- 6 years ago
- Wedding: July 2013 - UK
Apologies in advance for length… I wanted to give a full medical history. If it’s too long, just read the summary and conclusion!
Summary: I’ll be seeing my Dr next week (again) about PCOS and I was wondering what questions I should ask in advance. It’s clear to me that I will need to have a glucose tolerance test and fasting glucose test to rule out insulin resistance and diabetes at this point. I know that NICE also recommend cholesterol testing, but I would be very surprised if I have high cholesterol. I just don’t eat enough fat. I do need to lose the weight I’ve gained because of PCOS though, and diet and exercise alone are clearly not going to work at this stage.
History/Symptoms: As a pre-teen and in my early teens, I suffered from crippling abdominal pain and missed several weeks of school. Initially, I was told it was pre-appendicitis, but my appendix was not removed at the time because it was not enlarged. I was later told that it was probably IBS. There is also the possibility that it was a food intolerance, because I have several. DH jokes and calls my intolerances “snob problems” because I’m intolerant to several food colourings and preservatives, and several artificial sweeteners as well, so I can’t eat processed food. Anyway, I’m wondering now if some of these abdominal pains could have also been PCOS related.
I was always chubby, although after I started using BCP for my acne then I managed to lose weight. I suspect that this was also PCOS related, because the pill was suppressing the problem. During my teens and early twenties I developed an exercise obsession. I did eventually manage to get my weight down to within the normal range (BMI under 25), but I did it by spending up to 3 hours in the gym every day, as well as running at lunch time. I had a chart on my wall where I had to make sure I ate 8 mini-portions of vegetables a day and weighed my protein sources to make sure I was getting the right amount. I ate pretty much nothing but vegetables and lean meat/fish. It worked, but it was pretty miserable!
Naturally, when I met DH then I gained weight because I expanded my diet a little, and started treating myself to things like rice and potatoes. I was a bit overweight but it wasn’t too bad. However, by this stage then my exercise habits were destroying my body. I started getting stress fractures in my legs from running, I weakened my spine (and later fractured it in an accident), and I wore away the cartilidge in my knees and hips. Eventually, I had to give up exercise almost completely. Obviously, I gained weight, but I just gave up a bit at that point and thought “meh, I’m just going to be one of those people who is a bit chunky. It’s not like I’m obese or anything, and I have a good diet”. I did manage to lose weight for the wedding, however, through a very restrictive diet and intermittent fasting.
Then, during my honeymoon, I gained 35lb in just over two weeks. I was shocked. I mean, I treated myself a bit, but that was ridiculous! I couldn’t figure out what was wrong until a few weeks later, when I woke up with a full on Yosemite Sam moustache. Turns out that my contraceptive implant (implanon) had malfunctioned. I had it replaced, and the extra 35lb came off within a few months, without the need to diet.
All was well until we decided to start TTC just over a year ago. I had my implant removed, and within about 12-16 weeks, I gained a little over 50lb.I’ve been on a diet pretty much ever since. I haven’t gained any more weight, but I’ve only lost a few pounds (maybe 4 pounds in 9 months). Very depressing. I have tried both Xenical and carb blockers, but they didn’t work. I suspect that my diet is so low in carbs and fat anyway that it didn’t make much of a difference. However, I am considering asking for a much stronger prescription of Xenical next week. My only worry is that taking a very high dose will impair my ability to absorb fat soluble vitamins.
A few months later, my gynecological symptoms started, and got worse over time. Absolutely debilitating abdominal pain up to twice a month – around CD 14 and CD 1. It’s more painful than when I fractured my spine. Vomiting, fainting, shaking, sweating… I can barely move, I can’t eat, I can’t sleep. The only thing that takes the edge off is either prescription strength codeine or morphine sulphate. The problem is that once I’m doped up to the eyeballs, I can’t do anything for the rest of the day. Obviously I can’t drive etc, and I can’t concentrate either. It’s now at the stage where I do have constant pain, but it’s usually very low level and I’m used to it, so sometimes I forget it’s there. I have a high pain tolerance anyway, so it’s not normally a problem unless something brushes against my abdomen. It’s just these attacks which are so awful. I’ve been prescribed strong painkillers and a high dose of buscopan, but the buscopan doesn’t really do anything. It’s a shame, because I’ve had a lot of success using buscopan for my IBS.
I have a genetically low heart rate and genetically low blood pressure, and I am also alarmed at just how much both of these have increased within 12 months. My Bridal Party has gone from about 100/60 to a staggering 140/90. I’ve always been a bit hairy, but I now have to wax most days. I’m also getting boils for some reason. Finally, I’ve not been able to get pregnant. I have charted and used OPKs, but I only got two positive OPKs in the last year. I do, however, have completely regular periods, and always have. Absolutely like clockwork, every 28 days, very light flow but extremely painful. I have never had any period pain at all before, even as a teenager, so this is completely new to me. I have also developed insomnia and started snoring, much to DH’s consternation!
Investigations: I had blood tests for FSH, LH, testosterone, and TH. They all came back normal. I was then referred for an ultrasound which showed extremely enlarged ovaries with multiple cysts. In particular, the right ovary roughly the size of my clenched fist, so probably about the size of an orange, or a bit smaller.
Conclusion: So… hints and tips welcomed. Like I said, I think diabetes testing is a good idea at this point. Drug wise, has anyone had success with Xenical/Orlistat, despite a low fat diet? I would like to give metformin a go as well. However, metformin is not licensed for the treatment of PCOS in the UK, so I would need a specialist referral for that. I might ask about that as well. I think that, at this point, I really need to try to get my Bridal Party and weight down before trying something like clomid, because the last thing I want is a high risk pregnancy. That said, I suspect that my symptoms would improve if I were pregnant, because I would no longer be ovulating. If I wasn’t TTC, I’d just get my implant replaced, but obviously I don’t want to do that at the moment! The other option would be to get my implant replaced and spend 6 months losing weight and lowering my Bridal Party, before getting it removed and starting fertility treatment immediately, I suppose, but they don’t recommend this because of the effect of the artificial hormones in the implant. Ideas?