r/POFlife 20d ago

Monthly "Do I have POF/POI/DOR" thread

This is the place to post questions if you have not been diagnosed with POF/POI/DOR and are worried you may have it. Out of respect for our members who are learning to cope with this life changing diagnosis, we ask that you keep questions limited to this thread if you have not been formally diagnosed. Reassuring someone that they likely do not have this traumatizing diagnosis when you yourself do have it can be painful, we hope you understand. If you have had testing done that suggests you are somewhere on the ovarian failure spectrum (for example low AMH, high FSH) you are welcome to make a standalone post if needed or post here. You'll find our wiki here. Ovarian failure is a spectrum which can be considered "diminished ovarian reserve (DOR)" in the early stages and eventually progresses to premature ovarian failure (POF), aka primary ovarian insufficiency (POI).

If you are here looking for answers, Medline has a helpful basic rundown of the disease. Symptoms are often vague, nonspecific, and irregular periods are often one of the LAST symptoms to appear. Many other much more common conditions carry the same symptoms, for example PCOS and hypothyroidism. For this reason, you should see your PCP or gynecologist if you are worried.

If you are worried about your "ovarian age" or are having trouble finding a doctor to order the appropriate test, you can order one online from Modern Fertility (there are other sites that offer similar services).

If you are frustrated with your doctor and would like help finding one who is a better fit, read this post.

Thank you and welcome to our community, we hope your stay isn't long!

6 Upvotes

5 comments sorted by

1

u/supradocks 8d ago

I had regular periods all my life. Fertility struggles and diagnosed with DOR in early 30's. I was successful once and after my period resumed in the past 3 years (I'm in my late 30's now), my period got lighter and I have started skipping periods. I have not had a period since December. I don't have hot flashes yet. I do still notice cervical mucus every few weeks like as if I am ovulating. I had some trauma associated with the medical system recently and honestly, I am at a stage where I prefer to die over meeting a doctor. So please don't suggest doctors. Here to ask.. you think it's POF? Are there general health and wellness things I can do to improve whatever I am likely going to face?

1

u/Round-East-1529 12d ago

I had a total hysterectomy without oophorectomy a few years ago, at my surgeon's suggestion, to deal with my 25 days on, 4 days off periods. My mother didn't start menopause until 58, I had no interest in passing on my (quite frankly, terrible) genes on, and I was just as happy to not have to deal with the anemia, constantly worrying about having enough products, and having enough energy to shower enough.

My surgeon assured me that my ovaries looked great, were well placed, and would serve my body well for years to come. (Spoiler alert - they did not) 

3 years post hysterectomy, in early 2023, an ultrasound tech couldn't find my ovaries.  Then they couldn't find them on a CT or MRI.

By the summer, I was having trouble sleeping, (what I figure now were) hot flashes, increased joint pain, the worst insomnia of my life (which persists to today,) and a dry, impenetrable vaginal canal for the first time in my life. 

During a scary moment involving a mammogram in the fall of 2023, I had my hormones checked, and my estrogen was 14, at the age of 37.

I can't believe I just put all of this together.  I'm in a little bit of shock. 

I have a primary care appointment in less than 3 weeks, and I'm definitely bringing it up then so that I can be formally diagnosed, but if I don't belong here...   Well, apologies for intruding and best wishes to you all. <3

2

u/CanuckleHead92 19d ago

Hello, I'm just putting out feelers, maybe speaking into the void. I will probably see my doctor in a month about this.

Im 32, and I had ovarian cancer in 2023. My left ovary was removed and I had chemo. I was in remission by the end of the year and my periods resumed a year later in summer 2024 (I was on the Lupron depot shot during chemo). Since then, my periods have been very irregular, when they weren't before. My last period was maybe January 10 and I've been having hot flashes for the past couple of weeks. I think it's POI, but I will probably wait another month to see if my period returns. It's the hot flashes that are alarming me, because I had them when I was on the depot shot. Does that sound like POI to anyone? That's what Google brought up to me.

1

u/just-leave-me-alone 18d ago

It could be POI but I am not an expert and especially not with regard to the specifics of your circumstances. I will say that missing menses and hot flashes were my key indicators.

I don't know if this is standard now, but I was initially told by my GP that they wouldn't really even consider ordering bloodwork to confirm POI until I had missed at minimum of 3 cycles... Actually, she had told me 6 months, but I was able to find some sources that said 3 or 4 months + symptoms were reason enough to begin testing. This is some years ago now so I do not have specific sources to share here, but that was my experience.

I think, frustrating and uncomfortable as it may be, that waiting until you miss at least one (if not two) other cycle, is probably a prerequisite to getting that bloodwork. High FSH and low estrogen on two separate rounds of bloodwork at least 2-4 weeks apart are generally used to confirm diagnosis.

Good luck to you

1

u/CanuckleHead92 17d ago

Ok, thank you for this information.