My endo story - there is hope

[MadMaud]

I am now 50 years old!

From the age of 16 I was stuck on the Pill by the doctor to regulate and ease my heavy periods (I didn't need it as a contraception as I had no interest in sex then!) I was on it constantly for 6 years before deciding to stop taking it. I was in and out of doctors with the pain and period issues and they all said, 'deal with it', it's a woman's thing' or 'go back on the Pill'. I'd started to do some research (there wasn't even the internet in 1985!) and knew something wasn't right. I'd also started having to have breast lumps removed due to hormonal imbalances. At the age of 27 a foreign locum, standing in for my doctor, suggested it might be endometriosis, even though he thought I was probably too young (In those days, they thought only women over 40 got endo). He pushed for a laproscopy even though my doctor said no. Low and behold, after the first lap, there it was on the bladder, bowel and Pouch of Douglas.

There were no endo-specialists and my gynae was old-school brusque-in-manner type. His attitude was offhand and I felt that it was my fault for having it, and that I should just take their suggested pills, go home and shut up. Don't talk about it, and certainly don't ask questions.

I did have a go with a few of the recommended versions (there were 3 choices available then) With each of them, the side-effects were exactly the things I was trying to get rid of. When I questioned this I was told, 'you won't ever be able to conceive so if you won't take the pills, have a hysterectomy'. They did relent slightly and tried massive doses of Evening Primrose Oil, but it had an adverse affect on the breast tissue and lumps. I had another 4 laps in 5 years, then, because I still was questioning the meds, they told me they would do no more operations and basically shut the door. I live on a small island, so I couldn't go elsewhere unless I moved. I'd started my own business as I could do the hours I wanted when I could, and was doing OK. I couldn't work full time as an employee as some days I couldn't even stand or sit, would often throw up or just leak everywhere, regardless of the time of month!

A friend suggested I go and see the naturopath that she was seeing for something equally hard to treat.

At last, a professional with empathy. It wasn't because she was a woman (one of the nastiest doctors I ever met was a woman), this lady actually listened, not just to the symptoms, but also to how it made you feel in the head. She did a raft of intolerance testing, questioning, and brought together suggestions from all realms of alternative medicine and western medicine to see what might help. There were foul tasting concoctions, teeny weeny white tablets, but most importantly - diet. Basically I had to throw out everything in the cupboard and restock. Now I lived with a pie-eating, meat-munching boyfriend whose idea of a salad was a pickled onion with his chips. He was incredibly supportive and helped me no end. No wheat in any form, no dairy in any form, no gluten, no caffeine, no red meat, no mushrooms, no fermented foods like vinegar, no sugar, no processed food, no soy in any form, no MSG, no really sweet fruits either and no alcohol apart from gin (yay!)

There was very little available in those days to buy ready made that didn't include one of the 'baddies' so I had to learn how to make interesting meals or substitute where possible, A sunday roast was still do-able, just don't eat the chicken bit. The first few months were horrible, the body craved everything on the list and the pain was just as bad, if not worse, then at about 4 months in everything changed. I was 32. I've not had another endo op, I've not even been back to the doc with anything endo related since as I don't want to get the same lack of treatment and understanding I had before. I kept going to the naturopath for a little while and would check in if I thought anything needed a boost.

I was really strict with myself and the diet for the first year, then I would have one or two baddies occasionally and see how I reacted. I still basically keep to the same diet, but have wild weekends of coffee, cheesecake and Chinese food. It is probably an 80% good/20% bad mix. If I feel ropey I change my diet accordingly. I have endo friends, some who control by diet and some on the med route and some who have had the hysterectomy. The healthiest are the 'diet' group, one of which had a baby last year. The 'med' group are taking so many tablets that they take some just to combat the side-effects of others. Been there. Even those that had the hysterectomy have now been on HRT for over 17 years.

None of us are pain-free all the time, but the benefit of eating the way I do is that the rest of the body can't help but benefit along the way. There are still times when I curl up in a ball groaning, but I know it will pass, and it is probably due to what I've been eating the month before.

I did go through my late 20's and 30's with everyone around me getting drunk and having babies (probably in that order too!) and it was really, really tough at times, but would not let it beat me.

I am healthier and fitter than I have ever been, do yoga at least twice a week, and am still married to that same man who now actually prefers a salad to chips (he can't believe it himself) and badgers me for raw chocolate covered rice cakes.

There is life with endo. We are all different and not everything works for everybody, but this works for me.

I wish pain-free happy days for you too. xxx

Maud

[Brownlow]

Lovely post Maud. Thanks.