Friday, January 4, 2013

Getting Pregnant with POF

At 16 weeks pregnant, I am feeling more and more confident that this is actually going to happen. And because there are so few of us women out there with Premature Ovarian Failure who actually get pregnant naturally, I decided to share exactly how I got here. That’s basically all I wanted when I was diagnosed with POF – to hear from someone else with POF who got pregnant and dammit, how did she do it!?!?

*Please note: I am not a doctor and have absolutely no medical training whatsoever. What I DO have is my own personal experience and opinions. So I'll share that. 

So a little background, because I think it does matter where you start.  I was on birth control pills for about 10 years – from age 17 to 27. There was zero point zero zero reason for me to believe that I would have a problem getting pregnant. My periods were like clockwork until I got off the pill. My husband and I decided to start trying to conceive in May 2011 and I didn't get a period for 3 months. What I did get was an exorbitant amount of hot flashes and night sweats. Kinda concerning. Long story short, I was diagnosed with Premature Ovarian Failure about six months later. Cue devastation and the worst few months of my life. 

Here were my numbers upon diagnosis:
FSH: 88
AMH: .16
Estradiol: 19

When I went in to meet my fertility specialist for the first time - and this is key - I had a follicle. That was not THE follicle, but the fact that the doc could see ONE meant that I wasn't totally out of the game. I ovulated that month (for the first time in six months). I'm guessing my eggs were pretty much shit at that point - I always picture a tumbleweed "egg" drifting across the desert of my ovaries. 

So, in a bout of desperation, I did what many other infertile women do - I went completely overboard and bought every infertility-related book and tried every recommended herb / supplement / vitamin / diet. By virtue of what, in my humble opinion, made a difference and what made zero difference, here's what I did: 

Things I did that probably did NOT affect me getting pregnant: 
  • Gluten-Free Diet: This was terrible. I tried it from January 2012 - April 2012 and was so miserable I think this actually made things worse, from the stress of never being able to eat what I wanted. On the plus side, I lost about 10 pounds and looked awesome. 
  • Acupuncture: I loved acupuncture but only did it 5 times, from November 2011 - January 2012, due to an insurance issue. Because I stopped going 9 months before getting knocked up, I'm pretty sure this wasn't the ticket. 
  • Wheatgrass: Ugh. Think of the worst taste you've ever had in you mouth and multiply it by 100. That is wheatgrass. For the first couple of months, I used the powder stuff, which I would mix into a cup of juice and chug. Worst part of my day, every day. Then I discovered a local natural foods store that sold tablets, so I hopped on that train immediately. I took five wheatgrass pills every morning for about 4 months - so with the powder and tablets, I was on wheatgrass for about seven months from December 2011 through June/July 2012. Finally I gave up because it was too gross. Wheatgrass is known to help lower FSH - and it did, for me, or at least I think it might have. It did help control my hot flashes before getting on hormones in the spring, but alas, I don't think it did anything for my body's actual functioning properly. 
  • Chinese Herbs: As recommended by Randine Lewis' book The Infertility Cure, I ordered the "four substance concoction" (for fifty bones!) and took it every morning and night. After 6 weeks or so, I started having diarrhea, like... all the time. A brief scientific experiment leads me to believe that these herbs were the culprit. I stopped taking it in February 2012. 
  • Charting: This didn't help one lick. The month I got pregnant, my chart looked like this. And I DIDN'T OVULATE on Day 13 like you might guess. I think. Because I have consistently measured a week ahead of a Day 13 ovulation. And there's no way we would have seen the heartbeat when the baby was 4 weeks 5 days, which I would have been if I had actually ovulated on Day 13. So I was especially shocked when I got pregnant because I didn't think I ovulated that cycle because my chart was cray-cray. 
  • Menopur/Letrozole/Ovadrill: Nope. I was a non-responder. Didn't help. 
What I did that MIGHT have affected me getting pregnant: 
  • Other supplements: I was pretty religious about taking the following supplements / herbs: 
    • Kelp ("maybe this whole thing is related to my thyroid?")
    • Pre-natal vitamin
    • Fish Oil
    • Evening Primrose Oil (prior to ovulation each cycle, twice per day)
    • Calcium Vitamin (for my bones more than my fertility)
  • DHEA: I have no evidence of this, but out of all the supplements, I would recommend DHEA the highest for POF ladies. There IS actual evidence out there in the scientific community that DHEA improves egg quality and chances of getting pregnant. I took 25 mg, twice per day. And who knows, maybe this was the thing that did the trick. 
What I did that PROBABLY affected me getting pregnant: 
  • Hormone Replacement Therapy (HRT): Ladies, I was extremely anti-hormones when my doctor first recommended HRT.  While the doc assured me I could still get pregnant while on it, I had my doubts about this little estrogen and progesterone routine that seemed so similar to birth control! I put it off for four months, trying to control my FSH and estrogen levels naturally. But my numbers continued to suck and I continued to have hot flashes and night sweats and brain fog. So finally I gave in, in March 2012. Best. Decision. Ever. Hot flashes were completely gone within a week. Brain fog cleared. I felt a million times better. And I KNOW this helped regulate my ovaries so they knew what the hell to do. In fact, I tended to ovulate every other month - immediately following the progesterone-induced period. I can't say it'll work for everyone, but HRT worked for me. It absolutely worked. And I shouldn't have fought it so hard, because I feel 99.9% sure I wouldn't be pregnant right now had I never gotten on those little pills!  *UPDATE: For those curious, I was on 1 mg of estrogen every day and 10 mg of progesterone on the first 12 days of every other month. I took regular, cheap pills. I think they were like $6 for the estrogen and $9 for the progesterone (after insurance).*
  • Therapy: The other thing I feel pretty confident helped me get pregnant is therapy. This is another thing I fought for a long time before finally "giving in" and going. I was depressed. I was in a serious funk. I felt out of control and miserable and just wanted my life back. After making a drunken ass of myself at 4th of July, I decided it was too much to handle on my own and found a therapist. I was amazed at how quickly I started to turn around. Especially because I am a very educated person who has taken many classes in counseling and communication and even teach about fallacies of thinking in the Interpersonal Communication class at my college. But who knew, there actually is something to that whole therapy thing and it started working. I let go of the idea of getting pregnant naturally and starting to think that maybe I could find some meaning in my life aside from trying to conceive. In fact, we decided to give ourselves another two years (three years post-diagnosis) to grieve our natural child before moving on to the donor egg route. Because I was NOT ready to go that route yet and didn't want to feel pressured to do it right away. And in the meantime? Let's live it up! And live it up I did! I went to California, tried marijuana for the first time, went to Mexico with my girlfriends, and went skydiving with my husband. I started thinking like "let's get all this stuff done before we have kids (via a donor)" instead of "I can't have kids right now and I'm miserable about it."  I stopped beating myself up about it constantly, and I truly think this made a difference in getting pregnant. Easier said than done, right? 
  • Pure Dumb Luck: Looking back at my chart, it still doesn't quite make sense how this happened. And I don't know if it was a new speedy egg that came after a (real? progesterone-induced?) period in September or if it was the egg that started in August and took it's sweet time getting plump and juicy and ready to go, hanging out in the ovaries through the failed IUI in September until it was ready to go three weeks later.  I just don't know. I'll probably never know. We had sex at the right time (either "send off to Mexico" sex or "welcome home from Mexico!" sex) and it worked. 
Maybe some of this helped me get pregnant, maybe none of it did.  Maybe we just got really really really lucky. But somehow, it happened. And I hope my story helps some of you as well - the protocol I followed or the notion that it's not hopeless, even with Premature Ovarian Failure! I'm thinking about you all every day. 


28 comments:

  1. I couldn't agree more with going for therapy. I've gone for 2 stretches in my lifetime, and each time it helped more than I can express.

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  2. Although I wasn't diagnosed with POF (I'm just old and therefore have DOR and crappy eggs), I think that, like you, I was helped by DHEA. I'd been on it - and CoQ10 - for about a month before I got pregnant. I'm sure Femara helped, too, but drugs alone didn't get me pregnant before I started DHEA and CoQ10.

    I also agree that planning a life outside of infertility and trying to conceive makes a huge difference, whether it's done through therapy or not. Contradictory as it may seem, there's something very powerful about letting go.

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  3. Thank you for this post! And for the hope that maybe, just maybe, it can happen for me, too!

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  4. Thanks for this. I've been stalking your blog as a POF success story. Although I'm only DOR at this stage, it definitely helps A LOT to see that other people can get pregnant, so maybe I can too. I haven't gone the DHEA route yet (just CoQ10), but if my next IVF cycle fails I'm going to ask my RE for it and take a break to give it a try. Thanks for the advice on your journey! I keep wondering if I should try wheatgrass...I think this helped me decide not to bother!

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  5. Your success story is one of the best (in our community), IMO. Love hearing it and knowing that you're doing so well!
    I will add my two cents as a DOR (IVF non responder) mama-to-be:
    -first, I agree about the DHEA. Ladies, if you have egg issues, get on it. The side effects do suck, but I think this stuff works. I'd been on it 3 months when I got pregnant the month after our cancelled IVF.
    -and while I agree that charting is pretty useless, I would recommend at least paying attention to your CM, especially during the large window if time when you should be ovulating. I happened to notice some (relatively rare) primo EWCM around CD19 and so we had a couple of nights of fun, just in case. One of them led to our baby girl, who will be here next month!
    -lastly, therapy. Yes. Do it. It helps on a lot of levels.

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  6. Thanks for your post! I admire you mentioning that it was likely just luck! For those of us who have the official premature ovarian FAILURE diagnosis, we have around a 5% chance of getting pregnant naturally at some point in our life. Hopefully research will help doctors figure out who with POF gets pregnant, when, and WHY so that they can replicate it for others! Are you still planning to do the NIH study with the modified protocol? I am because I really hope that in the future, when a young women is diagnosed with POF, she can find more helpful information than we were able to. There is just not much out there!

    This was a good trip down memory lane because I too did all of this jazz - wheat grass (loved it!), accupuncture (love it!), chinease herbs (had the same bowl problem!) and on and on. Maybe some of it works, probably most of it dosent. I decided to stick with the things that actually made me FEEL better (whether it increased my fertility or not) and for me that was weekly therapy and weekly accupuncture!

    Thanks for sharing and I am happy to hear that your pregnancy is starting to feel real and exciting for you!!

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  7. For got to say how I love your description of your eggs: "I always picture a tumbleweed "egg" drifting across the desert of my ovaries." because I do the same thing!!! Except I imagine mine to be the shape and color of raisin - all black and shriveled - and dressed like old lunch ladies with hair nets and walkers - the whole nine yards! I am glad to hear that I am not the only POF weirdo who visualizes her eggs as old and lonely! lol

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    1. I have too POF and I always describe my eggs as shriveled up raisins. When people say (regarding getting pregnant on my own)..."you never know, anything is possible"...I give credit to God's ability to do any miracle and then remind them I have raisins for ovaries!

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  8. Thanks so much for this post! I was diagnosed with POF about 5 years ago and have not given up hope. I too did the accupuncture, chinese herbs, went gluten free, and even saw a chiropractor. I started HRT after being in denial about 3 years ago and finally got my life back. Therapy helped a lot too and I am in an awesome support group.

    I am going to get some DHEA NOW!!

    ((Hugs))

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  9. I love that you spelled this out for women in your situation. So very helpful!

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  10. Thanks for sharing this and being so honest about your journey. I really like your approach about living it up, I think we're all more than willing to make major sacrifices during this journey but we rarely say fuck it and become more carefree... you know what I mean? And that's probably just the thing that helped you let go, enjoy the rest of your life and get on with it in style ;-)

    SO happy for you. Looking forward to more updates about the baby.

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  11. I am one of you girls ... POF is not fun! Well I am on the right track I hope! Acupuncture ones a week, Grady wheat grass juice every day( I mix it with Kael, carrot , apple ) to hide the bad taste of it... Three month ago I started hrt( estrogen twice a day from day #1to day25and progesterone day16to day25) I haven't started DHEA, I am not sure should I take it together with HRT? Also did you get pregnant firing HRT or after you stopped HRT? I was thinking about DE, but after you wonderful story I am going to keep trying. I am thinking to stay on hrt till July 2014 and after we were planing to go to Cancun and try ivf ... But again my chance to respond to ivf less then 1% so I am not sure what to do at all. I am 32 years old and my fsh is going crazy from 9 to 51 my Amh is .14... Good luck to all who is trying and any so happy for all who is expecting ! Girl any suggestions are welcome ! Did you take hrt in the same ratio ! Or did you stope estrogen when you were taking progesterone ! Thank you ...

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    1. I took DHEA with the HRT - every day! I would say if you are comfortable with the Donor Egg option then consider going for it, as there's no way of knowing if it will happen naturally. I knew I wasn't comfortable with it without giving my body a real chance and without giving myself plenty of time to grieve my natural child. It turns out my instincts were right and it worked out!

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  12. I have just turned 23 years old, last month, three days before I was diagnosed with POF in fact. It's great to see a positive story like yours on here and i'm finding myself visiting it every so often when i'm feeling a little bit hopeless. while its not nice to take comfort in seeing all of the women on here who are going through the same thing, it is nice to know i'm not alone. I love your story of conceiving little Jodie (she's beautiful by the way, congratulations!) I'm still working through the shock of the diagnosis at this stage but hopefully one day i can share a similar story to yours!

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    1. I'm so sorry you're going through this diagnosis. It's not easy in any way, shape or form and no one should have to deal with this, especially at such a young age! I'm glad you can find some comfort in my story, knowing there IS hope out there. Best of luck to you.

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  13. I just wanted to jump in real quick and give any ladies that come across this hope. Diagnosed three days before my 28th birthday (FSH 27/AMH 0.1) Did acupuncture religiously once a week 4-5 months prior to BFP, DHEA 25 mg three times per day, tried Randine Lewis' fertility diet of no wheat, dairy, or sugar (only lasted 3 months on it), had failed IUI in April 2010 with injectables, got pregnant naturally in May. Just like this success story, I went in for an ultrasound at what would've been 4w6d because my HCG was high (1,565) to check for multiples ... ended up measuring 5w5d. I'm 200% convinced I ovulated on cycle day 8. I consistently measured 6 days ahead my entire pregnancy. My daughter was born in January 2011. She's a spunky, beautiful kid.

    Don't lose hope, especially if you're on the younger side. Even at 32, my nurse (who I still keep in contact with), says "You're still young" I think that's more important than your FSH number. Good luck ladies!

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  14. Thank you so much for this!!! 29 and was diagnosed at 17. Started taking 100mg of DHEA...maybe a miracle can happen on my end as well. Congrats!!

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  15. Did you just buy your DHEA over the counter or ask your doctor? What brand did you use? I was nervous about taking it while on HRT but sounds like that has worked for others.

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  16. Thank you so much. This gives me a lot of hope too.. I'm 35 y/o and never had kids. I was diagnosed with POF last year. It broke my heart.

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  17. Hey Jen,

    I stumbled on to your blog and I find your success story wonderful! CONGRATULATIONS! I was diagnosed with POF at the age of 16 after my period being irregular and just fading away. They don't really know why my ovaries just seemed to shut down so they put me on birth control all the way until I was 25 where I stopped taking them on my own, just to see what my body would do and nothing. It's been a little over a year now and nothing. I am not trying to get pregnant yet (I am not against it happening either, naturally) my boyfriend of 4 years has asked about it but I haven't even gotten my period and the hot flashes and night sweats are awful. I recently had an ultrasound and the doctor said that my ovaries are a little small but he does see follicles. Anyway, my question for you is during HRT did you get your period/ovulate regularly? I really don't want to take anymore hormones but these symptoms are really bothering me and my doctor is warning me about my bone density. I am young still and there are some follicles in there some where lol. So if HRT can get me to ovulate I believe I have a chance on making this happen naturally.

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  18. Hey Jen, that's a fantastic story, so happy for you. Just to give more hope, I was diagnosed with premature menopause/DOR 6 years ago and since then have conceived 3 boys and 1 girl!! My OB is absolutely astounded and says he has never known a case like mine! Sadly, my daughter was born prematurely and died shortly after her birth in August last year - this left us devastated and desperate to conceive another child, having previously felt that we were blessed and happy with our 3 boys. So thinking that my luck must have run out by now, I started googling and stumbled across this page - so glad I did, I have now ordered DHEA supplements and am about to start them, just like others here, am worried about taking them alongside my HRT incase of oestrogen overload and associated cancer risk. I've taken HRT for around 3 years now and agree that it helped me conceive. I was thinking of taking DHEA alongside it for around 3 months before trying to conceive again - how long did you take both HRT and DHEA? Thanks, Lisa x

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  19. Hi, how long did you take both HRT and DHEA? I've been on HRT for around 3 years and am now planning to supplement this with DHEA for around 3 months before TTC again, but am worried about estrogen overload and associated breast cancer risks....? x

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  20. Hi I'm from Ireland and I'm 19 but when I was 16 I found out I have POF I don't think im getting the help I want all the doctors are saying is stay on your pill and last year I had HRT just once and I never heard anything from it or that if even worked I now im still young but I would love if I could even get the help I want to start trying to get pregnant when I go to my doctor I find it hard to ask the questions I want and when I do bring it up all I get back is your too young I'm now an adult and should be left get the help I need but I find it really hard and I am starting to give up all hope and don't know what to do now

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  21. I just want to say Thank You for sharing your story! I was diagnosed with pre-mature menopause in 2008 at 27 and was single. I met the man of my dreams in December 2012 and we got married in August of this year. Reading your post has given me hope. I told my now husband on date #3 that I may never be able to give him a biological child and he was so supportive. I know we will become parents in some way when the time is right. I am on HRT (on my 2nd month now) and I am beginning to feel like a 33 year old should be feeling finally. Thank you for the suggestion of taking DHEA and CoQ10. I'm buying some today!

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  22. Hello everyone ,I am glad to hear success stories with pof, I am 31 year old and was diagnosed with primary ovarian insufficiency at 29 and my periods were always regular until then and this came as a shock , anyways I tried to loose weight but it still dint help this condition ,so I was suggested to do an Ivf , even to stimulate me,my antra follicles should be at least 4 with fsh of at least 12, in my case had an amh of .16 and fsh of 18 on day 2 of my cycle and by the way along came hypothyroid after my poi diagnosis, under medication for thyroid and was suggested HRT to regulate my mensus,strongly recommended to keep your uetrus lubricated and healthy otherwise I was told your uetrus would shrink if you do not mensurate regularly , I took dhea for 6 months and got my follicles and fsh checked every month but this dint help me in my case :( , side effects of DHEA is suffer heavy hair fall , which I was ok to lose should it work to gain some good eggs, I stopped the day I learnt my fsh shoot up to 88 from 18-20 on another CD 2 test, I have being recommended to go for donor eggs and that's my only way to get medically pregnant or wait for a miracle to happen should it naturally occur , my older sister who's got 2 kids and delivered her 2nd son at 35 is my best bet for donor eggs, if I want to keep my progeny going in line with my genes, so I am trying to cultivate some holistic habits doing yoga and being positive , reading success stories and build on to my hopes , I also did take pre natal vitamins , folic acid, coq10, fish oil and of all I lived on DHEA the longest , well this did not work for me at least , wish you all good luck for those who are trying and lots of baby dust !!!

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  23. I stumbled upon your post, and wanted to say thank you so much for sharing your experience. I hope your little girl is growing well and is happy.

    I, too, have a preliminary diagnosis of POF. Just got blood work done and am awaiting results to confirm this it the case. Until just last month, I prioritized building a career and was very much on the fence about having children. That is, until my doctor told me POF is more than likely the cause behind my irregular periods. Now, having a baby all I want -- and I've never wanted anything else this much in my entire life! I am not religious, but I'm begging any and all possibly existing deities to help me conceive and deliver a happy and healthy biological baby.

    It's interesting the way our priorities chance when confronted with this devastating diagnosis.

    I will try and do what worked for you and the other ladies that commented on your post. Hopefully, I too will beat the odds. One baby, a happy and healthy baby, is all I ask for.

    Best of luck to all of you who are trying to get pregnant with POF. Much love and sympathy for you all. And thank you, again Bum Ovaries for sharing your story and giving us the tiny bit of hope that makes this diagnosis a little easier to take.

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