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Since I started having periods again last February I've bled for a total of 152 days out of 364. That's an average of 12.6 days per month, which doesn't sound too bad eh? That is 41.7% of the year that I've spent with a sack full of sanitary products on my person and preferably been within 15 minutes of a toilet.
I figure that the average woman without a bleeding condition could bleed for 7 days per month maybe, which is 84 over the course of a year.
It's ranged from 5 days in the first month to 21 days Jan 07, and so far 9 days this month. I haven't worked out my total spend on Bodyform, Always Ultra and Lillets but I'm sure it's enough to keep them in product development (other absorbant products are available - but are frankly less useful).
I'm not going to suggest that women bleeders should get sanitary prods on the NHS but boy would it be helpful! I'm not suggesting it because when I was in hospital with hideous periods as a teenager I was given unwieldy flannelette covered towels with strings to tie them into your pants, and I don't fancy going back to that thanks.
Anyway, I often find myself staring into a blood covered bowl that looks as if a small mammal has met with a nasty accident in there, thinking why am I doing this?
Anyone who has heavy periods will know that there are solutions out there:
- the hormone pill - which I used so successfully for sooo many years
- the mirena coil - many ladies I've met with von Williebrand's have told me how good this is, although with anything - it works well for some and not for others
- hormone injections - not sure if these are used for bleeders but have friends who would heartily recommend these to knock your periods on the head for three years
I have made a conscious decision not to use any of these things because my husband Adrian and I are trying to have children.
Together with my haemophilia specialist, I have been attempting to control my free flowing with prophylactic factor treatment. This consists of injections of factor VIII concentrate every day of my period. I am lucky because I am able to do these injections myself and can do them at home when convenient. I say trying to control the free flow because even with daily factor injections I was using Super Plus and Super Plus Extra (supersized tampons), with large ultra towels (with wings, obviously!!) for the majority of those 152 days last year.
I will do a running total of how many san prods I use every day if you like? Vote A for 'yes, we want a running total' and B for 'no, shuddup with the tampon talk'.
Gotta go to the loo now, I have a leak ........
For some reason this blogging mularky is not coming as naturally to me as I expected. My friends will agree that I'm not usually stuck for anything to waffle on about but I've been looking at this blog for a couple of days lost for words.I want to write what it is to be a woman bleeder but I'm somehow stumped to sum it up. I don't understand what's stopping me. Maybe I just need to start and it will flow - I can certainly think of lots to write in the middle of the night but don't remember a jot of it once I'm sat here during the day and there's no way I'm getting up and typing it at 3a.m. even if I can't sleep. It doesn't help that one of my cats is sat beside me trying to claw my arm off the keyboard - even he's trying to tell me that I've nothing to say...I'm off work at the moment because I'm having real problems with my periods, my menstruation is mental and I am cursed with the curse. I think you get my gist.When I started my periods I was 13 and while my mum and I celebrated me 'becoming a woman' (I got out the in-line skates and balloons immediately and lept woah-ing from a plane) we were secretly worried about how they'd be for me. And we were right to worry.
I soon got into a pattern of at least three weeks on, one week off. It was heavy as hell and I was often admitted to hospital for blood transfusions to make up for what I'd lost. We must have been trying to control it with factor injections but at that stage I wasn't on home treatment so every bleed meant a trip to hospital, across Manchester.
Eventually - after years of experimenting with hormone drugs and fun investigations with the casually named Prof Elstein - I was put on hormone treatment doses so high that they stopped my periods all together. By that point I was sooo greatful I would have happily not had another period ever, thank you very much.
After about 15 years of taking the pill continuously I came off it in January last year. This was a decision that was not easy but I felt that after so long being controlled and suppressed my body needed a break. I wasn't concerned about anything specific, cervical cancer, high blood pressure or anything like that because I'd been monitored and had been assured long term hormone therapy wasn't that dangerous but I just wanted to take a break. Was I being foolish??
Von Willebrand's Disorder (often abbreviated as vWD) is a hereditary bleeding condition and I've lived with it since I was diagnosed when I was a few months old.
The disorder occurs when there is missing or malfunctioning von Willebrand factor in the blood system. Normally von Willebrand factor attracts platelets and helps them stick to each other to make a clot when you are bleeding. The von Willebrand factor also protects and works with another blood clotting component called factor VIII - it is a lack of this clotting factor which causes haemophilia.
Von Willebrand's disorder is the most common bleeding disorder and approximately 1% of the population inherit it in some form. Most of these cases are mild and often go undiagnosed. It is more likely to be diagnosed in women since their bleeding tendency is more detectable during menstruation.
If one parent has von Willebrand's then their children have a 50% chance of inheriting it. It is possible for parents who do not themselves have von Willebrand's disorder to pass it down through either of their bloodlines. Unlike haemophilia where women carry the condition and rarely inherit it, men and women are equally likely to have von Willebrand's disorder.
The main sympton of von Willebrand's disorder is excessive bleeding - the severity of this can vary from person to person, both within the same types of the disease, and within the same family. Over half of all women with von Willebrand's disorder have excessive menstrual bleeding. Other symptoms include frequent nosebleeds, gum bleeds, bruising and heavy bleeding after injury or surgery. More rare symptoms include severe joint or internal bleeding and heavy blood loss during childbirth.
Von Willebrand's has been classified into the following types:
- Type 1 - reduced quantity of von Willebrand factor (mild). This type of vWD can result in mild to moderate bleeding, depending on how much von Willebrand factor is missing. Between 60-80% of all cases of vWD are Type 1. Type 1 patients show levels of Von Willebrand factor 10%-45% below normal and may experience easy bruising and/or heavy periods. Most patients with Type 1 vWD lead normal lives but trouble may arise during surgery or dental procedures where bleeding could be heavier than normal.
- Type 2 - reduced quality of von Willebrand factor (usually mild). The body produces normal amounts of von Willebrand factor but it doesn't function properly, this usually leads to bleeding problems similar to that of Type 1. Approximately 20%-30% of vWD cases are type 2 which actually contains 4 subgroups (2A, 2B, 2M and 2N) classified based on the specific quality reduction.
- Type 3 - little or no von Willebrand factor (more severe). Type 3 vWD is very rare. When the body does not produce von Willebrand factor, the platelets needed to form a clot cannot work properly and the factor VIII levels are reduced - both of which can lead to severe bleeding. Patients with type 3 may experience severe mucosal bleeding and occasional joint bleeding
vWD is a lifelong condition with no cure. People with vWD will need to prevent and treat bleeding episodes throughout their lives. The treatment varies based on the type of VWD you have and the nature of the bleeding episode.
Treatment may include: - Desmopressin medication, to help increase the production of von Willebrand factor.
- Clotting factor replacement therapies.
- Antifibrinolytic agents that prevent breakdown of blood clots.
- Hormone therapy, to control heavy menstrual periods in women.
- Topical medication (fibrin glue).
I've sourced this information from two websites, my friend Helen's MSN Group Women Who Bleed:http://groups.msn.com/WomenwhoBleedand a site I've just found:http://www.vonwillebrands.com/Articles/What_is_Von_Willebrand_Disease.phpset up by a man who has a son with vWD.
.... my first ever blog! Congratulations to me.
I've been thinking about doing this for months but having had some inspiration recently and read some fascinating blogs, now is the time. One word of warning though - I used to think diaries were a good idea when I was a girl and most years I'd start one with good intentions. Two months down the line I'd re-read wistfully the entries I'd made every night for the first two week and think - maybe next year...
A little about me to break you in gently. I'm a 32 year old woman, living in Kidderminster in Worcestershire in the UK. The idea behind this blog is to let you know what it is like living with von Willebrands disorder. This is a bleeding disorder not unlike haemophilia and I have Type III which means I am severely affected. Be warned, this may get bloody and I will be attempting to tell it how it is. Then again, I may find I have no bleeding problems whatsoever and have to tell you about my two cats or what I've been watching on tv so it could all get rather dull.
Either way, hope I've not lost you on this first attempt and I'll try and keep it up!
