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Advice From A Long Term User Of Spiro...

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Hi All, I thought I would post on here for the first time, as it has been interesting reading all of your posts on here about using Spironolactone/BCP etc and I actually think perhaps I can contribute something, either advice or just my perspective/opinions! Background:- I was one of the unfortunates that started my periods aged 11 (I remember that day well, ironically it was the first day of our sex education course...!) Aged 12, I started getting acne. First it started off as a few spots here and there, then erupted into an uncontrollable mess. After unsuccessful attempts using topical creams/ointments, my mum agreed for the doctor to put me on Dianette aged 13. Honestly, it didn't really do a lot at that time, from what I can remember. Those years between 13-15 were awful, and there were many tears and despair over the state of my skin. Finally, my mum had had enough of our GP fobbing us off (my mother has suffered acne all of her life, though now she has hit her early 50's, it has improved considerably) and demanded that our GP refer me to a dermatologist. At aged 15, I was put on Roaccutane for the first time, as well as being on the Dianette. The Roaccutane did amazing things for my skin, though it made it really dry and I do remember my joints hurt. It took two courses to finally get my skin to be about 95% clear, and it was great, until my dermatologist released me back into the care of my GP.... PCOS:- I was diagnosed with PCOS aged 17, after my awful GP decided that I needed to come off of Dianette and put me on Microgynon. IT WAS AWFUl. My skin erupted, I gained like 3 stone, and I didn't have a period for about 10 months. It was after having my ovaries scanned that I was diagnosed with PCOS, and sent to a specialist in London. Spironolactone:- I have been on Spironolactone, on and off, for about 10 years. I think I was on it for about 6 years, before the dermatologist swtiched me to Cyproterone Acetate, which I was on for about 3 years. This past year, I have been on Spironolactone again, combined with Diannette. I have taken Yasmin, but I wasn't too impressed with the results - my skin has been the best it has been in years since being on the Spiro/Diannette combo. I have always taken a 50mg dose, but recently (after reading all of the various posts on here) I think that I have been under-dosed, as I still get the occasional hormonal outbreak along my jaw line. I have now upped it to 100mg a day to see how I get on with that, which is so far so good! The only side effects I have is peeing a lot and some loss of appetite. My Advice:- As an old hand when it comes to spironolactone and BCP, I do think that those that are starting on it should give it time to work. Anything that affects your hormones, or the make up of your body, isn't going to be an overnight treatment. If it was that easy, we would all have really great skin!! I would say the following:- 1) Spironolactone is ok to take long term - don't be put off by the scaremongering. I am so far proof that long term use is safe. 2) Each person has different experiences, so don't be put off by the negative reviews. What doesn't work for one, may work for you. 3) Listen to your body - if anything, a journal is really, really helpful when on any treatment, because it can really aid your doctors if you have any unwanted/unpleasant side effects, or is a really effective back up tool if you feel your doctor isn't taking you seriously. 4) Use your voice - when I was younger, I was terrible when it came to actually speaking and standing up to my doctor, and looking back, I probably could have had access to a lot more treatments if I was only more pushy. Now I am in my late 20's, I don't take rubbish from my doctors anymore, because I now know what works for my body and I'm sticking to it!! 5) Try to avoid wearing lots of make-up - I know this is hard, especially if you suffer from adult acne and work in a professional environment, but it will benefit your skin in the long term. A friend of mine had terrible acne, but never wore make up, and her skin is better than mine, even after being on the same treatments!!! 6) Try to avoid expensive products - a lot of the time, these aren't worth it, as acne like hormonal acne cannot be "cured" by washes or topical ointments. It needs to be treated from within. 7) Rsearch foods and nutrition - it sounds odd, but I always notice a difference in my skin after I drink too much milk - it totally breaks me out! Be aware of what foods you are putting in your body and the effect it has on your skin. If you have PCOS like I do, theres a great diet book which has really helped me. 9) Now this may sound controversial, but if you can, get some counselling. As mentioned previously, my skin is the best it has ever been, and you can see it from the picture I've attached, but I have an awful perception of my skin and myself due to being a long term sufferer of acne. I will probably never really see what others see, but I am getting there by seeing a counsellor to work on my self esteem. I really do recommend this, otherwise you will never be happy when you do have clear or nearly clear skin, and you will never appreciate it. I hope the above helped, but do feel free to ask any questions. All the best Kelly xxx P.S The photo of me is with minimal make up - a bit of Bourjois bronzer, MAC highlighter and Bourjois blusher. I have now ditched the foundation completely.

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Hi KikiLeFleur, this is all such great advice. You are very wise! I am in my 40s and it was not until my mid 30s after birth of kids that I finally realized the diet link to my lifelong (life after 13 yrs old) struggle with acne and oily skin. I had bad reactions to BCPs in my 30s after using Ortho Novum 777 in my late teens (they don't make it any more), and I wish I had known about the diet link and spiro long ago. Now my daughter is just starting the teenage rollercoaster of acne and I'm sure the Drs will say not to mess with spiro for years but I am at least glad I can tell her about the diet link and spiro which could apply to her thanks to my genes. Also I was diagnosed with PCOS by one Dr based on my history and ultrasound of my ovaries but blood hormone levels and no other symptoms other than acne were present so other Drs dismiss the diagnosis completely. The one thing I know is that my body is extremely senstitive to insulin spikes. I think that by controlling my insulin spikes for the most part, I may be able to get away with a low dose of spiro which is what I;m on right now. Best of luck to you and thank you for your post.

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