PCOS - what is your story?

[belmarks]

Hi all, I have PCOS and was just wondering how others out there handle their situation.

I was diagnosed at 15 and went through a few years of fertility treatments when I was in my mid to late 20's which finally resulted in a pregnancy where my son who is now 2 was conceived.

I am still having troubles with my cycle (silly me thought that possibly after having a baby that my cycle might turn itself right) so I am exploring alternative therapies in the hope that I can regain some sort of "normal" cycle and hopefully have another baby one day without having to go down the IVF road again.

I am currently experiencing

• irregular cycles
• excess hair growth
• irrational behaviour/thoughts
• moodiness
• bad skin
• sleepless nights (at times)

Its really hard to deal with all this at the prime of your life when all your friends are having these "normal lives" where if they decide they want another child they just go and do it.

It must be wonderful to know when you will be getting AF (not that her arrival is anything to celebrate) it would make life easy to plan.

I just wanted to know how other PCOS sufferers are coping and what their current list of symptoms might be.

Sometimes its just really great to talk to someone else who completely understands what you are going through on a daily basis with this syndrome....

xxoo

[Lynn]

Hi Belinda,

I have PCOS but unfortunately was not diagnosed until I failed to fall pg. I had bad skin and had irregular cycles when I was young but my doctor just put me on another pill which I now know just covered it up We were TTC for about a year which was really difficult because my cycles were really long and irregular so it was hard to determine O day. We evenutally seeked out a FS and he diagnosed me with PCOS. We went on Clomid and after 6 cycles we conceived Cooper. Heartbreakingly we lost Cooper at 37 weeks to a cord accident.

When we were ready to try again we went on Clomid. We tried for a couple of cycles with no luck. My FS then monitored me with u/s and bt and he said that my body was not responding to Clomid and I had to go on FSH injections/IUI. We were fortunate enough that I fell first go.

I too find it hard when it is nearly 4 years since we started TTC and still don't have a bub in our arms and people around me fall straight away. I thought that after we lost Cooper I would conceive ok on Clomid so it was so hard to hear that I had not responded. I guess my body is getting worse. I am afraid that if we try again that FSH/IUI will not work.

I think it is also hard that you lose all the romance out of TTC - it is like clockwork! But I guess at the end of the day it is about falling pg and having a healthy baby.

Some days it is hard to cope with the struggles of a long TTC journey. I get angry that not only has my body has failed me but it has also failed my DH and Cooper. My symptoms are bad skin, weight gain and irregular cycles. Have you tried Metformin?

I wish you all the best in getting a 'normal' cycle and being able to conceive natural.

[megs11]

Hi,
I have PCOS, I am lucky because I have two boys and had no problems falling pregnant with them, but I started at not quite 20. It wasn't till after my last child that I really had problems, slowly but surely my periods went haywire, now they come around every 4-5 months. I had an ectopic pregnancy last year with twins, one at the end of the tube and I M/C the other, I blame PCOS for it, don't know if it has anything to do with it, but I figure it is it's fault anyway.

I hate:

• The fact that I absently pull at the hair under my chin, gross
• My skin is revolting
• The belly stripe of hair, ewwww
• I have better sideburns than Elvis
• The feeling that my body has betrayed me
• I hate that it makes me feel so unfeminine

I must sound like a whinger and believe me I know how lucky I am to have my boys, but I hate the fact that it may not be my decision to have more children but that it is out of my control, my body has the final say. Well that was my big ARRRGGGGGGHH for the day!!! I wish the other ladies out there with this stupid SYNDROME (stupid word) who are TTC all the luck in the world

Meagan

[megs11]

Have you ever noticed that you can go five months with out a period and then whammo at the worst moment they arrive, like my wedding, had to take medication to stop the spotting, or I can guarantee you if I go on a holiday they will arrive with in 48 hours!!!!

Lynn I am thinking of you during this pregnancy, my little boy's middle name is Cooper, as it was my maiden name.

[belmarks]

Lynn - thank you for your response. It is pretty sad that Dr's still don't know how and when to diagnose PCOS isn't it!

It took us over 4 years of "really" trying before I had Coby and countless miscarriages etc, its very frustrating isn't it.

I am really sorry to hear about Cooper, I can only imagine how devastating that must have been for you.

I wish you all the best for this pregnancy and "hope" will be gorgeous, I just know it.

Megs, you are soooo right regarding the timing of periods for PCOS women, they just know how to come at the WORST time!!

I had to laugh when you wrote about pulling at the hair on your chin, I do the same, its awful huh!!

Feeling like your body has betrayed you is a fantastic way to put it, I feel that way everyday. Like I am defective.

I can't tell you how awful I felt when DH and I were really trying to have a baby and it was because of something I had wrong with me that we had to undergo countless operations, IVF and other fertility treatments, I felt so guilty that I couldn't give him a child naturally or easily, but he never kicked up a stink about it, he was great to me. I know he felt awful seeing me go through the IVF and the heartbreak everytime I had a negative result, it broke his heart because he now says that he NEVER wants to go through IVF again.

I got so down about it a few years back that I actually went to my FS and asked for a hysterectomy, to which he basically told me that I was being irrational etc and that he could control it with drugs, but I don't want to take drugs all my life. I take Metformin everyday - 3 times a day, and that's enough I think!!

Don't you just feel robbed of a normal existence sometimes!!

Surely there are things about this "syndrome" that we could laugh about to make our plight seem a little better....

[Lynn]

Thanks girls your words mean so much.

Meagan - I love the name Cooper (obviously ) It was so hard to come up with name but it was the only name that DH loved. I am so sorry to hear about the loss of your twins :hugs:
LOL! at pulling at your chin hair. I guess I can say that I am fortunate enough that I didn't get that lovely side effect - the excessive hair. So true about AF coming at the worst time! And you are always so unprepared because you have no idea of when it is coming. Friends used to say how lucky I was because AF would visit every 4-5 months. At the time I thought it was good too - not now!!!!! I would take every period now if I could get rid of PCOS and be able to conceive naturally.

Belinda - I am so sorry for your losses The TTC is so frustrating isn't it when it take so long. I am struggling with that emotions at the moment as next month it will be 4 years since we started. My DH asked me if we would ever be able to have children naturally - it broke my heart that I can't give him that. But he is very supportive and understands and I guess in way we make light fun of how we conceived this bub - what else can you do!! He sometimes says that this bub is mine and Diane's baby (she was the nurse that did the IUI procedure and DH wasn't even there!) And our birds and the bees story will be quite different too! The one thing that I lose when I am pg is my bad skin. Looks like I will have to be pg for the rest of my life!!!

[belmarks]

Me too on the bad skin thing, I was glowing and sooooo healthy when I was pregnant. The best I've felt ever....

I know what you mean about making light of the procedures and conception. We do it all the time. I think you've gotta be a strong person to go through IVF and other fertility treatments, and if you can't laugh at your situation from time to time, then you are struggling I think!!

I am going to see my acupuncturist tonight, hopefully she will get me ovulating - YAY!! I have been taking herbs for only about 2 months and seeing my acupuncturist for about 12 months, but I feel that they have already helped so much.

Lynn how does it feel to be half way? Have you had your 20 week scan? How was it? Did you find out what you're having?? Any names picked definitely yet??

Megs, how are you going with your Doula training? My acupuncturist told me she thinks I'd be a great Doula. She is one herself and she is so calm and encouraging etc, it certainly made me think whether it would be something I would be interested in or not..... How do you find it? Interesting??

[megs11]

Hi Ladies!!

Glad you can have a giggle about having Perfectly STUPID Ovaries Syndrome (my new name for PCOS), it is quite awful when you stroke your chin hair (reminds me of a seal pelt) you look like that sculpture "The Thinking Man" maybe it wasn't a man, it could have been a woman with POCS?!?!?!

You think you are in control and you are not, makes you realise you are not always the one directing the traffic!! As soon as I had my diagnosis, I wanted to go out and conceive just to prove that I still could (at that time I wasn't planning anymore children) it makes me angry that I am not the one making the decision.

You both have great courage to go through your individual journeys to motherhood, I am blessed with my boys, but after losing the "butterflies" as I sometimes call them, I am terrified to really want another baby!! I have been on no contraception for ages, and nothing, so I am very reluctant to make up my mind to definitely try again, I know how hard it would be to conceive if you are only ovulating maybe 2-3 times a year!!! So I am in that strange place of half of me desperately yearning for another baby, but I am also very aware that it may be a reaction to losing the butterflies, I just don't know!!! One day I think; no I am happy with my two, where would I put another one?? Other days I just crave that baby, so we will see.....

Belmarks - the doula course is interesting, I just am in love with the whole process!! Eggs/sperm, pregnancy, birth, etc etc... I am a nurse and quite factual about the body and how it works but these things to me are so mysterious and beautiful!! Don't get me started!!! I was there when my best friend had her baby, what an AWSOME experience!!!

I just listed on the Student Doula thread and I am hoping some lovely Mum will let me be a part of her birth!!! How great would that be?!?!?!?!?! Sorry I get a bit excited!!!

So, if you intend to move to Canberra any time soon (it is a great place to raise a family!!!! HINT HINT) look me up!!! I am free at the moment, a bargain!!! LOL!!!!

But I must admit I am a bit nervous!! What if there is noone out there who does want my services??? Oh well we will just wait and see!!

If you are interested you should look at doing the course, I think you would enjoy it!! Let me know what you think.

Tell me more about you acupuncture, very interesting!!

Lynn what are you calling your little bub? Boy or girl??

Meagan

[belmarks]

Hi Meagan, My sister in law lives in Canberra and just had her first bub, I wish I'd known about you prior to that, I could have recommended your services!!!

I know what you mean regarding the miracle of life, its amazing huh. When we went through the whole IVF thing, we learnt just what goes into making a baby, and its damn amazing anyone ever conceives knowing what you have to go through to get a bub...

You'll get someone who books you, then another then another then another, and before you know it you'll be so booked up you won't know what to do with yourself!!

The acupuncture is fantastic. My lady practices an ancient form of Japanese acupuncture and she specialises in women's issues. She is constantly going to Japan to update her training and attending all the seminars etc so she knows all there is to know on all women related issues.

It doesn't hurt, you don't even feel the needles. Sometimes she uses this stuff called Moxa, and its like a rolled up grain of rice that is heated by an incense stick and that goes onto your skin instead of needles. The heat generated from the Moxa goes right the way through, you can feel it, its a wonderful feeling.

Its a total body thing, not just a symptomatic approach, so it treats the root cause of things. It takes some time for things to start working, but I got results immediately, and I continue to get results so that's why I continue to go. Its relaxing, takes about an hour and its time out for me once a week or whenever she needs me to come in.

Honestly I would HIGHLY recommend it.

I also see a herbalist, which I am positive that is helping also. The two combined are giving me fantastic results, so I am pleased.

I can completely understand Meagan where you are coming from in regards to having another baby, its a hard decision. How old are your boys?

Belinda.

[megs11]

Hi Belinda,
NOW you tell me your SIL lives here!!! Never mind tell her she really needs another one RIGHT now!!! I need to stalk some pregnant women around the shopping center, convince them they need a Doula, who would reject a free offer?????

It sounds really interesting (acupuncture I mean), I have had a bit of reiki (is that how you spell it???) during a massage once, my tummy and legs all went hot and tingley, bizarre but not unpleasant. I am all for alternative therapy!! As I said I am a Nurse but medicine doesn't hold all the answers.

My boys are 10 and 5, growing up fast!!!

Yep the thought of being pregnant again is terrifying!! The last time, my eldest thought I was going to die!! I will never forget the look on his face, it was devastating!!!

So, do I set myself up for a fall???? Or am I just reacting to losing the last bubbies? I am to unsure right now, all I know is the instinct to have another one is getting stronger and stronger, although my DH is adamant there will be no more!!!

How are you feeling about it all? Are the treatments doing the job? How much difference have they made to your cycle?

Thanks for your vote of support with the Doula stuff, its all very exciting.

Meagan

[belmarks]

Hey Meagan,

yeah, sorry I didnt know you sooner, I could have referred my SIL to you... bummer, next time huh?

Yeah maybe you could ambush a few women in the area at local shops tee he he, instead of ambush make-over, it could be ambush doula!!

I've had reiki before, but I didn't think it did anything for me, it was a little bizarre for me...

Wow, 10 and 5, I bet that time has flown for you and you can't believe that you are saying 10 and 5...

I don't know what to suggest re the pregnancy. Its got to be your choice of course. However, if you are feeling definite that you would like more, then I guess that's what you need/want. I know I have friends who have said most definately "no more" after their last child, and they are adamant that they definitely don't want any more, so I guess you just know in yourself when you've finished...

I am feeling quite confident that we will have another one at least. We are both so against doing IVF again, and I think that if it got to that stage my DH would pull up stumps and say "no more". But Im not getting any younger, and time is slipping away for my fertility - not that its any great shakes now anyway tee he he.

I think the treatments are helping, I am at least getting a period, where as before I could go months and months and not have anything.

I find that I am more in tune with my body also, which helps me pin point different phases in my cycle, which is helpful.

Sometimes I feel like I am going through a very early menopause, do you ever feel that way? I get hot and cold and hairy and moody etc, I just feel so out of control with it all. I wish there were a pill that we could take to eliminate all the symptoms and regulate us, it would be so much simpler....

Im at day 20 or something in my cycle and still haven't ovulated... My typical time for O is around day 30ish, and I think that is just too late to produce a viable egg....

Ahh who knows, I never really know what the next day is going to bring, so I've just resigned myself to taking it as it comes...

Perhaps when I've definitely decided that I don't want any more children, I'll have a hysterectomy.

Is your DH supportive of your situation?

Can I ask a personal question? Feel free to tell me to pull my head in, just wondering how is your libido? Mine is soooooooo low, I could go without it forever really...and its sad because DH gets so antsy with me and I wanna do it for him, but just can't get into it most of the time...Its a relationship nightmare...I find that is the WORST part of PCOS...

[megs11]

Hi Belinda,
How are you? Well it certainly sound like all your treatments are working!! Did you combine IVF and alternative treatments last time?

Don't get me started about DH and trying for more children, he tells me now if it happens it happens, he doesn't want to actively pursue it but it would be ok if it did happen?!?!?!? Sounds like your hubby!! Who knows??????? I jsut can't get my head round it at the moment so I will just see what happens!!

I cant believe I have 10 and 5 year old either, time flies when you are having fun, the older my little one gets the broodier I become!! He is such a loving little thing always telling me he loves me and giving cuddles and kisses but he is getting more independent now, I miss him believing everything I said!!!

Yes, you are getting older and older!! Don't be silly!! How old are you? If a woman can have her first twins at 65 or what ever there is hope for us yet!!

Have you ovulated yet???

Yes, you can ask me all the personal questions you like!!! Great thing about being anonymous!!!!!! Yes I have been through what you are describing!! Quite happy to skip it for months if I had the option at times, and yes it is hard for our DH's but part of me says get over it really, can't turn it on and off like a tap!! Had a wild old time last year couple of months and ended up pregnant!! So that is hormones for you, went right off it again after the pregnancy loss and have started coming around again last few months, I can miss it for a couple of weeks and then be very loving everyday for a week, who knows?? Keeps him guessing!!

Does the acupuncture make any difference to your libido?

Meagan

[belmarks]

Hey Meagan, no I didn't combine the alternative with the IVF last time, I wish I did though, it might have all happened sooner... Oh well, it all worked out in the end.

My DH sounds just like yours, "if it happens it happens" aaaaarrrgghhhhhh - make a decision mate!! They are so frustrating aren't they!!

You're eldest sounds so beautiful, I hope my little man ends up like that, loving and kind - it is soo sweet!

Yeah, Im old man buahh haa haa! Im 32, and well aware that time is ticking, just because I can't fall at the drop of a hat and it took something like 4 years to conceive Coby so I know my time is ticking. I can almost hear the clock ticking in the background.

How old are you??

Nope to the libido question, acupuncture isn't helping, I never want it. I do it because I love my DH and I know he wants it, but I could happily go without...

I think about what I was like when I was younger, I mean I couldn't get enough of it, now I couldn't care less if I never had it again, weird huh???

Nope to the ovulation thing too, Im waiting till the 4th October to see if it happens then. I printed my lunar chart off the internet and Im waiting to see if its correct or not, apparently I've got a great chance of falling then? I figure it could be right, as this is the same time of year that I fell when I fell with Coby, so who knows, there could be something in it...Worth a try...

It must have been really hard for you losing your twins matey, how many weeks were you with them? Did you feel the ectopic pg? Did they remove your tube or do you still have it? Do you really think that PCOS had something to do with it? I have thought that before when I've had "chemical" pregnancies, that the PCOS was the culprit, considering that my hormones were all over the place etc...

[cessie]

I am spending the afternoon cruising this site, and happened upon you lovely ladies.
I will just quickly fill you in on me.
I was dx'd with endo at 24 had the laser etc , didnt help. I got pg in 99 lost that, got pg again , and lost that one, I was seeing my proffesor of endo when he suggested a ultrasound, where upon they found I also had pcos, but unlike not getting af , I got mine regularly every 28 days. I had a lap and laser ( golfballing on my ovaries) and that seemed to help, I got pg three months after the golfballing ( they drill laser holes in your ovary to release the pressure) but lost that one as well. A freind of mine who i met thru a frorum like this one when I was going thru all that, also had the golfballing done and got pg straight away and she had not had af for about ten years.
Thankfully I have gone on to have two very beautiful children and count my blessings every day that I have them in my life , when I thought there was never a chance.
Anyway love the comment on the chin hair, I have just plucked mine today!! I alos have a huge array of skin Tags , thankfully the acne has gone but I was 35 when that happened!!
good luck to you all

[megs11]

Hi,

Cessie, nice to 'meet' you!! I am glad you went on to have your beautiful babies!! Hmmm, drilling your ovaries sounds like Not fun. How long was your recovery? How long to fall pregnant after that?

Plucking chin hair?!?!?!?!?!?!? I wish!!!!!! I would be there for a month of Sunday's!!! Wax on Wax off, lip, jaw etc etc, full on production!!!! Must admit, no skin tags!! YET?!?!

Belinda - frustration!!!! My DH would be 6 feet under if he was here at the moment!!! How can they drive you crazy from QLD??? As a matter of fact who invented the mobile phone? DH wants his boat trailer registered so I am trying to move heaven and earth to get it done before the long weekend (i refuse to tow it, dear brother in law had volenteered) and he says to me today (after waiting for an hour at the rego office for a stupid permit to drive it!!!!!!!! Because he is lazy and let it run out of rego and now it needs a rego check!!!!!!!!!!) that why am I so worried, he doesn't care if we take it to the coast!!!! MY A@$% he doesn't!!! He would whinge the whole time, nice for some to be on holidays, while his poor sick wife works and runs around after a BOAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

GRRRRRRRRRRRRRRRRRRR!!!!!!!

Well, I feel better now, where were we??????

I must (calmly) admit that I find 'if it happens it happens' very frustrating!! What do you do??

Oh you are THAT old??? I can see old father time running down the street after you!! I am 30, it is horrible that women have to think in terms of reproductive age, men can still father in their 90's!! EWWWWW!!

How long have you had the low libido? Have you mentioned it to your practitioner? Have they tried to help? I dont think it is weird, if you are trying to have another baby, even if you are trying to let it not bother you, I think it would be in the back of your mind, could it become a little routine, not spontaneous? Hows the ovulating coming?? Fingers crossed!!

Losing the twins was really hard!! I am sad to say that I didn't really realise that I was pregnant, I went away with some friends and before I went I had thrush (that is not fun) and I had diflucan tablet to treat it, at the time I thought I wonder if I should check?? But I had checked so often and it was always negative so I thought I was being stupid, so I went away and I remember one morning my arm brushing by my breast and it being painful (again this is strange, never had sore boobs in pregnancy) and it crossed my mind again and again dismissed it, couple of days later I began to spot, then got the grossest heaviest painful bleeding, assumed it was another weird AF.

Got back and a couple of weeks later started feeling bloated, thought I was constipated, sharp little pains occasionally on my left side, promised myself I would go to doctor that week, it was on and off for a couple of weeks.

Picked up my little one from school, got shocking pain really low on my left side, and back pain, worse than child birth, a friend rushed me to hospital (DH was away with work), being a nurse I suspected by then it may have been an ectopic preg, I Googled it before I left(nurses like to diagnose themselves), heaps of morphine later, they told me I was pregnant but low hormone levels HcG, even though I sort of suspected, it shocked the hell out of me. Had the scan next day, it seemed the baby was right at the end of the tube and had ruptured out of the end of the tube and into my pelvic cavity, bit of internal bleeding, accounted for all the pain. Luckily I had conservative treatment and kept my tube.

So, they think I had twins, M/C one uterine preg and the other ectopic, as to how far I was?? They couldn't be sure, the hormone levels can't be used to determine how far you are, they guestimated between 7-10 weeks, because my last AF was months before that!!

So that is my story, I was a bit mad that I never got to get excited about being pregnant, I felt guilty for taking Diflucan but apparently that didn't do it. Most of the time I am okay, other times in those brief moments it is all still very raw, but I have always gone with what I felt and not tried to bottle it up to much, I acknowledge my 'butterflies' because if things were different they would have been my babies here. Do you know what I mean?

I dont know that PCOS was directly related to it, but why have a stupid disorder if you cant blame it for everything, I have read that it can lead to higher miscarriage rate (I think).

Well that was a VERY long reply and you must be nearly asleep now!!!!

Meagan

PS Can you explain Chemical pregnancies? I think I have a rough idea. How many times have you been thru this?

[belmarks]

hey cessie, thanks for dropping in. I sorta started this thread as a supportive place for PCOS people to come and chat, so hopefully you can join us on a regular basis... Sounds like you've had a rough trot but thankfully you've come out of it with a sense of humour...

Hi Lynn and Meagan, where are you girls???

[megs11]

Hi Belinda,
where was I?? Writing you the longest reply EVER!!!!! Are you bored yet???

[cessie]

hey Meagan,
Yep the drilling wasnt much fun, and it did take longer to get over than just a "plain" lap. It was day surgery and it took me a good ten days before I could stand straight again!! Please forgive my spelling, my typing skills suck! Anyweay I finally got pg with ds about 10 months ater the drilling, but my crap continued and I had Antiphospholipid antibodies ( because I needed something else wrong with me ! ;0), and I had to have a heparin ijection every day of my pg's and take asprin as well, but they can out safe and healthy, so it was all worth it.

Thaks Belinda I used to be in a site but it was a U S one ,which I met some fantastic people, but they have all disappeared, and I have only just got back on line again after a virus killed our computer, so hoping I can get to "meet "some people to chitter chatter to who have been thru stuff like me. Ha and to think I always thought I was healthy!!
Meagan I trhink I "talked"" to you in the Doula threads, be aware I will ask lots of Doula ?'s !!