Risk and Avoidance of PCOS/Endo

Hi,

I hope you ladies don't mind me jumping on here to pick your brains.

My half sister has Hashimoto's hypothyroidism, PCOS, endometriosis, fibroids and uterine polyps. I know from brief reading/my GP mentioning it that having a close female relative with these things increases my risk (quite dramatically i think) of also suffering from them. To be honest (this sounds awful) i wasn't really worried as her health and lifestyle are VERY different to mine, and i guess i stupidly assumed i'd avoid it all because of that.

Well after DD was born i was diagnosed with Hashimoto's. My GP said there's a strong genetic predisposition in my family, and that it wasn't a surprise. Well i was quite surprised! I thought because i was healthier (my sister is very inactive, morbidly obese and eats badly) i'd not suffer but this was my wake-up call.

So, i'm posting to ask, does anyone know, is there anything i can do to help reduce my risk of endo/PCOS? Particular foods to eat/avoid, supplements, i don't know, ANYTHING? I read in my Mirena IUS info that it's used by some doctors to help control endo between pregnancies because it stops the uterine lining growing, so that's one thing i'm already "doing" i guess. I know most of you ladies are already suffering :( I just figured, you're an informed bunch, so if anyone would know, you would.

Thanks.

Bec

Bec, PCOS is due to insulin resistance - one of the ways to treat it is with a low-carb, low-GI diet. I guess it's all about not causing blood sugars to spike and have your body flood itself with insulin... if you can keep your body's resistance to insulin down, I imagine you've got a reduced chance of developing PCOS.

Only thing that comes to mind straight away - I've read something about different natural supplements used to treat PCOS, but I've got a horrible feeling it was in a book that I'd borrowed from a friend and have since returned.

BW

Hi Bec,
Please bear with me as I am new to all this :)
Where I can put my 2 cents on is. Where you say " My GP said there's a strong genetic predisposition in my family " I can comment there.
Most of the girls in my family have been struck by the endometriosis stick. Yep Hee for us. I am from a family with 6 women and 4 of us have been diagnosed with severe endometriosis. The oldest sister has it and my 2 older sisters and myself . I am the youngest in the family. Also, the youngest of twins. We both have it.
The oldest daughter has had 2 children. Myself and the other 2 sisters are of age to prepare for or start conception.
I don't know whether endometriosis has a pick and choose attitude. Because the other 2 sisters who don't seem to have it. Have both given birth to healthy children. And are fine. As I know it is not just about bearing children. They seem to fine during their periods etc. One of them has 5 children.
I was told by a surgeon, that it is stronger if it stems from your mothers side. Obviously your dad is not going to have it ha ha. But if his mother had it. My grandmother (on mothers side) and mother had problems with their cycles.
It just seems it's your luck or bad luck you get it. Your chances are higher , if it is a trait that is in the family.
So i suppose you deal with what you get when you get it. The thing is, is that we support each other through our rough times (with the endometriosis). We all know what each other is going through.
Maybe talk to your sister and see how she is dealing with it. Nothing better than close to home support. Oh, and of course the support/advice from this forum as you know. It's is awesome.

Hope this helps. Sorry for the big rant.

WA_Endo

Thanks BW, i was afraid someone would say that about PCOS - i'm a recovering sugar addict. I suspect my thryroid was slow for a long time before it was diagnosed (i was kind of chunkier/tired then too) and i got into the bad habit of eating sugar for the "lift". I try to avoid so much refined sugar now but i LOVE my carbs it's true.... I need to do some research there.

Thanks WA_Endo, my sister is actually my half-sister, my mother's other daughter, so we're ONLY related through my mum. As i said, as such i never really thought i would suffer her problems until i got Hashimoto's, then i suddenly realised that my healthy lifestyle could only do so much to counteract genetics.

My Hashimoto's seems to hae come on when my sister's did - in our early-mid twenties (she's 16 years my senior), and i guess one ray of hope for me is that she's had PCOS and endo since she was still in puberty, so perhaps i have escaped them? I just think i'm lucky to know my chances are higher and should do something more than wait and see, if you get me. I already have a daughter, but her father and i are no longer together and i guess i want to be able to protect my fertility in case it is another decade before DP wants to start a family.

Thanks again for your advice, i knew you lot would know!

Bx

Hi again Bec,
Sorry I seem to be on a roll.

With regards to the endometriosis treatment.

I personally have found. I felt my best after surgery. I am sereve endometriosis as I said before.I have had 2 laparotomies. Which are more invasive than laparoscopies. Because (a)of the severity of my endometriosis and (b) Recovery time is longer - approx 6 weeks (depending on patient) and (c) they have to do a caesarian cut to investigate rather than investigate through your belly button.

I had a hard time recovering from the first op. For some reason??, I had lost 3ltr of bleed in surgery?? They never fully explained and I didn't ask.I wasn't in any state to argue rights and wrongs.I had to sign for a blood transfusion, the hospitals explaination was, if taken in pill form it was going to take too long to get back into my system. I was very fatigued and had lost a LOT of weight. Anorexic looking. The only thing I had was pain killers to help with the pain at home.

After about 6 months (max) the endometriosis returned. I was then on zoldex injections for 3 months. To Prep for the 2nd laparotomy. It is administered by injection. Zoldex does effect your bone density. Which chances are not always reversible.It's main purpose is to stop you ovulating. And shut down your cycle. So the endometriosis strinks. It had put me into a menapausal state on the last month. And I was starting to get hot flushes. I had moods swings. Which are all side effects for the drug. It was the mood swings I had the most trouble with. For me and my man. Who I love dearly as we got through it :) I came away after the second op, with no live endometriosis. So it served it's purpose. But did take a toll. There is a thread on Zoladex. Which will be helpful.

My sisters have been on danazol. Which have had indivdual affects on each sister. Not 100% sure on danazol. As I never took it. But I believe it serves the same purpose as zoladex.

Both operations were done within 12 months. This was done 7 years ago.

Since the last op. I have recieved no medication and deal with the pain through general, over the counter pain killers. I have been okay with pain management so far until now. I use to be able to take a couple of ibupofen capsule (nurofen) and a hot water bottle. Spend a day in bed and be right. But of late, I have to take double the doseage of capsules in a shorter period of time. And more time in bed.
My symptoms have come back stronger in the last 2 months. I am told by my gyno I have to go back in for surgery again :( I don't want surgery to always be the answer :( No one wants more surgery. But if it has to be done.

What has helped me. Like yourself a healthy lifestyle and excerise. A high fibre diet for me. As I get heavily conspitated just before my period. I plan to see a dietitian.

I am also at the stage, where I am wanting to know better ways to manage the pain. So I am with you on your quest to know more.

All the best

WA_Endo

Hello

Just a quick note on PCOS, I always had normal regular periods, had my first child at 20, next at 24 no problems. Periods a bit strange here and there over the years but the last 2 years they have gone stupid!!! Got the horrible hairy scary face ewwwww :p etc. Diagnosed with PCOS at age 28 or 29 cant remember exactly when, I am 30 now.

Now I get a period every five months, pain in the bum, so I think my point is, it can start later in life, like I said I was clock work for years now, tic toc who knows???? I did fall pregnant last year but lost the babies -- twins one ectopic around the tube and one uterine M/C. The body is a strange thing! Just stay in tune with your body and any changes mention to your doctor.:)

Take care.

Hi just a quick one re PCOS....

Studies have been done which suggest that lifestyle factors can contribute to some people getting PCOS symptoms. Because its a "syndrome" and not a disease, it is not easily treated, as every patient presents with different symptoms.

I have read recently that PCOS is largely due to an estrogen dominance and there are ways to avoid contributing to this factor. It has been proven that plastics can mimic estrogen in our bodies and therefore throw things out of wack, so avoid drinking out of plastic bottles (you know the ones I mean) and generally avoiding eating/drinking out of plastic.

The main points of PCOS are

*estrogen dominance
*progesterone deficiency
*insulin resistance
*hypothyroidism (either detectible or sub-clinical)
*adrenal hypersensitivity

So you can see its a VERY unhealthy syndrome to have, as it targets the majority of the bodily functions both directly and indirectly.

The only things you can do is ensure you exercise regularly, eat healthy foods from all food groups, and make sure you get tested if you are tired/missing periods/putting on weight easily/getting hairy etc etc etc

It can also play havoc with cholesterol, so if anyone is reading this with PCOS and you haven't had your cholesterol checked, you really should have it tested.

Hope this helps and any other information you need, please let me know and I hope I can help

Hi there Bec.
I guess it is really important fo ryou to just concentrate on living the healthy life you have and try not to focus too much on what might happen. But taking hte proactive approach will definately help you reduce risk, definately.
I have Endo. Had it burnt off very early on 8-9 years ago. Didn't know the true effect of havin git gone for a while as i was recovering form the laporotomy and cyct removal. PCOS and Endo are quite strongly linked but like the others girls have said we all seem to have different symptoms and severity.
I agree with Bellmarks, and the Estrogen, Insulin and Progesterone links. There seems to be an absense or lack of these diseases and syndromes in Countries where woman are pregnant more and therefore have fewer cycles subject to estrogen and more pregnancies and progesterone.
I do now that they have linked Endo to having similar characteristics to Auto Immune diseases where the body is attacking itself to some extent.
Some of the things we need to avoid...with not a lot of solid proof, just research and gut instinct that unrefined and unadulterated is always best....are
High sugar diets, i like you do have a love for sugar.
We need to eat regualrly allowing our insulin to stay more balanced.(every 2 hours min)

And i try to avoid the estrogen enhancing foods and substances.
Some of these are
-Soya Products
-Dioxins..produced in the manufacturing and burning of plastics...so keep plastic out of the microwave, actually keep away from the microwave itself! No cling film( Glad wrap for the aussies)
-Fragrances have an estrogen effect on the body, so get rid of heavily perfumed detergents and airfreshners etc etc
A really good book to read is called...Hormone Disrupters. If you need the author let me know and i can get it for you.
As for pain relief, i don't cope too well. I try to keep as natural as possible but lately i have gone back to using Naprogesic (got a huge supply when last home) to just help. It is a bit taxing dealing wiht that along side not falling pregnant. But usually it is time off and hot water bottles, baths.

Mum got me onto a Chinese Herb that i am about to try which has had amazing results for some woman with both conditions. It is called Peony. I have yet to try it. Othere chinese meds that have been good are Poria and Licorice and Cinnamon. I have not reacted well to Cramp bark and Wild Yam. A bit halucinogenic for me,,was not pleasant.

Hope this helps. There are also a lot of emotion links to these conditions. Excercise is so important too as good circulation helps your body heal itself better and faster.

Sorry Bec, i do go on. By the way the Moon cup is goign really well. Thanks
Hippy Mum

I was diagnosed with PCOS whilst TTCing DS because my cycle completely stopped. I had always had irregular periods, not terribly irregular, but enough to be a pain. I did have an ultrasound many years ago which showed some cysts on the ovaries.

Anyway, the Gyno said that my weightgain during my late 20's could have triggered the 'syndrome' side of it. Which resulted in me having no cycle at all for nearly a year until I went onto Metformin to combat the insulin resistance. Mind you, my weight gain wasn't much at all, and I certainly wasn't overweight! But apparently body fat etc contribute to the whole hormone balance thing. So I guess my only piece of advice would be to keep within the healthy weight range, or healthy body fat range - while you can.. apparently one thing with the weight issues of PCOS is that it's really hard to lose weight.

Perhaps my uber-regular periods during breastfeeding were because I dropped down below my pre-baby weight! Hadn't thought about it before actually. I kinda thought perhaps the pg and feeding had balanced out my hormones.. but perhaps the b/fing dropping my weight back down below pre-baby weight did the trick! I'll probably never know :)

There are herbal supplements and things to try and regulate your hormones, I remember taking vitex a long time ago to regulate my periods and it did improve things.. but I'm useless at taking tablets LOL so it didn't last long. Perhaps seeing a naturopath or herbalist could be helpful?

:

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i guess one ray of hope for me is that she's had PCOS and endo since she was still in puberty, so perhaps i have escaped them?

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Sorry Hoobley, it doesn't really work that way, at least with Endo. I'd never had any problems, perfect cycles, no problems conceiving (fell prg twice, once without trying, the second time on the first attempt) but between my first and second pregnancies I developed a cyst on my ovary which we later discovered was an endometrioma. I still fell prg while I had the cyst but sadly we lost our baby. We will never really know what impact the cyst had on my ovulation and therefore that pregnancy.

Technically, I do not have endometriosis - the cyst was single site endo, two laps have shown that it is no where else in my body. Very uncommon apparently.

My cyst developed after DD was born and probably in the second six months of breastfeeding (I b/fed her till 16 months) so I don't know if it was the hormonal changes in my body that triggered it??

Anyway, it did an awful lot of damage and my once 'perfect' fertility is no longer :(

I've been told that it can happen to anyone at any time so really none of us are really safe from it I guess.

I am really worried about developing another cyst during the time that I'm b'feeding this baby because obviously during that time I can't use the general treatment which is normally some form of birth control to keep it at bay. Something for me to discuss with my FS I guess.