A healthy food & lifestyle blog specifically catering for & dealing with the symptoms & conditions of : Endometriosis, Polycystic Ovarian Syndrome (PCOS) & Intracranial Hypertension (IH).
Looking at healthy food & food alternatives- redesigning classic recipes & new recipes;
Dealing and living with chronic health conditions on a daily basis- & research about the conditions;
Alternative therapies & remedies, gardening, arts & crafts...
Before undertaking any recipes found on this blog please look to the note in 'Cookery' !

Friday, 21 October 2011

Endo: What is it and how does it affect me?

OKAY well I am going to put this out now while it is still early:
I have a condition call Endometriosis, I was diagnosed at 19 yrs of age back in 2007.

Endometriosis (from endo, "inside", and metra, "womb") is a gynecological medical condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity, most commonly on the ovaries. The uterine cavity is lined by endometrial cells, which are under the influence of female hormones. These endometrial-like cells in areas outside the uterus (endometriosis) are influenced by hormonal changes and respond in a way that is similar to the cells found inside the uterus. Symptoms often worsen with the menstrual cycle.Endometriosis is typically seen during the reproductive years; it has been estimated that endometriosis occurs in roughly 5-10% of women. Symptoms may depend on the site of active endometriosis. Its main but not universal symptom is pelvic pain in various manifestations. Endometriosis is a common finding in women with infertility.

I was diagnosed after an ovarian cyst burst and I landed up at the Manning Base Hospital (Taree). I remember the day very clearly as it was the first day someone took the pain I was experiencing seriously. The day before I was at TAFE during playsession (an allotted time period where mum's/ dad's and children come to TAFE so that student's studying childcare can have interaction with said children) I experienced excruciating lower abdominal/ pelvic pain, I went home and just waited for it to pass like previous bouts of pain, this one was different though, because it lasted overnight and well into the next day.
I made the decision to see a Dr (not my normal GP) and get something done about it. He did a few tests to try and figure out what it was inc. pregnancy tests (I knew I was definatly  not preggerz at the time but it is standard practise). I told him that I had a history of pain full periods as well as pain full ovulation but this felt different. He didn't think it was related and after a physical examination put it down to my appendix, so I was rushed to Emergency where an external ultra-sound was performed (holding on to urine while in pain then having someone press on that area with an instrument is not very nice). We got the diagnosis of PCOS and that one overly large cyst had burst. A Gyno came to see me about it all and also suggested that the pain I experience could actually be something and that he would like to see me. Lets call this Gyno Dr. W...A week later I met with this Dr. W and we discussed the possibility of endo. I was already on the pill so the first stage of treatment was already underway, he suggested a laparoscopy.
Two months later I was sitting back in Dr. W's office and he was showing me the surgical photos proving I had endo and the extent of the disease. He described it as "if somebody had opened you up and cracked pepper into your abdomen and pelvis" indicating that it was everywhere and there was a lot of it. During the procedure he had to make an extra incision to excise as many of the cells as possible (yet he was not able to get it all).
My GP at the time still did not believe that I actually had endo until she saw the photo's, she had always said that having bad periods and some pain during ovulation was normal.
Now four years later I have had 6 different GP’s, 2 different Gynaecologist's, have had 2 surgeries, and have tried 8 different hormonal medications.
My saying is "if your not happy with the Dr. or the treatment you are receiving bloody well say so!" Don't just stick with it because you don't want to offend anyone, it is my body and contrary to what some believe I DO know what is best for it!
Currently I am seeing an amazing GP who actually knows what she is doing and is willing to do the research (and admit to it) if she gets out of her depth.
I see a Gyno who was great and when she did get out of her own depth she referred me onto Dr.V.
That Dr. V. is a Gynaecological Pain Specialist and has been really great, we have finally found a hormonal treatment that seems to be working  = D
I also see a physio every week, she has magic hands honestly, I walk out of there each week feeling much much better than I did walking in (and yes each week we do do something beneficial to my body, it's not like once she has worked on something then that it is that area is fixed, you have to keep working on it). She does visceral massage and has also got me using a TENS machine...which I am in love with. It gives me pain relief with the drugs = D
I see a sports physio/ exercise physiologist who gets me working on muscles that don;t work so well anymore due to chronic inflammation.
I see a psychologist who just listens, that is my treatment with her just talking, without making judgments and allows me to say whatever the hell I want.

I live in pain everyday though the intensity and severity of the pain changes. I may not be able to have children *though that alone is worth a whole post to itself*  and I am currently not able to work or study = (
My body constantly has inflammation, which causes me to have hot flushes all the time.... I live on ice packs.

So what do I do with my time??   I see specialists A LOT, at least twice a week; I garden; I paint; I draw; I cook; I swim quite a bit; I walk; I try to see friends as often as possible and yeah I watch movies and TV too.

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