Post your high fsh/premature ovarian failure success story here

[eli]

Congratulations BC!!! Did you just post not long ago about thinking of starting tx again? What great news!!

No, I had been trying to STOP TTC for awhile now. We did 1 IVF, and 1 FET in 2006, then just ttc on our own in 2007. In 2008 I did 3 IUIs and 2 medicated BMS cycles, all failed. Then, I had major abdominal surgery for a benign, large tumor in December and it just really scared me. Since then I haven't been back to the RE and have been trying to put it out of my mind since I am 38 and kids are getting older now too. Of course, never stops me from just ttc on our own... it's free, why not! And I guess it's always in the back of my mind, but we weren't really pursuing treatment.

[BC-tnahope]

want2bamommy, Congratulations!!!

BC-eli, It must have been another BC that I had you confused with Well again congratulations!!!

[Sam22]

Hello to all the ladies on this thread. I used to post on here a long time ago, but only for a few days. I live in the UK, and was an active poster on the UK boards, but tried to start posting in the US too to see if there was any info for poor responders \ POF’s we could share. Unfortunately I just found it impossible to keep up with more than one site... so I dropped out. I do want to post here now as I feel it’s important to share my story. I am 37years old, I have an AMH of 0.1ng\L (0.7pmol) and an FSH of 42, and was diagnosed with POF last year. I had a very early mc in Oct 08, I am now pregnant.

I had one IVF cycle in April \ May 09- a disaster, not even one follicle. I proved I wasn’t a poor responder - I was a non responder. I knew then that IVF was very unlikely to work for me (it rarely does for women with POF, especially the limited protocols in the UK), and I needed to regroup and replan. It has taken me a long time to write this, but I felt I wanted to tell you ladies on this site what has happened since and what I have done in case there is anything that could help others.

I have tried to put all the information I can into this post, as I know I won’t have much time to answer any PMs. Most fertility websites won’t allow me to post the Dr’s contact details, but you can google them. Remember the doctors are in London.

My periods had become increasingly irregular, but I was still ovulating sometimes. I had not had my period since the one brought on in April by stopping the BCP for my IVF cycle, but ovulated in June. For a long time I was terrified of putting this into words, like I will jinx myself and as things started weirdly I was not at all confident.

I’m 17wks pregnant. I didn’t want to post for a long time, as the fact that with POF I’m more likely than the average women to have another mc anyway- but also for others reasons see below, and it started out weakly – without me having a period for months!!, and I didn’t want to post it or tell anyone.

I have been completely stressed and worried all day, but as the weeks pass I’m starting to feel less stressed – I’m far from confident though. I wanted to tell you all, so I can tell you exactly what I did. I also think it’s important to get our stories out there, as it gives others hope.

I don’t know if it’s something I did at all, or if it was just plain luck, combined with lots of sex and praying.... as I said I’ll never know if it was just luck. There was another lady with an amh of 0.7pmol and POF here in London on my UK thread (who I know well ) who fell pregnant after a failed IVF so I decided to kind of copy what she did, and now I’m pregnant too. Her thread name is Missyg.

When my ivf cycle was clearly going to be cancelled due to no response I started taking 100mg of DHEA a day again, which I had stopped months before. I use the DHEA from the CHR in NY, which is very expensive and you have to have a USD300 phone consultation with an RE to even get the prescription. Missyg was using one of the internet brands (from dheainfo.com, she is Missyg on the fertility friends site). I must have ovulated 4 weeks after starting on the DHEA.

The pregnancy stared weakly. We know roughly when I must have ovulated(due to EWCM and temperature charts – and later backdating the pregnancy to ovulation dates), and as sperm can only live up to 72hours, and we hadn’t had sex for weeks afterwards. When my period wasn’t coming still after so long, I did lots and lots of pregnancy tests, all negative. I was using the first response pg tests which are the most sensitive we have in the UK.

A positive result SHOULD have shown up days before it did, and even when it did the line was so so so faint, you had to squint to see it, it was barely there. I know that post menopausal women have a small amount of hcg in their bodies, and that that can cause false positives on HPTs – I honestly thought that was what it was. I went to Dr Zhai(Chinese dr in London), and she did a hcg test for me. It came back at 42, which for how far along I must have been was very very low.

I decided to do what Missyg did and went straight to Dr Gorgy’s office(immune doctor in Wimpole St) and sat there until he had time to see me. He started me on immunes treatment that day (steroids(prednisolone 25mg per day), baby asprin one per day, and clexane 40mgs per day and 800mg of progesterone suppositories (400mg twice a day), and intralipids drip first thing the next morning). The hcg was meant to double every 2 days, it was 189 2 days later, which meant it went up by 4.5times! This makes me think that it was immunes issues that was stopping me getting pregnant, and when I started the immunes tx things started to go better. It’s started so shakily, that every day I was completely terrified.

Another thing is I had taken drugs during my failed IVF to lower immunes – steroids, asprin, and clexane , then stopped when it failed....as did Missyg. Both of us got pregnant a few weeks after a failed IVF (though missy had a period in between, I did not). I wonder if the immunes tx in our system is what gave the egg a chance to develop. Steriods take a few weeks to leave your system, and both of us fell pregnant within a few weeks of taking them.

When I had my immune profile done before IVF(Dr Gorgy), the only real problem I had was raised CD19+CD5+ cells, Missy had the same. These can cause POF – see links below to Dr Beer’s website. Dr Beer believed that cd19+cd5+ cells could attack the eggs as they formed in the ovary, which is why taking it for a number of weeks “before” you intend to add sperm allows the egg to develop.



http://repro-med.net/info/cat5-2.php

States one of the consequences of high cd19+cd5+ cells is POF.

http://repro-med.net/tests/pheninfo.php#cd19b
http://repro-med.net/tests/pheninfo.php#top>

I think I may have been pregnant a few times before this, and that it wasn’t registering on tests as my immunes were causing very early mc. I remember another time I had the very very faint positive line on a first response test (these are the most sensitive and the only ones I use), but I didn’t think it was real so didn’t do anything about it. ( and back then I didn’t know what to do for immunes or who to see)

I know I was supposed to stop taking dhea on the second positive pregnancy test, but this time I cut down gradually. I don’t think any quick major hormonal changes are a good idea. I did an adrenal stress test (saliva test), and it shows my adrenals are really on the floor.

There are a lot of doctors who think that dhea supports the adrenals. Missy has been doing a lot of research into adrenal fatigue and it’s links to low ovarian reserve, and maybe supporting your adrenals helps your ovaries. Some info on adrenal fatigue here for anyone who is a researcher...

http://www.drlam.com/articles/adrena...gue.asp?page=2


Chinese teas – I had been off Dr Zhai’s (Chinese Dr Harley St) teas for a couple of months whilst I downregged and did IVF, and I started them again straight after the IVF. Again, I’d only been on them a few weeks so I don’t know if this combined with the DHEA that kicked started my ovaries and made them ovulate a good egg.

Sex – I noticed EWCM, and DH and I had lots of sex – every 2nd day, for at least a week afterwards. I think our “aged” ovaries struggle to ovulate, and we take longer to ovulate than normal women or what is indicated by OPKs or even cycle monitoring. Had we been in London I would have done cycle monitoring to know when I ovulated, but we were out of London so I couldn’t. I think it’s really really important to keep having sex even after OPKs etc “think” you have ovulated, I do have some evidence \ personal experience of why I think that we with “aged” ovaries may take longer to ovulated, but I won’t go into that now.

I want to tell you what I did, in case you can take anything away from this....I really wish I knew if it was something I did, or just plain luck, so I could help others. I hate that any woman should have to go through the pain of infertility, I wish I could find the cure. There is no fairness in the way fertility is handed out. I don’t know how often I will be able to check my emails for a while so I’ve really tried to put all I know in this very long note.

Another thing that may or may not have helped is before my IVF I took the birth control pill for 3 weeks to lower my FSH, remember though that my IVF cycle in April May 08 was a disaster – not even one follicle, and it was June when I fell pregnant. I’m not sure if the BCP had an effect or not, but thought I’d mention it.

Please please don’t be offended if I can’t answer any PMs, I’m really sorry but I just don’t have the time at the moment..... I’ve really tried to put everything I know into this post.

The absolute absolute best of luck, big hugs, and baby dust to you all.

Sam

[Sam22]

Hi, I have been trying to post my success story here - I got the message it needs to be reviewed by the moderators (it's long and contains links), but this was about 8 hours ago. I haven't been contacted by any moderator, and my story has not appeared.... I'd really like to post as I have POF and maybe other women could learn something from what I did.

Can someone please let me know how to contact the moderator to see why my story won't post?

Thanks

[BC-tnahope]

Im working on it

[enniroc]

Hello!

I posted a message here a couple of months ago as I had just taken a positive pregnancy test and was worries about miscarriage rates and DOR.
Now, 2 months later, I feel finally confident enough in this pregnancy that I have decided to post on the success board.
I was diagnosed 4-5 months ago with DOR at age 34: 3-day FSH (taken only once) of 22 and only two antral follicles. At the same time, my husband was diagnosed with poor sperm motility. Needless to say, we were not quite depressed!
We have already a beautiful and perfect 2-year-old son that we conceived naturally in November 2006 after 6 months of trying. We had also managed to conceive again in December 2008, also after 6 months of trying but also after experiencing weird changes in my cycles. Sadly, we miscarried at 7.5 weeks (fetus measure 5 weeks and h/b was weak).
After my diagnosis in May 2009, we saw an RE, who, despite our bad numbers, was somewhat positive and told me that apparently "my age trumped my high FSH" twice. So he "simply" started me with Clomid + IUI (which I know is not the standard protocol for DOR, although this RE is a DOR specialist). The first one failed (had my periods only 7 days after ovulation). For the second try, he added prometrium to start taking 2 days after the IUI. And that worked!
I am now 13 week pregnant and everything looks great so far. We underwent a CVS test last week, and the full results came back today: the baby looks completely normal.

A few things that might have helped (despite the treatment):
- I had started weekly acupuncture the same week I was diagnosed.
- I had made some changes in my diet at the same time (more fruits, fresh juices, vegetables, etc.) and lost a few pounds
- We managed to drastically improve my husband's sperm motility between the 2 IUIs with being careful with laptop on the knees and taking "Fertility Blend for men". We were so focused on my problem that we had almost forgotten that my husband was a factor to our infertility as well!

Good luck everyone!
Corinne

[MaritsaM]

Hello everyone,

I thought I'd post my story since I post replies.

My story...

I am 35 years old and have been married 2 years. I have been trying to conceive for 2 years. Prior to leaving my home town and getting married, I was seeing my gynecologist for cysts on my ovaries. At that time, my Dr. said that I might have endometriosis but that it couldn't be confirmed without a laparoscopy. Doc did not want me to have the laparoscopy because that may cause more harm than good and advised me to do an aggressive treatment of Lupron for a total of 6 months. After the 6 months, I had an ultrasound and the cyst (golf ball size) shrunk, but didn't totally disappear. She had also advised me to start trying and needless to say nothing happened. So, after 6 months of marriage, my doctor recommended I go see an RE. I was telling her how I wanted to see the same RE my friend was seeing but she recommended I see an RE in closer to where i live. So, I went to Shady Grove. My FSH was 6.4 and my AMC was 10. I got the go ahead and treatments began. I had 2 IUI's but no success. I moved to IVF #1 and had all the testing done. I had an HSG that showed that one of my tubes were blocked and at the time my RE had said he may have to remove it. They also found that my white blood cell count was high and my cyst may be an endometriuma. My RE suggested I go see my FP and a Gyno Oncologist. My FP said sometimes some people have a more elevated WBC than others. I also went to see the Gyno Oncologist who confirmed tht my cysts were benign. My #1 IVF was in Feb 4, 2009, I had 6 eggs retrieved and 2 fertilized with rescue ICSI & 2 transferred = BFN. When I got the call for BFN from RE, we discussed the next cycle. My RE stated that he would increase my stim dosage and do ICSI. During the 2 ww, I was having sharp pains and felt very weak, but later noticed I also had a low grade fever. In the meantime, I kept calling my RE's office and talking to the nurses and describing my symptoms but then I also noticed I was having low grade fevers and the nurse said it has been 2 weeks since your retrieval if you had an infection from IVF it would have shown up 24-48 hours after the retrieval, so she suggested I may have a virus. I said ok then I'll go see my FP. They also said it may be mild OHSS. I didn't have OHSS. Needless to say, a few days later I was rushed to the ER with excruciating pain. Three days later they sent me home with antibiotics and a scheduled laparoscopy for the following month. A month later I went in for a laparoscpy and had a laparatomy wherein they removed my left ovary and left tube. My RE told my husband that they did the laparotomy because they couldn't visualize my organs via laparascopy because I had a severe abdominalpelvic infection. A week later I went back to the hospital for a post-operative infection and they sent me home with a pick line for IV antibiotics and a drain. In June 2009, I was diagnosed with DOR (FSH 20) and my RE said my only chance for having a baby was by DE. I was devastated. I cried everyday for weeks, until I found this site. I can't tell you how this site has changed my life. I thought DE was truly my only chance. He never said "you know there are RE's out there that deal with special cases like yours."

DH perfect. Me: DOR, High FSH, Stage 4 endometriosis.

I just recently finished an antogonist protocal (cetrotide, ganirelix, 300 IU bravelle, 150 menopur and Novarel (trigger shot). Egg retrieval was Sept 17th. Fert Rpt: 2 matured, 2 retrieved, 1 fertilized. My embryo didn't make it past Day 4 and therefore I didn't go to transfer.

I have picked myself back up and will try again. I have made an appt. w/Dr. Klingman of CRMI for next month.

Hoping for my Miracle Baby!

Lots of baby dust to all!!!!

[petal71]

Wow, great to read some more success stories!

Corrinne- how fantastic just from clomid! Congratulations!

Sam - really glad you were able to post this amazing detailed info. Its so useful to ppl like us who are TTC. Congratulations, that is such an incredible "against the odds" story.

Maritsa - really hope your next IVF with the different clinic is successful.
xoA

[CJ29]

Hi I have been reading everyone post and it has been very helpful. I am at my breaking point and i could use some encouragement. I have been to many of the best RE in nyc and most wont work with because of my hish FSH. I had one cycle that was cxld at columbia because of poor response. For one year every month I had a cyst so they did not do anything and my clock keeps ticking. I am out of hope. I am now with CHR and taking DHEA which is making my hair fall out. It has been three months since a period and I am just so sad. I am 40 years old and I have no children I need some advice on what else i can do. I go for acupuncture and shots of wheatgrass. I have appt with Dr Spandorfer but think i may cxl I know he will say DE and I have been trying to get my arms around that idea.

[jbeacham]

I'm so sorry you're going through all of this. No one deserves it. I would strongly advise looking into seeing Dr. Jerome Check at The Cooper Center in Marlton, NJ. You can check out his website at ccivf.com . He specializes in high FSH and really doesn't push DE on anyone. He is also much less expensive than other clinics w/ his "low stim" protocal (it pretty much cuts the rate in half since they're expecting to be retrieving and working with fewer eggs than regular patients), so it's easier to do more attempts. He told me he had a woman in her 40's w/ an fsh of about 100 who did IVF about 9 times and finally brought home a child. If you live in NYC, you could easily drive there for a consult--it's outside of Phili, basicly. I think you would be glad you found him--I wouldn't have my son without him!

good luck--there IS hope!