Thursday, June 12, 2008

Diagnosis: Unexplained

I'd just like to say...I knew it.

Well, of course I couldn't be 100% sure. But I had a pretty good feeling that that's what we'd be hearing today.

And I could eat my words (yesterday's post) about not wanting to walk out with a prescription for Clomid. Because halfway through the appointment, I was so afraid I was going to be walking out with nothing at all, and I was desperately trying to think of a way to at least get the Clomid.

Basically, everything came back normal. DH's SA was good, but the motility is just a teensy bit low. The doctor said this isn't an issue and can fluctuate from sample to sample. And me, well, apparently I should have had many children by now. Because not only are all my hormones in line, my uterus, ovaries, and tubes are clear and beautiful, and they measured 41 antral follicles.

So, diagnosis? Unexplained. There's no apparent reason we have never conceived. Prescription? Go home and keep trying!

Well, of course I wasn't about to take any of that. After 14 cycles of careful charting and timing, there's no way that I'm just gonna keep doing nothing.

They (there was a rotating OB in there who was kind of annoying me because he insisted I was at the peak of my fertility, when I, and any other person who knows anything about fertility, know that my fertility peaked 10 years ago) said the next step is IUI with injectables for superovulation and a more detailed SA to double check on the motility issue, and if those don't clear things up, IVF. But they said they don't recommend either of those steps for several more months.

At that point, they clearly thought the appointment was over. But I just couldn't leave without any action plan. So I asked the doctor what about Clomid for now? She said yes, that would be fine - she didn't think it was necessary, but it shouldn't hurt.

So the plan is 3 cycles of Clomid, with the first cycle being monitored by u/s to make sure the Clomid is doing it's job. She actually prescribed Serophene, which I understand is just another brand name of the medication in Clomid.

The only result that was not as expected was the high antral follicle count. Which they actually miscounted. Because 28+13 doesn't equal 51. But I'm not the one that realized that...it was my mom. Moms are the best. :)

But even 41 is higher than anything I'm seeing as a reference range for AFC. According to the doctors, this is a great sign. They don't think there is any chance of PCOS because I have such regular periods. But I'm wondering, is it actually good to have such a high count? And just because I have regular periods, does that mean that I definitely don't have PCOS?

I guess I am looking for an answer. I'm grateful nothing is wrong. But on the other hand, if something is wrong, then you can fix it. Since nothing specific is wrong, basically, we're just going to keep doing what we've been doing, plus Clomid...and I'm really hoping we don't have to go too far down the road of treatments...

27 comments:

Mrs. Spit said...

SAHW - can you email me through my blog? I have a friend who is the honest to goodness expert on PCOS. I don't think the fact that you have regular periods rules you out - there are a lot of reasons.

Good luck with the chlomid. It was a bang up sucess with me. (Well, until the pre-e, but that's another problem entirely.)

shawna said...

I'm glad that you were able to stick to your guns enough to at least get the Clomid. I am horrible at being assertive. Hopefully this will be all that you will need.

momofonefornow said...

Clomid totally worked for me, I hope it works for you too. You can have PCOS and still have periods so that doesn't completely rule it out. Good luck, I am sending you happy Clomid thoughts.

Lost in Space said...

Good for you for not leaving until they gave you a plan of action!

I don't have much knowledge on PCOS or high AFC. I'm on the other end of that spectrum. Hopefully someone else has some useful info. for you.

I think your plan sounds great and I am happy to hear they will be monitoring you on the Clomid - especially with all those follicles ready to grow!

Good luck with your next cycle. I always feel so much better when we have a plan in place.

Katrina said...

I have PCOS and have very regular periods. I would have an occasional long cycle, but generally pretty danged regular.

Plus if you have been trying over a year and no success, you need to skip the OB (they only maintain pg's and their training is not in how to GET you pg) and go see an RE. They will do more thorough testing regarding possible PCOS.

And trust me, just because you are having periods and have a high AFC does not mean you ovulate every month. The clomid may help, but if you have PCOS, adding metformin (for possible insulin resistance due to the PCOS) would be great.

Best of luck! Email me any time and I can help you with questions for your doc.

Katrina
klfrye@earthlink.net

Still Standing Strong in A Bloom of Hope. said...

Both of us saw a doctor back home and after 2 months of poking and prodding we were given the healthy tick. I never asked. I just assumed that I had to trust the doctor's advice and we continued trying.

After 2 years of trying, I grew frustrated. And we went to see another RE and another 2months of poking and prodding. How they found out I had endometriosis and what's not? This time, they did a HSG and a CA125.

From then onwards, I ask and ask and ask. Sometimes I feel that we're being treated as a number, just another case. So, if i'm paying $100 a session, just to hear him talk, I want him to talk to death and will not leave till there's a plan.

I'm on Clomid too, for 2 months and if it doesn't work, it's my first ivf.

Best of luck and keep us posted..

Jill said...

not much to say except that "unexplained" is the worst kind :( I hope you can find an RE and things get better for you soon.

Mya said...

I think unexplained may be one of the toughest diagnosis. If you've been trying for 14 months and want to be more aggressive, you may want to skip the OB and head to the RE. OBs are great once you get pregnant, but aren't expert at getting you there.

I'm glad your doc is going to monitor your Clomid cycle. Best of luck to you!

Mel said...

I have done a lot of reading and research on PCOS since I got diagnosed, and just because you have regular periods doesn't not mean they should rule it out!
I agree whole-heartedly with the above commentor that recommends you move on to a bonafide RE. Obgyn's are just not specialists and they are used to dealing with the fertile population on an every day basis.
I hate that "you're still so young, you have all the time in the world" BS. I want to find those people that said that to me 18 months ago and shove all my negative pregnancy tests in their face.

Lee said...

How frustrating.

Hang in there.

~Jess said...

How frustrating! Sometimes I think it is better to know, at least then you know what you're up against.
Hopefully the clomid does the trick. It's frustrating when doctors discredit your concern: I want to smack them upside the head at that point.

Thanks for your comments on my blog:-)

alicia said...

oh man how annoying. I would go crazy with the un-known diagnosis! I am glad you got Clomid. That is a good place to start, and lets hope that does the trick for you! Sorry the appointment wasn't what you expected it to be!

DC said...

41 AFC??!?!??? Holy moly!! You, my friend, should be Super Fertile. I hope the Clomid does its job!

Rachel said...

I am sorry you didn't get any answers. Good luck!

surpriseofunfolding said...

Thanks for stopping by to comment on my blog. I hope the Clomid does the trick for you!

If you decide you want to go see and RE - which I also think is a good idea - and you are in the Toronto area, let me know. I would recommend the RE we saw, and I received a couple of other names of good people when we were looking too.

Clomid works well for many people. My RE didn't like it too much since it can have an adverse effect on the uterine lining if you take it for too many cycles. He was very up on things like that.

But, I hope Clomid will do the trick for you. Unexplained must be one of the hardest dx.

surpriseofunfolding said...

oops, forgot to say I loved your insight that "The key is how we approach [challenges] …that will determine how big they appear in our eyes." - I hope you don't mind if I use this for a springboard in a future post. Thank you!

Nit said...

Hi from NCLM :)

Well, this was good & bad. Good that they found nothing majorly wrong (like in my case - blocked tubes), but bad because now it's just a waiting game. I imagine the not knowing is the worse. I am glad that you were adamant & got a plan and some clomid. One of my friends went thru something very similar & on her first month of Clomid got pg with twins :)

Good luck & take care :)

Away2me (Deanna) said...

We have unexplained IF too. It is totally frustrating. Now we are doing our first IVF cycle and I keep waiting and waiting for someone to say, "Ah ha that is why you haven't gotten pregnant on your own" but so far all they say is "Everything looks normal"

I agree with everyone else, drop the OB for now and find an RE. Don't mess with Clomid more than 2 or 3 months.

Good luck.

Candid Engineer said...

Sorry to hear that they can't give you a reason for what's going on. It must be frustrating. I am glad, though, that you insisted on an action plan so that you can move forward.

scarredbellybutton said...

What a shitty dx. I'm glad you at least got some Clomid.

sara said...

I'm sorry that they gave you the "unexplained" label. But I'm hoping clomid for a few cycles does the trick for you guys and you don't end up any further down the path. 41 antral follicles sounds great, as far as being good on PCOS info, I'm not. But I hope someone can answer your questions for you. I will continue to keep my fingers crossed for you though!

Queenie. . . said...

Good luck to you this cycle with the clomid, and good for you for being assertive!

Have you checked out any of the nutrition/supplements/alternative medicine books? I'm just starting down that path (not sure if I even believe in it, honestly), but at least one author that I've looked at claims that a huge percentage of "unexplained" infertility can be resolved following his plan.

Jill said...

Thanks for visiting. The best site I have found out there for PCOS is soulcysters.com. There are a million articles and a message board that will tell you pretty much eveything you need to know from the medical perspective and that of people who are living through it. Feel free to email me anytime if you want to talk :)
JRenee211@Gmail.com

InfertileMadWoman said...

Aww damn, I am sorry that you didn't get any answers, but as you have already been told PCOS is a tricky bitch, that is why it is a SYNDROME, and not a specific disease, you can have any mixture of symptoms, and have it.... The Clomid should help you though!! Hang in there, your day is coming!!!

Hugs,
Rebel

Wishing 4 One said...

I really hope the Clomid works for you and very soon you will get that BFP that so many of us are trying to get. Sending you good wishes and thoughts....

Kim said...

I think you can have regular cycles with PCOS - it is a syndrome meaning you can have many or few of the symptoms which can also vary in degree. Good Luck with the Clomid! I agree with a lost of the others - do the Clomid and chart your bbt and if nothing then see an re. nclm

kate said...

Just chiming in to say that I have PCOS, and have always had regular periods. It is far more common to have less regular periods if you have PCOS, but the major determinant of PCOS tendencies is whether or not your androgen/other hormone levels are where they should be. You can definitely have PCOS and still be ovulatory and cycle regularly (as evidenced by the 10 years I spent with excruciating mid-cycle pain as my body ovulated through the cysts and caused massive painful ruptures... once a month, every month! Terrific!).