Conditions and diseases

I’ve marked isabellaknive above as SPAM.

I have peripheral neuropathy and Wernikes-Korsokoff Syndrome… in English, nerve damage and a brain injury, caused by a B1 deficiency. In 2016 I had bariatric surgery to help me lose weight. I had complications after having the surgery, which caused life-threatening vitamin deficiencies. I was in and out of hospitals, doctors and my surgeon’s offices for weeks, only being told I was making myself sick or it was all in my head. I was admitted into hospital with heart problems, I couldn’t see or walk. Thankfully when the diagnosis was determined, I was started on high dosage B1 infusions and my eyesight came back. Today, two years later, I still have little to no sensation in my legs and my brain injury causes bad brain fatigue (feels like I’ve worked a 14hr+ shift but in reality I’ve only done simple tasks). I’m learning how to live with my new normal.

I have MRKH syndrome which for me means I have no uterus. I found out when I was 14 that I would never be able to carry a child unless I have a uterus transplant.

Thanks to a recent, kinda crude news headline

“Girl with no vagina raising money on GoFund so she can have sex”

which is about another woman with the same syndrome, people wrongly assumed that women with MRKH are the same as those born with Ambiguous genitalia (aka a Hermaphrodite).
MRKH syndrome means that women diagnosed with it are born without a uterus or a fully developed internal vaginal passage, externally it looks completely normal, hence why it usually isn’t diagnosed until puberty and MRKH syndrome has no known causes and cannot be prevented.

Im glad that the article raised awareness about MRKH syndrome because absolutely nobody knew what it was but it is also resulted in some really uneducated and offensive assumptions about women with MRKH.
We aren’t men, we all have two X chromosomes.
Not all women with MRKH syndrome are affected in the same way. Some women have absolutely no internal vagina. Some women have a tiny little bit internally.
In majority of case, all the women have ovaries & fallopian tubes.

The looks I get from completely clueless people when I say I probably won’t have children are so infuriating. They assume I’m saying I don’t want children or I don’t like children as if it were that simple.

I hate the way some people let down the rest of the human race with their ignorance.

Hi Maddii, how old are you if i may ask?
Narcolepsy is quite uncommon, much more uncommon than sleep apnea.
Estimated prevalence is 25-50 per 100,000.
In comparison, the prevalence of PCOS is 1 in 5 Australian women, of obstructive sleep apnea is 3-7 in 100 men and women.

The gold-standard diagnostic test is multiple sleep latency test (not a standard sleep study).

If you do have narcolepsy, you probably need to find answers in a more disease specific support group.

I’m aged 23 and I have Poly Cystic Ovary Syndrome. Took me a while to decide something was wrong and that I really needed to find out what it was – I think this is partially because a lot of the symptom health promotion around PCOS focuses on being overweight and having male pattern hair growth. I have irregular periods, heavy periods, cystic acne & mental health issues (all symptoms of PCOS) – and of course, ovaries with cysts on them! The best way to manage it is to be on a contraceptive if you aren’t trying to conceive, and through diet. I went to a dietician and modified my diet to have more protein and iron (found out I was borderline anaemic!) and gave up veganism for this reason. I’m now being very cautious and monitoring my weight as weight is a lot harder for women with PCOS to lose. My acne has cleared up (hooray!) as well and my periods have become regular and normal on Diane (a pill). Very positive outcomes for me.

I think the hardest part has been the mental aspect of it re: infertility and children. It made me think seriously about the direction of my life, when I wanted to have children etc. I decided that I want to start trying for children at age 25 as I know I’ll be trying for a while before I fall pregnant (and even then women with PCOS have a higher rate of miscarriage), and I want to start before fertility naturally starts to decline (approx. age 30). Luckily, when I was getting diagnosed and managing my PCOS I managed to meet the love of my life who wants to have children ASAP so things are sunny side up! I think I would be infinitely more stressed / impacted mentally by PCOS if I hadn’t found the person I want to have children with, and if I had symptoms that would effect my self esteem (weight and male pattern hair growth). I count my lucky stars that even though I have PCOS, things have worked out well for me so far. I won’t lie, it has been hard to deal with PCOS, but keeping a positive attitude really helps.

If there are any women with PCOS on BH – just know that you are not alone! Please don’t ever think that because you have reduced fertility that you won’t ever be wanted (which was my initial fear). You will find a partner who loves and supports you, and will fight your fertility battles with you.

I have Ulcerative Colitis which is a form of inflammatory bowel disease. I was diagnosed a couple of years ago. When I have a flare up I experience blood loss from my bowels and have sudden diarrhoea several times a day which can be quite debilitating.

I am on medication which I have to take permanantly, I have a friend with the same condition and thankfuly she hasn’t had any symptoms for several years. I have to have colonoscopies every few years as my risk of bowel cancer is higher. Luckily I don’t have any symptoms at the moment which I’m grateful for.

I have a heart condition, hypothyroidism and fibromyalgia… Just to name a few!!! Ha ha!!! I have found that not focusing on myself and doing for others really helps me get through the hard days… Also, the more you can find out about your condition the more you know what to expect and the easier to come to deal with it… Also, surround yourself with others who are positive and will help you through the hard times, rather then let you wallow… Also, diet and exercise are everything… Without the right fuel and movement for you, you could get worse…

Keep your chin up and keep moving through!!! You can do it!!! I wish you all the best in your journey and way forward!!!

Did you only get one Dr’s opinion Maddii?
You could have been misdiagnosed like I was with Epilepsy. I had a seizure after injuring my back. I kept telling the Neurologist he got it wrong but he wouldn’t take my word. It was only after I had an eye test that I mentioned it to my Optometrist. She said I probably should have mentioned that before she had shone a light in my eyes. She said “if” I had Epilepsy I would have already been on the floor having a seizure. So I went back to the Neurologist for more tests. Guess what?
He agreed he had misdiagnosed me.

Narcolepsy could turn out to be Sleep Apnoea.