Endo advice

[endo14]

Hi Guys,

I'm 28 and have been suffering with endo since the age of 14. I was diagnosed at 17.
Until early last year we have been able to 'control' the symptoms. through laps, the pill and taking time out when need be.
However the last 12mths have been nothing short of hell and my symptoms seem to be changing. Once I get one thing under control, ie.. bleeding through whilst on the pill etc, something else will start happening. for the last 3-4 months i've had at least one of the following symptoms every day - bloating to extreme, feeling nauseus, headaches, feeling dizzy, sore legs (worse than normal), sore hips, sore back, very bad cramps (again worse than normal), very emotional and I am constantly tired. I can't say how many times I have been to the doctors and how many blood tests etc we have done. We have tried approx 6 different pill prescriptions and I have altered my diet but nothing seems to be working. If anyone has any advice I would be so very grateful. I'm at my wits end and feel a bit helpless right now.

Cheers

[Niki1]

Hi endo14,

I'm so sorry to hear of your painful journey with this terrible thing. I found out I have endo about 8 months ago now when my symptoms got really bad and 'something' was wrong.

I'm sorry I don't have any advise for you because it seems you've been doing most things available to you - laps, pill etc. But I'm curious - has all you endo been removed with laps? I had a lap with some endo removed, but all of it couldn't be becuase I had bowel involvement. I was put on a drug called zoladex for 3 months - it puts you into a menopause state - so takes away all your hormones (so endo can't respond). It is not a cure but it can settle it down for some people for a while. I guess this is one thing you haven't mentioned you've tried - but please know from my understanding it is a temporary bandaid and is not appropriate for all people with endo.

I've just thought of another thing - I've talked to a few people with endo now and they say that going to a natropath was the best thing they every did. It is not a quick fix but they say it helped them significantly over time. Also I've heard acupuncture and chinese medicine can help some.

TAke care of youself - sending you comfort wishes

[YDI]

when was your last lap and how much did they find/remove? have you had more than one lap and could this pain could be adhesion pain? I had severe GI endo and used to get all those symptoms youd speak of. I still suffer side effects such as joint aches and pains, stomach pain (i had a double bowel resection) and i have been on synarel and hrt for almost 21months which i agree is a band aid.

[endo14]

Hey Girls,

Thanks for your replies. In a way its a comfort to know I'm not the only one going through this. (although I wouldn't wish it on anyone).

My last lap was approx 18mths ago and all endo was removed... apparently... As to the amount... I have always been considered to have a mild endo...?
I am wondering though if there is endo in my bowel... When af is in town and I have a bowel movement (sorry guys) the cramps afterwards are unbelieveable. They are so bad they make me feel like I want to be sick and I can't move when its happening, I just freeze on the spot. Does anyone else have this?

My specialist and I have discussed the drug/drugs that put you in a menopausal state. But I have refused them thus far... Both my Mum and Nana went through early menopause (nana especially at 32) and as I don't yet have children I'm a bit scared of messing with nature/tempting fate. Prob sounds very silly, but there you have it.

And now would you believe my specialist is closing her Womens Clinic to her own ill health
So once I have my files and refrences I need to find a new doctor... Good times!

I have tried accupunture and didn't have much luck there. But a natropath is something to look into, thanks niki.

Don't laugh but I am also trying hypnosis next week to help with pain management! lol!

[JellyBean]

Hi Endo 14. I have cut and pasted the following advice from another thread which may be of benefit to you.
By the way- from a natural health perspective, the contraceptive pill is one of the worst things for endo & PCOS. It merely addresses the symptoms, not the cause of the problem - which explains why it keeps coming back. If you want to beat your endo- you have to get out of the system of illness (the conventional medicine system)
Anyway- please read below!!

Hi

From personal experience as an ex-endo sufferer (yep- you read that right!) I will help you to cut to the chase. I am not promising miracles, but this is what worked for me after years of going round and round in circles with the 'conventional' medical feild and their limited options of repeated surgery and synthetic drugs which address the symptoms but not the cause of the problem.

You need to go onto a strictly alkaline, organic (where possible), dairy-free, anti-candida diet and start taking a good probiotic supplement whilst you do that. Most women who suffer from endo have undiagnosed systemic candida.
Visit your nearest health shop for advice on a good quality probiotic supplement (needs to be kept in the fridge), and for alternatives to dairy.
Coles and Woolies sell long life organic Oat Milk by Pureharvest - a great alternative for your cereal etc.
Stop consuming meat and or other animal products which are non-organic and thus are likely to contain artificial growth hormone residue. This will only 'feed' your endo and its associated hormonal imbalances. Organic eggs, organic chicken, etc etc etc.
Its more expensive - sure. But good health is priceless so I highly recommend making the necessary sacrifices in your life that will assist you in this process.
Alcohol, caffeine and other drugs have to go (sorry!)
Artificial food additives also have to go (ie additive 621- also known as MSG. There are hundreds more in our everyday foods). Buy the bestselling guide 'Additive Alert' by Julie Eady to help you with this. Avail from bookstores or online.
Stop using commercialised, chemically-saturated personal care and cosmetics!! They are absolutely loaded with hormone altering substances, and chemicals which are actually listed as carcinogenic (cancer causing), teratogenic (damaging to a developing feotus) and known to have adverse effects on fertility. Check out Miessence online and be inspired!!
Stop using commercial brand sanitary gear- especially tampons. Cotton is one of the most heavily sprayed crops (with toxic pesticides like dioxins, that is) add this, with the fact that the cotton is then chemically bleached white to make it more aesthetically pleasing, and you have a chemical ****tail inserted directly into the most delicate part of your body. Again- go to your nearest health shop and get onto the organic cotton tampons asap. Natracare and Jolie will fit the bill. And don't worry about them looking white - they have been oxygen bleached which is perfectly safe.
For the dietary part- I suggest consulting a qualified Naturopath who will be able to test you for hormonal imbalance, heavy metal toxicity, and many other factors related to endo and ferility problems. Contact ANTA (Australian Natural Therapists Association) to find a qualified natural health practitioner working in your area.

I hope I have not overloaded you. I have gone from being a serious victim to an expert in this area so I am very passionate about helping others with this hideous condition.

XX

PS- you will not have to stay completely dairy free, 100% alkaline forever- but you have a bit of work to do before your body regains homeostasis and until then you have to be quite strict on yourself. Once this balance is regained it is a constant effort to make sure it is maintained - so that will mean indulging in alcohol, dairy and refined foods in moderation.

[Cassius2]

Hi there!

i went down the road of conventional medicine but unfortunately they just dont have the answers when it comes to treating and curing endo for the long haul. there are some great options with conventional medicine to get you through say, 6-12 month blocks, but sustained recovery i believe just cannot be achieved this way.

Eventually my DH dragged me to see a homeopath (who specialised in fertility and reproductive health) and within 1 treatment my painful symptoms (bloating, ovulation pain and breakthrough bleeding as well as extremely painful AF subsided) and by the second i was pain free and experiencing normal length cycles (by the third i was pregnant...we had been trying for almost 2 years up until that point!).

I can highly recommend seeking alternative treatments for endo. there are no hard and fast rules in its treatment as so little is known, but it can be overcome.

goodluck with it, and i totally sympathise with the frustration and hurt that you must be experiencing ATM.

xx

[Aurian]

Hi endo14,

I'm sorry I don't have any advise for you because it seems you've been doing most things available to you - laps, pill etc. But I'm curious - has all you endo been removed with laps? I had a lap with some endo removed, but all of it couldn't be becuase I had bowel involvement. I was put on a drug called zoladex for 3 months - it puts you into a menopause state - so takes away all your hormones (so endo can't respond). It is not a cure but it can settle it down for some people for a while. I guess this is one thing you haven't mentioned you've tried - but please know from my understanding it is a temporary bandaid and is not appropriate for all people with endo....

I went through exactly the same situation, except I was on Zoladex for 6 months after my lap (and resumed regular menstrual cycles within six weeks of coming off it). So far, seven months since completing treatment and no sign of endo symptoms, also on a probiotic which has helped too...

Good luck with getting your symptoms under control, endo can be SO frustrating!

[Niki1]

Aurian

-so glad to hear your good news...endo is so hard to deal with so its good to hear your treatment has been successful.

One thing I don't know about - you mentioned you're on a probiotic - what is this?

[Aurian]

One thing I don't know about - you mentioned you're on a probiotic - what is this?

Probiotics are for balancing your good/bad bacteria (ie, imbalances can cause yeast infections/canker sores/bloating/intestinal troubles) you may have seen the ads on the TV promoting 'Inner Health', etc?

...However, that brand is really expensive ($30+ for a month's supply). I take the Nature's Own brand (any probiotic that is designed to be kept in the fridge is perfect), which is $10 for a month's supply. It's helped me on so many levels, I recommend giving it a go! (or alternatively trying to eat more yoghurt, or Yakult, which both have high levels of 'good' bacteria, acidophillus, etc...)

[singh]

hi jelly beans, i found your post on endo very useful. i live in london, uk and have had rather troublesome endo for the last 2 years. i have turned to trying out natural means...trouble is how to do you find a good naturopath? any advice?

best wishes, singh

[JellyBean]

Hi Singh,

I actually worked in London for a year at The Organic Pharmacy in Kings Road, Chelsea. (They also have other outlets in Kensington, Covent Garden and I believe they have added 2 other outlets since I left the company).
I worked with the most lovely, intellegent, miracle-working woman named Tamara Balding (she has since been married so may be Tamara something else...). She is actually a qualified homeopath, however you will find that homeopathy is the preffered form of natural medicine in the UK, and Tam can use sophisticated technology to conduct non-invasive tests for you. I highly recommend booking a health assessment with her. Although this will be quite expensive - I believe you will find it worthwhile. They also sell organic personal care and baby care products.

Otherwise, you could always contact the C.H.A.I.M centre in NW2 - they have practitioners there who are experienced in treating reproductive disorders such as endo. Perhaps find out which will be the most cost effective option for you.

Oh, and by the way, you are in luck, because London is actually light years ahead of Australia where alternative health and organic products and foods are concerned. Check out Planet Organic and Fresh & Wild stores to investigate some of the alternative, chemical-free dietary options and personal care options that I mentioned in my post above.

Best of luck.

XX