Fundraising and Research Projects

Apart from just raising awareness, the other part of the Well A.R.D group is dedicated to fundraising. So I thought todays post I would concentrate on this and tell you all about the research program that the money will be donated to 🙂

I did a tonne of research over about 6 months, trying to find a project in the UK that focuses on Adhesions/Adhesion Related Disorder. This turned out to be a lot harder than I ever expected, but then it just goes to show WHY there is such a lack of knowledge on the subject! I emailed every hospital I could find, contacted the Royal College of Obstetricians and Gynaecologists, even emailed the Health Minister and not one of them could provide me with any information of such a thing. In the end it actually turned out that the simplest contact was to be the most useful! I emailed my own consultant, Mr Guyer, at the Queen Alexandra Hospital, Portsmouth and explained what I was looking for. He gave me the contact information for a lady called Ying Cheong, who was previously a  trainee of his. She had gone on to work at the Fertility Unit at the Princess Anne Hospital in Southampton. She had become a Consultant in Obs and Gynae, as well as Senior Lecturer in the same subject. She was now leading a research program at the hospital into Adhesions.

I contacted her straight away to explain what we were trying to do and to see if she would be interested in getting involved, or at least letting us make donations.
She was so lovely!! and more importantly willing to help in any way she could, as well as being more than grateful to accept any donations that we wanted to make.

She then went on to send me the full outline of the research that was currently being done ( you can find this information at the bottom of this post).

It’s mad that there is not more research going on, BUT it was also very relieving to find that there is at least SOMETHING being done. If we can help in any way, then that’s exactly what we will do! At this time we haven’t started the fundraising, as we have been concentrating on setting the organisation up first but rest assured once that has been done then we will be pulling the big guns out to raise as much as we can!

Here is the link to our Facebook page with all the research information: https://www.facebook.com/groups/WellARD/561866957213276/

 

***If anyone would like more information about this project, research or anything else Adhesion related please feel free to contact us at: adhesionawareness@gmail.com***

 

 

 

 

Missing out on lifes biggest blessing

As with any illness, the symptoms can be pretty hardcore, and life changing. This is no different with ARD. The list is endless but I wanted to concentrate on one, specifically, today as it’s the one that I have found the hardest to deal with.

INFERTILITY

I was one of those little girls who was constantly dreaming of meeting my Prince Charming, having the perfect wedding and then going on to have the perfect children.
So when, at 21, I was told that this may never be possible, I can honestly say it felt like someone had just reached inside my chest and ripped my heart out – no exaggeration!
As a woman we take it for granted that we will be able to reproduce, after all that’s our job isn’t it?

Now in my case it isn’t completely and utterly hopeless (or maybe I’m just being too positive). I had to have one of my fallopian tubes removed because of the damage that the adhesions did. I was left with one, but that too had been pretty badly damaged. But 1’s better than nothing right? I also do still have both my ovaries, although they are buried in the depths of more adhesions, but still having them is better than not!
What it does mean though, is that my natural conceiving chances have been more than halved, but with IVF, I’ve been told that it shouldn’t really be a problem.
Who ever grew up thinking that their babies would be created in a test tube though, instead of through love?

When all of this first happened it hit me hard. I was in a long-term relationship, and I remember when he turned up at the hospital after my surgery, all I could do was to keep apologising. I honestly felt like it was all my fault and the guilt was awful. I was lucky that he was so understanding, and although things never worked out in the long run, it’s one thing I will always be grateful for.
After that I found it really difficult to be around babies, pregnant people and children in general. It was just a constant reminder. What made it even worse was that friends and family seemed to suddenly become scared of me. Thinking that if they told me they were pregnant, that I would turn into a complete mess. Ok, maybe the first month or so I probably would have but the last thing I would ever want is to put a dampener on someone’s exciting and wonderful news. It got easier, though I still get occasions when I find it hard in certain situations. I recently had to pass up on my cousins baby shower because I just didn’t feel that I would have been able to cope with it all……..yet I hate myself for doing that!

The worst part of it all though, was the feeling of no longer being a ‘real’ woman. The one thing that women are meant to do, and now I may not be able to even do that. I have had people tell me that, that I’m not good enough and at first, it was devastating! I have spent way too many hours crying over vile comments, wondering if they are right? Am I really a waste of a woman if I can’t produce? The thought does still cross my mind at times. I don’t think I will ever feel 100% woman but you learn to deal with that over time.

It’s now been 8 years since they first told me the news, and I have seen fertility specialist and Drs to find out about my options, and the way I see it, is that all is not lost.
All I have ever wanted in life is to be a mother. That has, and still is my number 1 aim and nothing and no one will ever stop me, not even my own body!
I am hoping that it is all part of a bigger plan, that I haven’t had children yet because I haven’t met ‘the one’…….and to be honest I am actually so so glad that I haven’t had children with my exs, I would be tied to them forever then haha and I really do not want that!!

When I do finally meet the person I know 100000% that I want to have children with, who knows what will happen?
And what is wrong with IVF or any kind of treatment??
I would quite happily do anything, to be able to have the chance to feel such a precious gift grow inside me, and then spend my life watching them grow into their own person.
So I will always stay positive! Negativity will never get you anywhere.

I just need to find that Prince Charming now…………

My Story

My name’s Sarah-Emily and I am 29 years old. I’ve suffered with adhesions for the last 8 years. Here’s my story……

I was admitted into hospital in 2005 with abdominal pain. Tests were run and the Drs were not 100% sure of the problem and decided that it seemed most likely to be a problem with the appendix. The day after admission, I had surgery to remove my appendix. As it turned out the appendix was fine, but the blood tests that came back after the surgery was performed showed that I had an extremely high CRP level (signs of infection or inflammation). Never the less, I was sent home a few days later and told I would be fine.

A few weeks later I was readmitted to hospital where my CRP level had risen to 147, which in medical terms, is very high! I was put on 48 hour IV antibiotics and once those had finished was sent home again.

My pain continued and I kept going back to my GP. At this point my CRP level has risen even more, to 157. Because of this I was referred to a gynaecologist, who was sure that all the problems that were going on were post-op related.

For the next few months, I was back and forward to my GP and to the hospital, with nothing getting rid of the abdominal pain. It was then decided that Irritable Bowel Syndrome was the problem, even though a sigmoidoscopy (camera up the bum) showed that there was nothing abnormal.

In 2006, I finally convinced my GP to send me for an ultrasound scan to put my mind at rest, and this showed enlarged ovaries and an irregular shaped cyst, 5cm wide. The consultant told me it could be 1 of 2 things.

1. an average ovarian cyst

2. pelvic adhesions following having my appendix removed.

A few months later, I had a laparoscopy to remove whatever the ‘thing’ was. When I was coming round I was told there was Good news and Bad news. The good news was that there was no ovarian cyst. The bad news was that the irregular lump was actually inside my fallopian tube and it had to be removed. My right ovary and tube were buried beneath adhesions and stuck to my pelvic wall. These adhesions were removed and everyone prayed this would be the end of it!

Unfortunately this wasn’t the case.

Over the next 5 years, I had another 4 more surgeries to remove adhesions from my pelvic area, but none of them have seemed to get rid of them completely.

As a result of all this, though, I’ve has now been told that conceiving naturally will not really be possible and that if I want children, it would have to be through IVF.

I currently have to take Tramadol and Gabapentine daily for pain relief, although there are days that even this does not get rid of the pain.

Drs have now said that as they don’t know much about adhesions, that it is now a case of Pain Management for me instead of trying to get rid of them.

So, this is my story, and the reason behind my awareness campaign. Everyone, regardless of gender, colour, religion, is at risk of developing adhesions after any type of surgery. Unfortunately, when your signing the consent form and told of the risks involved, this is one thing that is NEVER mentioned! So let’s raise awareness everywhere and get Drs to take the condition seriously!