my thoughts on my endo diagnosis

So, I’ve had a little time to get my head around my diagnosis of endometriosis, I thought I’d blog some of what’s in my brain cavity.First, a little info on what endometriosis is, in case anyone is interested. Skip it, or this whole post, if you’re not.Definition
Endometriosis occurs when the tissue that normally lines the uterus (the endometrium) is found in sites outside the uterus. The misplaced tissue implants itself onto the surface of the tissue or organ where it has been deposited and begins to grow and function.

Symptoms include:

Pain
Pain is the most common symptom experienced by women with endometriosis. It may occur in any of the following forms:

  • Period pain – immediately before and during the period
  • Pain during or after sex
  • Abdominal, back and/or pelvic pain
  • Pain with opening bowels, passing wind or urinating
  • Ovulation pain, including thigh or leg pain

Bleeding
  • Heavy bleeding, with or without clots
  • Irregular bleeding with or without a regular cycle
  • Prolonged bleeding
  • Premenstrual spotting

Other symptoms may include:
  • Bowel or bladder symptoms, including bleeding from bladder or bowel
  • Irregular bowel habits e.g. constipation, diarrhoea
  • Increase in urinary frequency or change in your normal function
  • Infertility
  • Premenstrual symptoms
  • Tiredness (can be similar to chronic fatigue symptoms)
  • Mood changes
  • Bloating
I believe that I have had this condition for many years and that my diagnosis years ago of Irritable Bowel Syndrome was not IBS but was a symptom of endometriosis. However my symptoms did not really manifest until about 4 years ago, when everything started going downhill in a big way. I was having quite severe period pain with a lot of clotting plus I was experiencing ovulation pain mid cycle, which was even more unbearable than the period pain. Some days it felt as though someone had tied fishing line around my ovaries and was pulling with all their might, the pain would shoot down into my knees and sometimes down my calves into my ankles. I would also get a niggling pain under the right side of my ribs. I had an ultrasound because the doc thought I may have gallstones, but my gall bladder was deemed fine. At around this time too I was diagnosed with a vitamin B12 deficiency though the doctors could not explain why I had this as I was not a vegetarian (B12 deficiency is common amongst vegetarians). They decided that my body mustn’t produce the intrinsic factor to absorb vitamin B. (I now know it’s because I bleed internally every month).Most of my initial tests were done in the UK and when I got home to Australia things kept getting worse. My bowel and bladder would play up big time when I had my period and I began to bloat like never before. I’d have 2 weeks of my cycle where I could barely do up my jeans due to bloating, yet when I was ‘normal’ my jeans were almost loose fitting. Sex had also become a painful affair and I just couldn’t enjoy it anymore. I was also getting really fatigued for no apparent reason. Some days I’d wake up and 2 hours later I’d be so exhausted I’d have to go for a nap again. My social life became non existant because if I had a late night it would wipe me out for a week.I finally convinced my doctor here that something really wasn’t right and he sent me off for an ultrasound. That was around March 2008. I walked to the hospital that day, in 40 degree weather, the wind blowing a gale. I had an internal ultrasound and it hurt like mad, despite the technician being gentle and careful. I knew that wasn’t right. When I got the results they told me I had a fibroid in the wall of my uterus, but that this was not what was causing my pain. Finally my doctor referred me to the gynaecology clinic at the Royal Women’s Hospital. Because I don’t have nor believe in private health insurance I knew that it was going to be a lot of waiting, but I was prepared to do it just to get to the botttom of whatever was going on.

In August last year I finally had my appointment with a specialist at the RWH, it lasted an hour and the doctor, who was the most lovely lady ever, took probably the most extensive history ever. I felt relieved that I had finally found someone that took me seriously and someone that was actually going to follow through and do something about it. I had another ultrasound with them in October (damn waiting lists) and they decided that I didn’t have a fibroid and that they would book me in for laparascopic surgery to determine if I had endometriosis, of which they were pretty certain I did have.

Fast forward to 2 and a bit weeks ago, surgery and finally a definitive diagnosis of endometriosis. I was so very relieved to hear those words, my worst fears were being told they’d found nothing and that they still didn’t know what was going on. But thankfully it was all there, in lovely photos taken by my surgeon!!

I had decided to take 2 weeks off after my surgery, mainly because I wanted plenty of time to recover, but I also wanted time off work as that place was starting to do my head in. It has given my loads of time to research and contemplate where to next.

I’ve discovered there’s not a lot out there, in Australia, in the form of support groups for women with endometriosis. This doesn’t bother me that much, I’m pretty resourceful and the RWH is awesome with everything they do. I found a few online groups (US based) and joined, but after a few weeks I left these groups as I found the majority of these women weren’t very proactive about themselves. They were happy to dose themselves up with painkillers and blame doctors for not doing enough. Or they were complete nut jobs and very obviously addicted to their painkillers. (Generalisation I know, but trust me, some of the conversations on those sites were just plain scary, there are so many people out there who are happy to be victims of their health). I have a follow up appointment with the hospital in April and if they don’t offer it to me, I will ask them for a referral to their pain clinic as I have heard amazing things about these clinics. I do not want a life of taking painkillers, as the only ones that are effective for me are the codeine based ones and taking them long term is certainly not good for your body.

I know it’s not going to be an easy path, having a chronic illness is never fun, but I want to do all I can to give myself a fighting chance.

I’ve been thinking about the infertility thing too. I won’t know if I’m infertile until I try to have a baby. I’ll be 34 this year. I’m single, I’m a student and I’m broke. To be dead honest, I can’t see it ever happening. People say to me oh but things change, you never know and yeah, that’s true. But, I don’t finish uni til the end of this year, then I have to go out and start my new career. I’m not going to have money for a very long time and by the time I do, I’m going to be almost past it. My Mum took 2 years to conceive me, her first child. Chances are she had endo too, but that’s something they never investigated with her and well, it’s too late now. My Aunt has it, they say it can be genetic. Time is running out, fast. I think it’s something I’m going to have to get used to. I simply can’t see it happening. Which is kinda sad, as I adore kids, but I’m being realistic. Besides which, apparently I’m too intimidating and too much of an individual for all the gutless wonders out there anyway!!!

So, if you got this far, you deserve a medal. Next week it’s back to work and uni and I start my placement on Friday. I’m looking forward to uni and to the social aspect of work!!

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~ by Fen on March 6, 2009.

3 Responses to “my thoughts on my endo diagnosis”

  1. wow what a journey you have been on Fen. i’m sorry that this is what you have to live with, having been chronically ill for the majority of my childhood/teenager years I can completely empathise with your journey and frustrationI think at any point we can think about things until we get there you know? If you really wanted to have kids you would find a way… but you also want to have kids (not like the octomum) with 2 parents and a bit of money in the bank…I’ve come to the conclusion if it happens.. it happens.. if it doesnt by the time I’m 38 I’m going to ride my bike across africa! hahah!big love and congratulations for perservering. trusting your instincts is the best thing you can do for your health.

  2. Thanks hon, it certainly has been a journey, but it could have been worse.And you’re right, if it happens it happens. I’m not going to stress about it. It’s not the be all and end all for me.

  3. Chronic illness does suck, but it’s definitely wise to not just rest on your laurels and mope…because things are changing and improving all the time, so if you’re not looking for options, etc, etc, you could miss something really important that could help you!So good on you for following it through, and not being prepared to put up with it. Now you know what you’re dealing with, which is a great thing – and you can work through things now at your own pace!Re kids, well, yeah, I tend to think the same as you. But we never know what’ll transpire down the track. 🙂 At the end of the day, I’ll always be an optimist. ;-)*hugs*

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