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Hi,
I was just wondering if acne could still be hormonal even if results come back normal. I've had blood tests and an ultrasound for PCOS, but there wasn't anything wrong. However, I get horrible cystic acne on my chin and jawline and have noticed hair-growth in the same areas which is very dark and corse (I pluck it as soon as I see it - can't stand it!). It's not really noticeable, but I think that's because I'm always checking for it and jump on it right away if I see/feel anything. I also get cystic acne on my back and occasionally on my shoulders and chest. It's all just so painful and itchy and I don't know how much more I can take. I haven't let my husband touch me for ages, or see me without any clothes on/make-up (all oil-free - I had to experiment with brands for ages before I found something that didn't make my acne worse), and while he's amazingly understanding, I feel so guilty and so distanced from him, which is really distressing. I cry over it all the time, and over the years I've had everything under the sun from the doctors - there is literally nothing else they can give me. The only treatment I haven't had is roaccutane, but my doctor and I have a mutual agreement that I shouldn't go on it because I have ME/CFS (there has been reports that it has worsened symptoms and left sufferers bed-bound) and because I'm already feeling so low.
I really don't know what else to do. I've changed my diet, cut out processed foods, red meat, gluten, cut down on dairy, sugar. I drink lots of water and lemon water, eat lots of veg and fruit. I feel like a wreck. My doctor is lovely, but I only had the hormone test because I burst into tears in the office after asking for it. I was so desperate.
I had a miscarriage early 2008, and even though I had awful acne at times before then, it's been much, much worse ever since.
I asked about spiro as well, but I'm in the UK and was told they don't use it for acne over here.
Does anyone know of anything else I can try over here? We've managed to save up for our first holiday abroad in over 5 years and are due to go in November, and I can't get excited because I'm dreading putting on a swimsuit, but I don't want to be bundled up in the heat. It's not vanity, I'm genuinely distressed by how I look and feel disgusting. I'm a lot better with it now, but I'll admit that I used to hurt myself over it. It took me years to tell my husband that, because I was so scared, but he was incredibly supportive and so glad I'd told him. Before then I hadn't even mentioned my acne to him - I couldn't even say the word, and if he'd noticed, he never said anything. I haven't yet been able to summon the courage to tell my GP, though. I was going to tell the dermatologist I saw, but I wasn't made to feel comfortable as I was the last patient of the day and was just rushed through. I don't think he even took me that seriously.
I'm 30 but I feel like a child. My self-confidence is 0 and I feel like I've run out of options and will be stuck like this forever. We've spoken about trying for a baby once I'm feeling better with my ME, but, and I know this sounds awful, I'm worried about how much worse my acne will get, and I've got to let my husband near me, first!
xx
I feel your pain. It took me sooo long to even talk to my husband about it, and he has been incredibly supportive. Yes, I believe you do have hormonal acne. I am in the same boat - all my blood work is normal, as are my ultrasounds. Actually my androgens are lower than average. Yet I have extra facial hair and acne, and a really high sex drive. The doctor explained that there are androgen receptors in the skin, and enzymes converting testosterone to the more potent form DHT in the skin, as well as androgens circulating in the skin. None of this can be measured in the blood. So a lot of people with normal androgens have had success with Spiro because it also blocks androgens at the skin level. I have been on it for 5 months and not too sure it's working for me, but I know it can take longer. I think you should show documentation of its success, studies and other things, and beg for it. Find a doctor who will prescribe it. You have to address the base cause of your acne and it is hormones.
Thanks for your reply - you're right, I think I will print some stuff out to show her. I guess it also depends on whether she's allowed to, under the NHS. The doctor I actually spoke to about the hormones and spiro wasn't my usual GP, but he's an American doctor, so I thought he'd know more about it and asked him. He told me about metformin as well, but said it was a lot harder to get those things for acne over here, even though it could potentially help me. He was lovely about it, and I could appreciate he was restricted. I've got an appointment coming up in a few weeks with my usual GP, so I'll get everything I can to show her.
Having a supportive partner makes a world of difference, doesn't it? I thought he would think I was being silly and wouldn't see how serious it was to me, plus I was just severely embarrassed about it, and now I feel guilty for underestimating him because he's been fantastic!
Oh I see, I didn't realize they were actually restricted. A lot of American doctors don't prescribe it either - it was on my third try that I finally got it. Metformin can help, but I think it is normally used if you are insulin resistant (which I am not). Having a supportive partner has kept me from totally losing it I think. He has been amazing and still loves me no matter what. That really helps get us through things and reminds us that we're ok.
Try using saw palmetto it is a natural pill that you can get a health foods store or probably even boots.
Google it and do some research on here about it even. A lot of members use it. Also there is a member on here who does a very informative post about spiro and saw palmetto she goes by the name green gables. Search her topics and you will find it. She give a lot of useful information about hormonal acne and the bet way to treat it.
Also have you tired birth control to control your acne. In the UK you can get Diane 35 which tons of women have success with.
Just a couple of suggestions anyways. Also there is a member on here dizzy Abby she is in the Uk and brought tons of research to her dr and talked him into giving her spiro. You just sometime have to be able to show some proof and back up your claims. To be honest I think that a lot of members on here know more about skin conditions and treatments than dermatologists do. I could be a dermatologist for a day easily and no one would know I'm not one. I've got tons of information stocked up in my brain about skin. Anyways you could message Abby and get some suggestions from her too since she has successfully has spiro prescribed to her for acne.
Thank you! I'll definitely be looking palmetto up. I tried agnus castus for a while, but didn't see any difference.
I can't take the birth control pill because I get severe migraines and it puts you at a higher risk of getting a stroke, plus I have a family history of blood clots with the pill, so I'm not allowed to take it.
That's great about Abby - I'll definitely be getting hold of all the info I can for my appointment next month!
Please, Seren82, keep updating about saw palmetto. My story is similar to yours, and I understand your pain I feel like you do. The only thing I can tell you to improve your condition is give "zinc" a try if saw palmetto doesn't work. Zinc is suposed to inhibit the enzyme 5 reductase that converts testosterone into DHT.
I am currently taking 50 mg /day chelated zinc, it's not the solution, but my skin is much better.
I think that probably in your case the best solution would be spironolactone. I am spanish and in my country spiro is not prescribed for acne either and it's prescribed for high blood pressure, my father was taking it for that purpose. And I tried it for two weeks, because I was so desperate but I fainted because I have low blood pressure. You should review GreenGable't, she had great success with Spiro.
Natural things that inhibit DHT....saw palmetto, stinging nettle, pumpkin seed oil, vitamin b5. Zinc can but it's a double edged sword...too much and it can increase DHT.
Things to reduce and eliminate
green, black, and white teas
Coffee
Caffeine
Dairy
Alcohol
Sugar and refined carbs
Google "betaine HCL and acne". if your stomach acid production is wacked, everything you eat will show up on your skin. A lot of ME CFS find betaine HCL helps as well
I doubt you can get spiro prescribed in the UK. some UKers I know have gotten legitimate prescriptions online and had the meds shipped to them (it is manufactured in your country just not typically used for acne). If you want to know more about that option you can PM me.
Thanks, Mikito. I'm going to take research to my doctor about spiro, but it's not prescribed for acne over here and very hard to get doctors to do so. If they do, it has to be off-license, and my chances of finding someone who will do that won't be high. Still, I can but try!
I would never recommend taking someone else's medication, especially as it might be the wrong dose or your doctor might not prescribe it because of existing medical conditions, but I'm glad you're ok 
I've heard about using zinc - my skin is really oily, so maybe it would help with that.
Thank you, Green Gables
Yeah, I know it's not prescribed for that over here, and if by some miracle it is, it's off-license, but I'll give it a go anyway, although I think I will try the saw palmetto first and some of the others you mentioned.
I've already cut all those things out of my diet. The only thing I'm really trying at the moment is lemon juice. I've been squeezing half a lemon into a glass of water every morning and drinking it before breakfast, and also use some of it to make a toner to use once I've washed my face. If anything, I was hoping it might lighten my scarring. So many people seem to see a difference quite quickly with the colour of their acne scars, but I have to say that after a month, mine are no different, which I'm a little upset about, but there you go.
I just hope to be free of all this one day, as I know we all do.