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 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 many 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.

Personally I think the number who have the disease is much, much higher, as women and girls get told we just have bad period pains when we go to the doctor, so many cases of endometriosis go undiagnosed. Therefore the statistics cannot be correct.

What exactly is endometriosis?

Endometriosis is a condition whereby the lining of the uterus (called endometrium) actually comes out of the womb and attaches itself onto other organs in the body – be it bladder, colon, lungs, stomach, anything. It even travels up to your eyes and brain! It’s mad as hell. Once the uterine lining is outside the uterus, and attached to various parts of our abdominal cavity, these secondary sites then have their own periods. So you’re effectively bleeding on the inside all day long. No wonder we’re in crippling agony.

But nobody, not in the Western world, at least, 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 sick bay 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 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 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 cure it”. What a bizarre thing to say. It turned into a strange permanent pain in the hips, 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.

How is it diagnosed and treated?

I didn’t realise I had this horrible condition until I was 33 (so 19 years of undiagnosed acute pain). I went to see a consultant at my local hospital in Bath, 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 announced: “I don’t need to examine you (phew). I think you’ve got what’s called endometriosis.” He then went on to mansplain a few things to me (amazing how many of these consultants are men), before saying I had a classic case – and he’d like to book me in for a laparoscopy asap. He also casually mentioned I may not be able to have children – a sentence that rang in my ears, and which I’m sorry to say hit my sub-conscious like a poisoned dart. I think doctors should be very careful of telling patients information that can be internalised and believed and therefore inadvertently become the truth.

What is a laparoscopy?

A laparoscopy 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 surgery under general anaesthetic is the only way to diagnose and treat the disease.

So at 33, I had the aforementioned surgery, and woke up the next morning in hospital, after a horrific night’s sleep. I was told they had indeed found patches of endometrium on my bladder, colon and outside my uterus wall. To be honest, I was actually relieved. Imagine having to go through all that surgery and stress (I was also moving house at the time, and going through a break-up), and then being told they’d not found anything after all! What then?! Not only would you have to go back to square one wondering why you’d been in pain all this time, but you’d also have to recover from the horrible surgery as well.

During the surgery, they pump air into your abdomen, so it’s a very painful operation to recover from. Nobody tells you this, so I’m telling you now. The air has no way of leaving your body, so it travels up to your shoulders to try and get out. This is excruciating. I wasn’t very prepared for the aftermath. The night in hospital was awful – I got no sleep because I couldn’t breathe, and was in agony. My abdomen was sore from the laser surgery, and my body ached from the general anaesthetic. Oh, and I’d also had a mole removed on my tummy, for good measure. I rang the nurses at 4am to ask for a morphine 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 there for at least a week to recover properly. I could hardly breathe, and my insides felt violated. Apparently most women don’t even get a night in hospital before being sent home. This is a “minor operation” in NHS speak. Nothing to worry about. Easy peasy, lemon squeezy.

I went to stay at my mum’s house to recover, which took a month. Again, nobody prepared me for this. I’m self-employed and there was no support for me. It took many weeks before I had my normal levels of energy again.

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. No known cure?!

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 be able to have children – at a time when most of my peers and family were churning out kids like no tomorrow, and talking non-stop to me about this fact (this is a blog post for another day) – I was absolutely gutted to know that there wasn’t a known cure. I felt weak, disempowered and devastated. I was crushed.

Many women, understandably, opt for a hysterectomy at this stage, to help get rid of the pain. Sometimes it works, sometimes it doesn’t. And obviously, this means you can no longer have children. But if you’ve effectively been told that anyway (casually, by a male doctor, who probably has kids already), and your uterus is causing you nothing but grief, I can well imagine you’d want to get rid of the damn thing.

The more I spoke out about all this with my female friends, the more I was amazed to hear others were, are or had been in a similar boat. It was crazy to learn how many women go about their lives with this disease, silently suffering, grinning and bearing it, and yet knowing nothing was being done to help them. I got angrier and angrier. I couldn’t help but think that, because it’s a woman’s disease, it’s not taken seriously. If any man had to go through just one day of that pain, the condition would have been cured centuries ago. I have zero tolerance for any male who moans about having a cold or flu and takes a week off to lie in bed.

Cut to the Me Too movement, and the huge surge in awareness of female issues generally, and I decided to take matters into my own hands and do some more research, primarily into alternative remedies.

Finding a cure

Around 12 years ago, I had to good fortune to hear about an alternative health retreat in Thailand, which has since taken a very meaningful place in my life, mainly for the people I’ve met there. I’ve learned a great deal about alternative therapies, and much of it began 12 years ago in this place. It was here that I came across a mind-blowing book called The Cure For All Diseases by a lady called Dr Hulda Regehr Clark. I devoured it cover to cover in a day, and whilst I was at the retreat, embarked on the herbal cleanse she prescribes, as I’d picked up a nasty Giardia parasite whilst hiking in Nepal. I cured myself at the retreat in a week.

I then did tons of research into parasites, flukes, worms and pathogens and invaders of all descriptions, hungry to know and learn more, and it opened up a whole new world. Things began to make a lot more sense. I continued to learn and educate myself about these topics over the next 12 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 12 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 surprised me anymore. Western medicine was 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 harm were they doing? Well, Dr Clark believes that our wombs are polluted with all kinds of solvents to begin with, causing the perfect nesting and breeding ground for all manner of invaders to take up residency. 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 such as 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 in tincture form from a lovely shop in Totnes while I was house-sitting in Devon, and decided it would be a good opportunity to go through the cleanse. The tincture was wormwood, black walnut and clove. I even embarked on the frequency generator treatment, which is a topic for another day, because I could wax lyrical about frequency therapy for days. Essentially, each pathogen has a frequency, and you can kill it by playing that same frequency for a few minutes at a time. Have a read of Royal Rife, Tesla and Hulda Clark to get a flavour of it.

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 to death, 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 take 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, raw feeling. I didn’t feel sick, nor did I 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 and 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 on Youtube of both Dr Clark and 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, thousands of girls and women are at their wits’ end.

Conclusion

I’m writing this because I hate to think that so many women suffer with this debilitating condition and nothing is being done to help them.

I hope this article has helped you in some way. And if you would like to know more, please drop me a comment in the box below and I’ll get back to you as soon as I can.

In solidarity,

Katie

For more information, please visit: www.endometriosis-uk.org.

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, it’s 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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