Endo... I think?

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

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Endo... I think?

Postby queenypink » Mon Oct 06, 2014 4:04 pm

Hello - So, I'm 99% positive that I have endo. I know what you're thinking - get a friggin lap to find out for sure! My doc's won't do this exporatory surgery on me because they say it's high risk.

For the past few years - mega painful periods, mega painful urination/bm's during AF, spotting before AF, pain removing tampons, and infertility. Not everything fits though - I don't have heavy periods, and I don't have pain when BDing.

I've asked the fertility doc's many times about this... and also OBGYN's. Specifically the fertility doc says that I probably do have it and will require IVF (I'm totally summarizing here) and therefore there's no reason to put my body at an even greater risk (I have a hefty med history already).

So anyways, I'm convinced.

My question is, where to go from here...

I want to look into an endo-friendly diet. I've seen lots about wheat free and dairy free, alcohol free and caffeine free. Well, this sums up my current diet, so yikes.

Also... what about fertility? What are the ball-park success rates with IVF? IUI has been a total let down so far, so I think we are planning on going down this route if need be.

Thanks in advance for your advice and wisdom!
Me: 33 Yrs. Cervical cancer SURVIVOR! Treated w/radical trachelectomy, lymphadenectomy & circlage. Sucky FSH (12) & AMH w/in the normal/low range
DH: 38 Yrs. SA came back low-ish
Official Dx: Unexplained

Five unmedicated IUI's - All Neg.
| 29.03.14 | 29.04.14 | 23.06.14 | 22.07.14 | 19.08.14 |

IVF #1: Baseline Mar 17/15
ER Mar 30th -- 15 eggies collected, 13 mature, 10 fertilized naturally
ET Apr 4th -- 4AA Blastocyst Embaby <3
6 perfect frosty day 6 blasts/expanded blasts

BFP at 8dp5dt
Beta 10dp5dt April 14th - 179
Beta #2 12dp5dt Apr 16th - 519
Beta #3 16dp5dt Apr 20th - 2698
Beta #4 20dp5dt Apr 24th - 8337
DD born Oct '15 at 32wks gest. She's perfect!

FET #1: May 2/17 BFN
FET #2: June 6/17

BFP 8dp5dt
Beta 10dp5dt - 498
Beta 12dp5dt - 1473
Beta 19dp5dt - 11 430
queenypink
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Location: BC, Canada

Re: Endo... I think?

Postby Ready4it » Wed Oct 08, 2014 8:07 am

Hi there! I did not have heavy periods at all. Once in a while, I would have a day of very heavy flow, but periods would usually be 4 days a cycle. I had painful BM's though during AF and certain days on my cycle. Just like stabbing striking pains. Had all my tests done- labs and everything was great- had an ultrasound- everything all good.

Had the lap last month finally, and they did find endo behind my uterus near my bowel. It sure does sound like a symptom. But the problem is if you have endo and go for an IUI or even IVF, it may not stick. Endo puts off something the dr. told me that can cause the egg not to implant etc. So I dunno- I am sure there are ladies with endo that have had IVF success, but it's very costly for it not to work.

Hope you get your answers soon!
TTC since July 2013
Cycles vary from 24-28 days. No BFP's AT ALL!
Lap done 9/9/14- Stage 1 endo behind uterus and one blocked tube- but cleared after HSG.
10/22/14 First cycle after lap- BFN :(
11/17/14 Second cycle after lap- BFN
Update 2/15/15- tried femera last cycle and no luck. On 6 month after lap TTC.
Feeling hopeless
Ready4it
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Re: Endo... I think?

Postby queenypink » Fri Oct 10, 2014 3:13 pm

Thanks Ready - so with your lap when they discovered the Endo behind your uterus, did they manage to clear it all out during the procedure? And if so, did they give you any follow-up instructions/meds?
Me: 33 Yrs. Cervical cancer SURVIVOR! Treated w/radical trachelectomy, lymphadenectomy & circlage. Sucky FSH (12) & AMH w/in the normal/low range
DH: 38 Yrs. SA came back low-ish
Official Dx: Unexplained

Five unmedicated IUI's - All Neg.
| 29.03.14 | 29.04.14 | 23.06.14 | 22.07.14 | 19.08.14 |

IVF #1: Baseline Mar 17/15
ER Mar 30th -- 15 eggies collected, 13 mature, 10 fertilized naturally
ET Apr 4th -- 4AA Blastocyst Embaby <3
6 perfect frosty day 6 blasts/expanded blasts

BFP at 8dp5dt
Beta 10dp5dt April 14th - 179
Beta #2 12dp5dt Apr 16th - 519
Beta #3 16dp5dt Apr 20th - 2698
Beta #4 20dp5dt Apr 24th - 8337
DD born Oct '15 at 32wks gest. She's perfect!

FET #1: May 2/17 BFN
FET #2: June 6/17

BFP 8dp5dt
Beta 10dp5dt - 498
Beta 12dp5dt - 1473
Beta 19dp5dt - 11 430
queenypink
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Posts: 498
Joined: Sun May 26, 2013 10:51 am
Location: BC, Canada

Re: Endo... I think?

Postby Terra14 » Sat Oct 11, 2014 7:29 pm

Hi. Sorry to hear about your history. I have endo was diagnosed in 2011, had a lap removed almost all of it. My obgyn wouldn't give me a lap for a while either because if I didn't have it then no reason for the surgery but catch 22 is surgery is the only way to diagnose it. I had all the symptoms and was convinced I had it and I was right. Didn't have extremely heavy periods either they only last 4 or 5 days with one or 2 of those being heavy. No spotting. But did have pain during and after sex depending on the position and tmi but roughness, painful bowel movements during AF. Pain during O etc. But good news is yes most of mine was taken out during the lap and my obgyn said I would have no problem conceiving or carrying to full term just fine. However my hubby and I weren't married yet and I didn't want kids just yet. So now we decided to try but no success yet on our 4th cycle. But hubby is a diabetic and has issues of his own so I most likely am not the reason we haven't conceived yet. Hope that helps. There's more to the story but that's the condensed version lol. Feel free to ask me anything.
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Re: Endo... I think?

Postby cbusch87 » Fri Oct 17, 2014 12:08 pm

I didn't have any typical symptoms of endo either, except what I feel like is pretty typical cramping on days 1-2 of AF and some bowel discomfort during those days. I've always had irritable bowel / food intolerance issues so I figured that was the cause of the bowel pain. But my RE did a lap on me in July to check things out since he figured I should've gotten pregnant from 3 medicated IUI's. Turns out there was a tiny amount of endo in there. He removed it because at the post-op told me that even a tiny bit of endo can inhibit conception since it can cause an inflammation response in all your reproductive areas.

I gathered from that conversation that endo isn't as significant a factor in IVF, since the conception happens in a controlled environment. That said, if you've heard the IVF quad couple's story lately, you may notice that she had egg quality issues due to the extensive endo she has. I've had friend conceive naturally (or with little fertility treatment) with terrible endo and I've heard of people with some endo having fertility issues. So I don't really know what to think, it may just depend on the woman.
Married in 2007
TTC since Fall 2009
Me: 27
– All tests have been normal
DH: 30 – Azoospermia (0 sperm count, SCO syndrome)
4 failed IUI's

IVF : Nov 2014
2 blastocysts transferred 11/8! 5 frosties.
:bfp: 11/13(5dp5dt) : BFP 5dp5dt!!
Beta #1 (8dp5dt) : 204
Beta #2 (10dp5dt) : 565
Beta #3 (12dp5dt) : 1,200
7 week ultrasound : Twins!
8 week ultrasound : Lost Baby A, Baby B still going strong
♥ Baby boy due 7/27/15 ♥

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Re: Endo... I think?

Postby Ready4it » Sat Oct 18, 2014 6:22 am

I am so sorry I didn't reply sooner- yes they did remove the endo--- did an hsg too while I was in surgery and one of my tubes were blocked, but the doctor said the dye came out a few minutes later and it was cleaned out then =)
TTC since July 2013
Cycles vary from 24-28 days. No BFP's AT ALL!
Lap done 9/9/14- Stage 1 endo behind uterus and one blocked tube- but cleared after HSG.
10/22/14 First cycle after lap- BFN :(
11/17/14 Second cycle after lap- BFN
Update 2/15/15- tried femera last cycle and no luck. On 6 month after lap TTC.
Feeling hopeless
Ready4it
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Posts: 38
Joined: Sun Aug 17, 2014 5:45 pm


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