myendojourney

2 year hysterversary & health update

Posted on: March 2, 2013


So yesterday marked 2 years since undergoing radical surgery in my fight against Endometriosis.

I can’t believe its been that long……. for so long my hysterectomy formed my future, every thought, every decision.  Now it is part of my past, strangely it is a warm part of my past. Many ladies who have had a hysterectomy regret their decision; bound with bitterness at what they have lost.  I have noticed this with ladies with and without children. 

Whilst I can identify with feelings of bitterness and regret they do not form a large part of my emotions.  I was always logical when it came to the decision – my womb didn’t work! I was not chasing a cure for endometriosis, I knew it would not cure me ……. but I knew I could not return to bleeding 23 days a month – this was enough for me. 

 

So how am I now? Have I got a endometriosis free life?

Depending on who you are will depend on how you interpret how I am now.

Am I painfree – no

Am I symptom free – no

Have I got new issues – yes

Do I feel well – compared to before ….. Hell YES!!!!!!!!

 

Living without a major organ (your Womb is not referred to in this way but in essence this is what it is especially with your ovaries) is not easy.  As a woman we need ovaries for all that it gives our bodies The ovaries are not only your reproductive system they produce estrogen which is key part of the normal development and function of women. When your ovaries go absent without leave your body mourns them. 

I was not prepared for this impact – emotionally or physically.  As you know in the early days I grappled with taking HRT.  Adamant that I did not want more drugs.  My fears around endometriosis re growing were nothing short of extreme.

My GP was fantastic at supporting my decision.  I met with him regularly and he always asked how I was feeling.  In December I went through a spell of general poorlines.  Assuming this was a bug I mentioned it to him in passing.  My symptoms included poor sleep, shakiness, no memory retention, chronic aching, sickness and crying at the drop of a hat often mid laughter!

My blood tests all came back clear – infact my Dr is very impressed with how well my bloods are. Remarking that my healthy diet is having an impact.

I didn’t return to see my Dr after my bloods came back clear – I just dispelled it as a bug ‘so many around at the moment’ ….. however throughout January I was finding it harder and harder to get out of bed.  I had no energy, wanting to sleep all the time.  I do a huge amount of driving in my job but even changing gear was hurting my arm, chest etc.  I would sit at meetings not knowing one day from the next.  Yet I still ignored it, just would come home and cry in the evening go straight to bed and hope that the next day I would feel better.

Then one Monday morning at the start of February I could not get out of bed.  My body simply went – STOP!!!!!!!!

My beautiful husband said enough was enough – I had to go see my Dr and talk to him as clearly this was not normal.

I managed to get an appointment for that morning and dragged myself along. 

This appointment could have gone one of two ways, but because my Dr knows me so well he handled it beautifully.

He looked again at my bloods and remarked that he would expect those levels in a woman 10 years younger (first thought fab … second thought ‘damned I am old to be thinking that!)He then spoke to me kindly about the trauma my body was continuing to experience because of the surgical menopause.  I am shocked by the severity of my symptoms and at the time was skeptical about whether it was the menopause causing me to feel so ill.  But I conceded that I could not continue to feel this awful.  My Dr was concerned by how terrible I told him I felt, all this was mid tears.  Remarking that a normal patient would have come to him months ago, but he was more concerned knowing me as he does that I was sat next to him in bits. He said I have an ability to keep fighting through but when I reach the bottom it means I am broken.  Does that make sense?

He said I was physically exhausted and that he was amazed I had coped for 13 months without any medical help but that he really recommended I gave HRT a try. What did I have to loose? If I didn’t get on with it I would just stop taking it.

I cried and cried.  Feeling such a failure.  I so wanted to do this naturally, I know my pain is caused by endo – why would I then introduce something in to my body that would feed it more?

My Dr felt very strongly that I am not a failure, that I needed to be proud of achieving what I have without HRT. But now is the time for me to be courageous and accept that I need its support. 

So on the 4th February I began taking Livial. One month in and I can honestly say I feel like a new woman.  I had not realised how little sleep I was living on, my bones feel better, my skin looks better, I am no longer crying for no reason.  A bonus is my libido has made a come back (with no warning had some very inappropriate desk moment thoughts!!!!). My hot flushes are better and the palpitations seem to be minimal.  I have got a continuous headache but maybe that is the payoff.
All that matters is that the early signs are positive – I was wrong I need HRT, I frightened myself last month and I don’t want to go back there.

I am disappointed that my alternative package was not enough – maybe in a year or two I will try again but for now Livial is part of my life.

Am I pain free & symptom?
I answered no – which is the honest truth. I never really expected to be I am accepting that Endometriosis is part of me, we go together like the ‘birds of a feather’

I still have pain daily from my lower left rib area.  My Dr is convinced this is endo but what can they do about it! surgery!?!?! I don’t think so.  On bad days I will take a tablet but I have got used to it begin there. I can’t lay on that side, nor can I do stretches or anything that disrupts it – its part of me and I am living around it.  There has been an increase in its throbbing since the introduction of HRT, which scarily happened within days, but its nothing I can’t handle

I randomly get spasms in my lips (down their dear!) and also get electric shock like feelings around where my womb used to be but thats nothing in the scheme of things either.

Have I got new issues?

Show me someone who hasnt got any issues!

The main difficulty I have is with my bladder and bowel.  My bowel I can manage and am doing so quite well, mainly manage this with a good healthy diet.  But my bladder is just annoying.

I struggle with continence issues,  at times I have peed myself but thankfully they are in the minority.  The main issues is I seem to be getting UTI’s with an alarming frequency , roughly every 3-4 weeks.  My Dr is in the process of referring me to see a urologist.

I know when I am getting one because I get period type pains.  The first attack I had last year we thought was appendicitis it was that intense.

This is very common in ladies especially with the intensity of the work I had done – so lucky me eh!

on the whole though I am 100 % better than I could ever imagine I ever would be.

I have no periods, I don’t worry about where I am in my cycle, can I get pregnant this month, will it stick if I do, what happens if I miscarry again etc

life is so much simpler

I would just like to thank those of you who have supported me over all of this.  You are all incredibly special to me, you have seen me at my worst, held me, helped me get to where I am now – I love you all

write soon

Endosister Liz

xxxxxxx

 

 

 

 

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Roses of Endometriosis

From the beginning right back to before my operation

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