Hormonal acne what are the next steps

[Acnequeen2022]

I’ve suffered with acne since I was a teenager. It used to come around my period and only on my face. Over the past 10 years it comes all month long from my face down to my boobs, chest, back and neck. Huge cystic acne all around the chest and back, leaving scars or holes when they burst. I had one recently about 6 months ago on my boob which is now a lumpy scar, which is embarrassing.

Around 3 years ago it started appearing on my scalp as well, all around my hairline. I haven’t been to a hair salon for years because of this as I was too embarrassed. It was so painful to brush my hair as well. The only thing that immediately stops my acne is the combined pill. I can’t take it though because it makes me bleed every day or most of the month. On the pill I will have 3 weeks of blood and 1 week of no blood. I’ve tried a range of pills with different hormonal levels and all of them have done the same.

From age 15 to 20 I was successfully taking microgynon 30 with no issues and no spotting and then suddenly I started bleeding in between periods and have not managed to find a contraceptive that can combat the extra bleeding. I tried to mirena coil and it got stuck so had to have it removed under general anaesthetic. I was in agony for 6 months with severe period pain and bleeding when luckily they agreed to remove it. A gynaecologist convinced me to have it to help with my painful periods and painful ovulation. It helped none of them, and obviously didn’t help my acne either.

So after that disaster the GP started me on Lymecycline (antibiotic). I have been taking it for almost 1 year. It got rid of all acne straight away but if I forget to take a dose then I will immediately gets spots. Through this past year I have forgot to take them for a few days and the acne returns immediately. I’ve been taking them every day and I’ve noticed spots reappearing. So it’s clearly stopped working almost, I think it’s time to stop the Lymecycline. I hate antibiotics, I’m scared to take them and I was offered them years ago but refused for acne. I only gave in this time after the issue with the coil.

So now where do I stand? I could go back on the pill but bleed every day, ruining my sex life and marriage because we can’t have sex, and my sex drive disappears on the pill every time. If I pay to see a dermatologist they will just give me more drugs rather than getting to the bottom of the issue which is clearly hormone related. I can hide the acne on my chest/back but the acne on my face and scalp is really scaring me if it might return. I can’t use creams on my scalp and they say not to squeeze them but every time I would brush my hair they would burst.

I’m 30 years old, period every month, ovulation pain every month, sometimes the ovary pain can be worse than the period pain. The GP told me for years that is normal ( the MALE GP) !!!!! Like he would understand 🤦🏻‍♀️. I’m pretty sure it’s not normal. I’m going to stop the Lymecycline today and buy sone good probiotics to try and rebalance everything. I’ve also gained 3 stone and just feel so down, my hair and face gets so oily it smells. I’ve been using anti dandruff shampoo as I was also getting dandruff too. It feels like everything is coming to me and I don’t understand why.

You need a diagnosis first and foremost. And no this is not normal at all.

Has no-one ever mentioned PCOS (polycystic ovarian syndrome) to you as a possible cause for this?. That was my initial thought as someone dx with PCOS and I would also think its also the root cause of your bleeding between periods, the oiliness of your hair/scalp and weight gain.

Have you had blood tests done within the last six months to see if PCOS is present?. Treating the underlying hormonal imbalance is the only way to clear PCOS-related acne if PCOS is indeed present.

If finances permit I would bypass the useless GP and self refer to a gynaecologist as a private patient for an initial consultation. Apart from a firm diagnosis/diagnoses you need up to date blood test results along with internal ultrasound scans (the plural is deliberate because one scan is not sufficient) to determine if your ovaries are indeed polycystic.

I would also suggest you keep a daily pain and symptom diary if you are not already doing this as this will give the gynae clues.

Sometimes women with PCOS experience heavier bleeding during their menstrual cycle. The technical name for this is menorrhagia, and it’s caused by low levels of progesterone associated with PCOS.

I was getting constant spikes and crashes of both progesterone and estrogen hormones. Menorrhagia is characterised by severe bleeding that lasts for seven days or longer. The average blood loss during a regular period is usually 40-40ml. Women suffering from menorrhagia can pass more than 80ml of blood, and also experience clotting during their period.

Are you still getting severe cyclical pain?. This should absolutely be investigated further by a gynae to see if endometriosis is also present.

Lymecyine worked well for me whilst on it but once stopped cystic acne returned.

I was then put on Roaccutane and did a short low dose course.

Made a vast improvement. I rarely get cysts now.

Yes the pain is quite bad still but only for 2 days per month, the bleeding and clotting is heavy but not flooding or anything severe. The ovary pain is just as bad as it’s always been with the heavy white discharge every month. I thought people with polycystic ovary syndrome had irregular periods? I’ve never missed a period ever, they come every month. The only time my bleeding has played up has been on the combined pill or the coil. I’m trying to understand what hormonal imbalance I’ve got. I don’t know where to get blood tests as I know the GP won’t bother. Also I’ve had scans, internal a few years ago which showed nothing on the ovaries but a small fibroid. That was never checked again. Also had an ultrasound in February to check that the coil wasn’t “lost” as nurse and GP couldn’t find the strings. The only thing they noticed was that my uterus was facing the wrong way but that was more to do with the coil getting stuck. I suffer with headaches every day and they can’t find a cause, I’ve had these headaches with a bit if nausea every day for 3 years now. My friend laughed when I told her about the headaches and said “oh you’re way too young for menopause” and then I suddenly thought… what if this is all hormonal?

Your situation sounds awful, I wonder if you can find a GP with a special interest?

FWIW cutting out refined sugar makes a massive difference to all my hormonal problems. I too have had acne on back, chest, arms, face and horrible PMT all my life, but stopping the sugar really does make a difference to all of it.

Please ask your GP to refer you to a dermatologist…isotretion (sorry that may not be the correct spelling) has been a life changer for my daughter who had terrible cystic acne, but it needs to be prescribed by a dermatologist.

Are you on any sort of contraceptive currently?

Fibroids can keep on growing as well as causing heavy bleeding. You certainly need up to date scans and blood tests results. I would seriously consider self referring to a gynae as a private patient also because wait times for gynaecology on the NHS are miles long.

My ds suffered the most horrendous acne from puberty to age 20, tried all the treatments you have, they all work in the short term but it wasn't long before it was bad again.

A three month short sharp course of Roaccutane sorted his out completely, you do have to get a referral to dermatology. I was worried after the three months was up it would creep back again but so far two years later his skin is totally clear.

Over the counter acne treatments are targeted towards teenagers.
There are a few new ones, my daughter is using Katy London, it has been great so far.
Watch your shampoo as that can cause acne on your back and chest as you rinse your hair. I thought I had dandruff until recently, it was psoriasis. I now use a Wella professional shampoo. Best I have ever used. Blue bottle.
I agree with the other posters this does sound like PCO.

So I think I will speak to GP and mention it all, ask for bloods/referral. At the same time I’m wondering whether to go down the hormonal route or the dermatologist roaccutaine route