My kind of IF...maybe long? Maybe TMI? — The Bump
Infertility

My kind of IF...maybe long? Maybe TMI?

I have read your posts, ladies. It seems my kind of IF is different than most of yours. I will never have a BFP. So can I take a minute to explain my IF?

When I was sixteen, I went to the doctor because I had not had a period yet. That's right, sixteen and no period.

After many blood tests, examinations, MRIs and a sonogram, we found out I had no cervix, uterus or ovaries. My vaginal length was the same as a 2 year old females.

I had a blood test to find out if I was genetically male or female. I was SO embarrassed! BTW, I'm female :) I have the blood tests to prove it.

I had surgery to remove tissue that was probably the start of ovaries forming. They had stopped and then dropped. Had they been left, they would have turned cancerous later. 

I also had to use dilators to increase vaginal length. If I hadn't, then I would have not had much of a sex life :)  I was actually told that I would never orgasm!

I have been through hell and back with this. After a couple of years, I was even given a name for my diagnosis: Mayer Rokitansky Kuster Hauser Syndrome, or MRKH. 

I know that I'll have to adopt. Science hasn't come far enough for me to have surgery with an artificial reproductive system. 

And my vaginal length, I'm happy to say, is smaller than most, but more normal :) They thought I'd have to have a skin graft from my knee to almost my hip in order to create vaginal length.

I also have to take hormone pills to regulate my hormones, which caused me to go from 100% flat chested to a large B-small C cup in a very small amount of time. I also have breast pain constantly, even though we've changed the meds and dosages many times.  It is so bad at times I can't even stand being hugged. 

And that's my story :) I was once so sad and depressed I wanted to kill myself but after a lot of soul searching and praying, I'm here today and stronger than ever!

I just wanted to share my story with you ladies. Like I said, I'll never be pregnant. I know this :) And it sucks!

But, ya know, I don't get a period....so NA NA NA NA NA NA!

Seriously, tho? I'd like to experience that :) Just once...

My story is actually a lot more complicated, but that's the short version. Please, if you have any questions, PM me.

Re: My kind of IF...maybe long? Maybe TMI?

  • Gosh.  All this time we've been chatting and I did not know this.  Wow.  You must be one hell of a woman! 

    Thank you so much for sharing with us.  Smile

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  • Thank you for sharing your story. It was very honest and touching to read.  Good luck with your journey!
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  • imageccbanana:

    Gosh.  All this time we've been chatting and I did not know this.  Wow.  You must be one hell of a woman! 

    Thank you so much for sharing with us.  Smile

    Aw, thank you! The funny thing is that most people don't even realize what I've been through because MRKH does not define me, KWIM? 

    But I feel safe with you women, so I wanted to share. 

  • Girl- you sound like you've been through a lot and are a strong woman.  I am glad you are in a better place now and no longer depressed. 

    I'm glad you're on this board- love your posts and support- 

    Have you started your adoption journey yet?  I hope you will still stay on this board regardless- even when you are pursuing adoption.  Good luck with your adoption!

    I hope they can figure something out though so your boobs don't hurt anymore :-(   ouch.

     

    Surprise BFP after 5 yrs of TTC
  • imagealbjag:

    Girl- you sound like you've been through a lot and are a strong woman.  I am glad you are in a better place now and no longer depressed. 

    I'm glad you're on this board- love your posts and support- 

    Have you started your adoption journey yet?  I hope you will still stay on this board regardless- even when you are pursuing adoption.  Good luck with your adoption!

    I hope they can figure something out though so your boobs don't hurt anymore :-(   ouch.

     

    I fully plan to stay on this board! I love this board. I haven't really started my adoption journey yet. My plan is to start in about four years. I'm only 22, so no rush! 

    As far as the boobs hurting, well, I've learned to deal with it and 99% of the time, it's not too horrible. I do tend to get cramps so bad that I cannot move, but doctors have yet to figure THAT one out.

  • Thank you so much for sharing your story.  That had to take a lot of courage to do.  I wish you nothing but the best and I'm thankful for your candid spirit and willingness to give us all support and advice.  I hope you stick around...we can always use another strong woman!
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  • Thank you for sharing your story. You are no doubt a very strong woman.

     

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  • Thank you for sharing. You have been through a lot and must be a very strong woman - I'm glad you feel comfortable enough with us to tell your story!
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  • imagejkmcnamara:
    imagealbjag:

    Girl- you sound like you've been through a lot and are a strong woman.  I am glad you are in a better place now and no longer depressed. 

    I'm glad you're on this board- love your posts and support- 

    Have you started your adoption journey yet?  I hope you will still stay on this board regardless- even when you are pursuing adoption.  Good luck with your adoption!

    I hope they can figure something out though so your boobs don't hurt anymore :-(   ouch.

     

    I fully plan to stay on this board! I love this board. I haven't really started my adoption journey yet. My plan is to start in about four years. I'm only 22, so no rush! 

    As far as the boobs hurting, well, I've learned to deal with it and 99% of the time, it's not too horrible. I do tend to get cramps so bad that I cannot move, but doctors have yet to figure THAT one out.

     Sending you non boob crushing ((hugs)) ;-)

    Surprise BFP after 5 yrs of TTC
  • imagejkmcnamara:
    imageccbanana:

    Gosh.  All this time we've been chatting and I did not know this.  Wow.  You must be one hell of a woman! 

    Thank you so much for sharing with us.  Smile

    Aw, thank you! The funny thing is that most people don't even realize what I've been through because MRKH does not define me, KWIM? 

    But I feel safe with you women, so I wanted to share. 

    I definitely KWYM.  And I feel the need to say that I tried for like 2 minutes to pronounce your diagnosis.  :)

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  • Thank you for sharing your journey!  You are amazingly strong!

    Wishing you nothing but luck :) 

    SAIFW
    TTC since 2008 dx PCOS & MFI
    Clomid/Femara no "O"
    IVF #1 BFN
    FET #1 cancelled for biopsy
    FET #1.2 c/p, July 2012 c/p
    IUI #1 & 1.2 canceled
    IVF #2 ER 12/1, Freeze all due to OHSS
    FET #2.1 cancelled due to DVT risk, FET #2.2 Jan 2013
    my blog
    image
  • Thank you for sharing.  You are a very strong woman!
  • You are amazing.  I remember reading your story before and shared it with my DH.  I love that it doesn't define you.
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  • Thanks for sharing. It sounds like you have been through so much and have come out of it as a strong, amazing woman. I bet you will make an especially wonderful, compassionate, strong mom to your future kids when they are going through the insecurity and discomfort of the teenage years (and before and after). They will be lucky to have you. I hope you get to meet one of them in 2010, through whatever avenue you pursue. (ETA--Or in 2014 when you are ready. Wink)
  • Wow. You certainly have been through a lot. Thank you so much for sharing your story. It just proves even more that we all have our individual journeys. I wish you all the luck in the world with adoption (and I'm jealous of no period! LOL!).

    You are an amazingly strong woman, hun. ::hugs::

  • What an amazing story!  You inspire me, truly. 
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  • I really respect and admire the fact that not only you appear to have dealt with the hand that you were given with a lot of grace and dignity, but that you also took a big chunk of something very personal and put it on public view in the hopes of educating all of us to your situation.

    Thank you for trusting us and sharing your story. 

    Our miracle of modern medicine arrived 10-30-10! Baby Birthday Ticker Ticker
  • Thank you for sharing your story!!!  You are one heck of a woman an I wish you the best of luck!!!!  We're thinking about adopting too!
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  • Thank you so much for sharing such a personal story.  You are an awesome beautiful woman and I pray for only the best for you. 
    My Wonderful Sister is my GC!!!! 3 IUIs, 2 unmedicated, 1 50mg of Clomid = All BFNs Next step IVF!!!! Melinda & Michael 5*6*06 God Bless The Broken Road
  • Wow, ladies, all of your awesome responses seriously made me cry!

    It's always funny to hear people say I'm strong and an inspiration because this is my life and I just take one day at a time! 

    And for the one who said they can't pronounce it, here ya go!

    My-er Rock-it-tan-skie Kuster Howser :) 

    But MRKH works too, LOL. 

    And I'm hell bent on people learning about MRKH because most people aren't aware of it! I took a friend's nursing book and guess what? No mention of it! 

    When I go for doctor appointments, I always have to inform the nurses and doctor of MRKH.

    The nurses are cute:

    Nurse: So when was your last period?

    Me: I don't get periods.

    Nurse: So, last month?

    Me: No, I don't get periods. At all.

    Nurse: I thought you weren't pregnant?

    Me: I'm not. I have MRKH. I don't get periods.

    Nurse: So you haven't had one this month yet?

    Me: No, I don't get periods AT ALL.

    Nurse: ....

    It's kind of funny by now. 

    Again, thanks for the fully awesome responses! I was so nervous to post this, but I'm glad I did now!

  • Thank you for sharing your story. You are so strong that you give me strength to go on.
    TTC since 8/07 DX - Severe MFI/azoospermia & MTHFR/ TESEs found sperm - 7/08 & 6/09/ 12/08 - IVF#1 - BFN/ 6/09 - IVF #2 - cancelled due to OHSS risk (had retrieval)/ 7/09 - FET #1 - BFN/ 9/09 - FET #2 - BFN/ 11/09 - IVF #3 with new RE cancelled twice - 10/09 & 11/09/ 1/10 - IVF #3 take 3 - BFN/ 4/10 - IVF #4 - first ever BFP on 5/13/10!!! 108 @ 10dp3dt/ 2nd beta 311!/ sono on 5/28/10 said TWINS!!!! Lilypie Second Birthday tickers
  • You sweet, brave woman. Thank you for sharing your story.
    Struggled with IF from 2008-2011.
    Surprise Pregnancy 02/11!
  • Thank you for sharing this with us.  I'm glad this is a place where you can be yourself and get support.  I have a very good friend with MRKH.  I think it's wonderful that you are getting information out there about this diagnosis.

    I'm glad you're here, and I truly wish you the best with your adoption journey! 

    TTC with DOR, low morphology, fertilization issues
    IVF#1 Oct 2009 (CCRM) - BFN
    IVF#2 March 2010 - Poor response/cancelled
    DE IVF#1 Aug 2010 - BFN
    DE IVF#2 Dec 2010 - Transferred 1, 2 frozen - BFP!
    TTC#2 FET Jan 2013 - Transferred 1 - BFP!

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  • You are an amazingly strong woman! Thanks you for sharing your story!
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  • Thank you for sharing, good luck on your journey to motherhood.
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  • ::wraps arms around you and gives a tight squeeze::

    You're a beautiful, fun, loving woman and getting to know you over these past several months has really touched my heart. You have your good days and your bad days, but in the end you pull yourself up by the boot straps and keep on, keepin' on. I've learned a lot from you and this board, but most of all I've learned how strong, brave and courageous all of us are.

    Thank you for sharing and thank you for being so wonderful.

     

  • imageTarahville:

    ::wraps arms around you and gives a tight squeeze::

    You're a beautiful, fun, loving woman and getting to know you over these past several months has really touched my heart. You have your good days and your bad days, but in the end you pull yourself up by the boot straps and keep on, keepin' on. I've learned a lot from you and this board, but most of all I've learned how strong, brave and courageous all of us are.

    Thank you for sharing and thank you for being so wonderful.

     

    Thank you so much, Tarah!

    You know, I made the decision long ago that I can pity myself and be all "woe is me!" or I can say "you know, this sucks, but let's keep going"....but no matter what, there is NOTHING that can change this situation! I will be dealing with this for the rest of my life. So, why would I go through life angry and sad? 

    Besides, I have SO many blessings in life!

  • Wow!  That is crazy.  Thanks for sharing with us.  Do they know what causes something like that or is it just one of those out-of-left-field sort of things?

    And do you have any idea how much money you've saved not having to buy pads and tampons?  Man those things are pricey!  :)

  • Thanks so much for sharing.   I wish you all the best when you decide to adopt.  You sound like a courageous lady.
    image 30 y/o with PCOS HSG normal, SA essentially normal (slightly low morph but good # and motility) 50 mg Clomid...zip; 100 mg Clomid...nada; 150 mg Clomid...zilch 1/10 Injectable cycle with Gonal-F, Ovidrel, and TI.....Beta 2/22...BFN 2/10 Injectable cycle with Gonal-F and Follistim (long story), Ovidrel..BFN 4/10 Injectable cycle (see above). BFP but early m/c 5w5d. 5/10 Break cycle due to BFC (Big Fat Cyst)...darn it all 6/10 Injectable cycle +IUI...BFN 7/10 Injectable cycle + IUI.....BFP!!! Baby Birthday Ticker Ticker
  • You are an amazing, strong woman.

    (((hugs))) 

    image
    Unexplained Infertility

    After two Clomid cycles, three injectable IUI cycles, two IVFs, two miscarriages, and one lap surgery, IVF #2 has brought us our little boy!

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    TTC #2
    After months of being postponed or cancelled, FET #1.3 (Natural FET) brought us twin girls!

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    Surprise! Baby #4 is due in March!
  • Wow.  Thank you for sharing.  I wish you all the luck with your adoption journey, and appreciate all the support you bring to this board. 
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  • Wow. Thank you for sharing your story, hopefully it will give hope to someone out there that might be reading it. I can't imagine all that you have gone through and I hope that the worst will remain in your past. I wish you nothing but the best on your journey. GL where ever that road takes you!
    DX PCOS w/IR 01/08.
    Currently pg with our 1st after 6.5 yrs of IF (thank you IVF)
     
    My IF/Everything Blog
    There's No Crying in Baseball
    ***My posts are always SAIFW**
  • imageccbanana:

    Gosh.  All this time we've been chatting and I did not know this.  Wow.  You must be one hell of a woman! 

    Thank you so much for sharing with us.  Smile

    This.  Wow, you are so strong!

    imageBaby Birthday Ticker Ticker
  • Thank you so much for sharing your story. I wish you nothing but happiness and contentment when you decide you're ready to pursue adoption and meet your child!
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  • imagejebuell:

    Wow!  That is crazy.  Thanks for sharing with us.  Do they know what causes something like that or is it just one of those out-of-left-field sort of things?

    And do you have any idea how much money you've saved not having to buy pads and tampons?  Man those things are pricey!  :)

    Jebuell, they really don't know much about it. It's thought that perhaps the male carries the gene, but there just isn't enough research because it was just lumped into a general IF category for SO long. I know women in their sixties who are so glad to have a name for their diagnosis after so many years. It is also thought that perhaps Queen Elizabeth I had MRKH :)

    Also, YES! I know how much money I am saving. And my DH loves that he doesn't have to run out to the store for me to buy them. 

  • wow - thank you for being brave and sharing your story with us. you're an amazing woman!!
  • Wow. Thanks for trusting us enough to share your story.
  • Thank you so much for  sharing!  I totally look up to you for letting us all into your world.  Thank you!  I wish you so much in your continued journey.

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