myendojourney

Endometriosis UK

Posted on: November 24, 2011


Week Thirty-six- Thirty-seven

This weekend I travelled toLondonto take part in a training day so I can become a volunteer with EndometriosisUK.  The Friday was an opportunity for the charity to train up new volunteers on their message board, support groups and telephone helpline. My application to be a volunteer with the organisation was submitted prior to my surgery and is something that I have wanted to do for a long time. The Saturday was the charity’s annual Endometriosis information day. Friday night was an opportunity for the volunteers to get to know each other and have a bite to eat together.

Strangely in the run up to the training day I had felt very neutral about taking part in the training on the Friday, perhaps this is due to how busy work has been or maybe it’s just how my brain processes things. On arrival at the venue on Friday morning I was quite pleased with myself for finding the venue.  Following a google map on an iPhone inLondonis not an easy task!.

The other volunteers and staff from EndoUKwere welcoming and friendly, but you could tell their was an air of trepidation and anxiety as any training day has. Meeting other sufferers of Endometriosis is difficult on many levels,  yet its so empowering and something I wish I had the opportunity to do years ago.

Helen (Chief Executive of EndoUK) did a welcoming talk and a introduction to the charity.  This was informative and useful.  There are other charities out there that work around Endometriosis. Some organisations objectives are purely around research and campaigning.  It was good to understand the principles behind EndoUKand learn of their passion behind supporting sufferers and their links with other charities such as the World Endometriosis Research Foundation.  It was great to know that partnerships exist between the other charities and that there was not the same level of competition that may exist within a business world. 

I was shocked how few volunteers help on the helpline…… its just 12 ladies who give up their time.  Myself and the 2 other ladies who trained with me on that Friday takes the total to 15. 

The training was useful and informative.  Having been a user of the helpline in the past it was a passion of mine to give something back.

The work and dedication that goes in too setting up a helpline, message board or support group is not to be underestimated.  EndometriosisUKare passionate about ensuring that their volunteers are give the correct amount of information and support in order that they inturn can support ladies who are living with Endometriosis.

After the training a group of us made our way to the hotel where we agreed to go and find some food before having an early night!  There is no way I can articulate what a funny evening we had.  The hotel that we were booked in to has to be quite simply the strangest hotel that any of us had ever stayed in.  The comings and goings were simply hilarious.  It was a huge hotel and an eclectic clientele, from the rich and famous through to people like myself (not casting any assumptions on my fellow endosisters). Honestly if you are ever inLondonand want to have a free show then drop me a line and I’ll tell you where we stayed.  After our meal a smaller group of us sat in reception with a few drinks.  This started out to be a night cap and then 3 hours later we were still absolutely gripped by the sights coming and going that we literally had to tear ourselves away to go to bed.  Now I know you are dying to have a snippet of what we witnessed so here goes (it’s never as funny in the retelling)

So we stood in reception waiting to meet the others prior to finding a restaurant.  A well known actor and soap character walked in to the hotel, looking rather shifty and then walked past us to go the gents toilet….. this in itself is not shifty I know but it drew our attention to the popularity of this particular men’s toilet and gave us a hint of what was to come that evening!

So after returning from our meal some ladies went to bed.  A smaller group of us decided that we needed a night cap so made ourselves comfortable up in a balcony area which happened to be on the same floor as the said gentlemen’s toilet.  Now its so common to have a busy ladies toilet…. its also common to queue to use the ladies loo!  Not in this place ….. Men were queuing for their loo, and I swear that there were literally droves of men coming in and out of that loo like you have never seen.  We were absolutely captivated so much so one of the endosisters husbands who had joined us was sent in to the loo by his dear wife to find out what the attraction was…… maybe they had gold plated loo roll??? No he reported it was just a normal toilet.

During this time we also observed several oddities,  one sight I have to describe to you.  Picture an older lady (around 60), slightly plump,  wearing a black velvet tightly fitted top, with a black bra underneath – no vest , just a bra.  Accompanied by a pair of grey cable knit tights, the ones that are all the rage at the moment.  Just tights,  worn as if they are leggings…. that’s right just a pair of tights – on top of her large Bridget Jones white pants!  The lady in the bad tights was rather hyper and hanging around the front entrance of the hotel,  she made her way up to the area where we were sitting and sat at a computer (the hotel provided some computers for internet access) Whilst she was on line she came over and asked me if she could borrow a pen.  About 2 minutes later she threw the pen at me informing me that it didn’t work and I needed to give her another one.  Its not that funny written but it was just such a random evening. The hotel went from quiet to having droves of people arriving by the bus load, coupled with the comings and goings in the men’s toilet all in all it turned out to be an interesting evening.

Anyhow on the Saturday morning we all met up for breakfast, on the lift on the way down to get food I was greeted by another guest who got quite angry with the lift stopping at each floor she informed me that she was in a rush to get to reception as she had left her skirt there the night before! honestly what kind of place was this!?!?!?!

Breakfast was fairly boring by comparison and we all made our way to the information day. 

I suddenly was consumed with what can only be described as fear.  I knew that during the day I would be meeting and hearing from the leading Endometriosis gynaecologists inEurope.  Suddenly I was afraid that maybe I should have seen these specialists, what if I had done the wrong thing…. maybe they could have cured me …… Duncanhad been worried about this happening before I left for the weekend, at no point before the Saturday morning had this ever crossed my mind.  Yet here I was worrying that maybe I had done the wrong thing.

 

After much consideration I have decided not to write in great detail about the information gathered on the day. We all take from events of this nature information away that is pertinent to where we are as people at that moment in time.  I do not wish to discredit the specialists present and their level of expertise and am concerned that I may do them a disservice in my re translation of their messages.

Please bear in mind that the information documented below is from my notes, some of which was on presentations and some of which was learned through listening to the experts  – I have not knowingly taken down any information and misrepresented it here.

The first consultant of the day talked in graphic detail about Endometriosis, including videos of laparoscopies and excisions. Whilst this was informative the detail was very high level and at times difficult to absorb.  He helped me understand why I am still suffering following such radical surgery. Talking about surgery such as mine as a subtotal removal of endometriosis and that for ladies with severe endo there is a 22% chance of reoccurrence, even with ovary removal,  I spoke with him after his presentation, explaining what I had been through and what pain was being experienced. He was kind but firm explaining that it was my right to see my consultant again, giving me the confidence that I need to write to my consultant asking him to see me again, not that I want anymore surgery but I need to just know what I am dealing with.

Endometriosis is not as progressive as the experts once thought it was.  If you have stage 2 Endometriosis it won’t necessarily progress to stage 4 (so they think). They also now believe that when Endometriosis grows it grows quickly,  so for me my Endo may have grown quickly and aggressively, therefore an early diagnosis may not have changed my life path. Endometriosis is a custom made disease, one where sufferers have to try different treatments and ways of managing it.  A clear message from the consultants was that sufferers should not be afraid to try and see what treatment may work for you as we are all so different.  The key thing is to get your symptoms under control, discover what mechanisms work with managing your pain.

The highlight of the day was a lecture on pain management (Dr Kevin O’Sullivan).  The specialist who led this lecture was fantastic. His style of presentation was very normal and on a level that most of the audience could understand.  The stats he presented were harsh (Please bear in mind that the information documented below is from my notes, some of which was on presentations and some of which was learned through listening to the experts  – I have not knowingly taken down any information and misrepresented it here..

  • Did you know that out of 12 surgeries for endometriosis only 1 baby will be produced?
  • Surgery is an effective treatment for endometriosis but there is a very high reoccurrence rate – 50% will relapse
  • A colonoscopy will hurt more for women with Endometriosis than non sufferers

His talk was captivating and I really wish I could do him justice and write about all that I learned,  the only trouble is my notes make sense to me – but am worried about writing it on here and giving false information. He talked alot about brain memory and how the body remembers pain. Importantly he expressed how essential it is for a woman with this chronic illness to get support to manage their pain and the condition, citing CBT, hypnotherapy, distraction therapy, psychotherapy or counselling as the mediums that can be used. Arguing that it is imperative to gain an insight in to chronic illness in order to aid recovery (this goes for any chronic illness not just endo).  Rather than making you feel like a freak who is making it up, he gave plausible reasons for why women are still in pain even after a hysterectomy and at no point did he patronise or make any of us feel that we just needed to pull ourselves together and get on with it!

In many ways I feel strongly that any woman following a diagnosis of Endometriosis should be encouraged to attend an Information day as well as insist on a referral to a pain clinic.  The messages were very clear,  the consultants were supportive yet realistic. Repeat laparoscopies are not a good way of managing Endometriosis, nor is becoming dependent on strong medications.  Obviously we are all different and I am in no way telling any other endosister what to do with their treatment programme. But it is our right to have a referral to a pain clinic and a right to be seen as an individual looking for a way to manage this disease.

What I can say clearly is for me I came away from the day in the full knowledge that I have done absolutely everything I could to manage Endometriosis and to try and save my fertility. Listening to the specialists made me come to terms with my illness in such away that rather than say I am moving on, I can begin to allow myself the freedom to move on within myself.  I don’t know if I will every truly move on, how can I? There will never be an occasion when I will celebrate my barren state,  as my circumstances evolve with time my attitude matures. 

Moving within myself is far more about becoming a new woman a woman who has been trapped by chronic illness and finally set free.

Kind regards

Endosister Liz

 

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Roses of Endometriosis

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