Endometriosis

My daughter, Rhiannon, has endometriosis. Her periods had been normal and pain-free from the time they started (when she was 13½) until New Years Day 2001 (when she was 17½) when she was brought home from a party crippled with immense pain and heavy bleeding. This then became the norm for her.

In December 2005, she had her first pain-free period since that fateful New Years Day. So far, she had pretty much maintained this status. This is how she arrived at this point:

In September 2003, Rhiannon had surgery to ablate severe endometrial implants. The operation didn’t relieve her symptoms, nor did a post-operative prescription of a continuous 28:28 cycle of Yasmin (a combined pill containing the synthetic hormone drospirenone).

In early summer 2004, I bought “Endometriosis: Healing Through Nutrition” by Dian Shepperson Mills & Michael Vernon. When I first received the book, I read it from cover to cover and found it fairly convincing ― which is easy for me to say, never having had a period pain in my life!  At that stage, Rhiannon’s thinking was so scattered and her concentration so poor, that she couldn’t settle down to read it. She was also about to spend the summer DJing in Cyprus. Just before she flew out there, we visited her gynae and mentioned the nutritional approach. The gynae (a woman!) pooh-poohed the whole idea – surgery and drugs are the only answers. Rhiannon listened to the gynae. I remained convinced that nutrition is helpful. Rhiannon returned from Cyprus looking divinely beautiful: perfect weight, blonde hair lightened even further by the sun, deeply tanned – gorgeous. In truth, beneath the tan and weight loss, she was exceedingly unwell and in constant pain. She’d lived on a tight budget, which meant she’d spent the summer living mainly on baked potatoes – and, obviously, DJs work all night. A few weeks later she had lost all her energy, piled on weight, was in pain practically all the time, constantly tired, periods crippled her. Every day, Rhiannon would come home from work, eat, go to bed and sleep, get up, go to work… Rhiannon has a strong work ethic, partly as a result of her dance training no doubt, which forced her to go to work on all but the very worst days (usually the first day or two or her period when she was beset by passing-out pain and heavy bleeds).

Her gynae, in early summer 2005, changed her pill to something else (forgotten the name), which made her infinitely worse (my lovely, placid girly turned into an argumentative, miserable ratbag) and Rhiannon went back on Yasmin in July 2005. While Yasmin didn’t cause the erratic mood swings as the other pill, Rhiannon was still depressed, lethargic, in agony during her periods, in pain most of the time.

In September 2005, we went back to the gynae. The gynae prescribed oestrogen patches. This rang alarm bells with me. Doesn’t oestrogen cause endo? Everything I’ve read says it does. I rang the endometriosis helpline (a freephone 0808 808 2227)and the people I spoke to begged me to tell Rhiannon to get a second opinion. Further research revealed that oestrogen-only treatment is no longer recommended for any condition as it increases the likelihood of endometrial cancer. I discussed this with Rhiannon and she decided to come off the pill, not to use the patches, and to let me dictate her diet and dish out the supplements (she was far too ill to concentrate on the book, but was content that I was taking control).

Within ONE week, she was a different girl. Her energy was returning to the extent that she was able to go out clubbing with friends at the weekend. Within two weeks, facial puffiness and abdominal bloating had gone; her skin was clear and spot-free; the “bibbles” on her upper back had disappeared; she was going out in the evenings, laughing, having fun; pain was intermittent and reducing in intensity; her first period was painful, but less so, left her feeling exhausted and washed-out, but lasted only five days instead of seven or eight, and was much lighter. All this improved and continued over the next three months. I can’t begin to tell you how fantastic it is to see her like this. Her periods are now all but pain-free, light, and last only five days. She is who she used to be before endo. We know this is still early days, but…

This is how we reached this point nutritionally: As a family, we’ve always eaten free-range/organic food wherever possible, now we’re even stricter; no wheat at all, goat dairy replacing cow dairy, organic meat, veg, fruit, organic eggs, wild fish, porridge for breakfast with added oatgerm/oatbran; Splenda (sucralose) replacing sugar; nuts and seeds; daily nutritional supplements: Acidophilus capsules (4-6), 1 Multibionta, 6 Equazen IQ fish oil capsules*, 1 Wassen Selen-active, 1 Wassen Co-enzyme Q10, 1 Holland & Barret B50 B complex, 1 H&B Vit C 1000mg, and three tablespoons of organic linseeds. This has probably increased her food bill by about £100 each month, but she’s happy, healthy, conserving her fertility, energetic and – well – normal!

UPDATE February 2007:

Rhiannon asks me to tell you that having been very strict with the diet and continuing with it: I can now eat the occasionally bit of wheat without any major effect. I would still generally avoid wheat, but I personally believe that I'm now 'cured' of my wheat sensitivity and can have it as a treat (if you can call it that). I know my friend Abir keeps saying how difficult this way of life is...but I feel it's not forever. It's strict for 9 or so months and you're entire life is reversed. I don't want people thinking that it is necessarily a life-long thing, though it might be - but it's not so hard). Although others may differ, as I know there are many many people who suffer far worse than me.

UPDATE February 2008:

Rhiannon suffered a severe chest infection while on holiday in Cyprus in July 2007 and was admitted to hospital, put on oxygen and given antibiotics. Since then, her endo symptoms have returned. I suspect that the antibiotics knocked out her gut flora, which in turn disturbed her endocrine and auto-immune systems. While nowhere near as unwell as she had been up to September 2005, she is still suffering greatly. Unfortunately for a control freak mum like me, as Rhiannon is now running her own household, I no longer have much control over her diet, though she assures me she tries to stick to the principles of the Dian Shepperson Mills plan. Hmmm!

As there has been a gap in her BUPA cover, her insurance cover no longer includes her endo, and she is at the mercy of the NHS - and isn't that poor beyond belief? Although her GP referred her to a specialist, she ended up seeing a lowly minion (again female) who suggested Rhiannon has IBS and prescribed an antispasmolytic, with Ponstan for the "period pains". One of the symptoms of Rhiannon's endo is a slow gut and resultant constipation, so quite how an antispasmolytic prescribed for diarrhoea is likely to help is a tad peculiar. An ultrasound scan was then booked for months later with the results to be given as an as-yet-to-be-confirmed much later appointment.

*Equazen capsules: I chose Equazen because they extract oils from young small fish such as mackerel to reduces the likelihood of ingesting heavy metals pollution found in older, bigger fish.

Useful links:

endo.org

http://www.endometriosis.org/nutrition.html

endometriosiszone