Hey everyone, it’s been a little while since I gave you all an update on everything, and honestly it’s been hard finding the strength to sit down and actually write this blog post. Mostly because I don’t even know where to begin, but also because I’ve been in a state of overwhelm for a while and it’s been difficult processing my own emotions on top of trying to find the words to make them make sense. It’s stuff that goes through my head at night and doesn’t allow me to sleep properly, but I do know that when I share and get things out in the open, it’s a weight lifted and it helps in recovering, so I feel ready now to put my fingers to the keyboard and type what flows out.
I was recently diagnosed with PCOS – Polycystic Ovarian Syndrome. For those of you that don’t know what it is, it’s a condition that causes cysts on the ovaries and an imbalance of hormones. I produce way too much testosterone, my estrogen is very low, and my prolactin levels in my brain are very high. My TSH levels for my thyroid came back as elevated too, but we are re-checking and dealing with that in a few months time.
I’ve had issues with acne since I started puberty, and I’ve had cysts on my ovaries for many years, but within the last 6 months or so, I would say my symptoms have started getting a lot worse. My acne has flared up to be really bad, excess hair growth that comes with too much testosterone has gotten worse, I’ve been extremely tired and feeling yucky inside, and generally I just don’t feel very feminine. It’s an odd thing to try to explain, but when you don’t feel womanly and feminine, and that’s what you want, it’s hard to deal with as you’re battling with yourself. To put it in simple, shortened terms, so I’m not delving into a deep anxiety filled place, I don’t feel feminine anymore and it’s been very upsetting, especially because it comes with fertility issues and that’s a huge part of being feminine.
I spoke to an endocrinologist who was lovely, and he did explain that the first course of action in PCOS is to lose weight as it can often be caused by being overweight, however I have maintained a healthy lifestyle and I’m within a healthy weight, so that’s not an option for me. There’s no specific cure for PCOS and there’s no direct treatment, just the option of using other medications for other purposes, as they have good effects on this condition.
The route we have decided to take is taking the Yasmin birth control pill. The plan behind this is to stop the over production of testosterone as it’s a pill that’s anti-androgen, and it contains estrogen and progesterone too, so I’m putting estrogen into my body, and stopping the testosterone. The key is to stop my ovaries from doing their own thing, and then rely on the hormones I’m taking.
I know birth control comes with risks and side effects, I’m fully aware of all of them, as I’ve done extensive research over the last month, and I’m at the point where I want to take it. If I can improve my acne, the hair growth, and all of the other symptoms that accompany my hormonal imbalance, I will take it. I know there’s no guarantee this will work, so we have other options in mind if it doesn’t, but I am extremely hopeful that it will as I’ve heard a lot of good things from others.
I’ve already tried natural things that are supposed to help with hormones and acne, as I’ve suspected my hormones have been imbalanced for a long while, due to my bad acne, and I’ve tried everything from flax seed, cod liver oil, zinc, B6, Vitamin A to various foods, cutting out all sugar and refined carbs, herbal teas, every over the counter treatment etc… nothing works. So my last resort is to go down the hormone route.
I am quite nervous, but also excited at the same time because of finally having hope and knowing exactly what’s wrong. Even things like my anxiety and certain pains I get are related to it, because prolactin levels being high can cause anxiety, and mine are high because of my hormonal imbalance. It’s going to take about 3-6 months to work, but I’m feeling confident that it will give me some improvement.
I want to keep this blog post as short as I can, and I don’t want to dive into too many other subjects, but I’ve also been struggling with the loss of my kitties, one of them passed before I went to the USA, two of them passed when I was over there, and we just lost our other one last week, so it’s been tough. We have one kitty left and thankfully he’s doing really well, but it’s been an emotional time.
I’m missing the USA too, as it feels so much like home, and all of this on top of my hormonal problems has been pretty overwhelming. I’ve been trying to stay off of social media as much as I can, and I haven’t felt like opening up on the blog either, as I tend to go into a shell, and social media is really bad for me as I can fall into a hole of comparison and not feeling good enough or pretty enough, especially when I’ve lost some of my female identity at the moment, and I’m still learning to manage my Ehlers Danlos Syndrome, as well as seeing a chiropractor for my unstable joints. It really is a lot to take on.
I love you all though and I’m really thankful that you continue to read my blog and support me as it means the world to me. I’m grateful to have you here. And if anyone has experience with PCOS or the Yasmin birth control pill, please do reach out and let me know what works for you. Thank you, Lorna xx.
Lorna, may I give you a big virtual hug from stateside? You have so much to deal with and I wish that I could actually help you! I’ve noticed your not being on the blog or IG. Hugs. 🙏🏻❤️☺️
Thank you so much, John. I really appreciate your kindness, always!
You are so welcome my distant friend! I wish good things for you, Lorna. ❤️🇬🇧❤️
Sorry to hear you’ve had such a hard time lately Lorna! I know PCOS is difficult to deal with but definitely agree once you find the right birth control to help with the hormones it’s much easier to deal with. It’s incredibly common – I think it’s 1 in 5 or 1 in 4 women that have it, so it’s something that there is a lot of help and support out there for and you will find what works for you!
Hope that you are having a good weekend 🙂
Thank you so much, Mica, I really appreciate your kind and supportive words 🙂
Sorry to hear you are having a hard time right now. Sending you a hug.
Thank you so much, Amy!
Hi, Lorna! As a fellow EDS patient, I find your blog very inspiring. Thank you.
Have you been tested to non classical congenital adrenal hyperplasia (NCAH)?
NCAH has mostly the same symptoms as PCOS and is commonly misdiagnosed because PCOS is much more common.
Also, NCAH is related to EDS because the compromised genes in both conditions reside in the same place (you can read about it in this article: https://pubmed.ncbi.nlm.nih.gov/29734195/).
I have NCAH but was first wrongly diagnosed with PCOS due to having polycystic ovaries (which is actually just a shared symptom of both conditions).
If you want to talk about it, just reach me through my email an I’d be happy to answer.
Cheers from Brazil.
Hi Juliana! Thank you so much for this message! I haven’t heard about this disease before! I’m going to do lots of research on it, and see if I think it’s an issue with me. It might be! I am 4 months into the birth control and it’s doing absolutely nothing regarding my symptoms either. I will email you! Thank you!