- May 21, 2011 - Took my last birth control pill in SPAIN, where hubs and I had decided to try for a baby.
- Summer, 2011 -Hot flashes started over the summer, as well as a long... long... long absence of a period
- September 5 or 6, 2011: First period!
- October 25, 2011: No period since early September, hot flashes had returned. I finally made an appointment with the OBGYN to see what the heck is up. She prescribes 10 days of Prometrium to jump start my period.
- November 7, 2011: Blood work in: FSH 88, Estradiol 19, Prolactin 15.2, TSH 3.54. Get the news that I have Premature Ovarian Failure. Faint in doctor's office.
- November 15, 2011: Meet with specialist. Does pelvic Ultrasound - looks like I just ovulated or am about to ovulate! Draws blood, tells me to go home and get busy. We do. He says: if no period in two weeks - take a test. If period - come back. Blood work has FSH at 17.9, Estradiol at 364. AMH is a very discouraging 0.16.
- November 26, 2011: Period comes. But yay, it was a cycle!
- November 30, 2011: Blood work in: FSH 9.7 (It’s a miracle! That’s normal range!), Estradiol 225 (4x normal. That explains the low FSH.)
- January 1, 2012: After charting religiously for a 37 day cycle , it ends in annovulatory bleeding. Boo. Already had an appointment scheduled for the 5th, so I just keep it.
- January 5, 2012: Ultrasound shows cyst is gone. I can start Menopur injections the following day, but I have to decide IMMEDIATELY if I am going to spend the $1,547 FOR ONE CYCLE to do it. Have an agonizing conversation with Hubs. I don’t think it’s going to work - I didn’t have a real cycle. We decide to go for it - who knows when I’ll have this chance again?
- January 6, 2012: Injections come in the mail, but blood work comes back with FSH 52 and Estradiol 15.1 (AMH still at .16). Doc says I shouldn’t start the injections. Maybe next time. Doc prescribes 1 mg of estrogen (and 12 days of progesterone every other month) for every day to control hot flashes. I don’t have hot flashes... decide not to take it.
- January 6, 2012: Decide to go Gluten-Free. Maybe it’ll help?
- January 18, 2012: Saw doc for Ultrasound and blood work. Right ovary didn’t do a thing, left ovary made a follicle! Doc predicts that I'm near ovulation. However, FSH is still elevated at 56, Estradiol is up to 60.
- January 25, 2012: Doc says it looks like my follicle “changed” into the remnants of a released egg - it appears as though I’ve ovulated or am about to ovulate according to my numbers. Estradiol 150, Progesterone 2.4 (it should get above 3 for ovulation).
- February 1, 2012: Blood drawn for progesterone, which turns out to be 1.9. Doc says that would indicate I've started my period. Nope. No period.
- February 14, 2012: Still no period. Blood drawn & ultrasound. Nothing on the left ovary, 3 follicles on the right. Doc says I'm an "enigma" and that my body isn't making sense even for POF. FSH is down to 10!!!! Progesterone is low indicating no ovulation. Estrogen is low again at 78, indicating the follicles probably aren't active.
- February 23, 2012: Ultrasound shows two follicles on the right ovary. Estrogen is up to 128, Progesterone is a little higher as well. Doc prescribes Ovadrill and I finally take my first medication for infertility. Hubs gives me a shot in the belly.
- March 1, 2012: Progesterone drawn - 2.9. Doc likes to see it above 3, but 2.9 is pretty durn close. Instructions to return in a week or when I get my period.
- March 4, 2012: Period arrives.
- March 6, 2012: Blood work and ultrasound. Little follicles on the left and right. FSH 27.4, Estrogen <15. Start letrozole on March 8.
- March 16, 2012: Letrozole didn't work, FSH is back up to a 66, estrogen below 20. Hot flashes have returned. Break down and get on the daily estrogen. See an immense improvement within 5 days!
- April 10, 2012: Period, from the progesterone
- April 20 (ish), 2012: Ovulate! Bum Ovaries ovulated!
- May 3, 2012: Blood work indicate ovulation really happened, with progesterone at 6.4 and FSH down to 7.5! Sweeeeet!
- May 7, 2012: Real period (ovulatory cycle)
- May 8, 2012: Blood work shows estrogen of 28 and FSH of 18. Begin Menopur injections (225 mg).
- May 17, 2012: Nine days of Menopur did absolutely NOTHING for the ovaries. Estrogen level is holding steady at 16. This cycle sucked. Back on the daily estrogen pills and hoping for my sanity to return.
- August 28 - E2 levels at 78 and Progesterone at .3. One follicle at 12 mm on the right ovary... grow, follie, grow!
- September 4, 2012 - First ever IUI!
- September 18, 2012 - BFN
- October 24, 2012 - Surprise BFP - Beta at 34,000
- October 26, 2012 - Ultrasound shows baby measuring at 5 weeks, 6 days with heartbeat at 106 bpm
- December 3, 2012 - Ultrasound shows baby measuring at 11 weeks (a couple days behind) with heartbeat at 179 bpm.
- February 4, 2013 - 20 Week Ultrasound shows baby GIRL growing right on schedule
- June 22, 2013 - Beautiful, healthy, perfect baby girl is born at 8 lbs, 7 oz & 21 1/2 inches long. Happy, happy, happy!
My Timeline
Here it is. In agonizing and in true TMI fashion - my POF timeline.
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Was your AFC ever measured? I've been recently diagnosed with DOR rather than POF and I wonder how far off POF I am. It's amazing that you got your BFP and very reassuring to me. Best of luck with the rest of your pregnancy and delivery :)
ReplyDeleteThey never measured my AFC, but now I wish they had! I thought my AMH was low enough to be pretty darn discouraging at .16 (the very bottom category of five categories - "very low") so who knows what my antral follicle count would have been.
DeleteYou haven't posted in a while, not sure you even keep up with this blog anymore (I stumbled across it on a google search!) but you must know your story is so great. I have read every single post, and while I have no hope for myself, it is nice to see some happy stories with POF. Your willingness to be open about this encouraged me to just today, start my own blog. Hope you are still doing well! I am very happy for you.
ReplyDeleteThanks for getting in touch! I post every so often with updates about the pregnancy, but clearly haven't been posting like I used to! I'm glad you started a blog - I found it to be really therapeutic over the past year and few months!
DeleteCongratulations on your baby! I've read your timeline and most of your posts but I had a question for you. Your period that cycle was induced by progesterone? We're you taking estrogen pills or patches as well?
ReplyDeleteYep, I took 1 mg of estrogen every day - just the generic pill. And while I'm not EXACTLY sure what cycle this egg came from (whether it be one that started in August or September, as I'm not sure if my "cycle" in September was real or just spotting from progesterone withdraw), either way, I ovulated in a cycle that followed a progesterone-induced period. Good luck!
DeleteHi Jen, wow, what an inspiring story. Your story is the first that I can actually relate to in a lot of ways. I read every post on a road trip I took this past weekend. I am sure you are so over talking, writing, thinking about this shitty POF thing. I've been dealing with it for a long time. I think you've inspired me to possibly start my own blog, for my own therapy and hope. This is the first time I'm even commenting on a blog, ever, so really have no idea how to start one. Anyway, I have 2 questions for you... 1. You said you were on pogesterone every other month. So, you were getting a period on your own for the months in between? 2. How are you feeling now? Any horrible POF symptoms coming back, or are your hormones back to normal? Thank you again for sharing your story...it really is giving me hope, at least for this week. So happy for you!
ReplyDeleteThanks for reading, I'm glad my story can serve to help others going through similar experiences! To answer your questions - 1 - I was only on the HRT for 6 months before getting pregnant, so there were three months in there that I did not take progesterone. I ovulated two of those three months. So it wasn't foolproof, but it was a heckuva lot better than never ovulating!
DeleteI'm feeling fine now! I think my hormones are still weird from pregnancy and I'm still breastfeeding, but I haven't had any of my typical pre-HRT symptoms. I had night sweats a few times shortly after giving birth, but I think that's fairly normal. No brain fog, no hot flashes. I'm curious to see what will happen when I'm no longer breastfeeding and my hormones go back to "normal" (for me). My OBGYN said I should try to avoid getting back on HRT as long as I'm still nursing, but I plan on going back on as soon as I'm finished. I guess maybe I'll do some baseline blood work to see what my FSH and AMH look like at that point, but I don't expect them to be great.
Best of luck with your journey. Know that there IS hope for us with POF!!!
I just happened to come across your blog today... I gave birth to a baby girl just over five years ago after being diagnosed with POF. Like you, after everything it was simply the HRT and dumb luck... I am so glad to read of another success story. Congratulations and best wishes on your new family.
ReplyDeleteoxo
Tracy
Always great to hear from someone who had success with POF! I think there's more hope for us than many doctors lead us to believe!
DeleteDo you mind revealing what clinic you were at/who your doctor was? I feel like based off of my FSH (92, 120 a week later) that my doctor isnt willing to check anything and going through the donor egg speech. Im 25 years old now, and I feel like more should be checked like you! AMH, a pelvic ultrasound, etc but she keeps telling me theres a zero chance, that Im already past menopause now, and doesnt think any testing would be worth it. I would love to be with a doctor that has more hope for me and is willing to work with me. Thanks!
ReplyDeleteVanilla, I've heard others with similar stories, you definitely have to find a doctor who will work with you! I live in Southwest Ohio and worked with a doctor at the University of Cincinnati, but I know there are plenty of REs who work with patients who have POF. My FSH was up at 88 when I first got it checked, but that doesn't mean it stayed that high, especially getting on HRT. Let me know if you have any other questions!!
DeleteThank you for sharing your inspiring story. Each time i lose hope, I come read and re-read your posts.
DeleteIt would be a big help if you can you please share your RE's details at UC. I'm in Cincinnati and new to this country. It would be very helpful.
Thank you
Archie
I wish I had come across your blog earlier, when you started all of this. I am so happy for you and your family. :)
ReplyDeleteI had my left ovary removed at 13, and a massive ovarian cyst and ovarian torsion at 29. I managed to keep my right ovary but there was "unknown damage". The second surgery was 15 months ago, and I have had 3 periods in that time. FSH was as high as 95. None of the doctors will touch me, unless I want to go with an egg donor. I felt I needed to take it into my own hands, so I am currently on the acupuncture/herbs route. At last test, my FSH was 30, which was a while ago. I'm also on a gf diet, so I can feel your pain there! Did you go on DHEA on your own, or did your doctor suggest it?
I know you don't really post on here, but I'm glad I stumbled across it. I have been thinking about writing a blog - partially to find other people like me, and partially to vent about the things that don't seem fair - but I think my writing skills would leave me with one follower.... my mom!
I'm sorry you had to go through all of this, but know it gives hope to others. :)
Much luck to everyone else on here. I hope you all find happiness.
Hi Jen, I just want to start by saying a big thank you for your blog, as it has been a massive help to me!
ReplyDeleteMy question relates to your post-baby experience, as like yourself I am one of the lucky ones who fell pregnant and had a baby after having a similar diagnosis (my stats are below for anyone who is interested).
I just wanted to know when you started to notice a ‘drop’ in your oestrogen levels and if/when you started taking HRT post-bub. My son is 12 weeks old and so far I’m feeling good. My GP seems to think that whilst I’m breastfeeding I shouldn’t hit menopause or get any peri menopause symptoms (before taking HRT I felt tired, flat/slightly depressed, forgetful and lethargic). It’s hard to get answers to ‘what happens next’ as there is so few examples of our situation. My focus now is staying healthy and I would love to hear how your POF journey is going.
My stats:
FSH: 54
AMH <1.1
AFC (ultra sound): left ovary 2/right ovary 3
First of all, congratulations on your son! I'm always so glad to hear other success stories from women who have POF. I breastfed for one full year and felt perfectly great, no symptoms at all. When I finished breastfeeding entirely (at about 13/14 months), the symptoms came back with a vengeance. Hot flashes, brain fog, night sweats. Ugh! So I just requested my doctor to call in the HRT and I'm back on. I haven't been back to the RE to check my follicle situation, but I do plan to do that after my next period. Congrats again, and let me know if you have any other questions!
DeleteHello-
DeleteThanks for being so open about your journey as your insight and honesty is heartwarming and helpful. One point of clarification: you mention taking prometrium early on then when you started on HRT, you mention taking 10mg of "progesterone" every other month over s 6 month period to induce a withdrawal bleed which helped you ovulate naturally. Was this 10mg of Provera (synthetic progestin) or was it actually the 100mg of Prometrium? Thank you!!
Thanks for your response Jen...it is great to have some first hand advice! I also plan to breastfeed for 12 months, so hopefully it'll be a while before any of those nasty symptoms come back; I've had a few super tired newborn-mum days, where I thought I hope this isn't hormonal...now I can rest a little more easy and continue to enjoy my little man (I feel so amazingly lucky and blessed to have him!).
ReplyDeleteI hope the HRT is doing its job and that you're happy and well. Thanks again :)
Hello-
ReplyDeleteCongratulations on your daughter, and thanks for your transparency! Were you taking provera or prometrium(bio-identical progesterone) every other month? Thanks?
Faithful, I was taking 10mg of dexy..something or another, I don't think it was provera or prometrium. Although I took prometrium once, at the very beginning, and I did ovulate that month, so I imagine it would work similarly!
DeleteThanks and good luck to you!