My Six Year Battle: Endo and I
Before beginning my story I think I need to firstly explain what the hell Endometrosis is and its symptoms as it's not as widely known as it should be!
"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 elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape" - Endometrosis UK
Symptoms include the following:
Pain on Ovulation.
Pain during external and internal examination.
Pain during or after sex.
Pelvic, Leg, Back Pain
Symptoms of IBS during Period.
Pain passing stools/urine.
Heavy random periods/loss of old blood at beginning of new period.
Please, before I delve into my story, if any of these symptoms become alarmingly similar to your experiences, book an emergency doctors appointment.
At the age of 14, puberty hit like a tonne of bricks, like it did to all the girls in my year. Although I was classed as a late starter of the year, we were all hormonal wrecks. Not many of my class mates if asked now could remember their first period, could you? Me on the other hand, would never forget it.
I remember, it was a normal Spring weekend, I didn’t have anything planned accept work as a Saturday girl in a local café. However, I had very intense stomach aches, my lower back was weak, and I struggled to sleep that Friday Night. I was tossing and turning, cradling a Hot Water Bottle. Waves of nausea would rise and fall but as morning approached the nausea got the better of me and I felt like I vomited all the food I had ever consumed in my life. Two hours later I was stuck on the toilet with severe diarrhoea.
Concerned, my mum rang work for me to let them know I wasn’t in the best of ways and rang the doctors for some advice. They suggested letting me sleep, monitoring my temperature and wait 48 hours and see if the sickness has subsided, if not then they would come and see me. They didn’t want to increase the risk of infecting others within the doctor’s surgery if it was flu. My Mum nursed me and made sure I was drinking plenty of fluids. Saturday passed, Sunday morning was greeted with sever tummy pains, pains that I never encountered before. At this point, my Mum became more concerned. As she was ringing the Walk In Centre (our GP surgery was closed) I rushed to the toilet.
Blood. So much blood I panicked. I whimpered for my mum to assist me. She gasped, stopped in the door way and as a proud mum does exclaimed “oh sweetheart, this was all because you’ve started your period.” It was strange seeing your mum proud to see you in pain but at the same time mourning the fact their first daughter had become a ‘young woman’. Periods then became one of those dreaded ‘womanly’ things. Something I had eagerly anticipated for in order to catch up with my friends. however, I had no idea how many problems it would cause in the long term.
After my first period, the same pattern would occur. First the back pain, then the waves of nausea. These were my ‘flags’ to let me know my period was due. Except I would be at school and have a sudden wet sensation in the downstairs area, like I had just wet myself. I would ask to be excused from my classes, which rarely they disapproved off unless you were notorious for skipping classes.
Blood. So much blood. It went through trousers, tights, skirts, two pads. Anything form of hygienic protection, was ruined. I would panic and ring my mum begging her to come and pick me up from school. As soon as I got home, I would be sick and would be of school for a couple of days until my sickness died down.
Those days off would consist of me being in so much pain. My Mum felt helpless and would try and give me as much paracetamol and ibuprofen she could. Medication followed with warm baths, hot water bottles, gentle massages on my lower back with lavender oil. Nothing was helping. Mum soon brought it to my attention that this pain wasn’t normal for periods. Mum started at the age of 10 and never remembered feeling the pain I was describing. Mum could tell when I was faking being ill, don’t deny you never tried getting a couple days off school, we all did, she knew this was serious. Mum could see the pain in my eyes and hear it in my voice. So off we went to my GP to discuss what this might be and find some short-term pain relief.
Contraception. My GP prescribed Microgynon 30, it was a contraceptive pill which you took every day but for a week you took a sugar-based pill in order to induce your periods. It was said that this method would 1, protect me from pregnancies and 2, control the pain. Both expectations were not met at all.
The pain became so intense I would scream and become paralysed, the pain mainly affecting me at night. It was endless. It soon became apparent that this form of contraception wasn’t effective for me as in the new year of 2017 I suffered a miscarriage of a child I was unaware I was carrying due to the pill still inducing my periods. It came to light that because I had been on the pill for too many years, it had become ineffective. Not only that but it made me severely depressed, suicidal and leading my psychiatrist to misdiagnose me because the true issue was being hidden by these bouts of depression and suicidal thoughts.
Everything became too much, and I was back and fourth to the doctor with bowel problems, kidney stones, UTI’s, bladder infections and fevers. I was going to Physiotherapy to help manage the pain in my lower back and exercising on a regular basis as recommended by my Doctor and Physiotherapist. I was doing everything recommended to me by all professional directions.
Anti-biotics after anti-biotics, scans after scans. I soon became demotivated and exhausted from not being listened to and being told, “none of your symptoms are linked and you were on of those girls that was sadly blessed with bad periods.”
After my miscarriage I decided to get a more intense form of contraception. Speaking to my GP and discussing my previous issues around my periods and the pain I experienced, the Mirena Coil (the hormone coil rather than the copper coil) was the best option. I would have it inserted in through my cervix, the coil would remain in my uterus for three years and then have it replaced if I decide I’m not ready for children. The hormones within the Mirena Coil would reduce the inflammation of my Uterus which planned to reduce the pain and help regulate my periods. “Apparently”.
IT DID NOT.
I was about to fly to America for two weeks and it had been at least a month or so since having the Mirena fitted and the pain was becoming unbearable once again. I couldn’t function, I would have contraction type pain due to the uterus contracting to push the coil out as it was still foreign object to my body. The back pain got the point where I couldn’t get out of bed. Sex became near enough impossible and my vagina was so sensitive I struggled to go to the loo. Blood became a frequent occurrence in both my stools and my urine.
Once again, my mum become concerned and demanded that once I returned from America I was to go to the doctor and ask for an ultrasound to check the position of the coil as she feared it might have perforated the wall of my Uterus. So, when I had returned from America I did exactly that. An Ultrasound was given to me three weeks later and it squashed the assumption that my Mirena Coil had moved or punctured my Uterus wall. Perplexed with the results, my GP gave me codeine to manage the pain for short term relief. However, I ended up relying on codeine for a year and a half. The recommended duration for Codeine is only six months.
Months passed, I was administered to hospital numerous times. Suspected Sepsis, Prolonged Fever, Bladder Infection, Appendicitis or Ovarian Cysts. The basis of admission varied each time but every time the tests came back clear and I was told…
Wait for it..
“YOU JUST HAVE BAD PERIODS, THERE IS NOTHING WRONG”
Furiously, my Boyfriend and I called up a different doctor’s surgery four weeks after I was discharged last and explained my situation to the leading GP there. She told me to do a quick urine sample and read over my notes. Disgusted at the fact I had been to the doctors and hospital continuously for 6 years with the same reoccurring problems, she referred me to a Private Specialist. Kindly, she sat me down and explained that she suspected that it could be Endometrosis. Liam (my boyfriend) and I looked at each other confused, unaware of what this condition was. The doctor summed up the symptoms and what Endometrosis was, she rubbed my shoulder and promised me that I wouldn’t go much longer without answers and apologised for the lack of investigation.
Two months later I was given an appointment with the leading Specialist in Endometrosis and reproductive diseases at New Hall Hospital, just outside of my home town. I walked in, briefly explained my problems and how it’s affected my life and the specialist looked at me, again like the other GP, apologised and insisted she performs a Laparoscopy. This consists of three small incisions being made in your belly button, your side and just above your ‘knicker’ line. Cameras and claw like scissors would be inserted with a metal pole that can burn off adhesions. 15 minutes into the consultation I was signing consent forms and put onto the waiting list.
2 weeks after my consultation, I was contacted by the specialist and given an emergency surgery.
It’s been a week since the surgery was conducted and it was classified through the Laparoscopy that I do indeed have Endometrosis. It was on my bladder, outside of my uterus and my bowel. There was certainly six-years’ worth of sticky tissue around my reproductive organs. However, my battle wasn’t and certainly isn’t over.
Further surgery is needed in order to remove the Endometrosis that is deeper underneath my uterus, near my rectum (which isn’t your bum hole may I add…that’s your rectum, I am containing some dignity here) and it has wormed its way into my bowel and formed a mass, so I will need some of my bowel removed.
Over the week I’ve been incredibly sore as my surgeon/specialist really did rummage around, the carbon dioxide they fill your tummy with, to make it easier to see your organs is very uncomfortable and creates intense pain in your shoulders. I did manage to tie my own shoe laces and walk up the stairs without wincing two days ago, so I’m winning in life (it’s the little things in life). My stitches were removed today and I’m feeling lighter and less in pain. I’ve already had my period within my first week of recovery and the pain was less intense and felt normal, normal tummy cramps and moodiness.
Liam was very grateful for that as much as I was. I didn’t act like Emily Rose when she was possessed by the devil, just acted like a brat instead.
The thing is, I wanted to make this post to make other young girls realise that YOU know your body better than anyone else in this world.
Painful periods are NOT NORMAL.
Painful sex is NOT NORMAL.
Don’t let your doctors say this to you if it’s a regular occurrence.
Prolonging the diagnosis process can cause massive complications. I was lucky enough to have mine diagnosed at a young age before it managed to affect my ovaries and my fertility.