Troubles with PCOS

kelizafk · November 2014

Hi all! I wanted to share my current personal issues as a 32 year old woman diagnosed with PCOS, and see if any of you had any feedback. After getting off the pill (which I was on for a very long time), I was diagnosed with PCOS, which my doctors are sure I had all along, but the pill had relieved any of the symptoms. I have been married for 2 years, and my husband and I decided to start "seeing what happens." This unfortunately isn't always as easy for those with PCOS, since being 100% carefree is taken off the table. I'm tracking (or trying to) my ovulation, symptoms, periods, intercourse, etc. in order to give my doctor all of my body's information, in case we need to start seeking extra help. Now that you know a little about my current situation, here are some issues/questions I have for others going through similar situations:

1) For two months I've experienced a lot of pain in my right hip. I read online that sometimes this can be a symptom of PCOS, and pressure caused by an enlarged ovary/cyst. Anyone else experience this? I have called my doctor to see if I should come in, and am waiting for her call back.

2) I have been testing my ovulation with Wondfo ovulation testing strips, however so far It always reads negative. I did just have a period, so I'm assuming I had to have ovulated. Have any of you with PCOS used ovulation tests and do they work for you? I use 2 apps on my phone, plus good old fashioned counting to predict up to 2 weeks of days to test...all negative so far for 2 months.

I can't wait to hear from you ladies!

BunnyBerry · November 2014

It's possible to have PCOS but still ovulate and get pregnant, so it wouldn't make sense to get full testing and treatment yet if you've gone off birth control within the past 6 months (which it sounds like you may have, given the way your post skirted around how long you've been TTC).

How did your doctor make the diagnosis of PCOS? If you had anovulation or irregular periods within about 6 months of going off birth control, then you'll want to give it a bit more time because that can be normal.

Using OPKs together with temping is a really good way to prove if you are anovulatory or not. If you have 2-3 anovulatory cycles (as confirmed by temps on Fertility Friend or the like), then you should feel free to see a reproductive endocrinologist for further testing and treatment. If you go past 45-60 days without a period, see your OB for a prescription that can bring on your period and give you another chance at ovulating.

If you've already confirmed 2-3 anovulatory cycles beyond about 6 months past going off birth control, then please join us and get an RE appointment if you feel ready.

But if you are recently off birth control, do take the time to find out if you're ovulating (and not having an OPK+ doesn't mean you didn't even ovulate; it could mean you just missed the surge). In that case, you belong on Trying to Get Pregnant. Your questions would go over better there because they are a community of women trying to conceive, unlike 3T which is a community of women trying to conceive and diagnosed with infertility.

To address your questions:

1. Since you've been diagnosed with PCOS, I'm assuming your doctor saw your ovaries on pelvic ultrasound, and would know if they are enlarged. A large cyst could have formed at any time, but I haven't heard of women getting a preemptive ultrasound to check for a cyst just from some hip pain - typically your doctor would only check for cysts if they're diagnosing PCOS, or you're using ovarian stimulation meds, or you have severe pain that could be a rupturing/ruptured cyst.

2. OPKs give great clues but they're not always accurate. Women with PCOS tend to get many positive OPKs in a row even if ovulation is not imminent. Temping can give you a better picture - if your temps show a sustained thermal shift, you can be comfortable that you're O'ing, even without an OPK+. If you don't see a thermal shift, combined with no OPK+, that's a strong clue for an anovulatory cycle.

kelizafk · November 2014

Thanks for your comments @BunnyBerry and @BlueFairy5! I have been off birth control for over 2 years now, and just diagnosed with PCOS within the last year. I was seeing a doctor previously that didn't seem to think there was anything wrong with being 2+ weeks late when I had never been late before (this after I was already off the pill for a year), and feeling extremely sick. I told her I knew something was wrong, we did blood work and I had a sonogram. I was then diagnosed with PCOS, and it was confirmed that the pain in my right side was due to my right ovary having a volume that was 2x that of my left.

After consulting with my Dr. I know when she would like to see me for testing, more so to make sure there isn't anything else wrong with myself or my husband, not necessarily to go into treatment (I don't even know yet if that's something I'd do). She recommends seeing one of her specialist after 4-6 months of being unsuccessful, so we already have that plan. @BlueFairy5, you mentioned you are on Clomid...what has your experience been like on it? How long have you been on it?

I haven't done any temping yet. The ovulation tests were already less carefree than I wanted, though I know now I don't really have the luxury of being as carefree as I'd like if we're hoping for something to happen sooner than later. Is there a thermometer you suggest? Have you found temping to be very accurate?

BunnyBerry · November 2014

Well, I eat my words as you have been trying for so long off BC! (insert sheepish welcome grin)

You absolutely could see an RE for help at this point. If you are so inclined, temping could give useful info to your doc to help explain if anovulation is part of your infertility cause(s), but it's not necessary before a consult - either way, the treatment will likely be the same.

cbnola71 · November 2014

Tracking everything without being monitored by a RE can be super frustrating. I tried to track my cycle but never got positive OPKs, but that was because my hormone levels were all off and I was in follicular phase for months and months. I recommend making an appointment with an RE if you're serious about TTC. It will make everything seem to go way faster since you'll have an idea of where you are in your cycle!

kelizafk · November 2014

Thanks @BunnyBerry and @cbnola71! It's definitely frustrating tracking on your own without an RE helping. I have an appointment next month (which marks the 5 month mark, which my husband agreed upon with it being the in between mark of the 4-6 month mark my OB suggested). I'm trying to do as much work on my own beforehand so that I can give them as much information on what I'VE noticed and how i've felt, tracking everything and testing OPKs. I've just found that while I need the RE, I also want to understand what's going on with my body on a personal level as well. Getting some experiences and suggestions from ladies also going through a similar thing feels great. I can handle pain and feeling ill quite well, but that doesn't mean it's easy or I don't mind the pain. I've spent the last 2 days in lazy mode because I've been extremely nauseous, have terrible hip pain, and have had a migraine. A little support on here I think is just the thing I need to help get me through it in the meantime. My biggest struggle is being in this in between: birth control hid all my symptoms before, but going on would be prolonging having children. So, until there may possibly be a baby someday, knowing this is how I'll feel in the meantime definitely isn't easy. Thank you for listening and offering support!

kelizafk · December 2014

I just wanted to leave a little update. I called my dr. regarding the hip pain, and was advised to come in right away. It's gotten so bad that laying or sitting certain ways is painful, and some days I have trouble with walking. It's not a problem everyone with PCOS encounters, but if one does it could be cause for concern. I'm assuming when I go Thursday they will do a sonogram (so long as I don't get my period, I never know when that's coming) or an MRI so long as I'm not pregnant. I'll post again after the appointment, in case what I find out could help anyone else with a similar issue.

kelizafk · December 2014

Alright ladies, I had my appt. There really isn't much new information, which is quite frustrating (we're familiar with that feeling). I had a regular exam with my doctor yesterday, and she sent me to get a transvaginal sonogram today. It's been a busy 2 days. The pain I mentioned in my first post has been getting progressively worse, effecting me walking, sitting, lying, and intercourse. It originates in my ovary (quite apparent during intercourse) and begins to throb and effect my whole hip area.

The sonogram this morning showed an additional cyst (I had one larger one in May), with a "ring of fire" around it. I have to be honest, I didn't get too much information that I found helpful from the doctor they had present at the facility I went to for the sonogram, but I also stopped listening when I felt that I wasn't getting anything good from him and didn't feel like he even knew what to tell me. I also am not comfortable with male doctors, but I tried to put that feeling aside. I kept hearing "typically with women with PCOS" whenever I asked a question specifically to what he was seeing with my ovaries, and it felt textbook...which a lot of us aren't. He couldn't even tell me if all of this pain is caused by the cysts or not. I know my dr. will be more helpful once she receives the sonogram results, it's just frustrating in the meantime. I feel for any of you ladies with PCOS...this pain, the nausea...all of it.

Have any of you taken medicine for cyst pain? I was prescribed Naproxen once before, but was afraid to take it because it's what's in Aleve, and I had a reaction to Aleve both times I tried to take it in the past. My joints and bones ached terribly, which seemed like the opposite effect it should have.

kelizafk · December 2014

Hi ladies. I spoke with my doctor again after she looked over my sonogram again. I know most of you that have responded haven't experienced the constant ovary/hip pain, but has anyone else out there?

This time around I was 2 weeks late for my period, and kept my fingers crossed that being late, spotting, and extreme nausea was a sign of pregnancy. It wasn't. After speaking with my dr again, she said we could do another exam to check the cysts in a few months, but she has no answers on the constant pain. She said she sees pain like this when a cyst ruptures on it's own, lasting 1-2 days, but not for months straight. I'm definitely feeling very defeated. I feel like if nothing helps the pain, and there is no diagnosis for why it's happening, this is just something I'm going to deal with every day.

Has anyone else out there experienced this? Has your dr. pinpointed why? Could all my drs be missing something more serious? All the questions and continuing feeling this way is driving me crazy and effecting my daily routine way too much.

sunshine412 · December 2014

I have no advice, but I just wanted to say I'm sorry you're going through this. It sounds very frustrating. Just remember to keep advocating for yourself until you get answers. Good luck.

MissK23 · December 2014

@kelizafk‌ I am so sorry you are going through this. I have no advice to give, but chronic pain is no joke! Please advocate for yourself! There has GOT to be something they can do for you!!

kelizafk · December 2014

sunshine412 MissK23. I'm waiting for some more calls from my doctor and I'll keep pushing for some answers. Our bodies know when something is going on!

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