Endometriosis & Our GP's

Endometriosis and Our GP's

Endometriosis,is a very serious and common Disease but why are so many women suffering with little or no support. 

Many women with symptoms of endometriosis visit their GP's with their worries and are dismissed or not taken seriously so correct diagnosis is currently taking a staggering 8 years for each patient.

3rd May 2013,I and a colleague attended a GP'S Study day which is basically a study day for Qualified GP'S to update their skills and qualifications in specific fields,taught by various qualified,Doctors,Consultants,Medical Professors within our medical establishments.

The majority of GP's present on the day where women just like US and they seemed very down to earth.

I noticed that as a guest at this event we were not recognised or acknowledged much,it was a case where if you were not a GP then you were not included and each Practitioner had their own circle of friends which they stuck too. I presumed that as this was the earlier part of the event that folks would usually mingle and get to know one another but it didn't really happen that way. 

That didn't stop us we approached different groups and mingled as best we could,as the day unfolded we got to meet some amazing Practitioners from all over the UK who expressed their LOVE for their Job and their passion to go above and beyond to care for their patients and that really gave me Hope.

As we were there to promote our organisation Acendo,supporting women and raising the awareness of Endometriosis we wanted to hear some of their personal experiences of dealing with Endometriosis from a GP's Point of view. 

Well,as you would be astonished or maybe NOT many GP's commented that they knew a lot about Endometriosis but currently as it stands there are No CLEAR and SET GUIDELINES  on diagnosis and treatment,so many patients presenting with similar or multiple symptoms are commonly treated or investigated for other conditions first before Endometriosis. Hearing this was very enlightening,obviously it wouldn't count for the whole Nhs but it still gave me a better insight.

I expressed my views and concerns relating to the latest figure on ENDOMETRIOSIS DIAGNOSIS  and why so many women are not getting the correct CARE & TREATMENT they need and the response i got was that GP's generally are overstretched with work demands and things have got harder because of the current changes happening within the Nhs. 

To be honest i got the sense that the Topic of Endometriosis was a TOUCHY subject for many there,i wasn't sure why and i couldn't really put my finger on it but we definitely sensed it.

I truly believe that at PRESENT the government are not doing enough to HIGHLIGHT the issues surrounding ENDOMETRIOSIS,its a topic that is rarely discussed and when it is, its spoken about very lightly. This issue needs to be shouted about on the Roof tops,it needs to be addressed SERIOUSLY how can so many women in this DECADE be suffering with a disease known to cost the UK an estimated £2.8billion a year in Days taken off work and nothing is being done about it. 

ENDOMETRIOSIS is DEBILITATING,it does not discriminate regardless of Race or Background we all Suffer,we All feel alone,Isolated and let down by our Health Services,Government and Employers.

ACTION NEEDS TO BE TAKEN,TOO MANY WOMEN ARE LEFT TO STAND ALONE,SUFFERING IN SILENCE WITH THIS CHRONIC DISEASE DESTROYING THEIR LIVES.

We Must Stand Together in This Fight..............................

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Young,Confused & Alone......................

I had my son when i was 18,he has been my Safety net,he is such a Blessing in my Life,he was and still is what keeps me going. Before i started experiencing Symptoms of endometriosis my Periods lasted 4-5 Days Max,i experienced Little but no Pain,my Periods were not an issue for me.

I was 21 when i first started experiencing symptoms it was mainly Pain Pain and more Pain and my periods were lasting 14-21 days that continued for around 6 months, I then started bleeding Non-stop continuously with only few days break. I was admitted into hospital at least twice a month for a year for Pain Management,and on most occasions i was given morphine or intravenous Pain Relief.

I was continuously told that i was just suffering with a bad case of Period Cramps and that there was nothing seriously wrong with me,i knew that they were wrong,i knew my body but all i could do was keep explaining the symptoms i was feeling to my GP and hope that he would take me seriously. 

My GP didn't listen to my concerns and worries,he kept telling me that all the symptoms i was experiencing were due to the stress of my new job. I took his advice and tried to manage the pain and get on with my life,my health just kept getting worse.

 

I was in Limbo for 3 years i had been experiencing Chronic abdominal Pain,Heavy Prolonged Bleeding, and Feeling extremely Low mentally. The events of the last 4 years had taken its Toll on my Mind and Body. I was totally alone,none of my Family or Friends understood what i was going through and i could sense that they didn't think that what i was going through was as serious as i said it was. THEY DIDN'T BELIEVE ME!  

Then I also started to Doubt Myself!


I continued to see my GP and he eventually sent me to the hospital to have some tests done a (Laparoscopy) a Procedure where they insert a camera through your Stomach or Vagina.
When the test results came back they where clear,my GP did say that he thought i may have Fibroid's but the tests were not indicating that. I was so emotionally drained,i thought that the results of the tests would reveal what was going on.

4 years later my symptoms got Worse and i started having problems with my Bladder,i was unable to completely empty my bladder,that worried me,i was confused and unsure of what to do. Should i tell my GP? Would he even listen to me? I was so fed up at this Point.
I eventually went to see my GP and told him what was going on,as i suspected he didn't take me seriously all he said to me was that i may have a water infection so he prescribed me antibiotics.
This went on for months until i decided to go back and see my GP and not take NO for an answer,i went back to see my GP and explained to him once again from the the beginning what i was experiencing.

I was at my Lowest at this point,i was struggling to cope as a single mother and cope with my Health i started feeling very depressed. My GP sent me for another test but this time it was a Cystoscopy a camera would be inserted into my Bladder,i was happy that my GP was finally listening to me.
When the tests results came back it concluded that i had blue spots on my left ovary and on my Bladder. This turned out to be endometriosis


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I had mixed emotions i remember feeling glad and relieved all at once, it wasn't all in my head but then after a few minutes it dawned on me What is ENDOMETRIOSIS!
My GP briefly explained what endometriosis was but i still didn't understand,he made me a follow u appointment to see my Gynecologist. The weeks leading up to seeing my consultant i was feeling very anxious and scared. I saw my consultant but it did not go as i envisioned,my consultant was nice but he had no information to give me about endometriosis,he had very little advice to give me,i was stunned. what he did do was ask me to do a Google search on endometriosis as the hospital could not provide me with any more information. 

My Journey with Endo had began......................

Being diagnosed with Endometriosis and living with this Disease has to be one of the hardest things i've had to endure in my life,it has taken me to places i never thought i would go,made me feel things i never thought i would feel and do things i never Dreamed of GOOD & BAD.

Endometriosis has turned me into stronger person but it has also made me look at the world life in a total different way.

My Endo Journey

SURVIVALIST

"Bringing Awareness to Life"

I Have Endometriosis.

My name is Sade and I was first diagnosed with Endometriosis when I was 24 but I had been experiencing the symptoms of the condition three years prior to that so I was 21 when I first developed the symptoms. I was just coming out of my shell and was becoming more confident, I started a new job and then all of a sudden with no warning I began having very heavy Periods and excruciating chronic abdominal pain. 

Endometriosis is a Common yet very Misunderstood Condition that Effects more than 2.1 million women in the UK Alone,Very Little is being Done to minimize the suffering and Pain that women go through with this Condition.

Misdiagnosis is a Major issue which is causing many women to be left to suffer in silence and experience Pain for a Longer Periods of time and in many cases women are left infertile.

My Aim is to Raise funds for Research & Bring Awareness to the front of our communities,especially within BME communities and young girls as they are more likely to ignore symptoms and not seek medical advice.

A Stronger support Network needs to be established to support women/girls and their Families,if Achieved this will contribute to the improved Well Being of many women who suffer.

Here is my Story.....................................................


My moto 'Bringing Awareness to Life' comes from my experiences. The fact that I went through such a traumatic ordeal from being wrongly diagnosed, doctors and nurses not believing me when I told them that I was really suffering from excruciating pain and on many occasions I was ignored and made to feel like I was seeking attention. 

After three and a half years I was finally diagnosed correctly, unfortunately my Consultant who specializes in Gynecology had no information leaflets to give me and was not able to point me into the right direction for support. 

He told me to do a Google search on the internet for information on Endometriosis, that was very scary for me,especially not being advised or guided by professionals. Over the years things didn't improve with my health and I still was not receiving any support from the hospital or my GP so one day I decided that I needed to do something about the lack of awareness in both patient and professionals. That is when my Moto 'Bringing awareness to life' was born it is a double metaphor in its self as Endometriosis needs to be brought to life so it is widely understood and also brought to everyday Life and recognized within the health departments and our communities.  . 

My experience has changed me in so many ways, I look at life from a totally different angle and perspective. Everything from my friendships/relationships, my family life and my career have been affected by Endometriosis I am more aware of what’s going on around me literally.

We go through life day by day but forget how life can change for in you second, it has taught me never to give up and always to be grateful for what i have because there is always someone out there suffering more. I am much stronger because of it! 

The affects of endometriosis spread far and wide in the home,family,relationships and in the work place. It is such a debilitating condition that if not diagnosed in time could lead to infertility, it effects intercourse as it can be very painful and uncomfortable, suffering from mood swings and because it is such a personal subject to many women, many women are ignoring the signs and suffering in silence.

More Black Minority Ethnic women seem to be developing endometriosis more so now than ever and at present the national statistics state that the average age to develop endometriosis is mid to late 20s which I disagree with as I developed the condition at 21 and I have met many other women who have also had it at a much younger age. 

I want to be the voice for women who don't have a voice because at one point in my Journey of endo i couldn't speak up and be heard. A lot more research needs to be done to understand why this condition occurs in woman, and better treatments options need to be developed,better diagnosis and prognosis needs to be adapted and clearer guidelines need to be set out for employers to manage their staff who suffer with endometriosis.

If endometriosis was understood more by the professionals and there was a clearer path for diagnostic measures then maybe things would not have been so hard for me, I don’t want other women to have to go through what I had to endure as it was definitely unnecessary.

My challenges  

I am still facing many challenges today ,I am running this campaign solely on my own at present. It's very difficult to get organisations to listen and to take me seriously. Many times when I contact organisations or companies I don’t even get a response back but I just see this as a challenge because I am so passionate about this cause, nothing will stand in my way,I am so determined to be heard,I am prepared to go to great lengths to get heard. 

The sky cannot be my limit when there is outer space! 

It is my passion and my calling to take on and tackle these pressing issues that myself and many women are going through today, it is so important that we educate the professionals who are our first point of contact. The Media as it stands today are responsible for what we read and watch,these issues need to be regularly written and discussed about. 

The more it is spoken about and heard about the better, much more research needs to be put in place to tackle and understand the cause of endometriosis and better ways to treat women as many women are left to live in constant pain and Suffer in Silence as there is yet no CURE. 

FOLLOW ME AS I ESTABLISH MY ORGANISATION IN AID OF ENDOMETRIOSIS

A COMMUNITY INTEREST COMPANY FORMED TO HELP AND SUPPORT GIRLS AND WOMEN DEAL WITH THE AFFECTS THAT ENDOMETRIOSIS HAS ON THEIR LIVES................................................!

ACENDO

AWARENESS CAMPAIGN FOR ENDOMETRIOSIS