An Endometriosis Story - Part 2

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As we come towards the end of Endometriosis awareness month, we'd like to share part 2 of 'An Endometriosis Story' (if you haven't read Part 1 click here to read)

Endometriosis affects 1 in 10 women in the UK and takes on average 7.5 years to be diagnosed. In this two-part series, we'll share an account of one women's journey, following 14 years of misdiagnosis.

An Endometriosis Story - Part 2

HEALING THROUGH ALTERNATIVE METHODS

In this part, I share with you what it took to finally get diagnosed and what I did to help relieve the pain.

In part one I took you up to 2012, now in 2016, I started to experience excruciating pain in my body, I don’t know what to compare it to, but it’s the kind of pain where you can’t move, sleep or walk. Early 2016, I decided to stop taking the contraceptive pill as they were making me feel physically sick, my doctor changed the prescription and I started taking them again, I found that the brief break I took from the pill to take them again, the pain in my belly button started to increase.  

I took to Google, researched for hours and found a condition called ‘umbilical endometriosis’ The article was a recent publication and I found that I had many of the symptoms outlined in the report. (Primary umbilical endometriosis: a cause of a painful umbilical nodule Published in 2015  ) I finally had a name for the pain, so I went to the doctors.


FIRST OF MANY TRIPS IN 2016

I sat down in the doctor’s chair, with the information I had found, explained my symptoms again along with the names and locations of specialists in the UK. Once I had the name of the condition, I was able to find out how It could be treated. It turned out that my doctor didn’t like that I had done my own research, he dismissed my claims telling me in all his years (he’s 60+ ) of working he never comes across this case, he offered me antibiotics for my pain and advised that I should not search for anything on google.

My pain escalated, now my belly button was bleeding, I was advised my NHS direct to go to the hospital (I woke up to blood pouring out of my belly button) In pain, I took a Taxi to the Hospital, they offered me Antibiotics and said that it could be what I was suggesting, but there was nothing they could do – I would need to be referred by my doctor.

Now back to my doctors, I explained how the pain got worse once I started the pill,  he explained to me that ‘it couldn’t be endometriosis as the pill would reduce the pain’ but based on him never coming across this condition before, and his reluctance to look at the evidence I shared, I asked him if he could refer me to a specialist. 

 

ENDOMETRIOSIS UK AND THE FORUM

Maybe on another post, I’ll go into more details of the back and forth dialogue with my doctor, but for now, I’ll try to keep to the point. By now I had  found endometriosis UK and their forum of women sharing their stories, and had watched a succession of Youtubers with the rare condition and knew that a scan wouldn’t detect this condition – however My doctor was reluctant to listen to me and decided to send me for multiple scans, he refused to progress my case to an Endometriosis specialist center (even though there is one less than 1 hour away that I located with help from information on Endometriosis UK)

The delay in women being diagnosed and treated, from my experience is rooted in a lack of knowledge from doctors which results in years of women suffering and not being heard.

I was offered antibiotics and painkillers but refused to take them and was shouted at by my doctor while implying that I was being difficult. My logic is, if I don’t have an infection then why am I taking antibiotics and if I’m in pain, I want to know why so I can deal with it, not mask it with painkillers.

 

THE OPERATION

Eventually, my doctor agreed to refer me, only once I’d seen the local surgeon. I went to see the surgeon at the local hospital who said that ‘Endometriosis cannot be found that high up in the body’ by this point my period stopped (the first time ever) yet my belly button was bleeding – I was in a bad way, and the surgeon suggested that the cause could be pregnancy.

I wasn’t being listened to by anyone and was told the only way they’d be able to tell is if they cut the lump from my belly button to test.

Endometriosis specialists forums expressed the importance of getting any of this type of work done by a professional. In hindsight, I should have or could have gone to different doctors – but I didn’t.

I was offered surgery and put my name down to have the lump removed. That Christmas I spent most of the day in bed with a bleeding belly button. In excruciating pain, not knowing what to do and not feeling confident about the operation I was booked in to have in February.

My theory was, if he doesn’t even know that endometriosis can be found anywhere in the body, and he’s telling me it’s not what I think it is, then how will he identify it? How will he know what to cut and remove? An endo warrior friend told me the endo tissue has three different colours whereas most surgeons only identify one colour as a problem so I had little faith, and felt like I had no options.

Soon after my Christmas dinner, I was back googling how to heal this part of my body and I discovered an article on the benefits of Castor Oil Packs. I did 2 castor oil packs and my periods were restored and the pain was released. The belly button was still swelling each month, but I was mobile again!

I couldn’t face surgery in February as I felt like I needed to be mentally strong to go through the process. In the summer of 2017 I received a reminder letter and it was now time for me to start the process. I had my operation in October 2017 (on the day of the operation and on the medical notes the surgeon was still in disbelief and wrote that it was a hernia inspection) and the results showed that – yes, I did have Umbilical Endometriosis. My diagnosis took 15 years! 5 years since me really periodically researching.

 

WHAT I KNOW FOR SURE

If you think that you may be suffering from a hidden disease that’s affecting your life, go and get a second opinion, change doctors, you know your body better than anyone – trust it.

My Endometriosis story is not over, It’s a condition that you have to learn to manage as there is no cure (supposedly) but this year, I decided to go Gluten-Free and I now experience no pain! None at all.

THE THINGS THAT WORKED FOR ME (IN NO PARTICULAR ORDER)

  • I stopped taking the contraceptive pill, who know’s what really in them.
  • Castor Oil Packs (I only did this twice and saw a huge benefit, then once after) > click here to find out how to do your own castor oil treatment
  • Cotton Sanitary towels (keep your vagina free from synthetic materials pads or tampons)
  • Removed Meat and Dairy from my diet (reduce anything that’s acidic in the body that could cause inflammation – thanks to Dr. Sebi’s teachings)
  • I removed wheat from my diet, just meant learning to bake ‘Gluten-free’ which is a lot easier than I thought. 

All our bodies are different and what works for me may not work for you.

 

photo from  Endometriosis UK

SO WHAT IS ENDOMETRIOSIS?

 

“Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found outside the womb in the pelvis, and occasionally in more remote sites of the body.

Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur this lining will break down and bleed. This is then released from the body as a period.

Endometriosis cells react in a similar way – except that they are located outside the womb. During the monthly cycle hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding can lead to irritation, inflammation, pain, and the formation of scar tissue (adhesions).  Endometrial tissue can also be found in the ovary where it can form cysts, called ‘chocolate cysts’ because of their appearance. Learn more about endometriosis.” Source Endometriosis UK – 

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HELP RAISE AWARENESS

Endo March – March  24th 2018

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Originally posted on Vegan Woo