AW - Endometriosis Question — The Bump
TTC After a Loss

AW - Endometriosis Question

Hi everyone,

I just had a lap and selective HSG on Monday. My tubes were clear, which was great news, but the doctors found extensive endometriosis on my right tube and removed some other spots of endo on my uterus, bladder and right ovary. The endo on my right tube is actually restricting my tube's ability to move, and it is stuck in an awkward position (also b/c of a pocket in the protective layer of tissue). Because of the extensive nature of the disease in that area, the endo could not be removed via laser treatment. Instead, I would need another surgery with a robotic tool to remove the endo and free up the tube. My doctor is concerned about the endo possibly blocking my tube from the outside and/or contributing to a higher risk of miscarriage (perhaps even as high as 50 percent?). At this point, we have the option of trying for a few months before having the surgery or abstaining until the surgery. I think we will TTC for a few months and if nothing happens, we will pursue a second surgery. But I was hoping someone here may have some insight or experience with endometriosis and its possible connection to miscarriages. Any advice or experience would be helpful. Thank you!
___________________________________________________________________________
Liz (27) married to DH since 2007

January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
Natural BFP after Metformin
DD Cora born Oct. 2010
TTC #2 since Oct. 2011
Fall 2013 - Three rounds of Clomid, all BFN
March 2014 - HSG shows right tube blocked
Miscarriages April 2014 and July 2014, missing our little ones
Lap/Selective HSG - June 9 
Both tubes opened, Dx with endometriosis

Re: AW - Endometriosis Question

  • @snegde - My tubes are both open right now, no blockage at all. My doctor was able to slide catheters through both tubes to improve the flow, so I am not worried about blockage at this point. The concern I am having is about possible miscarriage as related to the endometriosis. 

    (Warning: Living Child Mentioned)

    I am seeing a Naprotechnology doctor at the moment rather than a traditional RE. I have met with an RE prior to becoming pregnant with my daughter. At that point, we were told IVF was our only option. We got pregnant in February while waiting to start an IVF cycle in May. Our only other pregnancy was our loss in March/April of this year.
    ___________________________________________________________________________
    Liz (27) married to DH since 2007

    January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
    Natural BFP after Metformin
    DD Cora born Oct. 2010
    TTC #2 since Oct. 2011
    Fall 2013 - Three rounds of Clomid, all BFN
    March 2014 - HSG shows right tube blocked
    Miscarriages April 2014 and July 2014, missing our little ones
    Lap/Selective HSG - June 9 
    Both tubes opened, Dx with endometriosis
  • O2girlO2girl member
    I don't have endo I have adeno and while both conditions are different they both happen to be endometrial tissue that is growing somewhere that it shouldn't be.....that being said my RE has me doing GnRH agonist treatment to suppress my adeno. Have you tried this type of therapy to suppress your endo?
    Me: 38
    DX:  Adenomyosis, Compounded MTHFR, PAI-1 4G variant

    DH: 34
    MFI due to Testicular Cancer

    Married March 2012 <3
    IVF w/ICSI #1
    10 little polar bears
    FET #1 with 2 polar bears ~Nov 6, 2013 BFN :(
    FET # 2 with 2 more polar bears ~March 19, 2014 BFP!!!
    Beta 1= 276
    Beta 2= 662
    4/19/14 ~ baby A became an angel
    5/02/14 ~ baby B became an angel
    5/3/14 ~ D&C
    FET #3 with 1 male polar bear ~October 3, 2014
    October 13, 2014 ~ BFN
    Fur Children:  Memphis 3y, Dutch 3y, Marcel 2y, Meadow 1y



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  • @O2girl - We weren't sure what we were dealing with until the lap. I had no symptoms of endo aside from a suspicion of some sort of scar tissue based on my last HSG. So I basically just found out I had endo on Monday after surgery, so I am still processing all of this information. I will ask my doctor about the options though, thank you for your advice.
    ___________________________________________________________________________
    Liz (27) married to DH since 2007

    January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
    Natural BFP after Metformin
    DD Cora born Oct. 2010
    TTC #2 since Oct. 2011
    Fall 2013 - Three rounds of Clomid, all BFN
    March 2014 - HSG shows right tube blocked
    Miscarriages April 2014 and July 2014, missing our little ones
    Lap/Selective HSG - June 9 
    Both tubes opened, Dx with endometriosis
  • O2girlO2girl member
    edited June 2014
    @Lizzyrella‌
    My diagnosis is pretty new also. I also didn't/don't have any symptoms --ZERO..... But alas it has presented issues :(

    I was on depot Lupron for my last embryo transfer. I will be on it again before my next transfer. It works by suppressing estrogen which in effect suppresses the adeno (or in your case the endo)..... This allows the endometrial tissue to quite down. There is a ton of info on the internet about Lupron to treat endo if you are up to reading about it. Also maybe mention it to your doc....maybe it could be a good adjunctive therapy to try to relax the adhesions you have before you have another lap to resect the adhesions? I did read quite a bit that Lupron is often used before removal to make removing the adhesions less traumatic on the other organs. Best wishes for success! :D
    Me: 38
    DX:  Adenomyosis, Compounded MTHFR, PAI-1 4G variant

    DH: 34
    MFI due to Testicular Cancer

    Married March 2012 <3
    IVF w/ICSI #1
    10 little polar bears
    FET #1 with 2 polar bears ~Nov 6, 2013 BFN :(
    FET # 2 with 2 more polar bears ~March 19, 2014 BFP!!!
    Beta 1= 276
    Beta 2= 662
    4/19/14 ~ baby A became an angel
    5/02/14 ~ baby B became an angel
    5/3/14 ~ D&C
    FET #3 with 1 male polar bear ~October 3, 2014
    October 13, 2014 ~ BFN
    Fur Children:  Memphis 3y, Dutch 3y, Marcel 2y, Meadow 1y



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    January 2015 Siggy Challenge TTCAL
    Animals Interacting with Snow

    image


  • I don't have any experience with this, but my SIL has had a few surgeries to try to clear her endo. She was unable to get pregnant on her own, and they are currently going through IVF. Thinking of you and sending good vibes your way as I know that this can be stressful. 
  • Do you have a lot of "active" endo? I am fairly certain that if they do the surgery to try get the endo off that tube, you will end up with scar tissue and adhesions. I say this from some personal experience. My biggest concern from that second surgery will be possibility for scar tissue, etc. I have stage 2 endo but not a lot of "active" cells at the moment. Was your endo just mainly located on your tube or did you have it anywhere else?  
    Multiple TTCAL 1IF 3
    imageimage
    DX: stage 2 Endo 2012, PCOS 7/2/14,  HSG 6/11/14, Lefty open!!
    BFP#1, EDD: 4/27/14, Missed EP confirmed: 9/23/13, R tube removal: 9/25/13 
    Clomid/TI #1=BFN, 
    Clomid/TI#2=BFN, Clomid/TI #3=CP
    BFP #2 CP, EDD 7/12/15
    On a treatment break: 2 natural cycles. Saving money, sigh*

    Goodbye my sweet babies. We miss you so much. 
    All Welcome


  • Thanks for all of your thoughts and advice. I appreciate it!

    @megrae12 - I will ask if it is active when I see my doctor. I got the idea that she thought it could worsen over time, so that might mean it is active? They found spots of endo on my uterus, bladder and right ovary and removed all of that via a CO2 laser. The endo on my tube was too much to use the laser for, so it is still there. Scar tissue is a concern of mine as well. I felt comfortable with the laser, but I need to do more research about this robot they use. They did not tell me the stage, so I need to talk to my doctor!
    ___________________________________________________________________________
    Liz (27) married to DH since 2007

    January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
    Natural BFP after Metformin
    DD Cora born Oct. 2010
    TTC #2 since Oct. 2011
    Fall 2013 - Three rounds of Clomid, all BFN
    March 2014 - HSG shows right tube blocked
    Miscarriages April 2014 and July 2014, missing our little ones
    Lap/Selective HSG - June 9 
    Both tubes opened, Dx with endometriosis
  • erinelerinel member
    I don't have any real advice for endo and miscarriage, but I have stage IV endo, and was able to get pregnant with minimal intervention (just Clomid and progesterone for my short luteal phase) and carried to 35.5 weeks with a healthy, easy pregnancy, so it is possible.

    Me 32 (Stage IV Endometriosis, short luteal phase) DH 38

    Married 5/2010

    January 2014- DS born healthy at 35.4 weeks

    February 2014- DS passed away due to complications from adenovirus

    February 2015- Rainbow baby DD born at 36.3 weeks

    My chart: http://www.fertilityfriend.com/home/42fd32 

     


  • Thank you for sharing your story, @erinel

    I am sorry to see so many of us facing this!
    ___________________________________________________________________________
    Liz (27) married to DH since 2007

    January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
    Natural BFP after Metformin
    DD Cora born Oct. 2010
    TTC #2 since Oct. 2011
    Fall 2013 - Three rounds of Clomid, all BFN
    March 2014 - HSG shows right tube blocked
    Miscarriages April 2014 and July 2014, missing our little ones
    Lap/Selective HSG - June 9 
    Both tubes opened, Dx with endometriosis
  • I've had severe endo since 16. At 24 I had my 1st lap surgery. I married my HB when I was 29 and we tried for 2 years with no success. Last June I had my 2nd lap and they told me to try on our own to see what happens. I got pregnant in September but mc @ 2 months. Got pregnant again in Jan of this year, again mc @ 2 months. My tubes are clear and they told me endo won't cause miscarriages but It makes me wonder if it's played a role in my losses.
  • @Campow83 - I am sorry for your losses, thank you for sharing your story. 
    ___________________________________________________________________________
    Liz (27) married to DH since 2007

    January 2010 - diagnosed PCOS with IR, MTHFR, Protein S Deficiency and possible tubal issue
    Natural BFP after Metformin
    DD Cora born Oct. 2010
    TTC #2 since Oct. 2011
    Fall 2013 - Three rounds of Clomid, all BFN
    March 2014 - HSG shows right tube blocked
    Miscarriages April 2014 and July 2014, missing our little ones
    Lap/Selective HSG - June 9 
    Both tubes opened, Dx with endometriosis
  • Lizzyrella - my very dear friend had endo that had to be removed via excision that the laproscopy couldn't get.  Her doc couldn't remove all of hers during the initial surgery either.  I would recommend trying to bump up the surgery if possible b/c I know with my endometriosis that wasn't even quite that bad I tried for 3.5 years and never got a BFP until after the removal.  Best of luck to you.

    Me 35 / DH 36
    TTC since 09/2009
    Hashimoto's diagnosis 11/2011 / Endometriosis removal surgery 04/2013
    Other diagnosis: 1 mutation - PAI-1 gene
    BFP#1 9/27/2013  /  EDD 6/4/14  /  MC 10/17/2013
    BFP#2 3/4/14  /  EDD 11/13/14  /  CP
    BFP#3 6/7/14  / EDD 2/16/15  /  CP
    BFP #4 11/7/2014 / EDD 7/17/15  /  CP
    Current  Plan: Waiting to change RE... Appt on 1/16
    RXs: Metformin, Levothyroxin, Baby Aspirin, CoQ10, Vitamin D, Folic Acid, Pre-natal. Progesterone post O.

    imageimage
    ***Jeremiah 29:11 For I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.

    All Welcome


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