These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
In early 2012 I experienced a very bad flare-up of endometriosis. I did not know this at the time, I made numerous trips to the hospital, I was misdiagnosed multiple times and put on different medications.
Firstly, I was told I had pyelonephritis. Pyelonephritis is a condition of the kidney tubules when a urinary tract infection(UTI) is left untreated. The doctors had thought that because I had such severe flank (lower back) pain, and leukocytes (white blood cells) in my urine, that I had a nasty UTI which had spread to my kidneys.
I also had pain radiating up my abdomen, under my ribcage as well as in my hips and down my thighs. I was prescribed some heavy duty antibiotics and painkillers.
Being the compliant patient that I am, I stuck to the doctor’s orders and took my medication. After 3 days one would expect a hefty dose of Metronidazole to kill the nasty culprit. In my case, it didn’t and I was in even more pain than before.
I went back to the hospital and they changed my medication, putting me on a different strain of antibiotics for a week. This also did not help.
Simultaneously, I also treated myself to support the conventional medical treatment. Naturopathically, I treated myself with urinary tract herbs. I made myself a tea with Barosma betulina (Buchu), Arctostaphylos uva-ursi (Bearberry), Zea mays (Corn Silk), Crataeva nurvala (Crataeva).
I also took a Chinese herb mix with similar herbs and more. I was on a large dose of probiotics as my digestive system was not appreciating the antibiotics. I tried to eat what I could and stuck to bland soups and broths. I made tofu, brown rice and garlic congee which I ate plenty of. I made vegetable broths with everything I could get my hands on (carrot, beets, broc, onion, garlic, chilli, zucchini and more).
I finished my medication and did not feel much relief. I think that the opiate pain medication I was prescribed helped more than anything to be honest. However, I was completely bedridden and could not function on drugs like codeine and oxycodone. I was not, and still am not a regular consumer of pharmaceuticals, and these drugs really messed with me.
I was in an incredible amount of pain one night after my medication had finished. I might as well have gone through labour, I had severe contractions, in my abdomen and uterus coming and going in waves.
The moments they drifted and lessened were like precious seconds where I would gasp for air. I was dizzy, disoriented, hot and cold, nauseous, my abdomen felt so hot as if there were fire on the inside whilst being stretched, my back, hips, legs and groin were so sore. I felt like someone was gripping onto my organs, twisting and stabbing them.
I was panicking because I had no idea what was going on, and clearly the diagnosis was incorrect, because the treatment was completely ineffective.
Luckily my girlfriend was able to drive me to the hospital as I could barely stand. I laid down on the chairs in the Emergency Department waiting room. Not too long later in my semi-present state I heard a nurse call my name. I struggled to stand, I got up and was very dizzy as my blood pressure adjusted, they took me in.
Thankfully, a better doctor treated me that day. She listened to me, she questioned me thoroughly and examined me more. Despite the amount of pain I was experiencing, she was adament about conducting a pap test and pelvic examination. She prepared her apparatus and could not insert it. The amount of pain and stress I was in caused my entire body’s musculature to be extremely guarded, contracted, and in a state of hyper-alertness so to speak. However, she conducted a pelvic examination, felt around, and said that she was almost certain that I had pelvic inflammatory disease.
I was put on more antibiotics. Different ones this time. Two rounds of two different types. I was struggling to say the least. I was told that the symptoms should reduce after a couple days of treatment. I was 7 days into my therapy and still in so much pain.
I went to a wonderful women’s clinic where a doctor listened to me and followed up with another pelvic examination. She said that I was definitely on the correct treatment and that sometimes women experience chronic pelvic pain forever from pelvic inflammatory disease. Great. So I let the medication run its course, and I continued to support this with herbal and nutritional medicines.
After the treatment I felt better but symptoms kept creeping up on me. I knew something wasn’t right. I went to a different female GP who took some swabs. The results were normal, there was normal cervical microflora present, however there was one strain that she felt she had to treat. This strain exists normally in women, however she felt that because it was slightly elevated in my case, it was better to treat it.
I should have known better. I was put on more antibiotic therapy. Looking back, now I can almost confidently say that this swab was probably slightly abnormal due to the large amount of antibiotics I was being treated with beforehand. It surely would have caused a microflora imbalance. Anyway, I went with it because I was desperate, in pain, and nothing was working.
Nothing was working because nobody had searched for the cause of my condition. The reason why I was experiencing horrific symptoms for so long was because the cause of the problem was overlooked.
Anxiety increased, pain continued, living life was exhausting, emotional, and stressful. The symptoms kept on coming and I stopped searching for causes. Because I got told that PID can cause chronic pelvic pain forever, and I linked my symptoms to that. I eventually got referred to get an internal ultrasound. It caused me pain, and revealed no answers.
$300 later, the gynaecologist performing the ultrasound and told me that she couldn’t see anything, to keep taking painkillers, and good luck finding out why I was so ill.
I went to all my appointments alone just in case I would be told something extreme and/or shocking, I prepared for the worse. I would have preferred to digest the news on my own before telling people in my life.
I left my appointments extremely discouraged and disappointed. The ultrasound appointment was one of the worse because on top of being told absolutely nothing, paying $300, and being seen by an awful doctor, I was poked and prodded again. I left the appointment emotionally and physically hurt.
My ordeal started in summer and now it was winter. I walked out of the building and it was a freezing cold, sideways-rain and extremely windy kind of day. It was one of those days where the wind was blowing so strongly it would make your eyes water and tears would get blown all over your face. The icy cold rain drops also fell on my face and were somewhere amongst my tears too.
I usually hate those days as I can’t stand the cold. But for a moment, that day felt ok to me as my tears of heartache mingled with my wind blown tears and the rain. In the harsh reality of everything that had occurred and had led up to that moment, these droplets of what was essentially water, and molecules of life represented such polar opposite forms of existence.
These tears that were brought about out of hurt, discouragement, pain, disappointment and sadness, met with rain from the heavens and coexisted peacefully together as they scattered abstractly all over my freezing cold face. Over my distinguishing features, by which people knew me, recognised and identified me. I continued to walk.
Nobody who I walked past would know, these were just the tears you get when your eyes water from the wind right? Right. Just like everybody else’s.
I continued to have symptoms in my lower abdomen, ribcage, back, hips, legs. I was nauseous after meals, my stools were inconsistent in frequency and form, I felt depleted to say the least. I used herbal and nutritional medicine to aid with the symptoms, but because I was not aware of the underlying cause I was not able to get lasting relief.
Because of all my digestive symptoms, I started to wonder if all this was a result of an underlying GIT (Gastro-intestinal tract) issue. I wrote myself a functional pathology referral for the most detailed Complete Digestive Stool Analysis (CDSA)you can get. Functional pathology differs to conventional pathology, they will assess various bodily functions in different depth and detail and conduct tests which conventional pathology won’t.
My stool test, a Level 4 CDSA explored: macroscopy, microscopy, bacteriology, mycology, parasitology, biochemical markers including pancreatic function, absorption of fats, carbohydrates, protein, pH, and short chain fatty acids. It was very in depth and revealed that at that time I was seriously malabsorbing. Nothing was being digested. I also had dysbiosis, a term used to describe abnormal bacterial balance in the gut, and the presence of blood in my stools.
More “What ifs”..
- Bowel cancer
- Ulcerative colitis
- Gall stones
- Gastric ulcers
Back to the doctors I went, she was surprised too. Because my pain was predominantly on the right side, she referred me for an abdominal ultrasound to check for gallstones. Ultrasound revealed NO GALLSTONES. Relief. One “What if” ruled out.
I then got tested for Helicobacter pylori (H. Pylori) , a nasty bug that can reside in your stomach and cause gastritis/ulcers. This too was negative.
We also checked pancreatic enzymes as a marker for pancreatitis, this too was ruled out.
Time for a colonoscopy and gastroscopy. She referred me ASAP to a gastro-enterologist because the presence of blood in my stool was rather alarming. A few days later I met with the specialist and he said that I definitely needed a colonoscopy and gastroscopy.
And it continues.. You can read more at kimberlydhyani.tumblr.com
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