I have been meaning to write this post for awhile now but felt that I couldn’t speak about it because I didn’t want to discuss it or write about it until I got my head round it first. Although I was diagnosed with endometriosis in 2013, I am still finding out new things about it, new ways to cope with the pain, dietary changes, different pain relief and what to discuss with your consultant.
By sharing my endometriosis story, I am hoping that it will help other endometriosis suffers or encourage you to go to your GP if you feel you have the symptoms. I’d also like to point out that I am no ‘expert’ in endometriosis and may not state facts correctly (like I said, I’m still learning!). However, the information below have been gathered from the NHS Choices website as well as the Endometriosis UK website.
Also March 2016 is also Endometriosis Awareness Month and I hope by sharing my endometriosis story will help bring awareness to this chronic and debilitating condition.
Endometriosis affects 1 in 10 women. You probably know someone who suffers from it but if you’re like me, you hadn’t even heard of it until you were diagnosed. The frustrating thing about being an ‘Endo Sufferer’ is that its not discussed, doctors aren’t fully informed and there’s no cure. Annoyingly, as Endometriosis is very personal, each woman has a different experience to the other which means it’s very hard to find treatment. What works for one woman, won’t work for another.
So what is Endometriosis?
Endometriosis is when cells that behave like the lining of the womb (endometrium) is found outside the womb. Every month, these cells react in the same way to those found in the womb, building up, breaking down and then bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
The most common places it can be found is on the ovaries, the fallopian tubes, the bladder and the bowel to name but a few. As mentioned above, symptoms can vary from woman to woman but the most common symptoms are; painful periods, heavy periods, pain in the lower abdomen, pain in the pelvis and lower back etc. For me, I have severe pain in my ovaries, my womb and my pelvis. Also the amount of endomtriosis does not correlate to the pain you experience. For example, a small amount of endometriosis could cause as much pain and discomfort for someone with large amounts of endometriosis.
Treatment for Endometriosis?
Sometimes it’s difficult to treat endometriosis as symptoms vary. One of the main ways of diagnosing and treating endometriosis is by performing a laparoscopy. A laparoscope is inserted through a small opening in your skin and as it as a tiny camera, it is able to transmit images to the specialist so they can see where the endometriosis is. During this procedure, the specialist can surgically remove patches of endometriosis tissue to improve your symptoms and fertility. However it’s worth mentioning that your specialist can only remove the endometriosis that he sees. Sadly this means that some endometriosis can be left behind.
You can also ease endometriosis symptoms through hormonal medication. Some women find relief by taking the combined pill, having a coil fitted or by a medically induced menopause. The medically induced menopause is brought on via monthly injections.
For me, I have had 2 laparoscopies and I am awaiting another. On both occasions I have had endometriosis removed but sadly, my relief from endometriosis has been short lived as the pain and discomfort have come back quite quickly due to the endometriosis returning. I have tried hormone medication such as the pill, the implant and the monthly injections which has given me a medically induced menopause. Sadly for me, this has not helped with the pain which is why I also take daily pain relief ranging from paracetamol to tramadol and when it’s really bad; morphine. Sometimes morphine hasn’t even helped which has resulted in my boyfriend calling 999 and me being admitted for a few days until the pain subsides.
My Endometriosis Story
My story starts in March 2013. It was 3 days before flying to New Zealand to celebrate our lovely friends getting married. I had gone to the doctors because I was having severe abdominal pain but when my doctor inspected me she asked me to go straight to A&E as she assumed I had appendicitis. Understandably I was devastated as this meant I could not fly to New Zealand, but after waiting over 7 hours to see someone, the doctor at A&E quickly inspected my abdomen, confirmed I had a stomach bug and would be OK to fly. Obviously I was over the moon but I was still worried as the closer it got to the holiday, my pain was getting progressively worse.
On the day of the holiday we boarded our flight with Singapore Airlines and got ready for the 12 hour flight to Singapore. It was during this flight that the pain became so severe that I began throwing up and kept throwing up. At this point I was screaming so the air hostesses decided to ask if there were any nurses and doctors on board the flight. Funnily enough they were 6, so a lovely couple (both doctors) stepped forward and came to my aid. I was also given a makeshift bed with a pillow and a duvet while the air hostess requested for someone to collect me in Singapore and take me to hospital.
When we landed, I was taken to an ambulance which took me to Raffles Hospital as they assumed it was my appendix again. I had scans after scans which confirmed I had cysts on my ovaries and were given lots of pain medication. They assumed the reason I was being sick was because my body was in so much pain. Whilst in hospital, Mike tried frantically to find another connecting flight to New Zealand but all the flights were either super expensive or days after our friends wedding. However, someone from the Raffles Hospital receptions desk gave us a message that someone from Singapore Airlines will be waiting for us at their help desk. When we arrived at the help desk they told us that they had found an alternative flight for tomorrow and it was free of charge!
Regardless of the little medical hicuup, I still had the best time of my life in New Zealand, especially seeing my two favourite people get married! New Zealand is absolutely breathtaking and beautiful but it’s also gluten free friendly! Everywhere catered for coeliacs so I never had to worry about food or finding a place that provided gluten free alternatives.
When we arrived back home, I made an appointment at the doctors to tell them about my ovarian cysts. Thankfully, the doctor I saw felt that my symptoms mirrored the symptoms of endometriosis. (I say thankfully, as for most endometriosis suffers, it can take months, if not years, to be officially diagnosed with it). So my doctor referred me to a gynaecologist, gave me more pain relief but I was asked to do a Google search on endometriosis to get more information about it which I found a little unsettling!
After having lots of scans, my gynaecologist suspected I may have endometriosis, so he booked me in for a laparoscopy in October 2014. During this procedure, he found the endometriosis and surgically removed it by cutting it out or burning it. I was so happy at the thought of living my life pain free that it absolutely devastated me when I started to experience pain again because the endometriosis had returned (this is common with endomtriosis). So I was booked in for another laparoscopy but until then, I was given a medically induced menopause as some women had found some relief from this. Sadly, being on the menopause didn’t help at all and it was during this time that I was rushed to hospital twice.
In August 2015, I had my second laparoscopy and my gynaecologist confirmed that my endometriosis had returned and that he had removed it. He also stated that I had quite a lot of scar tissue on the left hand of my womb but when he tried to remove it, I began to lose lots of blood. Thankfully my gynaecologist stopped the bleeding but I did wake up white as a sheet but grateful that the surgery was successful. However, a few days after the surgery I began to feel very, very unwell. I was sweating loads, in tremendous amounts of pain and feeling like I had been ran over by a bus. So I went back to A&E and after a few tests there I was told that I had an infection. It took 5 lots of different antibiotics to fight this infection and various scans but once I’d treated the infection and I didn’t feel as bad, I could still feel endometriosis pain and the pain in my pelvis was beginning to get worse. My gynaecologist felt that the endometriosis had returned and because the pain was getting worse, he also referred me to a pain specialist to discuss ways of managing and coping with chronic pain.
To conclude, I am still in tremendous amounts of pain and I am currently waiting for my appointment for another CT scan, another appointment with the pain specialist and an appointment with my gynaecologist to discuss the possibility of a third laparoscopy. I am also waiting for an appointment for physiotherapy to see if that may help with the chronic pain in my pelvis. That’s the thing with endometriosis, there’s a lot of appointments and a lot of waiting around. However, I am still trying to remain positive but, as I’m sure other endometriosis sufferers feel, the longer I wait, the more frustrated I feel.
Helpful Links for Endometriosis
If you feel that you may have endometriosis or have some of the symptoms, please speak to your GP. Alternatively, you can visit the Endometriosis UK website who have a really useful page about ‘Getting Diagnosed with Endometriosis‘. It can take quite some time to get a diagnosis as the symptoms of endometriosis are quite similar to other conditions.
I would also love to hear from you whether it’s to rant about endometriosis, if you know of any useful treatments or ways of coping or to simply discuss the ‘ins and outs’ of endometriosis. Below I have listed ways to contact me but you are more than welcome to leave a comment below.
However if you are a sufferer but would like to speak to somebody else about your endometriosis, the Endometriosis UK have an amazing and useful Helpline service, which I have used a few times myself. As the helplines are manned by volunteers who are also ‘endo sufferers’ they can’t give you any medical advice but can talk about their own experiences with endometriosis. If you do want to contact them, please check their opening times before you call to see when the service is available.