My experience with endometriosis


Healing, Resources & Tips, Wellness / Monday, October 7th, 2019

As you may or may not have heard, the world is finally waking up to this horrible disease, and the fact that many women are in permanent, agonising pain. Not just when they get their period. But all day, every day. It’s a little crazy that endometriosis – a condition that affects approximately 1.5 million girls and women in the UK (though I suspect millions more) – is only now being talked about publicly, but then again, it was only a couple of years ago that we had the Me Too movement, which broke the silence on women talking about their sexual abuse experiences.

Society is slow on the uptake.

What exactly is endometriosis?

Quick catch-up for those that don’t know what endometriosis is. Endometriosis is a condition whereby the lining of the uterus (called endometrium) actually comes out of the womb and attaches itself onto other organs – be it bladder, colon, lungs, stomach, anything. Christ, it even travels up to your eyes and brain. It’s mad as hell.

Once the uterine lining is outside the uterus, it attaches to various parts of our abdominal cavity, and these secondary sites then have their own periods. So you’re effectively bleeding on the inside. No wonder we’re in crippling agony most of the time.

But nobody really knows what causes it. This in itself is maddening. Why on earth do we not know?!

My story

Since I was 14 I’d had terrible period pain. Each month, it would be so bad that I’d be vomiting and have diarrhoea and would have to take a day off school. If it came whilst I was already at school (the worst), I’d have to lie down in the sickbay until someone could pick me up and take me home. There was absolutely nothing that would touch that pain – nothing the doctors gave me, anyway. A hot water bottle and sleep were the only cures.

I remember once having nobody to pick me up so I had to walk home by myself. I blacked out and woke up on the pavement near a main road, sweat trickling down my school shirt. I practically crawled home and into bed.

This bizarre way of life went on for the next 19 years, despite various doctors’ appointments, where I was told it was “just bad PMS”, and “having a baby would probably sort it”. It turned into a strange permanent pain in the hips, pelvis, lower back, uterus and cervix. Not just during my period either, but all. The. Time. Getting out of bed would be so painful I’d have to roll onto the floor. I had a Mirena coil fitted so I didn’t bleed at all. And in hindsight, that was a terrible mistake. The doctor should never have fitted it, and I was too naive at the time to know better.

How is it diagnosed and treated?

I didn’t know I had endometriosis until I was 33. I didn’t even really understand what it was. I went to see a consultant at my local hospital, and after talking to him about my symptoms (painful sex, painful periods) for all of 10 minutes, he sat back with his hands on his head and concluded that he thought I had endometriosis – a classic case, he said – and he’d like to book me in for a laparoscopy.

This is basically keyhole surgery performed under general anaesthetic, where your abdomen is inflated with air while a small camera looks around for signs of the endometrial tissue. If any is found, a laser then gets to work burning it off. There’s no sure way of diagnosing endometriosis until you have a laparoscopy, which is a pretty high-risk strategy for anyone. Even an ultrasound can only hint at the disease but not diagnose it fully, seeing as the endometrium doesn’t show up on the scan.

So at 33, after the aforementioned laparoscopy, I woke up the next morning after a horrific night’s sleep, and was told that they had indeed found patches of endometriosis on my bladder, colon and outside of my uterus wall. I was actually relieved. Imagine having to go through all that, and then being told they’d not found anything! What then?! Not only would I have to go back to square one wondering why I’d been in pain all this time, but now I’d have got to recover from the surgery as well.

Because they pump air into your abdomen, it’s a very painful operation to recover from. Nobody tells you this, so I’m telling you now. I wasn’t very prepared for the aftermath. My night in hospital was awful – I got no sleep because my shoulders were in agony from the air that was trying to leave my body and travelling north to get out. My womb and various organs were in pain from the laser surgery, and my body ached from the general anaesthetic. I rang the nurses at 4am to ask for a drip.

I was only allowed one night in the hospital, and was sent home the next day with some prescription painkillers to see me on. Honestly, I felt like I could have stayed in that hospital bed for at least a week to recover properly, but this is sadly not the world we live in. Apparently most women don’t even get a night to recover before being sent home. This is a “minor operation” in NHS speak. Nothing to worry about. Easy peasy, lemon squeezy. Job’s a good’un.

I went to stay at my mum’s house to recover, which took a month. Again, nobody prepared me for this.

Prognosis and management

After another meeting with the consultant a few weeks later to assess my progress, he advised me that this little party we’d just had might need to be an annual occurrence, as there really was no known cure for the disease, only the management of it. You could have slapped me round the face with a tampon, I was so dismayed.

I was put on the progesterone-only pill and told not to take a break, so no periods, reducing the likelihood of my womb lining going walkies again.

I have to say, I did feel better after the operation, once I’d had time to properly recover, and was glad to know what had been causing the debilitating pain and sickness each month since I was 14. But emotionally and mentally I was in bits. Not only had I been told that I might never have children, but I was also absolutely gutted to know that there “wasn’t a cure”. I felt weak and disempowered and devastated. Many women opt for a hysterectomy to help get rid of the pain. Sometimes it works, sometimes it doesn’t. And obviously, this means you can no longer have children.

The more I spoke out about this with my female friends, the more I heard others were in a similar predicament. It was crazy to hear how many women are living with this disease, and yet nothing is really being done about it. I got angrier and angrier that it wasn’t being taken seriously and the voices of those suffering were not being heard.

Cut to the “Me Too” movement, and the huge surge in awareness of female issues generally, and I couldn’t help but wonder that if any man had to experience just one day of that pain, the condition would have been cured decades ago.

I decided to take matters into my own hands and do some more research, primarily into alternative remedies.

Finding a cure

Around 11 years ago, in 2008, I had the good fortune to stumble upon a yoga retreat in Thailand that has become a very meaningful place in my life, not just for the people I’ve met there, but for the things I’ve learned. On that trip in 2008 I came across a mind-blowing book called The Cure For All Diseases by Dr Hulda Regehr Clark. Fascinated by the title, I read it cover to cover, and whilst at the retreat, I embarked on a herbal cleanse as I had picked up a Giardia parasite from hiking in Nepal. So this was good timing. I did tons of research into parasites, flukes, worms and invaders of all descriptions, and it opened up a whole world of alternative medicine to me. I continued to learn and educate myself about the topic over the coming years.

I went back to the book to see if Dr Clark had anything to say about endometriosis, because she had something to say about most ailments. And lo, she did! According to her, endometriosis is caused by the presence of one or more intestinal flukes in the uterus (Gardnerella, Clonorchis, Eurytrema) who then trail the uterine lining out via the ovaries. These are often followed by smaller flukes and their entourage of bacteria (Salmonella, Proteus, Chlamydia, Trichomonas, Campylobacter, etc).

This all made sense! Now bear with me here, because I can imagine your reaction. It was my reaction 11 years ago when I first started reading about this stuff. But as I’ve followed Dr Clark’s work for a long time now, nothing surprises me anymore. Western medicine is still scratching its head about many diseases, yet all the answers can be found elsewhere, and it’s our responsibility to educate ourselves and heal ourselves. I really believe that.

How did the flukes get there? And what were they doing? Well, Dr Clark says that our wombs are polluted with all kinds of toxins and solvents. Not hard to imagine in this day and age, when most things are packaged in plastic or metal, and our environment is a noxious cocktail of chemicals that can include formaldehyde, fibreglass, arsenic and asbestos. If you do anything – get your metal fillings replaced immediately, stop drinking out of plastic bottles, and avoid metal jewellery.

So I bought the herbs (wormwood, black walnut and clove), did the program, and even embarked on the frequency generator treatment.

The morning after I started on the herbs, I woke up pain-free for the first time in years. My lower back no longer felt like it had been beaten with a spanner. My hips no longer creaked and groaned. My womb no longer felt like it had been stabbed, and my cervix no longer sent shooting pains up my abdomen. So far, so good.

What next?

I continued for 14 days and felt better and better.

Now, the herbs are strong. And I don’t recommend anyone taking them for too long. So I had a little break and got on with my life. My next period was pain-free. However, the one after that had remnants of the old hot, heavy feeling. I didn’t feel sick or have diarrhoea, but I didn’t feel great either. So I went back on the herbs. Now I’m on what Dr Clark calls “the maintenance programme”, where I can take smaller doses of the tincture to keep ticking over. I also regularly use the frequency generator. You can also read up on the works of Dr Clark and Royal Rife (another proponent of frequency therapy) online.

You can also do a simple Google search for Dr Hulda Clark and find her book online in PDF form, as well as many videos about frequency treatments on YouTube from both Dr Clark and Dr Royal Rife. It’s pretty wild stuff, and I’m sure that in the future, Western medicine will catch up and come around to their way of thinking, as it always does, but for now, it remains relegated to the shadows of so-called quackery. Goodness knows when the NHS is going to be able to offer anything other than invasive surgery to “cure” it. Meanwhile, millions of girls and women suffer needlessly and are at their wit’s end.

Conclusion

I’m writing this because I hate to think of so many women with this debilitating condition and little there to help them. The BBC reported today that around 1.5 million women in the UK have endometriosis, but personally I think this figure is much, much higher. As girls, we get told we just have bad period pains when we go to the doctor, so many cases of the disease go undiagnosed. Therefore the statistics cannot be correct.

I hope this article has helped you in some way. If you would like to know more, please visit: www.endometriosis-uk.org. And drop me a comment in the box below and I’ll get back to you as soon as I can. Let’s fight this together.

In warmth,

Katie

Disclaimer: Obviously I’m not a doctor. So go and chat to yours if you’re in pain and suspect endometriosis. What I’ve said here is my own personal experiences with the disease, not medical advice. Do your research. Learn about your body.

If you enjoyed this post, you might also enjoy reading my post on vegan recipes and raw food – two other things I got into 11 years ago and are only just becoming mainstream.

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