Living With Endometriosis.
It is March 1st which marks the day of Endometriosis Awareness Month. Throughout the month we will be sharing true stories, news and advice from experts, as well as addressing ways in which we can learn, and become more aware about this terribly debilitating disease.
So, what is Endometriosis?
Endometriosis is a disorder that affects women of reproductive age and has been linked to infertility, chronic pelvic pain and other gynecological issues. It occurs when the tissue normally found in the uterus begins growing outside of it. Endometrial tissue can be found on organs such as ovaries, fallopian tubes, bladder and even bowel. In some cases endometrial tissue can even be found on other body parts such as lungs or brain.
The cause behind this condition is still unknown but there are several theories that suggest hormones, genetics, immune system malfunctioning or environmental factors may play a role in its development.
Symptoms associated with endometriosis can include extremely heavy bleeding during menstruation , painful menstrual cramps that worsen over time; abdominal bloating and fatigue, pain with intercourse, and spotty bleeding between periods. This level of pain experienced over an ongoing period of time is exhausting and can also affect mental health.
This is first of our true stories from Endo Warrior Ashleigh as she shares her own experience and journey.
Ashleigh’s Story
When did you first notice that things were really difficult for you with your monthly cycle? What were your first syptoms of Endo?
I remember being at school, so I must have been about 13/14 at the time. I remember having really heavy periods and being in pain throughout the month, not only when I was due on but it could happen at any time. I had to have a hot water bottle at school and ask the cafeteria to top it up for me. I remember thinking “Why am I suffering like this? Am I just a wimp? Maybe everyone feels like this but they are stronger than me?”
I went to see a doctor several times who eventually sent me for external scans. Although not before they made me do several tests for STI’s despite me telling them numerous times I still hadn’t had sex… they didn’t believe me. I remember one doctor actually calling me a liar, however, thats a story for another day.
Once they did the external scans they found nothing which is very common with Endo. I had to push and push and push to have a laposcopy which they finally did when I was 18.
The doctor who performed the laposcopy had no empathy at all about the situation and told me I had Endo but they had burned it off now so I should be fine. I later found out that this was not the case. They do not actually burn this off, they place a laser CLOSE to the Endo cells and burn it there as they can not burn directly onto the Endo cells. The Endo cells sit on your organs so they do it near or around and hope that it catches it. This gave me a relief of around 6 - 8 months.
How long did it take for you to receive a full diagnosis?
4 Years
What options were offered to you on the NHS and did you feel you were being treated well around your condition?
I had one Laporoscopy on the NHS, I tried to go back to the doctors but they didn’t think it would be effective so I went private to see an Endo consultant. At this point they did internal and external examinations. The internal examinations hurt so much, not even going to go into detail about the humiliating fact of having everyone and his son looking at your area. The consultant didn’t think I had it that badly but said I could go on his NHS waiting list. So, I did, aaannnd he did another laporoscopy, he didn’t even come out after to explain anything, I just got told by the nurses the same thing I heard when I was 18, at this point I was 20.
He then arranged for a further consultation. I went alone this time thinking it would be an easy consultation and that we were making progress. However, when I arrived he sat me down and said if it wasn’t for him I wouldn’t be able to have kids, but he had worked his magic now so I should be fine… What? Who says this to a 21 year old girl. At this point I had no idea fertility was even an issue when you had Endo.
At the time, I thanked him, like you do, then walked away and cried the whole way home. The laporoscopy doctor then came to me and said your coil (the contraceptive I was using) was going to expire in two years time, shall we take this out for you and put another one in while you are under?
I had chosen this particular contraceptive as it has the smaller amount of oestrogen in it. However, the doctor didn’t take my original coil out, instead he just added another one, so, for 3 years I had two coils in me producing additional oestrogen that could have actually sped up my Endo to the point where it became completely debilitating for me.
By this time I was 23.
Laporoscopy’s do help but they have a shelf life as the Endo cells appear with every period. The lining then sticks to other areas of your body, so, it removes the Endo but new Endo sticks there like a muscle memory. It can stick anywhere, from your ovaries to your lungs.
For you what would you say have been your lowest moments with this disease?
When I was 22/23 I ended up taking a daily cocktails of drugs to stem the pain this inculded paracetamol, narproxen, codean, nurofen + & tramdol. I was taking this daily to stem the pains I was having. I reached out to doctors who didn’t want to know… I was in so much pain.
I had no idea there are elements in your diet & hormones that can affect the growth of your Endo. For example Endo thrives off oestrogen, which is in far more stuff than you realise inculding milk and the contraceptive pill. I was eating and taking both. Gluten also has an affect on Endo for some reason.
I did some research and found specialists that I didn’t even know exisited. Maybe I was naive but nobody told me there where other people who were far more advanced than those who may not be available on the NHS, that there were actual specialists who could help.
This one doctor (DR TREHAN) was like a gift sent form heaven. However, he was very expensive, but, off to Harley street I went. Again he did all the tests before hand and didn’t think I would have that much Endo but was happy to book me in to do a different type of surgery …£15k this costs and I had to travel up north I cant remember where I think Northampton.
This surgery actually shaves off the areas that are effective so they grow back new and completely clean with no Endo scarring, no endo & no scaring from the pervouis laps. It was a very long operation 8 hour I was under and when I came too I was in a right state. He came to see me the next day and told me he was shocked at how much Endo I had from my ovaries, to my womb, to my pouch of doulags, he also thinks I have it inside the womb itself but he couldn’t go into the womb to check this as that would stop me for being able to have kids in the future.
This op lasts between 5-7 years I am in my 7th year now and my Endo is starting to come back I feel the pains they are different and I know now. I had a baby which put Endo in remission so I think they gave me an extra year of no real pain but we will see what happens next.
What would you like others to know about Endometriosis that you feel is misunderstood?
I had no idea untill I looked into it myself that Endo is one of the leading causes of infertility I just didn’t know this was such a big deal. I had to go and see a specialist to have my eggs counted which I did and I have a low count. I only did this by chance because of some reality show where a girl had Polycystic ovaries and I knew from my own research that they are very similar.
I didn’t know there were different options for myself other than just the Laporoscopy’s. I remember having GP’s not even know what Endo was when I would go to see them or how could they help me if they had no idea what it was themselves. I would see them googling it on the computer as I was talking. I would say ensure you make the doctors aware that you know they need to push harder for you to find out what is going on. They have a duty of care.
A massive thank you to our Endo Warrior Ashleigh for sharing her story in the hope she too can help others like her raise awareness.
Much has been done and the awareness is growing but if you would like to show support, this month is definitely a time where we can all shout about it. It is estimated that in the UK alone there are 1.5 Million people who are suffering. If we can help recognise symptoms we will help people in schools, the workplace and of course directly within our family and friend groups.
As you can see from the story above Ashleigh had to do much of her own research with little direction from doctors at the time. Let’s stand by our Endo Warriors and wave a bright yellow banner as we fight alongside them against one of the most destructive and painful diseases in women’s gynecological health.