PCOS: The Return

If you missed my last blog post about my endeavors with PCOS, go check it out! It’ll give a little more insight to this post. 😊

After dealing with the new diagnosis of PCOS and needing fertility help, I finally got pregnant and my daughter was born mid 2016. I breastfed Aria for nearly 2 years, during which I only had one menstrual cycle. My old OB mentioned how pregnancy can sometimes “reset the body” and I may not have pcos symptoms after giving birth. When I didn’t receive my first post-partum period until 10 months after my daughter was born, I wasn’t immediately concerned since I was nursing and nursing often suppresses ovulation. However, it was shortly after that time, perhaps around the time my daughter was 15 months old, when I noticed my symptoms rapidly returning as I was breastfeeding less and less. It started with the weight gain. I went from 120 to 130 rapidly. And from there, it just kept going. My hair was having typical post-partum fall out, but why wasn’t it stopping? Why was it getting even WORSE as time went on? Handfuls at a time coming out. So much that I wondered how I had any hair left. Next, my clear skin faded. And then the hair in strange places I’d never had hair before. This is the ugly truth of PCOS, but it had never been this bad before. Was something else happening? Was it my thyroid maybe? Thyroid issues run in my family.

My self confidence was down the drain. I’d become very depressed and uncomfortable in my own skin. I started avoiding people and opting out of any social activities. My previous OB retired and I was stuck with someone new. She wouldn’t do anything at my annual pap appointment because I was still breastfeeding, and according to her, that meant we couldn’t get an accurate picture of what was going on. Maybe she was right, I’m not a doctor. But I was still very frustrated. I had no plans of giving up breastfeeding early, but I didn’t want to go on like this. I asked that my thyroid at least be tested, but my numbers came back fine.

I had such a difficult time giving up breastfeeding, but my daughter decided she was done before I was. She was just two months shy of turning two. I realized then and there that I just wasn’t done. I didn’t want this to be the last time I nursed a baby. I knew I wanted another in the future.

After stopping nursing, I waited a while to see if my period would return. I began tracking my fertility again. Basal body temperatures, OPK’s, physical fertility signs, and all. Once again, nothing was happening. Then finally after experiencing some strong cramps one night, I decided to take an OPK. To my surprise, it showed positive that I was ovulating. This was June 20th, 2018. It had been over a year since my last period, and two months since I stopped nursing altogether. I thought maybe it was a good sign. I stopped nursing and it only took two months to ovulate? Seemed better than before. Stupidly, I wasn’t quite ready to start trying again at that point, so we didn’t. But I was so excited that my body seemed to be doing what it was supposed to. In hindsight, we should’ve taken that opportunity because we wouldn’t get another any time soon.

Again, months of waiting to ovulate and nothing happening. Symptoms only growing worse. I dreaded going back to the OBGYN. I knew what she’d say; “wait until you’ve been actively trying for 6 months and then we’ll talk options”. This seemed to be the universal response at that office. I decided to wait until October to make an appointment. At least then I could say it had been 6 months since I stopped breastfeeding. After speaking with my “new” OB and not getting the response I’d hoped for, I decided to see someone else who had more knowledge with reproductive issues.

November 13th, I had my first appt with the new, new doctor who knows more about reproductive issues. This was after my other doctor said that I could be having premature ovarian failure in October. For those who are unfamiliar with it, it sounded like a death sentence to my dream of having another baby. It essentially means that my ovaries shut down and would never ovulate or produce mature eggs again, therefore my only options would be to use an egg donor or a surrogate. Neither of which seemed feasible to us due to the cost and everything associated with it. There was about a month long window between when my old new doctor told me that to when I saw my newer doctor and all I could think about was how to move forward with this potential diagnosis. Would we adopt in the future? Would we give up completely? I’ve since learned that that lady couldn’t have been more wrong and I know I will never go back to her again (she was my “new” ob after my old one retired, and prior to that appt, I’d only seen her that one other time for a pap).

Back to November 13th, I met with my newest doctor and she was extremely proactive and for the first time EVER, I felt like I was being heard. I mean, this woman wanted to explore a reason for EVERY symptom I was having. After about 6 vials of blood were drawn, she scheduled me for both a pelvic and vaginal ultrasound. At my ultrasound a few days later, the tech pointed out that my ovaries were basically egg city. She counted over 17 follicular cysts on my left ovary alone. She essentially said that was, in fact, a marker for PCOS— which we already knew I had from my old ob who diagnosed me based on symptoms while trying to get pregnant with Aria, my youngest. The thing is, my old ob never dug any deeper and instead of trying to help me resolve the PCOS problem, he simply prescribed me provera and clomid because he knew I wanted to get pregnant. After that, we never even revisited my diagnosis. He acted like it wasn’t a big deal.

The day before Thanksgiving 2018, I received a phone call from my doctor stating that my results were in and I did in fact have severe PCOS, my prolactin levels were only slightly elevated, but still within normal range (I.e. NOT premature ovarian failure), my testosterone was highly elevated (consistent with severe pcos and the cause of many of my symptoms), my FSH level was also very high (which explains all the follicles/eggies— not totally a bad thing, but not great either). More than all that, it was determined that I have insulin resistance and am borderline type 2 diabetic. This was likely because my pcos went untreated for so long, but we’re not certain. It’s also the reason I’ve gained so much weight that won’t seem to come off despite diet and exercise. I don’t know if I was more upset or relieved to learn all of this.

I had had a follow up appointment scheduled for December 4th so that we could go over my results, but they felt it was imperative to call me as soon as the results came in because they said if we didn’t start treatment soon, my health was in jeopardy. They asked me to start Metformin that day.  Metformin would help regulate my blood sugar, help with insulin resistance, and could help me ovulate. I started at 500 mg with the potential to be increased to 2000 mg when all is said and done. Metformin is a gnarly drug and usually requires easing into it for the body to tolerate it well. My body didn’t tolerate it. I felt like I had the stomach flu every day. I was constantly sick, and it was the lowest dose. I feared and dreaded increasing the dosage.

At my follow up appointment, I was pretty dehydrated from getting sick all the time and we discussed other options because my doctor was worried about kidney issues following the dehydration. She said there was one other drug I could be on, but I could NOT get pregnant while taking it and would need to go on BC. The other option was to go straight to fertility treatments to get pregnant ASAP (PCOS symptoms resolve during pregnancy, I’d just have to be monitored for GD if the insulin resistance stuck around). I told her I wanted to continue on Metformin for just a little longer to see if the side effects get better, because for some it does. I wasn’t ready to give up on getting pregnant, but I also wasn’t ready for fertility treatments yet— especially being right around the holidays. I’m glad that’s what I decided because a week later, the symptoms started to slowly let up. Eventually, I was only getting sick once or twice a day, and then once or twice a week. About the time my symptoms left completely was the time she upped the dosage to 1000mg. I started that about 3 weeks ago, and I’ve been sick again— but not as bad as before. Also, since I had not had a period in several months, and I didn’t end up having one while on the 500 mg Metformin, I was prescribed provera again to induce Aunt Flo. My doctor was worried if my uterine wall had too much build up, it could develop into uterine cancer. Apparently that can happen. 

I’ve done quite a bit of research, and some women have luck with 1000 mg doing the job. But many need the full 2000mg dosage. For some, it doesn’t work at all. Usually if it works, it seems to do so fairly quickly. So, I’ve been a little bit frustrated that nothing has happened yet for me, but I’m trying not to be too discouraged. Unfortunately that same doctor that I’ve been loving sent out a letter this week saying she would be resigning from her position at this office because she’s pursuing another opportunity that she couldn’t pass up. So, now I’m worried about what the future’s going to look like for me with this diagnosis. 

To be continued….

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