BE or Bladder Exstrophy

Bladder Exstrophy is a medical condition, or well a birth defect where the bladder and other internal organs are exposed or outside the body. in most cases the pelvic bone is not properly formed and reproductive organs can and will be impared in both males and females.

[girlwithbe]

For the girlies

Hey BE people. If you see this i want you to know a couple things you should know about as recently i have been figuring out i have a uterine prolapse. Yes our BE bodies are very prone to things like this, it can start as early as in your teens and continue to get worse as you age. Mine started prolapsing from age 13 and only just got to about a stage 3 which is my uterus slightly peaking out of my vagina. Stage 4 is when it completely comes out but as our bodies and vaginas are different and unique to each one of us our uterus may not be able to completely fall out. Please keep an eye out for this happening and if you are worried it has started go and see your doctor as soon as possible. The faster you get it delt with and fixed up the less worry you will go through. As i will mention i am only 22 and i have already prolapsed. The upside is also we cannot undergo a hysterectomy as with that whole internal being different we cant risk having another prolapse and having our bladder go with which can also happen. But what i think the coolest thing about BE could be is that us girlies can actually have 2 clits. With how our downstairs forms differently and more open it is more common for us girls and women to have duel clits form. I dont really know how to end this but as i find out more i will update more.

[girlwithbe]

For people wanting to know.

I know i wont be able to answer some of peoples questions or help as much as I'd like. As everyone with BE is different and every case is different. Some people only have BE while others can have CE. Some have gone though 20+ surgeries while others may have had a minimum of 5. We are all different, we are all special. We may have similarities with our stories and experiences but very rarely will two stories be the same. And remember fellow BE/CE survivors We are strong, we have survived, we will survive. Most importantly, we are not alone. If anyone has any questions they wish to ask i will gladly answer. If i can not help i will go and check with some people to get a greater insite to maybe be able to help more.

[girlwithbe]

Lack of support

With BE I know it seems like there is a lack of support. I myself am finding things hard as I have had my specialist refuse to work with me anymore and thus for the neo bladder surgery and a chance/ try to get me dry was now seen as an impossibility. This new urologist just flat out refused to even try to get me dry, as a person with BE I know the chances of becoming dry are low but I was willing to go through the surgery to at least have a shot without having to use a catheter as I don't see that as a viable option to me. With myself getting distracted easily there would be a high chance of me putting off things and thus creating more infections and more chances of renal failure setting in (as well as the neo bladder surgery normally causing more infections.) In Australia with what I am seeing, bladder exstrophy is still a very hidden not known about condition or birth defect as it actually is. I know from others in the UK and USA it is put down as a disability. I have recently started the process of trying to get on some monetary support as my BE and excessively large pelvic gap (described by some doctors and x-Ray specialists like I have sustained impossibly horrid damage either by a kick or from a blunt instrument) has started causing some of the other issues that can occur from BE, like back problems, hip problems, problems standing, sitting, walking. I am 80% of the time confined to my bed now and I am only 22 years old. I'm too scared to talk about this process with people on the secret Facebook groups.. Honestly I'm scared right now. If because of political people I am unable to get on the disability support pension (or they drag out accepting my claim) I honestly think.. Well know I will be scraping by just to get the drynites I NEED to use because of this birth defect let alone food so I can survive.

[girlwithbe]

Hard times with BE

Through my experiences i have encountered the worst times throughout school while growing with BE as children honestly can be cruel.. luckily throughout life, you find there are people who will look past any physical defect you may have.

Seeing many people with BE happily married some with grandchildren and so many with children :) So things do get better, just take a deep breath and remember this is just a single challenge youre going through at the moment. Once you get past that tough time, there are many good times a head. Always look to the future xoxo

[girlwithbe]

Major side effects of BE

Hip problems. Back problems. Leg problems. Malformed pelvic bone. Prolapsed cervix (for girls) Missing reproductive organs. Malformed reproductive organs. High risk of depression. High risk of anxiety. Low self confidence. High chance of having a latex allergy. These are just the side effects off the top of my head that i and other people i talk to with BE have. Even worse is because of this medical defect we tend to also have a high chance of having other rare medical issues. People can look at us and think we are fine. Think we are "normal" (i hate that word) so we can and will be short fused when it comes to people complaining about trivial things and then when they slap the frase "well you look normal" it is like a slap to the face. Yes we look normal when clothed. That is a fact, most people will look normal with clothes on. With clothes off we have a range of scars from many surgeries ranging from birth to 16-50 depending if we give up hope, dont want to risk our bodies being stuffed up more by doctors or go ahead with things. But one great side effect we can have is amazing inner strength from all the challenges we have had to face in our lives no matter how short or how long they have been so far.

[girlwithbe]

Why i started this blog.

I started this to inform the general public about a condition that many dont know about. After joining private groups on other social media and being able to give hope to some people 25+ years my senior i wanted to start a safe haven for anyone living with BE and the like as i know many younger people living with this will be using tumblr. We can compare experiences and help eachother grow and beyond all else we can know that we arent alone anymore. We never were alone in our experiences. We just never knew the others who also went through those hardships. So if any BE patients or curious people want to anonymously send in their stories or just want to ask questions to find out more please feel free and safe enough to. We are strong. We are brave. We are BE survivors.