Is it really PCOS

Bert · 06-28-2005, 08:41 PM

Hey Ladies, I am a newbie and I have a question for you ladies that have been experiencing the symptoms of PCOS for a while now. I want to know if you think I might have it. I feel that I do and my family doctor sent me to an obgyn to have it checked but the nurse that I saw (never saw or talked to an actual doctor) feels that it is either endometriosis or interstitial cystitis. Either way it involves very costly surgeries and testing to find out. My heart and my body tell me it is PCOS. I have had pain in my pelvic area, right and left side for 3 years now. Even though I am on the pill drs. have told me that it is probably ovulatory pain even though I have it all month long or bladder spasms. I went for my yearly exam (Pap and stuff for BC pills) and when the doctor did my internal it hurt when she pushed on my ovaries. I told her about the pain and she ordered an ultrasound. I had it done on May 27th and it showed that I had numerous small follicles around the periphery of each ovary. The largest on the right was 1.3 cm and the largest on the left was 1.0 cm in diameter. When I had the transvaginal ultrasound I thought I was going to cry it hurt so badly when she pressed on each ovary and back towards my rectum. This is when I was sent to an obgyn. I thought however all I have seen at their office is a nurse practioner. She laughed when I wrote polycystic ovaries on my paper that I filled out prior to going in to be seen. She won't even begin to hear of it. She without looking at me told me it was probably endometriosis and then she did a quick internal and a pregnancy test. I just had an ultrasound a week prior and I have been on the pill since I was 18, I am now 34 so I hardly think that was necessary. She ran the blood work and had me go to their person a their office for another ultrasound. The first was extremely thorough this one was quick and she told me I did have follicles on each and that they looked normal. I realize some follicles are normal after reading up on it but if the first lady that did a more thorough job was concerned and my family doctor was so am I. My symptoms are: follicles on each ovary, pelvic pain, obesity around my mid section especially lately, high blood pressure (since I was 19), high cholesterol, hairy in places most women aren't, thinning hair on my head (every time I run my fingers through it I come out with a handful), patches of dark skin under my arms, eyes, thighs, breasts, skin tags on my shoulders and neck, trouble sleeping, migraines, wicked wicked bad mood swings, depression, and lower back pain. Oh and when I get my period it is only noticeable when I wipe it barely makes it to the pad, it is only for maybe 2 days, and the worst part is it isn't blood red but rather brown looking. The nurse said that this was because of the pill and asked if I had normal ones before. I told her I don't remember that far back and I honestly don't. I did have two children with no difficulty the first time and the second one took a little longer but still less than 6 months to conceive.
My bloodwork came back showing most things within their normal limits but I am on the pill so that could of affected that and they did the bloodwork during the mid-luteal phase of my cyle which could also affect the results. My glucose was91, TSH was 1.666, testosterone was 39, LH 1.6, FSH was 2.1 Prolactin was 11.6, progesterone was <0.2 (which she admitted was low but since I'm not trying to get pregnant she wasn't concerned), my 17-OH progesterone was 38, my DHEA-Sulfate was 95, and my fasting insulin was 17.3. I thought anything over 10 was considered insulin resistant but she told me no anything over 30 is and I was fine. I don't know what to do next. I don't know if I should go off the pill for a while and have my numbers checked again and see if my period comes and is normal and red. I'm so lost and confused right now and going broke from all the testing. I work for the school system and I'm not working right now so I really don't have the money for all kinds of tests that might come up in a dead end. I do love my carbs that is all I crave, not even sweets. I prefer a bagel over a doughnut any day and wonder if I should just cut carbs and see what happens. I did do Atkins about 5 yrs ago and lost 75 pounds after my daughter was born. It is really hard for me though because I love carbs and always felt light headed and funny when I didn't eat many. I am desperate for your advice ladies and I am sooooooooooo sorry this is so long. I also love to talk. In case you couldn't tell.

CathyWood · 06-28-2005, 08:48 PM

Just wanted to Welcome you to SC. Glad you made it here.

Bert · 06-28-2005, 08:53 PM

Thank you I am so glad I found this site. The ladies here are so supportive and informative.

amshum · 06-29-2005, 01:13 AM

First a huge

to SoulCysters! So glad you found us!

Secondly, I think you sound at the very least Insulin Resistant, and probably PCOS too. I'm not a doctor nor expert by any means, but after looking here at the normal ranges... Well while it does say anything less then 30 on a fasting insulin test is "normal" but:

Quote:

The normal range here doesn't give all the information. A fasting insulin of 10-13 generally indicates some insulin resistance, and levels above 13 indicate greater insulin resistance.

Your symptoms listed sound pretty classic to me.

Perhaps you should get a 2nd opinion...

Bert · 06-29-2005, 11:58 AM

Thank you for the welcome and for your advice. I think I need to get a second opinion too. I might just go back to my family doctor with a copy of all my blood work and ultrasound information. They way it doesn't have to all be redone. I have extremely small veins and it takes forever for them to find one to get blood from. I've had it taken from my hands and upper arm and my forearm everywhere but in the middle where blood is normally taken. I have no good veins there for some reason. I am your typical butterfly patient. That is the worse part of all this testing they have done so far. Thanks again for the reply and I hope to talk with you again.

amshum · 06-29-2005, 01:27 PM

I feel your pain.. literally! I have the crappiest veins. I always go in telling them I'm a "bad stick" and they get the butterfly needle out first thing, sometimes even an extra suringe to pull suction... I'm not kidding. Definitely get your BW! Best wishes!!

mix · 06-29-2005, 01:39 PM

hi and welcome

i'm not really good at reading bloodwork results - i really think you should go back though if you feel something is wrong.

is there any way you can call your doctors office and ask if there is anyone 'pcos friendly' there? i don't think i'd want to see anyone who didn't know about the condition now - i just wouldn't even entertain the idea.

my advice is really to go back, take all your information with you and get someone else to look at it. i know there is a list of pcos docs somewhere here on this board.

good luck and keep us updated!

Bert · 06-29-2005, 01:55 PM

Thanks ladies for your reply. I really appreciate it. I'm so happy that people are listening to me. I know my husband is probably tired of me by now. He keeps telling me to go to a doctor since all I have seen at the obgyn office is a nurse practitioner. He tells me to tell them that I refuse to see her again the next time I go and that I demand to see a doctor since that is what I am paying for. My family doctor sent me there to see a specialist and all I see is a nurse. Easier said than done. I'm basically a social person but not a pushy person. I can't tell people off like that. I know for my health I should be polite but firm about seeing a doctor. I think I may call when I get off line and tell the office that I want a doctor to review my files. Someone PCOS friendly like Mix suggested. Thanks.

mix · 06-29-2005, 04:48 PM

good luck with the call. also, another idea, i don't know if you have other family near by or a good friend, but you could always take them along and get them to be pushy. might just give you a bit more courage. unfortunately, what i've found out with this 'syndrome' is that you have to fight for what you want.

take courage my friend and know that we are all with you