RE That Isn't Just Focused on Fertility Treatment?

[Anonymous]

We got pregnant quickly and had our first son with no issues. I had a myomectomy the year after to remove fibroids, had zero complications and no disruption in the timing of my cycles except my flow become what seemed to be abnormally light. We also had timed unprotected intercourse at least 7-8 times and no pregnancy. GYN ran a bunch of hormone tests that came back normal, still light flow (like barely a pad in a day for maybe 1.5 days). She refers me to a RE who did some imaging found zero scar tissue, no recurrence of the fibroids or anything else structurally. Said HSG was "inconclusive", and offered nothing else. The RE became very disinterested in my case when he mentioned "potentially" needing IVF at the initial consult before the tests, and when I told him I just want to first know what, if anything, was wrong before we even consider if we want treatment.

Here I am, 4 months later, with no answers. The periods are still extremely light, and I feel stuck. My GYN says she can only do so much testing since it has to be under a RE, but the RE she referred me to was all about JVF $$$$, without even telling me if I have a problem. He did say maybe come back and redo the HSG.

Anyone used a RE for medical purposes that wasn't focused on just the treatment? I understand treatment may be needed, but I want a RE that is going to focus on a real diagnosis before pushing such a costly solution. TIA.

[Anonymous]

Lots of us with infertility do not have a diagnosis. All of the tests that DH and I took came back perfect. We still couldn't get pregnant without IVF.

I just say this in order to tell you that you shouldn't 100% expect that you'll receive a diagnosis. Maybe you will, but there's a huge percentage of ppl who never do.

Good luck.

[Anonymous]

Typically when people say they are undiagnosed or have unexplained infertility, they seem to have regular cycles and normal tests. In my case, my cycle is so short that from everything I have read, my lining is not shedding properly. My GYN agrees but can't continue to test because she is not designated as a RE for billing purposes. I'm just looking for someone that isn't going to be disinterested because I don't come in the door asking for IVF.

[Anonymous]

I don't know who you went to, but someone like Dr. Frankfurter may be more willing to do testing. I have unexplained infertility and have done IVF with him. In my case, IVF was appropriate. He's really nice and very scientific and will spend the time with you to figure out the problem. He's the last one to push you into a decision. I don't know if there is further testing that he can do, but if anyone in the area will do further testing and not push you into a decision, I think it will be him.

[Anonymous]

What clinic did you go to before? A good one will work with you to get the right diagnostic tests and then create a path forward which may or may not include IVF.

[Anonymous]

Thank you, I'll look into Dr. Frankfurter.

I went to CCRM.

[Anonymous]

I do think they sometimes skip investigating because it can be costly, involve exploratory surgery, and just adds a lot of medical care that may not lead you anywhere.

Whereas the main way to treat most infertility is to IVF. And then with each cycle you learn what worked and didn't work and move on from there.

But yes, if you aren't getting your questions answered, find a new doctor. One should be able to help you figure out the best way forward.

[Anonymous]

Try: https://tepeyacobgyn.com/

[Anonymous]

I really think there is so much that is not understood about infertility. I had similar symptoms - extremely short and light periods - but did have a diagnosis of diminished ovarian reserve (DOR). One thing I learned about DOR is that tons of people have DOR and not know it because they can still get pregnant easily. So why not me?

Well I ended up getting pregnant pretty easily via IUI. They gave me drugs which made my body ovulate two eggs. My RE would say the extra egg just upped my chances (I'm pregnant with a singleton) given I don't have too many eggs left.

But I can't help but think that really what happened is that the drugs they gave me thickened my uterine lining and lengthened my luteal phase enough for pregnancy to happen which was just not possible before. Neither luteal phase nor uterine lining were flagged as issues during fertility testing. They didn't look at my lining at all and my progesterone levels were fine - turns out progesterone tests don't tell you much given how much progesterone levels vary throughout the day. But I knew my luteal phase was on the short side, and during the monitoring from my first failed IUI my uterine lining was very thin, which tracks with the short and light periods.

What I'm trying to say here is echo some of the PPs - sometimes you kind of just have to try treatment and see if it works. Since your RE is pushing IVF and you're not sure about that, get a second opinion for sure, but I don't think it's worth it to invest a lot of time and resources into getting to the bottom of things if you've already done the standard testing. The science is just not good enough for that.

[Anonymous]

My periods became very light and I found out I had endometritis... which is when your uterine lining is infected. I found out through an endometrial biopsy. Might be with exploring.

[Anonymous]

Anonymous wrote:My periods became very light and I found out I had endometritis... which is when your uterine lining is infected. I found out through an endometrial biopsy. Might be with exploring.

I had this too. It's very easy to treat. Just antibiotics.

It can cause implantation failure and miscarriage. I think more women who are unexplained or have repeat miscarriages should be tested for this.

[Anonymous]

Anonymous wrote:I don't know who you went to, but someone like Dr. Frankfurter may be more willing to do testing. I have unexplained infertility and have done IVF with him. In my case, IVF was appropriate. He's really nice and very scientific and will spend the time with you to figure out the problem. He's the last one to push you into a decision. I don't know if there is further testing that he can do, but if anyone in the area will do further testing and not push you into a decision, I think it will be him.

+1million for Dr. F. After a year and 4 failed IVFs at another clinic, Dr. F was meticulous about going through my chart and questioning every piece of minutiae. He followed up things that might have been on the "normal" side of marginal, and eventually he found an unexpected dx that was surprisingly easy to treat. I have 2 kids from the first cycle I did after that with him.
I would have Dr. F be my doctor for everything if I could.

[Anonymous]

Unfortunately this is pretty standard. It’s a for profit business and they make money from IVF. Not antibiotics, synthroid etc

I’ve had wonky ovulation and other strange symptoms. Was told to try IVF and it worked the first time.

Since then found out while my thyroid is within normal range, it’s not for a woman TTC. Started on meds and now have a regular cycle and no more of the symptoms I previously had. Kills me I may have gone through IVF unnecessarily.

To be fair, time isn’t on your side with infertility. Many people don’t want to spend months and years trying to determine what’s wrong. You may then need to do IVF anyway. I’d try IVF.

[Anonymous]

OP here, thanks everyone. You all offered some good perspective and I am already looking into Dr. Frankfurter, though it looks like he only treats in D.C., which would be a challenge for me if it leads to multiple appointments.

Good luck to you all.

[Anonymous]

I have no advice, but I just thought I'd say I'm with you 100% on wanting to get some idea of a diagnosis before starting treatments. If you had light periods your entire life, it'd be one thing. But if this only happened recently, I think it's definitely something to check out. Good luck!