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' !

Tuesday, 31 January 2012

Endo update and a question that was posted to the Endo FB group...

I went to see my Gynaecologist Jenny Cook today, we decided to wait a few more weeks before making a decision on what to do.
Mainly because I haven't had a period yet (I haven't had one in over 7 months due to Synarel), and we don't know what my body will do. Based on the past month though I have a feeling it will be pretty bad. Went to ED last week, at the suggestion of a person in my Endo Support group on FB, with what turned out to be sever pain from ovulation.
Jenny and I talked about what could/ may be the plan next.... Mirena, progesterone based hormones, possibly more surgery etc.
But it is a tough call, she doesn't want to do another Lap based on the fact that my previous few didn't really do all that much, yes they took out some endo, but more grew back and I got a fair few adhesion's.
She knows that nothing she will do will alleviate all of my pain... I will always be in pain on some level!
So for now I stand at the crossroads waiting for my period and waiting to see what will happen.

Response to a question asked on the Endo support page....
Would like to know coping strategies with getting through the challenges one faces having endo (i.e. infertility, pain, out of balanced hormones, dr's, others perception) and where do you draw your inspiration to get through those challenging times and what challenges you most??

...my coping strategy is to find a distraction - I use painting, drawing, reading, watching TV/ movies, sewing....etc.
Sometimes I take it a little to far and just zone in on things, which my partner then finds it hard to get me talking, or get me to do something as I am so zoned in on what I am doing.

I also see a psychologist and am able to talk about anything and everything with her as it is a place where I am not judge in any way by what I say or do... she is getting paid to be there and help me so I take full advantage of that.
I don't like always telling my partner time and time again that I am in pain, that I am down, that I am not coping.... he now knows just by looking at me and observing what I am doing. I still talk to him about things but don't like to make everything we talk about be my endo and other health conditions as it wears down our relationship sometimes.

I am pretty head strong and I like to think I know a fair amount of information about my health conditions so when it comes to dr's I will tell them my two cents, I have changed GP's and Gyno's to find ones that I am happy with and I feel are actually competent at their job and treating me, instead of them acting as if they know what to do.
Infertility wise I am a bit of a yo yo at times regarding my feelings, I know that I want a child and will have one in my house in years to come and I don't care how that happens (natural birth, IVF, adoption, fostering). But at the same time it is sometimes really hard knowing that my chances of creating a baby along with my partners (he is a type 1 diabetic) are very slim, and I am sad that I will miss the feeling of creating a life and watching/ feeling it grow inside me.

Others perceptions... sometimes I keep my mouth closed and just think about what I would say to them and keep it in my head instead of telling them outright, other times I will say outright what my health condition is actually like, and that my chances of becoming pregnant are pretty much non existent. Most of my family and close friends know all about it now and if they say something wrong I just give them a look and they refer to me.
I have been living with this disease for over just over 4 years diagnosed, and many years undiagnosed, I am 24 and I am not afraid to say to strangers that I have a health condition.
I know I am strong and I will not give up no matter what this disease throws at me, I believe that is is alright to cry and sometimes I will let my guard down and show people how I really am coping (instead of putting on a front, I would say I am now very good at acting as if there is nothing wrong at all)

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