PCOS and then some???

[bduckie_1972@verizon.net]

My Doc. has said for a while she believed I had PCOS, so I went on a low carb. diet (no processed carbs. no potatoes, pasta or rice and cut my sugar to almost none. She put me on Metformion , Celexa, Evening Primrose oil and Salmon Oil too. But recently she has decided to send me to an endocrinologist because she said that after losing 65ldsand doing all we had done the last 2 years I ought to be better not worse. It is like after having my daughter and getting a little reprieve everything came back with vengeance. I exsanguinate with my cycle(that is every 15 days), cramps (that double me over), Sweat like a race horse(smell like I ran a marathon even though I wear men’s sports stick), I have a dark brown collar around my neck and a big brown patch on my chest and hair where it ain't suppose to be. Migraines with Lights and floaters, my face is oily (ACNE) but the rest of my skin is dry and itchy. Oh the Mood swings too(like a clock pendulum) my Joints ache, my feet are puffy it never ends. So now Doctor says she suspects Cushing’s as well as PCOS. Can anyone enlighten me I am having a hard time finding any correlation and now even though Doc does not doubt the PCOS I am starting to wonder because I see nothing like this and no-one else seems to have the same symptoms as me. And why would it get worse after I had a Baby. It makes no sense. Maybe I ought not complain, I see the endocrinologist Next week, but Doctors in the past have left me without answers. It just seems like too much is going on at once. Maybe someone can bring clarity to this for me. I can't make heads or tails anymore.

[kat2000catwoman]

Welcome!!
Glad you found us!!
I know how it can be frustrating it can be. There's tons of information on this site, from diet info, to research, and more.. search the site. My favorite information is on the "research 4PCOS" forum. Near the top of that forum is a sticky- a thread titled " required reading". I really like how it goes over all the different ways that PCOS affects each one of us cysters...and we all have it alittle different, but we do have it... it does cover the dark skin patches you described and etc... it's lengthy..but worth the read. it's written by an endo Dr. That'll help you and family understand the complexity of PCOS. I believe that a well educated patient makes a good patient.. that way, you'll have an idea of what is going on, and things make better sense and you'll then be more comfortable and confident with your path of treatment. The Endo Dr. is a good thing...
Cushings is a problem with your adrenal glands- they sit on top of your kidneys- basically, they produce adrenaline.. if they produce too much... you get cushings.. symptoms of cushings are: fatigue, weakness, gain weight, amenorrhea(no periods), swelling, excess hair, diabetes, skin discoloration etc... some people have a 'moon shaped' face with cushings and sometimes their shoulders tend to accumulate fat(like between the shoulder blades & up to the neck area) This may explain why your PCOS symptoms are worse. I really encourage you to read the article I mentioned.
Feel free to post any questions.. don't get upset if you don't get an answer soon.. Someone will eventually.. My work schedule prevents me from getting on for sometimes up to 4-5 days!!
Search the site. Glad to have you here. Keep your chin up and hang in there.. don't forget to up date us after your Dr. appointment!

[bduckie_1972@verizon.net]

Thanks for the reads; I am seeing endocrinologist tomorrow in the afternoon. Am a bit nervy, so many times the symptoms get ignored. I actually had a doctor in my early 20's tell me” They are just normal female problems learn to live with it! " Someone else told me " Well you should probably have a hysterectomy and get it over with”. If that solved everything that may be an option, except I am not ready to be done with Babies. Hard to be done with 1 when your dream has always been to have a houseful of them. Thanks for the support here it is nice to know I am not the only one dealing with this.

[SuzanneStar]

Hello and a warm welcome to SC! You have come to the right place

[kat2000catwoman]

a hysterectomy isn't the answer #1. It should be the last possible answer. . It would be like saying shave your hair off, because you're having a bad hair day. So... How was your Dr. appointment? Yeah... I've been told simular things by Dr.s. about having "to live with it".. that's when I tell myself that's the last I see him and he has to "live with it". If the Dr. is truly interested in helping you, he will at least give you something more than "live with it".
As you're finding out.. we have to be our own advocates in this..

[bduckie_1972@verizon.net]

Very interesting appointment actually she verified the PCOS diagnosis by my nurse practitioner (I prefer her to a real doc she listens to me and believes I know myself.) Doctor also said my testosterone levels were quite elevated even for PCOS.
But she also is looking into a pituitary tumor and another thing called Lactinoma? They sound frightening to me she also mentioned that my adrenal gland could be overactive but that would not be inconsistent with PCOS. She took away the Birth control pills as well as the Celexa and the Hydrochlorothiazide so that leaves me with Metformin, vicodin(for migrains that are becoming more frequent and lasting longer) and relafin(I only use for cramps so 7-10 days of the month depending on how many periods I get then I could use it twice as much) then the EPO and Fish oils. So lets see if my hands puff up because the Hydrochlorothiazide was for that. The birth control pills I was fine with her taking they were making me sicker then a dog.
Doctor drew up a bunch of blood and told me to make sure to check my messages because if they did not indicate what she was looking for she would want more blood. I like her attitude though she is not just saying that because it isn’t this or this it must be this. I like the planning to look for this but lets rule out all these factors over here approach. Did not have much to help with the underarm issue except to say it is a symptom of too much Testosterone. I have tried it all I tried the baking soda, baby powder I have tried 8 different deodorants in the last 6 months nothing works. But all in good time I guess.
So Over all I was impressed and happy with her. She has F.A.C.E. behind her M.D. if that means anything to anyone.

[kat2000catwoman]

Not sure what F.A.C.E. stands for...
F.A.C.D. stands for - Fellow of the American College of Dentists
maybe it means Fellow of the American College of Endocrinologists ?
Glad that your visit went well. Keep us posted!

[southernchic24]

Welcome to SoulCysters. Glad you found us. Good Luck to you!

[bduckie_1972@verizon.net]

So the endocrinologist calls and (thank goodness) no tumors on my pituitary no Cushing’s she says all indicators point to a simply bad case of PCOS(as if it is that simple). She upped my Metformin (doubled it) but truly gave me no indications on how to deal with all the symptoms in the interim! What do I do about the sweating like a racehorse and all the other garbage PCOS has evidentially perpetrated in my life, I must be able to function on a daily basis I have an active 2 year old and a high maintenance husband as well as a JOB! OMG I am sorry if I sound over the top but I expected her to be more helpful I hate answers that are not really answers. I have no idea what to do now, I feel guilty for being angry, I ought to be happy I don’t have something worse but the aching in my fingers and joints today kept me down ( I sat with a heating pad in my lap so the heat warmed my knees and I could put my hands on it to relieve the aching)then to get a call like that from a sub specialist with no answers sent me over the edge.