Help! Need Advice

Amethyst8 · 08-25-2008, 06:16 PM

I am 31 yrs old and have been on bcp since I was 14 I would get my AF for about 3-4 weeks non stop and would be so heavy that I would get anemic. As I got older my gyn said I had PCOS because of my symptoms like acne, alopecia, hirsutism, dark skin patches, she told me I am borderline diabetic. But all my blood work comes up normal and i had a transvaginal ultrasound and I don't have any cysts. I have hidradenitis suppurativa which I am reading on this forum that it is also realated to PCOS who knew. So the past two yrs I have been on NuvaRing and since I been on it I noticed my acne has cleared but both my legs ache like crazy when I am on my AF and for the past couple of months my mood swings have been really scary. Last month I was in the hospital because my left arm and leg felt weak and I had tightens in my chest. They ran all types of test and gave me blood thinners but all my test came back negative. They told me to follow up w/my gp and she said to get off my bcp for a couple of months see how it goes. I also made an appt to see an endo because I had not seen one since I was 14 (an endo was the one that originaly put me on bcp) She has run a bunch of hormone test and everything is normal and told me to see a nuerologist because I could have had a mini stroke called a TIA. I went to my gyn and told her what my endo had said and she said she did not think the NuvaRing cause me the symptoms that put me in the hospital because I have been on them for 2 yrs. Im going to the neurologist this Thursday to see what he says. My endo is now says she thinks I don't have PCOS because my blood work is normal but I have all the symptoms of PCOS except for the cysts. I am worried that if I am off bcp my AF will be very heavy and nonstop because that is what has happend in the past. Any advice will be greatly appreciated.

Julia Gulia · 08-25-2008, 06:25 PM

Definitely mention to your neurologist that you are on the NuvaRing. There are some rare but serious risks associated with this and other hormonal birth controls. I took it for three years until I couldn't bear the emotional side effects any longer. My side effects from the NR actually got A LOT worse the longer I was on it.

Ask your doctor about taking a break from the ring while you are getting all checked out. When is the last time you had an AF on your own (not BC induced)? I would bleed for 3-4 weeks at a time as a teenager, but now I have 2-3 days AF's on my own.

Good luck with your tests. I hope your doctors can give you some answers!

Amethyst8 · 08-25-2008, 06:56 PM

Hi Jules,

I been on bcp since I was 14 so many I can't even remember them. But this last two yrs I have been on NuvaRing and made my sex drive nonexistent and the past four months I have had depression like crazy when on my AF that the lady I work with said I was scaring her. She doesn't know that is the real me LOL! I don't even know when I had a real period on my own w/out the bcp because I have tried coming off of them and my symptoms just worsen like acne, face hair and my AF will be so heavy with big clots and for about 2-4 weeks that I become anemic so I go to the gyn and gives me progesterone to stop the bleeding and gives me a new bcp try. When I went to see my gyn after being in the hospital she gave me 3 choices of bcp: IUDw/progesterone, micronlor, and depo-provera injection. She said they where the safest because they don't contain estrogen and even if I had a stroke I could still take them.

LaTejanaFria · 08-25-2008, 07:06 PM

Amethyst,
I agree with Jules. THe most probable reason why your results are coming back normal is because the NuvaRing is making those results possible. Since you're on bcp, you probably WON'T have cysts on your ovaries, but the other symptoms do appear to be PCOS linked.

Go off the NuvaRing while you're getting new tests so the docs can see what your body does by itself without any interference.

Julia Gulia · 08-26-2008, 01:20 PM

Amethyst,

The ring had definitely started making my sex drive non-existent too, as well as my self-esteem. I think it is a VERY good idea for you to go off of it. I would NOT recommend the depo-shot to anyone, ever. Everyone I've known who ever had it had a not-so-fun experience with it.

I would talk to your doctor about going off the BC altogether. Give it a few "cycles", keep track of your cycle days on a calendar, and see how long they become. Talk to her about other ways to treat your PCOS symptoms, and not just mask it with hormonal BC. If she isn't helpful with your PCOS, then I'd seek out a doctor who is knowledgeable on the syndrome, and willing to be proactive with you.

Like I mentioned earlier, my AF's were a lot like yours when I was that age as well. (TMI on the way...) I can actually recall a day in high school, very vividly, when I bled through several flying diapers at once (the ones with wings), straight through to my desk chair. That's how heavy I'd bleed for weeks. I used to have to line the pads up all over my underwear

I was on the pill for seven years after that, and when I came off they were all wacky (I was in my mid-twenties). I started treating my PCOS with diet, exercise, and metformin, and I actually have fairly "regular" AF's now, and even when I don't they are never like those weeks of torture in my younger years.

If you come off the ring ,and have irregular cycles and aren't getting AF on your own, you can have an U/S to check for cysts, to check your lining, etc. That's actually my plan from my doc, should my cycles get screwy. I pay close attention to my body, and kind of know when things are out of whack, and am fortunate enough to have a doctor who listens to everything I have to say in the matter.

I hope some of this helps. I know I ramble a lot, hehe.

Smorgan128 · 08-26-2008, 01:25 PM

Of the other bc options given you, I HIGHLY suggest not doing a depo shot. I did that several years ago adn the side effects are not great at all. I have also read that depo is the worst for pcos women.

Amethyst8 · 08-26-2008, 05:06 PM

Thanks so much,

For the great advice. I think I will definitely be off of bcp and keep on eye on my AF and have my endo do blood work during these months so they can check my hormone levels and see. Hopefully my DH and my coworkers can handle me when I go wacky on them. Hehehe

Julia Gulia · 08-27-2008, 10:31 AM

Good luck!

I am actually less wacky on my own hormones, so my BF was happy about that, hehe. Now I just deal with a little more hair and breakouts, but I feel better in every other way.