When Did You Know Something Wasn’t Right?

Today’s post is a guest post from Grace over at Misadventures of Premature Ovarian Failure.  She shares some lessons she’s learned on choosing your doctor and advocating for yourself.

when did you know?

When did you know something wasn’t right?

It’s a difficult thing to know when to seek help. And it can vary from person to person, but the lack of knowledge that women are given about their bodies is criminal. CRIMINAL I SAY! So in understanding what my journey was I hope that you can decide when to seek assistance.

At 26 I was married and I elected to use rhythm and barrier methods together to prevent pregnancy. My internist said I’d be pregnant within a year, so imagine my smugness when she wasn’t right. We continued this way for about four years. I thought I had plenty of time since on both sides of our family babies had been born to 39 and 44 year olds. I was “only” 30.

We “pulled the goalie” in July 2010. Then, months of nothing…not a hint… not a maybe… not a whisper. I began to feel anxiety. I had always been worried about infertility. I called my general practitioner (GP) and she took a blood test which confirmed I was ovulating. She gave a pep talk about how it takes a while for some, about how it took two years in her early twenties to conceive. I believed her. I was soothed. I only needed more time and so I waited…

And waited…

As 2011 came to a close I began exploring my options. I went to one OB-GYN, who declined to treat me because ovulation was occurring and there was nothing wrong except my “hypochondria.”  A second OB-GYN game me the assignment to chart basal body temperature (BBT) for a month and my husband had a semen analysis. I went back to that OB-GYN and was referred to a fertility clinic based on male infertility. I’m not sure why since my BBT looked like a seesaw after ovulation.

The clinic was run by a doctor who was a gynecologist; he wasn’t a RE. At the time I didn’t know this was an issue. He was vaguely reassuring and the nurses, who I actually interacted with, were amazing.

My first diagnosis was luteal phase defect and I had an FSH of 9.8. I did two timed cycles with Clomid, followed by two IUIs with Clomid. Due to side effects, I couldn’t continue on Clomid, so either IUIs with injectable meds or IVF were recommended. We decided our chances with IVF were better.

Our first IVF attempt only produced four eggs so we switched to an IUI. The doctor said we should’ve continued (the decision was made with the nurse since he never did ultrasounds). I was told I was a poor responder.

The second IVF went very well with 7 mature follicles, but we were only able to retrieve 3 eggs. I was so upset, but later learned that the doctor used propofol for anesthesia. You can still move on this drug, so if an ovary is close to a vein the doctor will be unable to aspirate your follicles.

Our third IVF attempt started off great, but then one became dominant and it was too high of a dose. I declined to retrieve and adjusted to an IUI. The doctor patted my leg and said words like “mini-IVF” and “donor eggs.”

I went to my routine acupuncturist appointment with the news and she looked into my eyes and forcefully said, “Get a second opinion!” I did and now I have a wonderful RE. I did a final “mini” IVF and had an amazing 5 egg response. All my eggs “degenerated” in the dish (which means they failed to fertilize).

All of this to illustrate some lessons I’ve learned so you don’t have to (please note I am not a medical professional):

  • If your cycle is shorter than 27-28 days and longer than 31 I would strongly suggest pursuing testing. My 25 day cycle was ‘normal’, but really, it wasn’t normal.
  • Avoid going to a GYN or OB-GYN for fertility treatments. Many of these doctors only see non-ovulation as a problem. They will not monitor your whole cycle and non-ovulation is not the only problem. See a RE (Reproductive Endocrinologist) as they will investigate more thoroughly.
  • If do go to a GYN please ensure you are getting the following tests: FSH on day 3, AMH (ovarian reserve), HSG to ensure your tubes are open, and progesterone on day 21. Other valuable tests are fasting glucose and TSH/T3/T4, but be aware that ‘normal’ and ‘good conditions to conceive’ are very different. I cannot understate the value of having a RE.
  • Don’t be scared of the fertility clinics! One of the reasons I waited 18 months was because I was sure that any bills would be unpaid due to the ‘infertility’ code. Obviously your plan will vary, but often initial testing (not treatment) is covered even though it’s to test for infertility or sub-fertility. Don’t be scared to call your insurance company and ask. Often as long as it’s a test used for another reason it may be covered.
  • Don’t be scared of pushing, especially at the beginning. Ask questions! Do research! Don’t let your GP tell you that it’s fine (a huge regret for me).
  • And the contrast: don’t be scared or worried about trusting and relaxing during treatment. Once you find that amazing doctor remember they have the medical expertise and trust their opinion.
  • Don’t be scared to go to counseling or a support group. I see a hypnotherapist and she is amazing.
  • I love my acupuncturist, and I highly recommend eastern treatments in conjunction with the western ones. Any fertility clinic worth going to sees the benefit as well.

I wish you so much luck in your journey! Hopefully this is just a tiny blip in your journey for a happy family.

After her father was shot and killed all Grace ever wanted in life was a big family to call her own, but in a cruel twist of fate she’ll never have genetic children. She started journaling as a way to deal with infertility, but she prefers feeling as if people are reading her journal, so she switched to blogging. She’s been married for 8 years and done fertility treatments for the last 4. Read about her making lemonade from lemons and continuing her infertility journey, now with donor eggs, at Misadventures of Premature Ovarian Failure. You can also tweet her @hardlygracie.

This post is linked up at No Rules Weekend Blog Party

  • Thanks for sharing. Good tips. I suspected that something was wrong even before we started trying. Being was painful and AF was v.heavy. gynecologist assured me he couldn’t see anything significant in internal examination and ultrasound. A year later I had hormone tests. All fine. Pain continued. He insisted there was nothing. Soon after I saw an RE. I had a fibroid that was causing the pain and that also made conception almost impossible and miscarriage almost certain if I had conceived. Pain better once removed. Still no BFP. Six plus years now. So glad I saw an RE though.

    • Good luck in your continuing journey! I hope you get that BFP soon 🙂

  • Thanks for this info!! I still haven’t gotten AMH checked, but know it’s an important # to know!

    • Sadly I didn’t get it check until I saw an RE, it’s 1.1, so I’m bummed I didn’t get it sooner.

  • A doctor told me at 14 that I would probably never have children. Of course I thought this doctor was crazy! But after getting married and trying for 5 years it was obvious something was terribly wrong. I turned to Dr. Google and WebMD (I know shame on me) but it was during this research I uncovered what is the cause of our trouble. I have an incredibly rare condition called Kallmann syndrome. Of course the doctor I saw thought I was crazy for diagnosing myself but by the end of the appointment came to agree with me. I am a firm believer that we must be our own greatest advocate. Fight for that baby like crazy if you have to! Thanks for sharing all these wonderful tips. I’m thinking of trying acupuncture for our next IVF cycle!

    • Acupuncture is very easy! I enjoy it immensely and if you’re scared of needles just let them know and they’ll treat you extra nice!

  • Thanks for sharing your story. I have some doctors in the family, so I know that they’re not all terrible, but my experience has been that lots of doctors are terrible. I know that something’s wrong- I know it in the pit of my stomach and deep in my bones. I just KNOW. My cycles have ranged from 52 days to 18 days to 34 days… they’re a mess. Always different, never showing a BBT ovulation shift. But my doctor would prefer not to “worry” until we’ve been unsuccessfully trying for a year. It’s been a year. My hormone panels look okay, according to the Dr… but I still can’t shake the feeling. You know?

    October brings a second opinion and lots more testing. I’m just hoping we get some answers!

    • Good luck with your second opinion! I hope you get some answers, the period of time where I had ‘unexplained’ infertility was very difficult.

  • Thank you so much for letting me guest post Lisa!

    • Lisa Newton

      It was my pleasure, Grace! I was so happy to feature your post.

  • Thank you so much for writing and sharing. This is very timely for me as I’ve just made the decision that I’ll be searching for a RE to figure out the reason for my recurrent pregnancy loss. I have really struggled with this decision and have felt fearful of what the process will be like. Your post is encouraging and a good reminder to fight for my future children. Thank you and God bless you!

    • It can be a scary process, I wouldn’t want to understate it. It was stressful waiting for results, and I always pray that they find an easily fixable thing, I am so sorry for your multiple losses, that is so hard.