Endo and weight

Hi all

Before I was diagnosed with endo, I was 8 stone dead for years and years. Admittedly I was in quite a high pressure job back then, as well as being 20 years younger and doing a lot of running around.

Practically the minute I was diagnosed, my weight started to creep up, on account of all of the drugs that were being pumped into me. I also had problems with recurrent miscarriage and had drugs pumped into me for that too.

As I type today, 20 years after diagnosis, I am just under 15 stone. I started Weight Watchers on 1st January and have stuck rigidly to it, and in the whole month I have lost the grand total of one pound.

I have tried various diets over the years and they have all failed, the only exception being the enforced no fat at all diet I had to be on while I was waiting for my gallbladder to be taken out. But after seeing the Christmas photos, and more importantly because my blood pressure has shot up recently, I became determined to follow a diet to the letter and get shot of at least some of the excess!

This is all a bit long winded, but what I was really wondering was if there was a link between endo and weight - has anybody else found that where their friends are dieting and losing pounds every week, you're not able to shift anything?

23 Replies

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  • Hi Chrissie. I try to eat sensibly but I am still overweight and seem totally unable to lose any pounds! I have also been wondering if there is a link between this and endo x

  • hi i was on weight watchers last year in 6 months i lost a pound my mum was always saying i wasnt doing it right but i kept telling her i was and i was doing it by the book i stuck in the diet for a whole 6 months kept getting upset with myself and everytime someone lost weight i was so envious in fact i realised that i was starting to hate them and they kept saying there must be something u are doing wrong i personally think it is endo plus i cant excercise much cause of the pain so no activity means u dont burn off the calories im gonna try to force my self to excercise through the pain i will let u know how it goes hope you find your answer hun xx

  • Having had a miserable day yesterday after trying to find something to wear for a wedding I fully sympathise. I too was always around eight and half stone and even if I lost or gained a few pounds I would always go back to the same weight. Now I am 11 stone (Im only short too) and am finding it really hard to lose any weight. I have gone from a size 8/10 to a 14/16. I did used to have a fairly stressful job although it wasnt particularly physical and I admit that generally I need more rest now however it seems that when I work really hard at trying to lose weight, watching my diet and exercising on a regular basis there is no or very little change. The thing is, I can look at this logically, I know that weight loss is purely a calculation of calories in and calories out however I cannot understand why when I have a sustained and determined effort very little changes. Before christmas I cut carbohydrates completely out of my diet for 4 weeks and exercised regularly and lost 2lbs, when I did the same a few years back I lost 4lb in the first week alone (im not saying this is the way forward as its very strict and extremely difficult to maintain i'm just using it as an example and its come back on now anyway!) I stopped my zoladex injections last summer and in the past few weeks all my old symptoms have returned. Obviously my health should come before my weight issues but I have to admit I feel very reluctant to go back on treatment because I just feel like a totally different person, its awful having this condition in the first place without feeling down about the way you look and feel. Enough moaning from me anyway, I just wanted to say I agree, I have definitely put on a lot of weight since I have been on various treatments but even when I have been off treatments I have gained weight and I feel that there must be some correlation with weight gain and endo.

  • And it's such a vicious circle - you're in pain because of the endo, so they give you drugs for the pain which cause you to put on weight and when you try to exercise to get it off....you can't, because you're in pain.

    If there is no correlation between endo and weight gain in the first place, I am sure that as soon as they start pumping you with drugs, something changes. It's like the weight loss switch is disconnected.

    Hmm.This week I am going to up my water intake and also make sure I do at least a bit on my exercise bike every day - although endo in the Pouch of Douglas doesn't sit well with a bike saddle (no pun intended) - and we will see!

  • Hi Chrissie,

    You're not alone and its a comfort to hear im not either!!! i have been so depressed lately trying to get my weight down, doctors say im overweight and loosing weight will increase my chances of "getting along" with endo and reducing my pain.

    However, i have never been one to overeat - yes like everyone i will pick here and there but in gerneral my diet has been very healthy. Im 21 by the way. back in 2010 i was a healthy size 12 and was confident and happy with my body. I went onto the depo injection and since then my weight has literally soared high!

    I have been on slimming world since June 2011 and have lost a total of 9lb! which is obviously so frustrating!! i stick to it! go zumba and swimming (when i can and feel up to it) and each week i will go up and down, what i loose one week i will put back on another week! its a joke! i got my friend on board too and week after week she will loose 5lb, 3lb etc etc! im happy for her of course but so frustrating when i try so hard. I think Endo is definately a key factor in weight issues.

    Medication- depression or the way we feel in general effects weight.it does me anyway i know that for a fact! lol... Doctor has now put me on tablets to help weight loss (bout the only helpful thing they have done for me) - the effects are a downside not the most pleasant but i lost 2.5lb last week wooo! so hopefully these will help!

    I am desperate to loose weight now its getting horribly depressing to go week after week to not loose like all the others - my consultant is so understanding though and has made me write diaries to show what im eating and nothing wrong there! but stay strong and stick with it! I also have fibromyalgia which causes serious pain in legs, arms back etc along with endo is not the best. especially when your musscles tend to sease up all the time

    When Jules mentioned health comes before weight- its so hard isnt it! i think like that but then say to myself well what do i do? im unhappy because of the weight so do something about it- then health wise loose weight to help symptoms and pain- then you cant always excerise for how much pain you are in or how youre feeling, so its such a viscious circle isnt it!

    Sorry for such a long post hehe

    Danni xx

  • You're right, Danni, it IS so frustrating! I have always eaten healthily, apart from craving chocolate once a month I haven't got much of a sweet tooth, don't do crisps, and if I fancy a snack during the day it'll be (honestly!) a handful of pistachios or a yoghurt or a piece of fruit. I KNOW that I am not eating junk and I am not over eating but nobody else would ever believe me. I sort of went on this diet so that I could prove to everybody else that I wasn't making the weight thing up!

    I wonder if anybody is researching the connection between endo and weight? Although, as I say, it took ten years for me to be diagnosed; I was eight stone and like two boards clapped together apart from my massive endo-pod which turned out to be a cyst the size of a melon. Women's problems my bottom!!!

    I just get so fed up with being told I am medically obese and I need to "Do Something About It". Hand me a chainsaw and I'll cut off a leg, that'll sort it...(I'm joking, obviously)

    Sigh!

  • Thanks for starting this post, its been refreshing to have a good moan to others who are in the same boat (albeit a bloody miserable boat!!)

  • I suffer from weight gain when the endo playing up as soon as I have been operated on I lose it. I go from a size 12 to 16 within weeks and I am not usually taken any new meds by this time. . I dont believe it has anything to do with the tabs I think it has to do with what is going on inside our bodies. My gp has always known when my endo is playing up as I look pregnant.

  • My belly goes up and down depending on whether the endo is playing up or not. In some ways it's a 'blessing' because when it's up, it's rock hard, and I get people to feel it (not random people, I hasten to add!) so that they know that it's not just me being fat...

    Jules, you're welcome - obviously the main and biggest problem with endo is the medical ramifications, but we wouldn't be human if we didn't get fed up with the stuff that goes along with it. I never thought I'd be thanking God for elasticated waists before I turned 50, at least!

  • Well ironic how i found this post yesterday - went to slimming world last night for the weekly weigh in and despite being good all week (with a few treats - allowed) and sessions of zumba---- i put on 1 pound!!! came home last night and cried my eyes out i just want to give up i really do! im at my wits end and dont know what else i can do to loose weight just not working at all! thinking of cutting a leg off too now haha

  • Aww, Danni....it's interesting though, you're doing Slimming World and I'm doing Weight Watchers and so far, neither of us is seeing much of a shift..

    Don't give up though. Can't let this blasted disease ruin EVERYTHING for us. And by sticking with it, we are showing FAR more strength of character than those who waltz into their meetings every week three pounds lighter ;)

    Today, I will mainly be eating celery! LOL! x

  • Hey chrissie,

    Very interesting!! i was considering moving to weight watchers, but as a few people told me - very similar ideas and if there is something there stopping you from loosing weight you can try all the diets and still have the same problem.

    I have been told the Dukan diet is good for us Endo's!! ive got a book to read on that over the weekend.

    my doctor has also said that if for a long period of time you cant loose weight for medical reasons you can go on the waiting list for a gastric band, i know that drastic and not saying its the answer but some free info for ppl there!

    Its so refreshing to hear other people in my boat! thats very true about us being stronger and the will power not to eat a whole tub of nutella on a bad day and stick to a spoon lol (guilty pleasure lol)

    i was even thinking of cancelling my holiday with my best friend- the one shedding the weight quicker than anything lol purely for how i feel and knowing i wont be happy and confident next to her (best friends and i know i shouldnt feel like that but i do, despite her being so encouraging and always there for me) but im determined i wont let it get the better of me and i will go sun it up whatever shape i am :)

    Hope things get better for you Chrissie!! Sounds like you've been battling this for years and a lot better minded than i am :)

    xx

  • Don't cancel your holiday! This endo lark is a right so and so (ooh, I got word filtered! LOL!) and I know we all have some very dark days on it - but beneath the endo, and the weight that won't shift because of the endo, as we have scientifically proven between ourselves ;) , you are still you, and you still deserve to have a life! You get out there, girly, and lay in that sun!

    I'm dragging myself to Greece for a week in June - I know I won't be the thinnest person on the beach by a long stretch, but I'll know that I damn well deserve it, probably more than the skinny minnies with the tiny bikinis playing ping-pong in the sea to show themeselves off to best advantage! And a bit of sunshine on the belly is lovely :)

    Let me know what the Dukan book has to say; I must admit that I've heard that it's not the healthiest diet in terms of balance but I'd be interested to hear what you think about it.

    C xxx

  • Hi Chrissie,

    I did read a lot of the Dukan diet and a little miffed by it. basically just sticking with Protein and gradually introducing vegetables and then carbs- i too have heard bad things about it. Im tempted to go onto to Tony Ferguson plan- i did do this before and enjoyed it but not for long as money wasnt good and that was before things were really bad with endo so cant really say if it deffo worked for me, i wandered if you had tried this or a similar shake diet (lighter life is another)

    I know it sounds drastic to go to shakes but you have two shakes - brekki and lunch then a healthy meal in the evening.

    Cant make a decision at the mo of what to do but like i said before getting a little desperate now lol

    bloody pain endo and weight management!!! GRR lol

    Hope you are well x

  • Hi Danni!

    Well, I think I might have found the answer....

    Admittedly yesterday I was in bed all day being very sick but I got on the scales this morning and I have lost four pounds...

    Foodwise I have been doing exactly the same this week, but I have really, REALLY upped my water intake. I have been making myself drink glasses and glasses of squash, I hate water on its own so I found some Tesco No Added Sugar stuff and as I say, I have been guzzling it like nobody's business.

    I must have been retaining a hell of a lot of water, because I can see my ankles for the first time in YEARS, previously they were always swollen.

    I thought I was drinking a lot of water before, but clearly I wasn't drinking enough!

    Give it a go for a week and see what happens. Maybe the endo and weight link is the water retention thing...

    Let me know how you get on!

    Lots of love xxx

  • I have got to be honest i dont dirnk enough. I find it so dam hard!! i have really tried this week and deffo taking your advice.

    Will give myself a challenge and up the water massively!! "/

    Its such a relief to talk to someone who understands :)

    xxx

  • I have been struggling for years. I was diagnosed with PCOS at age 19, but was suffering with endo too, which wasn't diagnosed for a few years. I went from a size 8 to a size 16 within a a few months really. Very depressing. It seems that when I do lose some weight, I have a flare-up and get put on more meds that slow my metabolism down and I pile on the pounds. I have put on nearly a stone in the last 2 months. I am the biggest I have ever been. A chunky size 16 and really uncomfortable. I am on Cilest pill (not helping me remotely now), gabapentin, naproxen and trazodone for depression and not being able to sleep (which I was given in 2009). I have also been on amitriptyline for a bit to help with pain.

    I can only lose weight on very low calorie, low fat and low carb diets. Fun eh? The Cambridge Weight Plan gives amazing results, but is difficult to follow. However I do well on it, and it helps if you are unable to exercise due to pain (which is usually the issue for me, plus fatigue).

    I have a couple of friends with endo, and one was on weight watchers and slimmers world diets and gained weight! She's a Cambridge Weight consultant now and lovely and slim. The other has a Mirena IUS and has found that very helpful so is able to exercise loads as she's not in pain.

    I feel quite bad about my body. I need to shift this weight, but it seems 10x harder than it is for people without these health issues!

  • Hi Bernie,

    Thats horrible to hear and hope you're getting somewhere with coping with it now, wandered if i could ask some advice.

    Im on Tony Ferguson Diet - Very similar to Lighter life and Cambridge.

    Im on my 2nd week and feel amazing already and finding it easy to stick to - finally! i've got to be honest im worried when i reach my goal it will all go back on again. My plan was to go back to slimming world once coming off as to keep to the healthy eating plan. does this sound a good idea to you?

    I definately think food alters how we feel with endo. and this is coming from someone that read everyone else saying and with me thinking yea right!! but really do feel amazing on this :)

    Hope everyone else is well :)

    Danni x x

  • That's rough, Bernie, endo AND PCOS. You've got an uphill battle before you've even started :(

    I stayed the same weight this week, but I think it's because I was ill last week so not tracking (actually, not eating or drinking anything much at all)

    Bloomin' disease...

  • i am also having the same problem and its really getting me down.....i was a size 8 before my diagnosis and am now a size 12, none of my clothes fit me and no matter how sensibly i eat, the weight is not going anywhere, if anything im putting a little on!! i am working through my pain in a job that requires me to be on my feet all day and always moving so why wouldnt i be losing the weight!! i also go swimming as this is the only managable exercise with the pain and still nothing!! it is really getting me down!!

  • Amy, I think there has to be a link somewhere. There has to be.

    I've stuck with my WW and have lost eight pounds now but that's being REALLY strict with myself. My last Zoladex injection is this month, and I'm hoping that when that finally gets out of my system I might see more dramatic loss, but to be honest I'm not holding my breath....

    We are truly Exceptional Women to put up with all of this rubbish :) x

  • Hi Bernie,

    Thats horrible to hear and hope you're getting somewhere with coping with it now, wandered if i could ask some advice.

    Im on Tony Ferguson Diet - Very similar to Lighter life and Cambridge.

    Im on my 2nd week and feel amazing already and finding it easy to stick to - finally! i've got to be honest im worried when i reach my goal it will all go back on again. My plan was to go back to slimming world once coming off as to keep to the healthy eating plan. does this sound a good idea to you?

    I definately think food alters how we feel with endo. and this is coming from someone that read everyone else saying and with me thinking yea right!! but really do feel amazing on this

    Hope everyone else is well

    Danni x x

  • So glad I found this post! Trouble is I could do with my husband reading it too!! I have lost weight before thanks to Slimming World and running. I've ran marathons. But when the endo decided to come back four years after my laparoscop, it became too painful to reating habits weren't the best probably due to the frame of mind I was in - anxiety bordering on to depression. I tried to lose weight on my own, through diet and exercise - I know Slimming World like the back of my hand. But the weight kept on creeping up and exercise was triggering the pain big time .. I had a second laparoscopy and it's gone worse since. So I rejoined SW. I also stepped up the exercise drastically trying to ignore the pain. Well somehow I am ok with the exercise now and have started running again but only lost 7lbs in 12 weeks ! And my belly and stomach keep feeling swollen or full of water sometimes and ok others. I have decided to not go to Slimming World anymore because it's not making an ounce of a difference compared to when I do it on my own. I am going to have to experiment on what foods I am ok with and which I need to eliminate or reduce. I eat low fat already and plenty of fruits and vegetables. I drink a lot more. I know sugar is not helping and triggers endo pain so I need to almost eradicate from my diet.... Watch this space! Lol

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