 @ 5wks
Clomid only Sept-Nov 2010
Clomid/IUI Feb-Mar 2011
Acupuncture 2011
IUI #3 Oct 2012
Started Metformin for PCOS
Clomid/IUI #4 Nov 2012
Laparascopy/Hysteroscopy/D&C Dec 2012 - Endo removed from both ovaries and bladder, uterine polyps removed
Clomid/IUI Jan-Mar 2013
Mar 2013 - Acupuncture to prep for IVF
Hysteroscopy/Endo scratch/polyps removed May 2013
IVF #1 June 2013, Long lupron, follistim/menopur, 30 eggs retrieved, 27 mature, 15 fertilized, 11 5-day blasts, freeze all due to OHSS
8/23/13 FET 3x5-day blasts transferred, BFP 6dp5dt, betas 380 @ 10dp5dt, 810 @ 12dp5dt, 38,185 @ 22dp5dt, U/S 9/26 Twins!
The twins arrived at 34 weeks, baby boy spent 2 weeks in NICU, baby girl spent 3 weeks in NICU
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Re: What's your story?

Postby Babyhopes28 » Sat Jul 20, 2013 7:08 pm

I was diagnosed with endo after a lap in 2009, after surgery I was on lupron for a year and depo for two years. Now that I'm married we are ttc and it's frustrating. We have been ttc for a year and my ob thinks its because of my weight. I think it's because my endo is back or I need a little help getting started, I just feel like being on the meds so long effected my hormones. Going for tests this week but its so depressing not knowing and being told its because I'm overweight. Any advice would be appreciated. Thanks
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Re: What's your story?

Postby ttc6yr » Sun Jul 21, 2013 9:31 pm

Hi ladies! I just wanted to help with an idea. I hope it works for you all. I'm pretty positive it worked for me twice... Get a HSG done. To flush tube. Even if you don't have tube issues. I have been ttc for 6yrs. I have what the dr. say mild to severe endo. I had two laps one that took my right tube and one to remove endo and my tube from pelvic wall. I have sufferd 6 mc 2ectopic. After my surgeries I thought for sure I would get my bfp. Nope, first a year went by then 4yrs and nothing. another surgey, thought that would work. Nope, another year and another surgery and stll nothing... My dr. suggested the hsg. Its not a fertiity treatment so most insurence covers it. The dr. that did the test not my ob told me try to time it just right the next 3 cycles. She said the test is like drain'o and it flushes you out and give our little ones more of a chance... It really worked for me twice. I got my bfp on the 3 cycle the first time I had it done. I lost that baby in march. I asked my dr. to repeat it right aftet my loss and was in clear to start trying again and we nailed it the first cycle after. I'm now 13 1/3 wks now and by early ultrasound found out its a girl!.. Good luck ladies! I hope this helps;-) baby dust to all!!
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