I have polycystic ovary syndrome (PCOS). In basic terms, this means my ovaries don’t work properly and my hormones are out of whack. Every person with PCOS is different in their symptoms. Personally, I know that my ovaries are both enlarged and have about 15 small follicles (cyst like structures, which are actually not mature eggs) each at my last ultra sound. I also know that I have an hormonal imbalance leading to excessive body and facial hair. The more troubling hormonal issues, for me, is I’m insulin resistant, which lead me to have diabetic type symptoms of fatigue, weight gain, and feeling the need to drink a lot of water (and then pee it all out again) all the time.
I also have Premenstrual Depressive Disorder (PMDD), which may or may not be related to my PCOS. I’m of the school of thought that my body is a linked up system where everything is related, and these distinct medical conditions are just a convenient way for medical professionals to group up symptoms. In this way, my depression and hormonal imbalance aren’t distinct.
More typically, though, my PCOS affects my menstrual cycle. Basically, it makes it all kinds of strange. I can have periods that last for a whole month and a half, the heavy bleeding leaving me drained of all energy. I can have 3 months without bleeding at all, but still get regular PMDD during those months. I can have a period that lasts a week, and then two weeks later have another one. It doesn’t make any sense at all, I just keep marking my cycles in my diary to try to map what the fuck is going on.
People with PCOS often struggle to get pregnant, and are at a higher risk of early miscarriage than people without PCOS. This is because they don’t ovulate as often, and I am typical of that. It is not uncommon for me to have gone three months without a period, meaning I probably didn’t ovulate for all of that time. So whereas people without PCOS will have a shot at pregnancy roughly 12 times a year, I would only have a shot 4 times. The odds of conception are not in my favor. People with PCOS also sometimes do not produce enough progesterone once they do conceive, which can result in an early miscarriage.
My doctor put me on a low carb diet to try to help with some of my PCOS symptoms. She didn’t like that I had a BMI of 30 and made me feel really shitty about myself, but that’s a story for another day. I went along with her advice and cut out all high sugar and high carbs food, except fruit. This is meant to help with my insulin as well. I was very skeptical, but it did improve things for me somewhat. I found I had more energy, which was fantastic, but the most surprising (and exciting) thing for me was that I had 3 periods in a row that were exactly 28 days apart (day 1 to day 1). This has never happened to me in my life! People who have regular periods won’t understand the joy of having a predictable period for the first time ever. I was ecstatic!
Then, after lots of discussion, my husband and I decided to try and conceive. For some of my thoughts on deciding to try to get pregnant have a read of this post. We knew it could take us a long time, and we knew that the NHS wouldn’t help us with fertility until we had been actively trying to conceive for a year. To be honest I’m not yet at the stage where I want medical intervention. I wanted to be all casual and laid back about it. We’re not in a particular hurry.
With my new found “regular” cycle, I could calculate the date range of when I should be ovulating. I also get a pain in my ovary that I think is ovulation, along with the raw egg-white consistency vaginal mucus that goes with ovulation. I love sex, so having sex every day or every other day wasn’t a problem. I made sure I lay with my hip elevated for 15 minutes after every session to improve my chances (my thoughts on this being that even if it doesn’t help, it doesn’t hurt either).
I week or so after we had started having regular unprotected sex I felt a warmness in my womb. I think it was probably just my imagination, but I felt a gentle heat radiating from that part of my body which made me feel peaceful. It’s a new sensation for me, and I couldn’t help but wonder if it meant I was pregnant. I pushed that thought away, not daring to hope conceiving would be so easy.
The day I expected my period drew closer, and I felt the usual lower back dull ache, and I although I wanted to be pregnant, I was happy to think that this would be regular period number four, right on schedule! But then the day came and went, and nothing happened. No blood.
The following day I noticed a small amount of blood when I wiped after going to the toilet. I thought, phew, just a day late, that’s still pretty damn good. I popped my mooncup in and went about my day. When I came to wash my mooncup, I found it only contained the smallest amount of blood stained discharge. I thought it was odd, but perhaps my period was off to a slow start. I stopped wearing the mooncup, and there has been no more blood at all since. Spotting between periods is not something I have ever had before, I either bleed or I don’t. This was weird.
Five days pass since I expected to start my period, and I begin to get a little hopeful. I brought two home pregnancy tests and some folic acid and vitamin D tablets. I immediately stop drinking alcohol, just in case. I took the test. It was negative.
Now it has been six weeks since my last period, two weeks since I expected my period to start. I’ve taken four pregnancy tests in total, two each week, all first thing in the morning. The last one I took was this morning, before beginning to write this post. It was negative. Sometimes I’m convinced I’m pregnant, other times I think it must be all in my head and I shouldn’t be getting my hopes up. Here’s why.
Indicators of pregnancy I do have:
- No period
- Mild nausea
- Fatigue / wanting to sleep more
- Occasional mild lower back pain
- Occasional lower abdominal pain, similar but distinctly different from menstrual cramps
- A small amount of spotting the day after my period was due
- Light headedness / dizziness
- Mood swings / tearfulness
- Hunger, more so than usual
Indicators of pregnancy that I do not have:
- A positive hcg home pregnancy test
- Sore breasts
- Intense nausea / vomitting
- Heightened sense of smell
- Food aversion or specific food cravings
You’d think that the lack of a positive pregnancy test would solve the issue for me, particularly two weeks after a period was due (which would be about 4 weeks since conception, if indeed we have conceived). I know that it is most likely that those regular cycles were a fluke, and what is actually happening to me is my PCOS is doing what it does and making my periods strange. My other symptoms are likely due to having a cold virus and being hyperaware of my own body because I am thinking about pregnancy. My period will probably start in a few days (or weeks, depending on what the hormones are doing) and that will be my definitive answer.
The problem is, the internet exists and, being my curious and anxious self, I have been googling this all to death. I’ve found a few threads where people with PCOS say they had multiple negative home pregnancy when they were actually pregnant (if you want to read the forums yourself they are here and here and here).
Here’s a few examples of the stories (hpt = home pregnancy test):
I had never heard of that until happened to my best friend. She had been trying for a while, went to a new doctor that diagnosed her with PCOS, and started her on Met, she want back about 2 weeks later, and told the doc she was having pregnancy symptoms and swore she was preggo, but her hpts said no. The doc did a test and was neg, and took blood, which was also neg. She sent her for an ultrasound to see how many cysts she had and she was I think about 9 weeks along
I have PCOS, and have had false negative HPTs with every one on my 9 pregnancies. The doctors have told me that it was the PCOS that was causing the false negatives. Most every time I have found out I was pregnant was through a physical exam, or ultrasound. I have even produced false negatives with a blood test. Yes, I know this is typically unheard of, but it has happened.
With my 7th pregnancy I did not have a positive pregnancy test until I was 23 weeks along. At 22 weeks I was in the middle of an ultrasound, the doctor was holding the negative test in his hand, and watching my son on the screen. Of 9 pregnancies the earliest I had a positive urine test was at about 9weeks, and that was when I was pregnant with twins.
The best suggestion I can give for any woman with PCOS who thinks they may be pregnant even with a negative HPT is to go to the doctor.
My own mother was told she could not ever have children due to her PCOS. She got negative pregnancy tests as well as a negative blood test up until she was 6 weeks pregnant with me.
Yes PCOS can have evrything to do with the false negative because in PCOS your horomone levels are not balanced. I was 4 months pregnant and still getting negatives on a HPT. So yes it is absolutly possible.
hi, im 26 yo and am currently 29 weeks pregnant. I had 3 preg tests which all showed neg also a blood was taken. also showed neg. but i had every symptom known 2 pregnancy. my gyno tried 2 put me on treatment for a abnormal gland in my brain . my partner believed, well if u ask him he knew, i was. i was waiting 4 my peroid 2 come before starting meds. i was around 7-8 weeks before any test showed positive.
There are also internet sources that say that having PCOS shouldn’t mess with home pregnancy test results at all, and I completely follow the science on why that should be so. It wouldn’t be an internet search if I didn’t come across completely plausible conflicting information. This has left me in a really weird headspace. Although I know it’s unlikely, I can’t completely rule out the possibility that I am pregnant until I see the evidence of a proper period.
Not knowing is really messing with my head. I feel like the longer this goes on the more emotional I am going to be when my period inevitably starts. I’d also like to know because my low carb diet is not ideal for pregnancy. Carbs are important for healthy fetal development, so when I am pregnant I plan to eat some low GI carbs such as wholemeal bread and brown rice. If I am not pregnant I need to keep on with the low carb diet to keep my insulin in check.
I didn’t expect to have such emotional turmoil so early into this journey, I really want to be all laid back and chilled about it. I know now that because of my PCOS it was really unrealistic of me to believe that I would either have a positive pregnancy test or a period by this point in time.
I think if I had a few more classic symptoms of early pregnancy, particularly sore breasts, vomiting, and changes to my sense of smell, I’d be making a doctors appointment despite the negative pregnancy tests. As it stands, all I can do is try to relax, keep taking the tests twice a week, and wait for my period to start. I won’t drink any alcohol, or take any painkillers except paracetamol, and I’ll keep taking my vitamins.
At this point in time I think my “pregnancy symptoms” are likely to be all in my head. I’m trying to protect myself from emotional upset hu thinking this way. I hope that soon I’ll know for sure.
* Feature image is one of my sketches.
If you have ever had a false negative on a pregnancy test when you tested at least a few days after your period was due, or if you have PCOS and have managed to get pregnant, I’d love to hear from you! Leave me a comment below. Words of advice or support from anyone reading this would also be greatly appreciated!
I’ll update this post with what happens, if and when anything happens, in case you’d like to know.
It’s been another week, still no sign of a period, and two more negative home pregnancy tests, both tested first thing in the morning. A couple of new symptoms: a stretching feeling in my lower belly, which was a really odd sensation and kept me from sleeping. I also sometimes feel a warm heat in my lower abdomen. Other than that I am more tired (I really struggle for the last few hours of work), more hungry, more irritable and I am becoming forgetful. I’m less nauseous though.
This whole thing is very confusing. Sometimes I think I’m pregnant, other times I think my period must be about to start. I’ve even started worrying I’ve got an STD and pelvic inflammatory disease. This is unlikely as I’ve been screened recently. I’ve just booked an appointment to see my doctor next Friday, so I can ask for a pregnancy exam and blood test. Hopefully that will give me a definitive answer. I’ve read that some people don’t metabolise hCG into their urine which can also lead to false negatives. If my period starts before then I can always cancel it.
Another week and two more negative tests and no sign of a period. My doctor took a blood test to find out if I’m pregnant. I get the results on Monday. I was so nervous because it sounds so stupid to say “I think I’m pregnant but all the tests are negative”. She was nice to me though and said she was happy to do the blood test but it is likely I am not pregnant after 4 weeks of negative tests. I had a new symptom this week: excess saliva. That one is a weird one. My body is so strange.
Blood test came back negative. I’ve never felt so crazy. I get the feeling this journey is going to be a difficult emotional rollercoaster. Still no sign of a period.