Endometriosis and me
I first noticed my Endometriosis symptoms after I had Bradley my youngest son. I suffered real bad pains and periods to the point one day I took myself off to hospital in bad pain, I was seen by a Dr and sent for numerous tests, fastly beginning to feel like a pin cushion to then be told they wanted to admit me to hospital. Being on my own at the hospital and having my baby with me I was scared and felt alone as Ian was at work at the time, I didn’t feel the need to worry him as at the time he didn’t work local to home.
To cut a long story shorter I was told it was just a bad period and period pain and all should start to calm down given time. Did it? like heck did it!
I then went on to suffer every month from there. I went to see my GP several times who just repeated what I was told at the hospital….Just a bad period and it should calm back down….Grrrr
I then started to question myself and think is it normal, Is it just me being silly?
But NO, I knew my body wasn’t right and I knew my periods wasn’t normal but the Dr wasn’t really listening to me. I then began to start getting myself in a state and just didn’t know what way to turn.
One day I felt so down, I was in pain, I was tearful, I had three boys to look after so I contacted my GP surgery who gave me an appointment for later that day. I went along to my appointment explained my situation about whats been happening to just be sent away with anti-depressants. I really did feel like I was going mad at this point where I felt like no one was listening to me!
At this point I just felt like I had no option but to just get on with things the best I could. I knew things wasn’t right inside my body, but what could I do. Time passed and I did continue to suffer heavy painful periods to the point I was slowly becoming bed-bound for. I continued to see my GP, I was eventually offered an ultrasound scan at the hospital to see if it would show anything up, but nothing come of it to explain the pain or heavy bleeding.
I was watching morning TV one day and there was a lady on there talking about her suffering and long battle to be diagnosed with what was called “Endometriosis”. She was talking about her symptoms to help raise awareness to others who may be suffering the same or similar symptoms. My chin must have hit the floor as I had every symptom she had.
Some symptoms being:
- Heavy periods
- Painful periods
- Chronic pelvic pain
- Low mood
- Pain during sex
- Some bleeding between periods
- Painful bowel movements
I could not believe what I was watching and listening to. For the first time in ages I did not feel like I was going crazy. I went and spoke with my GP about what I had seen on the TV and explained my symptoms was the same as the lady had explained in her awareness to Endometriosis. I did not want to be ignored this time and pushed for further tests to be done. I had been bed-bound on too many occasions and my life was really being effected to the point I felt like my kid’s was missing out on a proper mum, a mum who wasn’t in pain so much.
I chatted with my GP about Endometriosis, we discussed my symptoms and then my GP went on to explain what Endometriosis is in more detail.
Endometriosis is a very painful disorder in which tissue that would normally line the inside of the uterus – the endometrium – grows outside the uterus. Endometriosis can be known to affect the ovaries, bowel, Fallopian tubes and the tissue lining the pelvis. Endometriosis can even spread beyond the pelvic organs and stick to each other. Endometriosis is even know to sometimes cause fertility problems.
What happens is, each month cells like the ones in the lining of the womb can be found elsewhere in the body. Each month these cells act in the same way as those in the womb, building up and then breaking down, then bleeding, BUT….unlike those within the womb that have a way to leave the body as a period, THIS blood has nowhere to go.
A shocking 1.5 million women in the UK are suffering with Endometriosis. Endometriosis can affect women and even girls of childbearing age regardless of race or ethnicity.
This short video may help you understand in a better way.
I was then referred to a gynecologist at the hospital as an out-patient. I had an appointment through within a few weeks and things finally started moving…..5 years after my first symptoms!
After a five-year battle and being misdiagnosed on many occasions I was finally under the hospital with a possible self diagnosis. An ultrasound scan was ordered but again didn’t show anything but with self research I had read that Endometriosis rarely shows up on an ultrasound scan and is mainly diagnosed via a laparoscopy procedure so this is what I pushed for.
Another referral was pushed for, I did not give up….I knew something was wrong with my body. A few months later and I got my appointment through. It was then confirmed I HAVE ENDOMETRIOSIS.
The tears started to pour down my face and I was a bag of mixed emotions. I was scared, relieved and angry all at the same time. I also wanted answers.
Questions I wanted answering…
How could this diagnosis take so long?
why was I just left to suffer?
Why did I have to self-diagnose myself?
Why the big fight all the time to get anywhere/get things moving?
Sadly it just boiled down to lack of awareness. Endometriosis needs so much more awareness.
Once I had my diagnosis I was then given the right treatment to help me cope better. This only lasted for a while sadly and before I knew it was going back downhill again. The heavy painful periods started again and I felt like I was back to square one again. My GP referred me back to the hospital again for further discussions and to get an action plan put in place. After long discussions and many appointments and counselling the next step was arranged.
A hysterectomy was booked.
I was booked in to have a hysterectomy at the age of 27. My periods got so bad and I could no longer live with the pain as it was affecting my ability to be a proper mum to my boys. I was forever having to phone in sick at work, debts started to pile up and loans was having to be taken out just to help keep the bills paid. We did look at Lendgreen on a few occasions. Enough was enough at this point. The day fastly arrived and before I knew it I was heading to the operation, nervous but I knew it had to be done.
A hysterectomy IS NOT a cure.
A hysterectomy is not a cure for Endometriosis as I am still suffering today, 8 years after my operation, 16 years after my first symptoms. I am still finding myself phoning in work unable to go in as I am in so much pain. OK the heavy periods are no longer an issue but the pain is still there. I am currently under the UCLH in London receiving treatment. I am currently receiving injections, a three-month trial of Zoladex. I am on this treatment which is an injection in my stomach once a month for three months to freeze my ovaries as my consultant has advised me that my Endometriosis is hormone fed. I had a hysterectomy but my ovaries was not taken out due to my age at the time. If this three-month trial proves to be effective and help me then it strengthens my case to have my ovaries removed.
I am currently on this Zoladex treatment and just had my second injection. Hopefully this has positive effects for me and helps to ease things for me.
I hope me sharing my Endometriosis story raises some awareness to help someone get the diagnosis they need or even helps to give some form of help or support needed. Just remember you know your body better than anyone else, if you feel something isn’t right then it probably isn’t….Don’t give up seeking for help.
Posted to help raise some much-needed awareness.