Experiences with PCOS?

[mauh]

A while ago I posted about the general chaos that followed after I stopped taking birth control pills. Finally I managed to drag myself out to see my doctor about the whole mess where she informed me that I have classic symptoms of Polycystic Ovarian Syndrome. (Irregular periods, overweight with the weight being mostly in the midsection, an

Comments

[princess_kessie]

I do not want to alarm you in any way by telling you my experience before qualifying that with the following:

I was diagnosed at 17 - in the mid eighties, before much of the modern options were even thought of, let alone became available. There are many more options available to PCOS sufferers now. Unfortunately for me it is more than 7 years too late. You, and most other women diagnosed with PCOS will more than likely NOT have to go through anything like what I had to endure. It is close to the worst-case scenario.

As I said above, I was diagnosed at 17, after already enduring 9 years of painful heavy periods, which incapacitated me for 7 days or more every month, sometimes longer. I tried every type of HBC and POP to try and regulate, shorten and lessen my periods and pain, to no avail. I had several curettes - the accepted treatment for heavy bleeding. On my nineteenth birthday, I had surgery to remove one third of each ovary - the accepted treatment for PCOS in 1989. I had begun to develop excess hair, particularly on my face and chin, and my voice (a classic soprano) had deepened a full two octaves.

The treatment failed. As every new type of HBC was released, my ObGyn prescribed it for me. I am highly allergic to oestrogen, but I continued to try each one, in the vain hope something - anything - would work. My pain and incapacity continued, unabated. I had another five curettes and two laparoscopies during this time as well.

In 1994, at the age of 23, I was prescribed Clomid (clomiphene) designed to make me ovulate and in the process get pregnant. I completed six full cycles over 7 months, at maximum dose. I didn't even ovulate - all I got was a 7cm ovarian cyst, which had to be drained on Christmas Eve. My marriage then failed, because when my then husband heard my ObGyn say I would never have children, he didn't want to be with me anymore. We divorced.

During the next 4 years, I had only a few periods. However, they were loooong. Most lasted for three or four months - one lasted 304 days, the last one over 460 days. I went to so many specialists to try and find something to stop the bleeding, stop the pain, stop the suffering. They all said they had 'run out of ideas' and could offer me nothing new. I had a further two curettes in this time. So in October 1998, I had a hysterectomy.

It is of course a last resort in all cases (except cancer, of course). But the change in my quality of life is incredible. I am certain I bled as much, if not more in the 20 years I had my periods than most women do in the entire time they menstruate. I worked it out once, that the 20 years I bled cost me more than AUD$40,000 in menstrual products alone. That didn’t include other medical costs, drugs, lost wages and everything else associated with it. Ugh.

You mention you are overweight (me too). The first port of call for your Gyn may well be to prescribe you Metformin. There is an established link between insulin resistance and PCOS, and Metformin helps this. It also has a side effect of assisting weight loss, also assisting in treatment of PCOS. It should be treated sooner than later, as the longer it goes without treatment the higher your probability of total infertility in the long run.

As for the acne, I just kept my skin as clean as I could, using a medicated scrub daily (I still do) designed for problem skin. It eventually cleared up, well after my hyster.

I am sorry if I have worried you at all. As I said - I was pretty much the worst-case scenario, and I baffled a good many specialists. I also didn’t have the option of Metformin, as the link hadn’t been discovered then. There are other options now, and the brutal surgeries that I had to endure and few and far between these days. Feel free to email me (princess_kessie @ livejournal dot com) if you want any more info that I haven't covered here. I sincerely hope you do NOT have PCOS. I wish you well in your battle.