New to all of this

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

Moderators: unaffected, JessM, southernbelle, maddy

New to all of this

Postby amandasue3612 » Wed Sep 11, 2013 11:58 am

So. My husband and I have been TTC for about a year and a half with no luck. Now baby fever has hit me and I so badly want a little one on the way. I went and finally saw a gyno which just by talking to me he thinks I have endometriosis. So we are doing a full range of test from the HSG, blood work, an ultra sound, and a SA from my husband. I know its possible to have kids with this however it scares me to think that I could possibly not have any. Any advice or knowledge on what these test are and what they will tell him ? Thanks everyone!!
amandasue3612
Newbie
Newbie
 
Posts: 2
Joined: Wed Sep 11, 2013 11:55 am

Re: New to all of this

Postby Menehune » Wed Sep 11, 2013 1:36 pm

hi amanda, glad to hear that you're seeing a doc for help. that's a great first step! the tests that you've listed are pretty much standard protocol for starting infertility treatment, so don't fret too much. however, i believe the only true way to diagnose endometriosis is via laparascopic (minimally invasive) surgery. i've been through the full gammet and am now *pregnant* via IVF.

you're on the right path, and hopefully, your doc will find an easy fix to help you. hang in there, and don't be afraid to ask your doc any questions that you have. that's the best advice i can give you. i'd also advise you to check into your insurance coverage for infertility diagnosis and treatment so you're not surprised by any bills down the road.

best wishes and baby dust to you!
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
User avatar
Menehune
TTC Princess
TTC Princess
 
Posts: 274
Joined: Fri Feb 01, 2013 7:40 pm
Location: Honolulu, Hawaii

Re: New to all of this

Postby amandasue3612 » Wed Sep 11, 2013 6:36 pm

Thank you...I had my ultra sound today and t he tech said she didnt see anything out of the ordinary...I hope so its ny first and I never thouggt I would want something so bad until you can't have it...blood test is next week hopwfully and the hsg fairly soon after that I hope ha. Thanks for your support :)
amandasue3612
Newbie
Newbie
 
Posts: 2
Joined: Wed Sep 11, 2013 11:55 am

Re: New to all of this

Postby amandamartinez10 » Tue Sep 24, 2013 1:40 am

YAY!!!!!!!! Good News!!!!! Keep us updated!
amandamartinez10
Friend
 
Posts: 4
Joined: Tue Sep 24, 2013 1:33 am

Re: New to all of this

Postby Benjismommy » Wed Sep 25, 2013 6:16 pm

Endometriosis cannot be seen on an ultrasound. If it is deepceded they can pick it up on an MRI.

I have had it removed twice, Nov '11 and Jul '12. My first surgery also consisted of drilling/draining of my ovaries (covered with cysts), a DNC to clean out my uterus of the fibroids, I also had adhesions that had my bowels in not so great places. The icing on the cake was that my uterus was upside down, and I had to have a suspension done.
My second surgery came on abruptly as I had so much pain when I tried to walk one day, then had an inability to urinate at times. Come to find out my right ovary (Which was almost removed in my first surgery, but it was cleaned up instead) had a 3+cm cyst that was pushing on things and making it very unpleasant for me. Got into surgery, they removed the ovary as it couldn't be saved, and they had to reopen the tube going to my only good ovary (Thank you endometriosis).

This is just the readers digest version, but I understand your frustration. I am now coming up to my third surgery as I had yet another T/V ultrasound and they suspect I have adhesions again, my ovary was oversized, and the folicles didn't seem to be developing properly (not enough space). They put me on a month of BC to shrink the ovary and jumpstart hormones. That was last month, I am currently 8DPO and my GYN wants me pregnant NOW.

They are discussing another surgery to fix the adhesions (and most likely clean out more endo), and going to check the viability of the remaining tube that I have. I really am drawing at straws at this point. If I need another surgery they are talking about harvesting eggs in the event the tube has too much damage to be repaired.

I know this is going in all kinds of different directions... I am 26 and too young to be told I most likely won't be able to have any more children without medical help. There are people out there that understand your frustration. We do have a wonder son, I call him my miracle child as my GYN has NO idea how it was even possible. The above problems are one of the many possible reasons he was born early.

I urge you to not go through the pain that I did if it can be avoided. My GYN wants to do what's called a "2nd look" where they make an incision in your belly button, fill your abdominal cavity with gas and look around. It is the only definitive way to conclusively diagnose endo.. and if you have it, have it removed.

There are other options to surgery, you can go into what they call "pseudomenopause" where you get injections to basically turn off your ovaries to let the endo die.

Do your research! Don't just listen to one GYN, go get a second opinion!
Married DH 11.7.09
DS born 3.12.10 (31w5d gestation)
TTC #2 since Nov 2011
User avatar
Benjismommy
Friend
 
Posts: 15
Joined: Tue Sep 24, 2013 12:06 pm

Re: New to all of this

Postby Lifesabeach624 » Fri Sep 27, 2013 8:08 am

Hi All,

I am new to this site as well. I was diagnosed with severe endo in Oct 2010. I went into laproscopic surgery to remove a cyst and then was given a c-section due to the endo that was completely covering my organs. I wanted to agree, endo can not be seen on a sono. After being "cleaned out of endo" I was then put thru menopause with the depo shots for 6 months and the recommended to go on BC pills. My husband and I have been trying to concieve for over a year and we finally agreed on IVF next month, Oct. Our RE suggested IUI would not be favorable for someone with endo. It's so hard to describe the pain with endo and if you do have it I suggest you take the necessary steps if you want to concieve in the future. I was told we should of started to try for our first child after surgery but we didn't find that out until later. Now if I can just bear thru the next month. Any words of advice for starting my first IVF cycle?

Thanks for listening,
Toni Ann
Toni Ann (ME) 29 Dom(DH) 31
TTC baby # 1- Sept 2012
Oct 2010-Cyst removed/Endo cleaned. Dx:severe endo
Oct 2010- April 2011 Lupron Injections
March 2013 HSG tubes clear
Aug 2013-dx:inactive thyroid

IVF#1 Oct 2013:
10 eggs retrieved, 9 mature, 5 fertilized (2 w/ ICIS, 3 on own)
5dt (2 embryos) (0 made it to freeze)
Beta BFN

IVF#2 Jan 2014:
15 eggs retrieved, 15 mature, 13 fertilized (on own)
3dt(2 trans) (10 frozen)
BETA! BFP -HCG 10.3/Progesterone 8.2
BETA BFN Chemical Pregnancy

FET#1 May 2014
ET 2 embryos (7 frozen)
BETA 5/23 BFP- 143.6!! 5/27-588!!
6/23 no HB Baby made it's way to Heaven
D&C at 8 weeks

On break for a bit...
User avatar
Lifesabeach624
TTC Queen
TTC Queen
 
Posts: 323
Joined: Fri Sep 27, 2013 7:41 am

Re: New to all of this

Postby Menehune » Sat Sep 28, 2013 9:02 am

Toni Ann,

My best advice is...

- infertility is no one's fault, just tragic luck. Try not to beat yourself up.
- take everything in baby steps and celebrate each step, from your first appointment, to your first medication, test, etc. it's a tough process, so you have to celebrate each baby step.
- be kind to yourself and try to relax and take any "me" time you need. You have to be selfish.
- embrace the support of loved ones, but be wary that not many people understand infertility treatments and the stress that comes along with it unless they know someone who's been through it or been through it themselves. That's just how it is. They're prob not being insensitive, just ignorant.
- research your insurance coverage so there are no financial surprises
- don't hesitate to ask questions of our docs or nurses. You will be putting your body through a lot and you should understand the process and consequences
- don't be afraid to seek counseling w your significant other. Your relationship may get strained from the stress of it all, and your emotional health is super important too!
- the ivf forum gals are a great resource and support network! I'd encourage you to buddy up, it's nice to have gals to chat with that are going through exactly what you are going through.

That's all I've got for now! Good luck to you!!! Hang in there!
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
User avatar
Menehune
TTC Princess
TTC Princess
 
Posts: 274
Joined: Fri Feb 01, 2013 7:40 pm
Location: Honolulu, Hawaii

Re: New to all of this

Postby Lifesabeach624 » Sat Sep 28, 2013 4:01 pm

Thank you so so much Menehune! It does all make sense, now to only keep calm and follow it! :) I am excited and especially when I complete a step like you said!
Toni Ann (ME) 29 Dom(DH) 31
TTC baby # 1- Sept 2012
Oct 2010-Cyst removed/Endo cleaned. Dx:severe endo
Oct 2010- April 2011 Lupron Injections
March 2013 HSG tubes clear
Aug 2013-dx:inactive thyroid

IVF#1 Oct 2013:
10 eggs retrieved, 9 mature, 5 fertilized (2 w/ ICIS, 3 on own)
5dt (2 embryos) (0 made it to freeze)
Beta BFN

IVF#2 Jan 2014:
15 eggs retrieved, 15 mature, 13 fertilized (on own)
3dt(2 trans) (10 frozen)
BETA! BFP -HCG 10.3/Progesterone 8.2
BETA BFN Chemical Pregnancy

FET#1 May 2014
ET 2 embryos (7 frozen)
BETA 5/23 BFP- 143.6!! 5/27-588!!
6/23 no HB Baby made it's way to Heaven
D&C at 8 weeks

On break for a bit...
User avatar
Lifesabeach624
TTC Queen
TTC Queen
 
Posts: 323
Joined: Fri Sep 27, 2013 7:41 am


Return to Endometriosis