Endo and weight gain

[Kaiser_susie]

Hi everyone, I just wondered if there is a link between Endo and weight gain? I'm going in for lap and cystoscopy of Tuesday next week. I've suffered for years although this will be formal diagnosis for me. Over the last few months I've put on half a stone and I cannot shift it. It might not seem a lot but I feel like I'm out of control and I'm worried I'm just going to balloon. I've already got lots of water retention in my legs.

If I'm honest I'm not exercising because my pain is generally bad all the time, even walking feels like my insides are dragging down (sorry if TMI).

I eat fairly well, fruit for breakfast, naked bars rather than surgery cereal bars etc. Lots of veg.

Any advice or thoughts on your experience would be most grateful

X

[Hidden]

I now weigh a stone more than I did before I got really ill. I had put on half a stone pre diagnosis which I could not shift, and put on another half a stone after bladder excision last november. I've just had a hysterectomy and cannot get the weight to shift at all. I'm hopeful it will start to go eventually. Some of it I know is because I got so unwell and so anaemic that I was eating badly simply because I was so exhausted and was eating a lot of chocolate to get an energy boost just to go out and do things like picking my kids up from school but I'm sure our hormones are out of whack too and that doesn't help.

[Kaiser_susie in reply to Hidden]

Oh poor you! How long did your recovery take from hour hysterectomy?

Gaining weight on top of everything we are having to deal with an awful feeling!

I'm going to start the Endo diet to see if that helps, but I'm going to wait until after my IP though. The thought of not eating anything nice like chocolate is putting me off a little lol.

Thanks for sharing

X

[CassieJ]

Hello

Hope your lap goes well next week. Ive had a similar experience. Always been thin then last year when the pain massively increased put on just over a stone. Ive found it quite upsetting as I also have experienced extreme cyclical bloating at times which Ive never had before (it's dramatic like being 4/5 months pregnant). Ive spoken to a few consultants about it & my GP and they have just said it's because I am not as active. As before the pain I used to exercise very regularly. Annoyingly my exercise was pilates and running and I quickly found both made the pain worse. At its worst even running for the tube/bus made the pulling pain worse - totally get the insides dragging down that's one of the main pains I get now. Also now whilst my pain has got better since I started back-to-back OC again I still find bending painful so am yet to return regularly to pilates in the way I used to do. To be honest though Ive always thought it was something hormonal too though as like you I eat well and never before had a weight surge like this and the OC if anything seem to be helping a tiny bit (but that is not what the docs have told me!)

The pain, nausea and fatigue and fear about my fertility is far worse than the weight gain but it does get me down as it adds to the feeling that I'm soooo not in control of my body and that I'm powerless over the pain. Had to work on some hard core acceptance over it! And the bf is super kind and just says I still look lovely which I try to hear on the good days. So I would say the same to you, go gently when you can with yourself but totally get how horrible it is.

[Kaiser_susie in reply to CassieJ]

Cassiej,

I know what you mean about looking 4/5 months pregnant through cycle. I get the same, have dedicated clothing for that week! All of your symptoms are identical to mine.

I hope you get the answers you need about your fertility

Xx

[CassieJ in reply to Kaiser_susie]

thank you- I'm thinking about the endo diet too-will post if I find a magic form of exercise which doesn't hurt!Xx

[Emmajayne92]

Hello

Good luck with you laparoscopy I hope it goes well. I have stage 4 endometriosis and have struggled with my weight for a few years but more so since my pain got excruciating the beginning of last year I put half a stone on I then had my lap in march 16 and put a further 1 and a half stone on within months and I'm not a terrible eater.

I've also been to see my gp and was told it was hormonal as my endometriosis was so bad and that I would struggle to shift the weight. They sent me to a dietitian aswell but I only lost 6lb and put it all back on when I started with bad pain again early this year and had my second lap in April. I used to do a dance fitness class but I was in agony doing it.

I've been advised to try swimming by my dietician so going to see how that goes.

It's not nice putting weight on I've lost a lot of confidence but my partner to is very supportive which does help a little x

[Kaiser_susie in reply to Emmajayne92]

Sorry to hear you've had a tough time with pain management as well as weight gain. I guess swimming could be good if you don't over reach and just do what you can.

Out of interest, did you dietitian recommend the Endo diet, or similar? It just seems so unfair that we can't have a slice of cake without worrying if we're going to go up a dress size! Lol

[Emmajayne92 in reply to Kaiser_susie]

Yeah well I'm going to give it a go and see how I do because I love swimming and it's not to tough!

Oh no they haven't mentioned that to me I'm going to ask about that. I'm just pretty much on a low fat and calorie counted diet through them.

They even had me on those diet tablets orlistat that make you go to the toilet if you have fat but they made me feel worse than I started out! And also with trying for a baby they advised to come off them anyway x

[ThaliaThalia]

We produce more oestrogen so there may be a link to weight gain. The lack of exercise won't help, but when we're in pain, it's not a possibility for us.

Weight gain can be linked to so many things. Eating an endo. diet definitely helps.

I experienced the opposite because I was in too much pain to cook and my muscles wasted away from lack of exercise. I looked terrible.

The important thing right now is to get you pain free so that you can feel alive and healthy again. You should tell your doctor about it, but try not to worry about the weight right now. My weight is now back to normal and I can exercise again. You'll get there. Good luck! x

[JackieBo in reply to ThaliaThalia]

That's comforting to hear someone has made it to the other side of this.

I'm reading these other comments and it's like y'all wrote about me too. I've always teetered on the edge of being underweight, always naturally thin, it was the one natural thing about my physical self I had going for me and then, in the past two years, when things have all went to crap but I didn't know why, I gained 30 pounds and I can't move it. I'm not continuing to gain, I do seem to be locked steady, but it just won't budge! On a 5 ft frame, it makes quite a difference.

It's so frustrating because I can't wear most of my clothing anymore. They just don't fit around my middle. And the times when I'm bloated to boot.... my husband very gently acknowledged recently that he did agree with me that I do sometimes look 5 months pregnant when the bloating gets so bad.

I just don't know how to help it though because I can't do any of my regular exercises that I love. I can barely take short walks, let alone do anything else. That sensation of your insides being pulled that others have mentioned is not only uncomfortable and disconcerting, but sometimes downright excruciatingly painful. I now walk hunched over and in very small steps to try and not trigger that. All the time.

It just feels futile and, when your self confidence is already so in the dumps, the weight gain is just another load to bear and it really just sucks sometimes. 😔

[Kaiser_susie in reply to JackieBo]

I know what you mean Jackie Bo, it's so hard to remain positive when everything hurts, you feel fat and other people can see it too.

Like you, I'm lucky and have a very supportive husband, he also notices when I look 5 months pregnant but does his best to boost my confidence by telling me he loves me and stuff like that.

X

[Kaiser_susie in reply to ThaliaThalia]

Oh bless you, losing weight could be even worse as you lose all muscle mass then become very weak.

It seems from what you've said that you're on the 'up' with regards to how your feeling, it's good to know that sometimes there's light at the end of the tunnel.

Keep going

X

[Stellauk]

I put on weight as endometriosis progressed. Since I had my operation the weight has gone down somewhat. I think it is related to the hormone levels in your body. I do find the whole weight thing irritating and adding distress. I tried to shift attention to handbags buying instead!

[Pracy]

I get that dragging feeling your talking about, it's almost as if I have a concrete block weighing down on my insides, I find it even worse if I'm trying to walk at any bit of a fast pace. While I didn't put on weight that I know of (I don't bother with scales, my clothes will tell me if I put on weight) I got days there when my stomach would swell out as if I was 6 month pregnant.

I have been trying green tea with a few weeks now and I have found it great to relieve the swelling, it's not a great taste but I'm getting used to it now, I don't put milk in it. I had a lap and had all the endo removed with nothing damaged in January and it's only recently these feelings are coming back (a bad sign I think) some days I'd even struggle to walk around the house let alone exercise and like you I try to live healthily.

The only bit of relief that I get is from an electric hot water bottle my sister got me.