Post # 1
I’m not sure if this is the best place for this, but I am feeling very emotional about this, so here goes:
Some background – when I was 19, I gained an insane amount of weight in a very short period of time. In the 12 years since then, I’ve had very little luck in losing it and, despite exercising and watching what I eat, have only continued to gain weight. I went to multiple doctors, all of whom just brushed it off as though I must be lying about how much I exercise and don’t record what I eat correctly.
Well, long story short, I finally found an endocrinologist who was willing to listen to me, and lo and behold, I was diagnosed with PCOS last Monday.
I’ve kind of just been processing this in the back of my mind since work has been insane lately, but now that it’s Saturday, I have time to think about it. Does anyone else with PCOS out there have any advice? I’m mostly concerned about the difficulties in conceiving a child – Fiance and I have agreed to start trying after the wedding next year. Obviously, I’d also like to lose at least some of the weight prior to the wedding, but that’s less of a concern as the rest of my life and how others live with it and what works/doesn’t work.
Any advice helps. Thanks!
Post # 2
hello fellow PCOS lady! I think PCOS is very common, so you’re not alone. It does manifest itself in various forms – I don’t have the weight gain but I do have irregular stupid periods / spotting. But regarding infertility – there’s a lot doctors can do for you to help so I wouldn’t worry too much 🙂
Post # 3
I was diagnosed with PCOS about 5 years ago. I, however, am the “zebra” patient as my RE calls me, because while I meet all the criteria for PCOS (confirmed via bloodwork and ultrasound), I am of healthy weight/BMI. This meant that the first line of treatment (aka losing weight) wasn’t really an option for me.
Darling Husband and I didn’t want kids 5 years ago, so I was put on Metformin+BC to regulate my cycles, which worked well. Then, this year we decided we wanted to have kids. Knowing I had PCOS, I assumed it would take a while. However, I ended up getting pregnant on our first cycle trying! It was frusrating because my cycles were long, and I would have signs of ovulating (EWCM), when I wasn’t. Luckily I caught my surge using OPK’s (which can be innacurate for PCOS women, however). Unfortunately, it ended in a miscarriage. HOWEVER, we ended up pregnant again the cycle right after our miscarriage (currently 25 weeks pregnant). Essentially we had two pregnancies in our first two tries. I couldn’t believe it! I was for sure it would take us a while to get there. My RE was just about to start on Femara+Trigger after my miscarriage, but apparently we didn’t need that.
I’m not sure if we just got lucky, or what, but we feel very fortunate to have gotten pregnant so quickly, without any significant medical intervention. We were mentally prepared for a long haul, using meds if necessary. As PP mentioned, PCOS is pretty common, and luckily there are several medication options to allow us to be able to have a child.
My only real advice is to see what your doctor recommends, and track your cycles by temping/OPK’s (if they work for you). By tracking my cycles my RE could see that I did ovulate when I was on Metformin alone, however they were very long cycles (the one we got pregnant with out baby now I ovulated on CD 40). PCOS is very managable!
Post # 4
I was diagnosed with pcos at age 18, and it was devastating. I was told because I basically never had periods (went over a year and a half between periods). Fast forward to 8 years later…after 18 months of fertility treatments we are pregnant with twins! It was not an easy road, and there were lots of tears but it is so worth it. You may go through a few treatments that just don’t work for you but there are great doctors who won’t give up as long as you don’t want to give up. I found weight training was the easiest way for me to actually lose weight, along with watching what I ate. Just doing cardio did nothing for me! Good luck and hopefully yours is a short journey when you decide to ttc! Good luck!
Post # 5
Commenting to follow- OP I feel like I could have written your post, at 18 gained weight and I’ve had trouble losing it- when I did I would gain it right back, the time between periods became longer and longer and I started getting dark chairs all along my chin. I went to one doctor for a while who didn’t seem worried about my lack of periods so I went along with it. Fast forward 13 years later after recently getting married I decided to see a new doctor again because we went to try for a baby, lo and behold it is PCOS and I was told I have lots of little cysts in my ovaries. I’m on metformin now, the starting dose of 500mg which will be increased next month. We’ve discussed clomid so we’ll probably try for a few months and then look at that option. I’ve been doing lost of reading up on it and have heard of lot of positive outcomes with having PCOS. I hope everything works well for you and good luck!
Post # 6
I was diagnosed with PCOS at 17. I have a really hard time losing weight so I can’t help with that. But my biggest problem was my super long cycles and spotting. I was worried it would take me a long time to get pregnant, my sister got it too and she has been struggling to conceive for the past 8 years or so. But it took only 2 cycles for me. However I O’d on CD 80 the cycle I got pregnant and I’m 18 weeks pregnant now. So, keep up hope, you never know how it’s gonna go till you try. Since every one is diffrent. Good luck.
Post # 7
i was diagnosed with PCOS just this year at 26. I gained a lot of weight in college and had a very difficult time losing it. Recently I have had acne struggles with my skin and some unwanted hair growth. My doctor is not very experienced with it and actually only looked into pCOS after I researched it and suggested the diagnosis. I am looking to find an endocrinologist but in the meantime have begu seeing a nutritionist. She is not a specialist with PCOS but she is engaging and invested and she has helped me lose 20 lbs. I do however struggle with depression at times which I’ve also been told is very common with PCOS so with the ups and down my weight continues to yo-yo. I am currently engaed and planning a wedding but I refuse to let pcos make me feel self conscious in any way
Post # 8
I have it. My body (especially my lady parts) FREAKS OUT if I am more than 10-15 lbs overweight. I manage my PCOS by staying in a healthy (according to BMI) weight range and taking Metformin. Acupuncture can help too.
Post # 9
I was diagnosed with severe PCOS at age 15. (Cystic acne, hirsuitism, extreme heavy periods/pain and a changing menstrual cycle ranging between bleeding for one week on, one week off to three or four months with nothing.)
I know it isn’t easy, but your condition is severely exacerbated when you are overweight, so it is a case of needing to get your weight in check as best you can, especially if you are wanting to TTC.
PCOS makes it hard to lose weight, but in no way is it impossible. For me, a lower carb diet with loads of lean protein and good fresh veg and fruit (at about 1200 cals a day) plus 10,000 steps minimum means I can lose weight at a pound or two a week. In February I lost close to 30 pounds in about 12 weeks. I know it sounds harsh, but you can’t hide behind PCOS as areason to stay overweight. PCOS needs to be the motivation for you to get healthy!
Fertility for me was a huge issue (I am now 37 and not trying further). We tried earnestly for over 2 years. It was our choice to not pursue IVF or other methods, but there is a world of options out there if being a Mom is important to you.
Post # 10
haha, zebra patient! Love it. Describes me too, it wasn’t until I came off the pill (luckily not to TTC, but because I had a strong urge to check that all was in good working order before we got to that point) that we found I had PCOS. After being off the pill for 6 months and only getting 1 period, my GP suggested blood tests and an ultrasound, which both confirmed PCOS. My only symptom, aside from absent periods, was my skin – it went from being lovely to very blemished (especially my back), which I must admit is one of the things that freaks me out about coming off the pill again when TTC comes.. I was told by my gynae that after 3 months off the pill, if we hadn’t conceived, they would try clomid.. I’Ve generally assumed that falling pregnant should be possible for me, I might just need a little more help along the way..
Good luck OP!
Post # 11
Thank you for the advice, ladies. This is helpful.
Post # 12
For the record, I am not trying to use this diagnosis to stay overweight. I’m not happy, nor have I ever been happy with this weight gain. This diagnosis just helps me understand why maybe what I’ve been doing hasn’t been working and what I might need to change – but I do work out daily and try to eat healthily (typically swim 2-3 miles a day and eat a low-carb 1200-1300 calories/day). I want to be healthy. I’m sorry you saw my post as an excuse to be overweight – and frankly, that’s my fear in regards to telling other people about this, that they’ll just see it as me making excuses.
I am aware of other options for children and I am not opposed to them; I was just asking what has worked for other women with this diagnosis since IVF is not in the cards for us.
Post # 13
I wasn’t suggesting you were using it as an excuse. I am sorry you interpreted my post like that. I was just trying hard to reinforce the fact that fighting to be at a healthy weight actually reduces the issues PCOS presents us.
Post # 14
I have PCOS and endometriosis, which are the two leading causes of infertility. I’m just got married and we are going to start trying for a baby in the next month. The best diet is something low carb, south beach works really well. I was able to lose 40 lbs that I had gained, but i still have more to lose. As a nurse I’ve done a LOT of research on this, mostly because my endometriosis is unbearably painful and nothing that has been tried works. Anyways, PCOS causes insulin resistance, like diabetes, which is why so many women with it take metformin even if their labs are within a healthy range. basically insulin helps the body use glucose which comes from sugar and carbs. When you have insulin resistance, your body cannot use insulin effectively, Aka Break down the carbs and sugar effectively. That is why low carb diets are the best for losing weight with PCOS. It is not easy eating low carb all the time, but it does help. The weight will come off slowly but it does come off. Good luck!
Also so for those with the darkened areas of skin, the over the counter creams for dark spots worked great. I had a couple spots of darkened skin on my neck and I used that about 3 times and they disappeared.