Poly Cystic Ovary Syndrome

[SirBoobAlot]

I was diagnosed six weeks ago. At the end of April I had a lapraoscopy, where they found a very large cyst on my left ovary, and approx a dozen small cysts on my right. The large (dermatoid) cyst ruptured during surgery, and the tube was also found to be twisted quite tight. I came close to loosing the ovary, and they have said they don't know how much damage will have been done to it in the long term.

My pain levels are incredibly high. I can feel the pain in both ovaries, along both my sides, my lower back, my hips, my groin, and right between my legs. At 21, this feels like quite an overwhelming diagnosis to be dealing with, and the pain is pretty unbearable.

The only treatment I have been offered is hormones, which I have refused, because I have always reacted very very badly to them mentally when I've tried various different pills (I also have Borderline Personality Disorder, so need to be very careful with my head!).

I think I am looking for some information, for experiences, and maybe for a place where we can support each other if there are others dealing with his crappy condition too.

Sorry to hear Sirboobalot how much you have been through with having psos...

I was diagnosed quite a few years ago now and my symptoms are weight gain and a lot of facial/body hair which is a nightmare as it makes you feel very unfeminine.

I also was never able to take any contraceptive pill either as they just made my head go crazy!!

There were lovely girls on here the other day who also have psos who were a great help to me and sometimes its nice to be able to talk to someone else who understands...

So maybe if we keep this bumped up other people will see it.

sirboob-i have pcos and so does my 20yr old dd, she was diagnosed at 16.

dd has tried the pill , which helps regulate her periods and reduces the excess hair but she hates being on it because of weight gain, tiredness etc

have you changed your diet to a low glycaemic index one. I'm not sure if it would help with you pain but it's worth try. Apologies if you're already trying that.
verity forum may also have some answers as well as the US one soulcysters

You're right it is a crappy condition ..there are loads of women on mn with it.

Has your Dr mentioned metformin to treat you , not sure if you're trying to concieve or not. I am on it to prevent diabetes.

Have a look at Verity for PCOS information and support.

Your pain is unlikely to be PCOS, so maybe check back with your doctors, as PCOS in itself shoudln't cause pain. Colette Harris has written some very good books (think she has a new one coming out) and she's pretty good on non-hormonal stuff. Also Marion Glenville. Otherwise a low GI diet and moderate exercise is what works the best (and "best" is not always an awful lot sadly).

It's a very overwhelming diagnosis to get, especially as a lot of doctors just blurt it out and send you off, but there are lots of us around (one in 10 women have PCOS), and all of us have a different combination and severity of symptoms. I struggle with my weight, but am not currently seeing a consultant or GP for PCOS.

I also have pcos, same symptoms as twiggy really.. which is fun.. I'm currently trying the low glycaemic thing as weight loss is meant to lessen symptoms (viscious circle).

Ggirl can I ask you about the metaformin I have had pcos for years and have only recently started to read about it.

How come you take it to prevent diabetes is this because you have pcos and therefore prone to maybe develop diabetes?

Twiggy71 yes I am passed the stage of trying to get pregnant . I struggle with my weight though and desperately want to avoid type 2 diabetes. I asked my GP if it was beneficial to start metformin to prevent it and she agreed..as long as I follow a low GI diet as well.
As you know pcos sufferers are at a much higher risk of getting diabetes and heart disease. I recently had all the blood tests and am currently ok..low cholesterol and blood sugar . BP normal etc.
I am 50ys old and have had regular periods since I turned 39 (hence ds turning up age 40) Apparently this is not uncommon in pcos.

I have PCOS and the pain you are experiencing is to my mind not connected to PCOS.

Have you spoken to the gynae surgical pain about the pain post surgery?.

Did they find any endometriosis during surgery?. I ask this as a lap is the usual method of diagnosing this.

Get the pain checked out as it could be something else. Metformin helped me a lot as has low Gi diet and on occasion high fat low carb as has exercise You need to understand how PCOs affects u as it can be different for everyone amd thereford different dietary changes will be effective for doifferent women.

Ggirl thanks for your reply my one BIG worry is getting type two diabetes especially as diabetes is in my family and with having pcos as well...

Think I need to start reading up about the GI diet as well and sort out my health........

I didn't know about the risk of heart disease and diabetes, thank you for the heads up. Guess I better look seriously at my diet.

I also have ME / CFS and Borderline Personality Disorder, so feel this is distinctly unfair, and am going on strike

My main visible symptoms are my difficulty loosing weight, and I also have acne :( I have worse skin now than when I was 13!!!

Agree with the others, you don't usually get pain with PCOS>

I was dxed with this at a similar age.

Did the docto mention Metformin? I was prescribed this to help with weight and hormones. It does work, and can also help with the infertility side of it as well (if you are ttc)

Have been told the rest of my pelvis is "perfectly normal" so can only be the ovaries causing the pain.

Glad to hear you lot aren't struggling though!!

January, you need to get refered to some blood person at the hospital (sorry cannot think of the name of them, endocrynologist?). They have to run tests and make sure you are ok having it.