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I was told by my family doctor that I have polycystic ovarian syndrome and to on birth control pills in 2001 and in 2007 I was told I have WD. the doctors don't really have the answer to whether i have polycystic ovarian syndrome or WD that is making me have no period on my own. Does anyone have anything to share that might help?
polycystic ovarian syndrome - is a health problem that can affect a woman's menstrual cycle, ability to have children, hormones, heart, blood vessels, and appearance. With PCOS, women typically have:
high levels of androgens (AN-druh-junz). These are sometimes called male hormones, although females also make them.
missed or irregular periods
many small cysts (sists) in their ovaries. Cysts are fluid-filled sacs.
hi mic,
my sister has had wd for 21years, and i'm not to sure about the previous years but i do know that since she has had severe neuro problems(18 months) she has not had a period. she also has had 2 miscarriages prior to this.
hope this gives you a little bit of an insight.don't know anything about PCOS but can't a gynaecologist give you a test that can tell for sure?
take care
Melinda x
hi mic
cath had 1 m/carriage then had a son, who is now 9, then lost twins about 5 years later. she was also on penicillimin, now on trientine, don't know if being on pen had anything to do with it. have you spoken to your wd doctor about this?
hope this helps
Melinda x
sorry mic didn't realise that last question was from someone else x
Hi Mic,
I was diagnosed with WD in January 2007 and a few months later I saw an Endocrinologist who diagnosed me with PCOS. I never really had any symptoms of PCOS while growing up or in early adult hood. The only real concern I had prior to being diangosed with WD was that my menstrual cycles stopped. I later found out that was probably a "symptom" of WD.
My Endocrinologist basically said that because my liver wasn't functioning the way it was supposed to, it caused me to have insulin resistance, which then lead to the PCOS. All of these things made sense, because prior to my diagnosis I had gained a significant amount of weight and it couldn't be explained. After finding out about how the liver controls how the body stores/uses insulin, etc...and because my liver wasn't working the way it should, it all made sense! Our bodies are amazing and if something is just slightly off, it can throw many things out of whack! I sometimes question whether or not I really do have PCOS though because once my liver and labs have been normalizing, I've been seeing improvements. Improvements with my cycles, and a couple of months ago, I actually got pregnant, but unfortunately it ended in miscarriage. I've lost a great amount of weight (which I was told would be SO hard...and it wasnt!), since my labs and everything have been normalizing. (about 24 pounds) And I'm feeling the best that I've felt in about 2 1/2 years!
WD can cause you to not have menstrual cycles or have irregular ones. If you have a good control on your lab levels, then I think you should get menstrual cycles. However, PCOS can also cause irregular cycles, so a lot of times if a doctor isn't too familiar with one condition (most likely the WD) they will try to find another "answer/diagnosis" to make your symptoms make sense.
With WD though, if you weren't diagnosed until 2007 and in 2001 you got the PCOS diagnosis, maybe your doctor was just trying to figure out something that "fit" your symptoms (if you had irregular cycles, etc...).
Maybe a second opinion now wouldn't be a bad idea. Since PCOS has to do with hormone levels. Your doctor should check a variety of different hormone levels in order to properly diagnose the PCOS. I believe they are: fasting glucose and insulin, testosterone, LH, and FSH. They can also do a pelvic ultrasound to determine if you have multiple cysts in your ovaries, which is often indicative of PCOS.
I hope this is helpful and you get the answers that you're looking for.
Best of luck!
~Melissa
hi ajit231980(do you have a name?),
sorry it has taken so long to get back to you ,have had a terrible couple of weeks.
Cath was on penicillimin before she got pregnant but she stopped it while she was pregnant, which i do not recommend.her son, Ben, has been checked for wd and at this stage has no signs of it but he will be checked every couple of years.
hope this helps.
Melinda x
first...thanx a lot for ur feedback....actually i m finding a way so that she could be pregnant...she has not got regular periods.....i mean..if someone has got similar case...then we can have a ray of hope....actually we r afraid of getting her pregnant first...then its consequenses......n u said ,...terrible time for ur sis..can u explain a bit......i m frm India and my name is ajit.....and for whom i m talking abt is my friend.....and i have learnt abt WD from internet only...an talked to Ds in India a couple of time abt her case.....
but the only ray of hope ....is to hear abt another similar case......resulting in successful pregnancy.
thanx again
A good reproductive endrocrinologist will be able to help you control the PCOS and help you conceive. MANY women have PCOS and treated frequently.
This is very interesting, I am curious if it's the WD or treatment that affects this? I've never missed or had irregular periods with WD, though I've always been treated with Zinc Gluconate not the chemical meds, even when the WD was really bad and newly diagnosed periods we're still very regular and extremely present.
I've found a lot of "hard to explain or diagnose" things have been attributed to my WD over the years. It seems to be used as an umbrella sometimes, for all that's not right with me instead of searching for other causes.
coppa keepa
i totally understand what u are talking about. My writing over time has gotten messer, i think it because of WD. Everytime someone makes a comment about my writting i wish they understand. I am chinese so my family use chopsticks to eat, but now that my right hand don't work as good as it use to i often have difficilties picking with food, so i have been using the fork and spoon more. WD has affect my tougue movement so i don't talk clearly - i hate it when people say they can;t understand me or tell me to speak up. My tougue problem has also affect my chewing, during my worst times i was living on shakes, now it's difficult for me to chew my food with my mouth close- the other day some ask me do u notice you chew with ur mouth open ( i did know what to say, i felt like hiding). My head wobbles a lot, i have heard comments on that too. Everytime i heard comments about my shortcoming there's a little ache in my heart.
That's awful for you , is it at school that this is happening, or just when you are out anywhere?
I was diagnosed as a teenager in 1990 (no internet) and it was very isolating as no-one had heard of the disease at all then and even doctors weren't exactly sure what was attributed to WD or what was just me having other problems. All of my report cards had said my hand-writing was terrible (this in the 80's was before computers so it was considered a BIG issue at the time and made me feel embarrassed that I couldn't seem to improve it) I also saw myself getting dumber in school but everyone else put it down to laziness and not working hard enough. When I got my first job at 18 I had to go eat my lunch away from the others as it was blended paste coz I couldn't chew properly at that time and I didn't want them to see. When trying to drink my throat swallows sometimes with the liquid still in my mouth which was alarming when it happened in front of people, but I'm used to it now and no-one notices b/c I don't get a scared look on my face heheh.
So I know a bit how you are feeling. I still remember how isolating it was. I eventually got sick of explaining to people that I had WD and being looked at like a zoo exhibit and asked a million questions. So when it came up I just began to say "I have WD, it's like Parkinsons Disease, but rarer". (If anyone is rude or teases you after that, they do not deserve your company. You don't have to try and fit in with people that are that rude, you have enough to deal with)
Usually mentioning "parkinsons" as similar gave people a sense of it, as they'd heard of Parkinson's, if they're full of a million questions I can now tell them to go and google it if they're that interested and that I'm kind of tired of having to explain all the details of it after 18 years LOL. Back then I had to try and answer them which was annoying after a while.
It gets easier it really does, at first you feel different and stupid for not being as good at things as you used to, but after a while you get to accepting your new self, the meds start working, the symptoms become under control, and then you realise OTHER people we're stupid for being so insensitive to you LOL.
Teenagers in school and college an be cruel at the best of times, but these are not the people you will be spending the rest of your life with, so don't worry.
Hang in there!
Mic,
Hang in there... I was the clown when I was in high school. Everyone would laugh at me as my WD symptoms progress worst and worst. Everything little thing I do, I can seem to just mess it up perfectly. Now, I am a lot better since on treatment but there is something still can't seem to be improved. Like you I am chinese for a while I had to use fork and spoon as well. Now i can used chopstick to eat with no problem. However, its the soup in the bowl that i still have problem with. My left hand would be automatic change its position that leads to the spill everywhere. It doesn't matter wheater its hot or cold soup. There was a period of time where i find myself hard to chew my food with my mouth close, too. My hand writing at my high school year was totally unreadable. I look back now on some of my old high school notes I couldn't understand a word of what I wrote. I am suprise my teachers never ask me to type my homework instead. My spelling is a total nightmare by the way still up until this day. I don't know wheater my spelling has to do with no growing up in USA or its the WD. I know my chinese isn't good either. As far as my speech goes, I find out that the other party has to be tentative and willing to listen to what you have to say. Otherwise, I can be repeating 50 times at a super loud voice and super slow rate that person will still ask you what? what did you say? so ignore those people. They aren't worth your time to talk to. repeat 3 times for those people only. I have friends that understood me perfectly of course there are times that I have to repeat myself to those friends. Every now and then I will have one of those out of the blue depression that leads me thinking of suicide. I did attempt with it in the past never suceed as you can see. As treatment goes on you should see improvement. Hope this will make you feel better knowing that you aren't alone.
coppa,
haha yeah the time when I first got diagonsed with WD internet information wasn't as avaible as nowadays. I remember getting online to search for it, couldn't find much. One of my mom's friend went to the library printed out few pages from the book about WD for me.
coppa and Mcveggie thank you for sharing ur stories, it's nice to know that there's people out there that us going through with same problems as me.
Hi McVeggie,
Yes same for me, my aunt was a nurse and she photocopied the few pages she found in a medical journal about it... that was a scary read... it was just a list of bad symptoms to look for, for doctors, back then there was very little information about people recovering enough to get on and have good lives. Which we now know is definitely possible.
:-)
No prob Mic, it is difficult and unfair but you can come through that part.
anytime mic right now i am just in search for a man to have a baby with lol seems like that is just purely impossible with me. Guys just seem to not wanting to stick around with me. I am getting worry as I am approaching my high risk child bearing age. I guess I will just have to give up the dream of having my own child.
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