Guidance and Support with PCOS

Hi! I was hoping some of you would be able to help me with PCOS. I'm 20 years old and I recently found out I have PCOS. I have received no help or support from my doctor and was sent the NHS link for PCOS, that's was all the help I received. I was also told that they would only help me if I was looking to become pregnant. I asked if I could be referred to specialist they said no need to. I felt embarrassed and helpless. The doctor ridiculed me throughout this entire diagnosis. I have severe acne and I don't think I have even seen my first clear for a very long time. This was one of my main problems when speaking to the doctor, i was told it was nothing to worry about and would just go away without seeing the severity of it. I finally got through to the doctor after many weeks! who then wanted to see pictures, within 30 seconds of sending the images through I received a phone call from a shocked doctor who was surprised by how bad it was. I was given antibiotics and cream which I already knew was not going to work as I had taken these throughout my teen life. Anyway I took what I was given and there was no change. I had previously been on roacatane a year before and this also did not work for me. I have lost all hope for my acne and I am constantly reminded of it everytime I look in the mirror, the old acne scars and pit and pock marks cover my face. My doctor then finally let my have an ultrasound which took months to get an appointment, I found out I have about 12 to 13 sacs on each ovary. I can not take the pill as I'm at risk of blood clots at a young age and I can't take the mini pill as I had mood swings through the roof and I was quite ill while taking it. I'm at a lost end! I feel like I am going around in circles and getting nowhere! I'm at a good weight, I'm in the healthy BMI, I regularly go to the gym and I have a healthy diet. I don't understand what I am doing wrong! My periods where once light and short are now heavy and painful and at time unbearable. I'm on no medication what so ever. Any support or guidance or anything that worked for you! I would greatly appreciate it! X

[Emily412]

I suffer from acne myself which I now understand is a side effect of PCOS, like yourself nothing has helped so I am following along. I had a similar experience with a doctor who had no interest in helping me, did you go back and get another opinion? I want to persevere to have further tests but was only told it would be helped unless I try to have kids!

[Hidden in reply to Emily412]

Hi Emily!

I didn't go back to get a second opinion, I'm currently pushing through and finding what works for me. I cut all gluten and diary from my diet and it has helped me so much as it has decreased my inslin which is known to make PCOS worse. I also have cut all/ limit the amount of artificial and processed foods. This has also helped my skin begin to clear up! Better than antibiotics ever have! I also reduced my skincare routine to basic (Cleanser, oil free moisturiser and sun cream) I also joined the gym which lowers testosterone which causes acne and in less than a week my skin looks good! It's not perfect but it's a good start!

It is very frustrating when a doctor won't take you seriously as you understand. It's always good to get a second opinion, something I might also look into. Have you been diagnosed with PCOS? Or still in the process? X

[Emily412 in reply to Hidden]

Thank you! I will try cutting back my skin care. The doctor said he was pretty positive that I had it but wouldn’t do any further testing to confirm his theory so I am not sure where I stand! X

[Hidden in reply to Emily412]

Can you ask your doctor to have an ultrasound and blood test? As these will definitely tell you and give you a clear understanding. X

[Bowbow1]

I can relate to this in the sense that I got no support from my doctor either. I was simply told that I might struggle to get pregnant and a low carb diet might help. The most frustrating thing about the situation was that I had an ultrasound for an unrelated issue and was told there was nothing wrong, it was only when I asked for a follow up appointment that the doctor said there was an issue with my ovary and started asking me questions, then said it sounded like I had PCOS and ordered a blood test to confirm it. I've had to do research online to try to figure out how to deal with it and what issues it may cause in the future etc. I think this is an area where modern medicine fails to solve the problem so looking to other kinds of treatment may be the answer. Making sure you get the right vitamins and minerals and finding natural ways to lower testosterone could help. I don't have an issue with really bad acne so I don't know what to suggest for that, I use vichy products in my routine as they solved my slight acne issue many years ago. Although I don't have acne, I still know how it feels to look in the mirror and feel like crap because of the way you look, the growth of facial hair has the same impact, it's getting boring having to pluck hairs out of my chin everyday. I feel like it is only going to get worse but tbh my biggest concern is whether I can have kids or not

[Hidden in reply to Bowbow1]

Hi!

I know its such a struggle to find something that works and its frustrating when one source contradicts another! I am on inositol which has been working and vitamins. IPL is a good way to get rid of hair permanently, it does take a few sessions and can be expensive but you can buy one of those home ones and do it yourself. I'm still debating whether kids are for me in the future but not knowing you can't have kids is very different to not wanting kids. There is always a lack of research I find in the the doctor World surrounding female health and wellbeing, seems nothing has really changed for women and their medical needs. 9/10 the doctor would say its something to do with my periods. I suffer from unbearable migraines, the doctors straight response was it's my periods. Af if that the only thing that causes issues for women. Broken leg? I'm sure they will somehow blame a woman's period for that!

[Blue1821]

Hii, I just came across your story and I understand your frustration with doctors not being helpful, I had somewhat regular periods until I was around 17 and then they began to start getting irregular and unbearably painful and I stopped completely for 6 months and started to get worried so I went to my doctor and she did tests but said everything was normal and summed it down to me just being stressed and she prescribe me a sleeping pill to help me with everything but I still felt something was wrong so I went for an abdominal scan and that is when they found out I had PCOS and referred me to a gyno and he confirmed it and put me on oral contraceptives but after the first week I was so ill and nauseous I could barely sleep a few hours a night so they tried a different one and I still felt horrible and after 6 months of fighting with doctors, they gave me 2 options, go on the lowest possible estrogen pill (qlaira) or get and IUD and I opt for the pill because I did not want to get that procedure done at the age of 20 and I have been on this new pill for almost a month now and the side effects are not as bad as they were with the other pills but I do get a lot more headaches than I used to get but the nausea and light-headed feeling is as bad and that was honestly the worst part for me. I am so sorry the doctor made you feel that way, it is always a good idea to get a second or even third opinion and find what works for you, it was trial and error that worked for me but I am still suffering from most of the PCOS symptoms such as: hair loss, acne and a difficulty to sleep, even with the sleeping pills but Qlaira has cleared up most of my acne. But if your body can handle the new estrogen that is put into your body, maybe try the patch (I heard it works just as well as oral contraceptives or even the IUD if you are up for it. I hope my story gave you a sense of comfort. You are not alone, I understand your struggle.

[Hidden in reply to Blue1821]

Hi thank you for telling me you experience. I'm trying to get another opinion but it's very frustrating when i can't even get through. I'll have a look at Qlaira and I'll have a look into the patch, which I did think about getting before

[Lolo1992]

Hey there, so sorry to hear your experience. Mine wasn't great with the medical professionals either, so much so I began doing my own research online to learn more. What I can say is contraception was not helpful. Pumping hormones in when my body was not in good levels of them. Its pretty crazy we are just given this as a solution instead of understanding the underlying details.

Migraines can certainly be a hormone not necessarily a period related thing. When I went to the nurse practitioner about mine she gave me lots of information around migraines and told me to note then. When reading the information she gave me I came across a cause for migraines can be sudden hormonal changes. Tracking mine I could tell by period symptoms they happened within certain times of the cycle. With PCOS hormones are subject to sudden changes quite a lot as they are misplaced and try to fix themselves throughout the menstrual cycle.

Sadly still learning my ways, currently trying out inositol the last couple of weeks. Hoping to lose a lot of weight that PCOS has caused me to gain.