Saturday, July 5, 2014

Looking for PCOS Stories

Happy holiday weekend everyone!

Just wanted to let you know that I'm working on continuing my series on PCOS (Polycystic Ovarian Syndrome) later this summer.

While, as always, I'll have lots of research and facts, I'd also like to add some stories from real women with PCOS. One of the difficult things about PCOS is that it's a syndrome, and that means it can present really differently in different people. Not everyone's experience is going to be the same, and not every treatment regimen is right for every person.

Thus it's important to represent a wide variety of experiences and treatment regimens, and it's really important to bring that personal voice of experience to the discussion, especially as we start to delve into some of the more personal aspects of PCOS.

In the past we've worked on discussing treatment choices for various aspects of PCOS, and I'd like to continue that. We've been focusing on treatment for menstrual irregularity and insulin resistance/blood sugar issues; now I'd like to focus on treatment for other common aspects of PCOS.

I'll be looking particularly for stories dealing with treatment choices for androgen excess, for hirsutism, for hair loss, and for infertility. Not all at once, of course...each one separately.

So, for example, if you are a person who has used The Pill to deal with androgen excess or menstrual irregularity, share which one was recommended to you and your experience in using it. Did it help? Did it make things worse in some ways but better in others? Did you have any complications with it? How did treatment recommendations for it change as you aged? What types are best for women with PCOS in your experience?

Or if you are a person who has dealt with hirsutism (excess hair on the face and body) or alopecia (hair loss on the head), summarize how you have dealt with it. Did you choose to do anti-androgen medications, cosmetic methods, or a combo of both? How successful were the treatments? Or did you opt out of treatment eventually? What information would you like to have read about treatment choices when you were first dealing with PCOS? What encouragement can you give to other women dealing with these challenges to their self-esteem?

Or if you are one of the many women with PCOS who have dealt with infertility, share your infertility journey and what has helped you. Did you use Clomid or other medications, did you use IVF, did you use alternative treatment like herbs or acupuncture, or something else? How long did you try? What was most effective for you? What was a waste of time and money? What would you like to have known about treatment choices ahead of time? If you were not able to have children, did you choose to remain childless or did you choose to adopt or go with surrogacy? If you were able to have children, what was most helpful in that process?

Obviously, some of these issues are very personal. Rest assured that your story will be shared anonymously or under a pseudonym (pen name). If you do have a story to share, please email a brief summary of your experiences to kmom AT plus-size-pregnancy DOT  org. Don't forget to give me specific permission to share your story, and please tell me what pseudonym you'd like to use (if you have a preference).

Because I may be sharing multiple stories, it's important that you keep your story brief. Focus on one or two aspects of your treatment or experience rather than trying to cover the whole thing. Ask yourself, what would you most like to get across to another woman with PCOS who is starting to deal with the same issues?

Keep in mind that I may not be able to use all entries, or I may choose to quote only part of your story. I may also edit for practical stuff like grammar, spelling, etc. Again, I will not be publishing under anyone's real name, so choose a pseudonym you are comfortable with.

Try not to give medical advice in your piece; none of us are healthcare providers, and we don't know the details of anyone else's case. It's okay to share what has worked for you or to advocate awareness of a particular treatment approach, but avoid telling people what they should do or getting preachy. We are all adults, we all make our own choices, and what's right for one person may not be right for another. Raise awareness, educate people about their options, but respect their right to make their own choices.

I'd also love for people to share their favorite PCOS resources....books, websites, blogs, and links. I'm aware of many of them but I'm sure there are many more out there I'm not familiar with. Tell me the resource, give its link, describe what it deals with, and tell me why you think it's helpful for women with PCOS.

Rest assured, this will be a continuing periodic series. In the future, we will be dealing with PCOS pregnancy, birth, breastfeeding, menopause issues, and many other things. But for now, it's time to continue posting about treatment options for some of the more common PCOS symptoms and health concerns, and it's time to add some personal voices to these discussions.

I look forward to reading your stories!


Amy Bedford said...

Hi there,

I went from having 0 cycle and periods to a fairly regular cycle by getting my weight into a healthy range. It wasn't easy but I followed the slimming world diet to lose around 3.5 stone (just a bit more to go to get to target!) This meant I have managed to get pregnant 3 times. Sadly, all ended in loss (one at 18 weeks, one at 9 weeks and one at 21 weeks) the lossea have no 'reason' and have been through all the investigations so I would be interested to hear whether PCOS and hormone imbalance can have an effect and if there is anything anyone with experience can recommend?

I have had PCOS for 14 years and there is a LOT more information out there now than there was back then! X

Karen Figgitt said...

Hi Pamela,
I have PCOS and worst symptom is excess hair. I AM GROWING ALL FACE AND BODY HAIR FOR MONTH OF AUGUST to raise awareness of PCOS and national charity Verity. Happy to discuss my PCOS story/journey with you. The following blog gives a bit of information on me... Karen Figgitt x

charlotte smith said...

Hi, I was diagnosed with pcos at the age of 40, 6 years ago. After changing GPS after being told heavy 2 week long periods were, just a sign of getting older, in my thirties, to, it will be better after you've had children, do you not want children? Disgusted and deflated by many GPS lack of interest and time. I finally found a gp who the first thing he did was put down his pen, face me and truly listen, I felt I suffered greatly from hirsutism and was pleased to be given nhs support for it, I was sent for electrolysis to my local town college for"free" treatment, where the young students, gasped at my facial hair, said how they felt sorry for me and then gave me terrible spots, never again, after 6 treatments I gave up.

Unknown said...

Hello! I have PCOS and also write a blog about it:
My main issues are low self-esteem, anxiety, depression, weight issues and acne.
I've just written an article for Huffington Post Lifestyle as I'm fed up of only certain symptoms being written about rather than a rounded view being provided by the media. There isn't enough support or empathy for women with PCOS and it needs to change