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8) My PCOS Story

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Article Originally Submitted 2004

Running LCUK and the associated Yahoo! Groups, I have come across this 4 letter abbreviation quite a bit in people’s e-mail. I learned much about the condition, even have a close friend that has it, but until very recently, my interest in PCOS was purely academic. Then, I discovered, almost by accident that have PCO.

How did I find that out? Well, that story starts back in January 2002. I caught a really bad viral throat infection which knocked me off my socks! Nothing unusual there, after all, it was the depths of winter, and colds and streph infections are common at that time of the year. What was more unusual was that it was the 4th infection I had picked up in 2 months, and considering that I hadn’t really been ill in the previous 18 months, I thought that it was time to take it to my GP.

When I told him all this (after he gave me the obligatory guilt trip about bringing a viral infection to him for attention, when he cannot do anything for it! i.e. wasting his time) he decided to send me off for some blood tests. Most of the counts were normal, but my ESR which came back extremely elevated. Normally around 20, mine was 79!

(FYI: ESR is a non-specific screening test for various diseases. The test simply measures the distance (in millimetres) that red blood cells settle in unclotted blood toward the bottom of a specially marked test tube in 1 hour.)

My local Pathology unit is very good, and the results got back to my Doc from the lab in about 4 hours. He called me right away, and told me to come in a pick up a script for Antibiotics!

He also told me to come back to him in a fortnight, to see how I was, and to send me off for further ESR checks. That first test it dropped back to 38, but as he said he would like to see me around 20 or so, he sent me for a further test a month later. That Second test, elevated back up to 44. So, the hunt began to suss out what was causing this ESR anomaly… I had plenty of other blood tests, 2002 made a pin-cushion of my right arm! Rheumatoid factor, Random Glucose, Cholesterols, All picture perfect normal. Very annoying!

I was doing some reading around Thyroid Problems for someone else on my list, and I picked up a copy of “Why am I so Tired?” by Martin Budd. One of the Markers of Subclinical Hypothyroid is a Raised ESR, and what with my other “symptoms” of constant tiredness and lethargy, dry skin, brittle nails, clumsiness, blurred vision, weight gain, trouble losing weight and couple of other classic markers of a thyroid problem, Logic kicked in, and I thought that maybe I had a thyroid problem.

So, I take my Barnes Basal Temp which turns out at 36.4C. (Normal Body temp is 37C. On a BBT, anything below 36.6C indicates a Thyroid problem) So, I bug my doctor for a Thyroids panel, which came back *bang-on* normal,(incidentally, just like the one I had 5 years previously, when I went to him complaining of severe fatigue, seemingly random weight-gain and trouble losing that weight (you see the pattern that I didn’t?)

As an aside here, given my symptoms, and investigations I have done on my own body, I believe that I have a case of “Wilson’s Thyroid Syndrome”. This is a thyroid syndrome, where T4 is not converted correctly to T3. “Normal” thyroid panel tests all come back normal in this syndrome, so the diagnosis has to be clinically (i.e. the Doctor looks at the patient’s symptoms! WTS not yet recognised in the UK, so I cannot get treatment on the NHS. I don’t yet have the money to “Go Private”, but I am saving up! Dr Wilson’s site if you want further detail, but it really is the subject of another article! This one is too long as it is!

Eventually my doctor threw his hands in the air and said, “I am going to send you off to a Consultant! We need a better brain than mine looking at you!”

I waited the obligatory four months on the NHS lists, (sometimes, I wish I lived in the US! Not that often though) and then get my appointment, with (I found out after the fact) a Geriatrics Consultant!

His Nurses take my BP (that day: 102/60 sitting. 110/70 standing, and as a side note, 130/90 before I started LC) and weigh me (a yucky 16st 7lbs that day), I wait around the hospital for an hour or so, then the consultant examines me, reads the notes sent to him from my GP, asks me why I think that my Doc refers me, listens to my story (With attention, and care, with some very good questions I might add), notes my symptoms of low-body temperature, fatigue, lethargy, post-nasal drip, achy joints, dry skin, irregular periods, took my vitals and BP, asked his Nurses to take a bit more Blood out of me and get a Urine sample. Then, he simply said “Although, I cannot deny you believe that you have symptoms, apart from your weight, you are in excellent health!” and that was that, pretty much.

Then, a letter from the Hospital turned up, to go and get a vaginal Ultrasound scan arrived, about 3 months after my Consultation. I didn’t know why I had received it, and so I didn’t attend the appointment.

I got a call from the Consultant’s secretary 5 months after that, to check that I had received the letter, and attended! I feigned innocence, and said I had not received it! I asked her why the Consultant wanted me to go for this U/S Scan. She was very cagey about the reasons, so I hinted that without good reason, as I thought that he had reached the conclusion that I was healthy, why should I put myself out to get scanned, and she eventually asked had I heard of a condition called PCOS.

As I had, and for reasons I will go into later, I had learned all about it, I said, I would take the scan. I then had to wait about another 7 weeks or so from that Conversation, as the letter to make the U/S appointment from the Maternity unit U/S Department turned up on day 4 of my Period, and you have to take this particular U/S scan on Day 5 your period.

The Ultrasonographer asked me if I knew why I was there. Obviously, my notes had not come down from the consultant! I told her about the consultant’s suspicions about PCOS, and it turned out that I “have evidence of Polycystic Ovaries”

So, she sends the results back to the Consultant, who writes a letter to my GP. That gap was another month. He told my GP to refer me to a Gynaecologist. That wait would have been 2 months, but as I have private health care through work I have taken the option to go private for his consult, and I see the man this coming Tuesday. So, the story isn’t complete, but hopefully, as I have been referred to a chap that came highly praised to me by a fellow cyster, I will get some answers, results, and hopefully, some Metformin, to start me back losing weight again. All I hope now is that I am not one of the ladies that reacts violently against it. Keep your fingers crossed for me!

So, just why did the NHS Geriatrics Consultant decide that I might have PCOS?

Well, in the chat we had, I mentioned to him that I was a “late starter”, not menstruating until I was 14, and then my periods were irregular and *very* heavy. I tended to menstruate for 2 weeks, then have a couple of weeks off, and menstruate again. My mum finally took me to the Doc when I had a month long menstruation, stopped for a week, and then started again!

My GP gave me some tablets (hey, I was 15, I don’t know what!) to take for a week, which sorted me out for about 6 months, and then things started to mess up again. This continued until I was 18, when I started to have a regular sex-life with my then fiancé, and went off to College, so, in consultation with my GP, I elected to go on The Pill.

As an important aside, this was also about the time we moved house, and I changed Family GP.

In the next 10 years, I changed Pill brand about 4 times, mostly because I either had *chronically* bad cramps, or I felt like I wanted to axe-murder everyone (the Hormone Balances were so not right for me!). I worked with the Doc to find the right Oestrogen/Progesterone Combo that left me in the middle.

We got it sorted eventually, however, each time I changed brand, I gained about a stone (14lbs). I tried to control this weight gain by following the trusted Weight Watchers concepts I learned back in 1988, when I lost 3.5 stone (49lbs). It didn’t work though, and I ended up at 18st 7lbs in 1999.

As a side bar, I came off The Pill for about a year in 1995, hoping that maybe my irregularities might have sorted themselves out, as the Doctors said they would, by being blasted with hormones over the intervening years, but no…Instead of the incessant bleeding, I just had a 6 month gap between periods! Truly terrifying when your greatest fear on the Planet is Pregnancy. The relief when I finally had a period! Of course, it happens at the most inconvenient time, but hey, I was willing to forgive my womb anything at that point! (Although, I think that my boyfriend was actually rather gutted)
I resumed with the Pill in 1996 for various Boyfriend reasons. When came off again in 2001, this time for good, I thought that it might be that which was stopping me from being a successful LC loser!

The first time I heard about PCOS was through the LCUK mailing list ( LCUK) and so, to help out my list mates, I started researching. I read websites (Pam Ptyza’s pages being one of the most helpful I found, as well as PCOS.net and PCOSsupport.org ) and even bought a PCOS book (“PCOS: How to Cope with Polycystic Ovary Syndrome” by Colette Harris and Adam Carey. HarperCollins; ISBN: 0722539754) for my best Friend, who was diagnosed when her and her (now ex) husband tried for a family; I read it before I gave it to her, and so, I knew all about PCOS.

Indeed, I knew all about it. I just didn’t think it applied to me. At least, I hoped that it didn’t, but when I read “PCOS”, Alarm bells started to ring in my head.

I started low-caring in December 1999, and was losing weight quite successfully, with ease… Until November 2000, when, having lost 4st (56lbs), with practically no effort bar eating correctly on my part, it all stopped, and I started a cycle that perpetuates now, a 7lb gain, then a *long* stall, and then another 7lb gain. I also feeling shattered pretty much all the time and generally not getting the “full-o-beans” benefits of low-carbing that I had felt in that first year (Although a great deal of the other benefits are still with me, which is why I am still a dedicated low-carber!).

I am angry that is has taken this long to be picked up by the medics. I am also angry at myself that I didn’t put 2 and 2 together earlier and see if there was another reason apart from a dodgy thyroid that could be causing my tiredness. But hey, I cam not superwomen, and I don’t know *everything* however much I wish that I did!

One tragic thing for me that I noticed, and confirmed when I came off The Pill for the final time in 2001, was that the Pill severely limits my ability to Orgasm. What is the point of taking a Pill to let you have lots of sex safely if it mutes your enjoyment of what is to me, a sacred act? Another reason for anger.

Why am I telling this story? Well, hopefully, your 30 and 40 something’s out there, that are having problems will get yourself to the doc. PCOS is now a great deal more widely recognised as a syndrome best picked up in youth than it was in my teenage years, but if my original consultant had known about it, or thought more outside the box than just “Give her The Pill to regulate her periods, and she won’t bother me any more” and I might not have had 14 years of being on synthetic hormones, gaining weight, not enjoying my sex life properly, and not living my life to 100% of its potential due to being tired and fat!

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