Endo - excessive and unexplained weight gain - Endometriosis UK

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Endo - excessive and unexplained weight gain

sezm profile image
sezm
8 Replies

I was wondering if anyone else has had this problem?

I was diagnosed with endo about 10 years ago. I was incredibly skinny at the time (at 20 years old, I was 47kg) and could eat what I wanted. The doctor put me on a pill (ovral) that made me pick up weight - 12kg in one month - and since then I've had to watch my weight. I lost it all and through diet and exercise and generally looking after my weight like everyone else, I've stayed stable. If I ate badly, I'd pick up a little bit of weight - nothing strange. I stopped that pill and went onto Yasmin.

However, 1.5 years ago, while still dieting/eating well and doing moderate exercise, I picked up 10kg IN A MONTH!

Long story short, I can't lose the weight. I had to go on insulin injections (whilst not being diabetic) to just lose 6kg, when I lost that, a few weeks of normal eating (not binging) made me pick it up again. I have to diet excessively to keep the weight off, but I can't lose anything. Eating normally just piles the weight on - it can be up to 4kg in a week. I've seen doctors, dieticians and biokinetists. No-one has the answer.

After doing some research, I found one or two articles that say it could actually be linked to my endometriosis. I'm just wondering if anyone else has had this problem and if so, what did they do about it?

(PS. I am not taking any medication, apart from Tramacet, and I wasn't taking anything when I gained all that weight).

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sezm
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8 Replies
jojo777 profile image
jojo777

Hi

Hormonal pills (like birthcontrol, yasmin etc) have major side effect the water retention and weight gain. Son initially i believe this was the source of the problem.

Since you stopped them, there is always a possibility that your hormones are very imbalanced and this could cause the weight problem.

A hormonal blood test and thyroid test etc could be beneficial for you to see what is causing this.

There are some articles linking overweight women with endo, but i can assure you that many very slim girls (like me-51 kg) also suffer from endo. I am very sensitive with hormones, can tolerate them, but I tried once the pill for 2 weeks and one of the main side effects was weight gain, i actually felt like a balloon! lol

Have you even tried the endo diet? Very strict but it helps with the endo pain so much and it can help you get rid of some weight too.

endo-resolved.com/diet.html

I follow the endo diet (not 100%-but more or less by 70-80%) and all I need is heat pads to ease pain or discomfort).

Jo x

squidgy profile image
squidgy

Hi.

Sorry to hear about your problem. My weight is very fluctual. I agree with Jojo about maybe getting your thyroids checked. Could it be PCOS (poly cystic ovary syndrome) as well as the endo?

I hope things settle for you soon x

sezm profile image
sezm

Hi :) I forgot to mention that I have had all the blood tests the doctors can think of. They've tested my hormones and thyroid and goodness knows what else. Thus far, I've had about 7 different blood tests, to no result. They're all stumped.

I completely understand that thin girls have endo. I was scarily thin and had suffered with it for years without being aware that it was endo. It was that one pill that knocked me out of my comfort zone, weight wise. Eventually, I came to terms with the fact that I will now always have to watch my weight, like the normal, everyday woman, but this last weight gain is just crazy and makes absolutely no sense .I do rate that my hormones have been imbalanced since that first bout of pills, but there's nothing really to explain the recent onset of 10kg, as I'd changed nothing in my medication or diet in the last 2-3 years.

Squidgy, you have a very good point about the PCOS. I'm keen to get that checked, as, from what I researched, it's not easily picked up by blood tests.

I fully believe in diet playing a big role, but I'm currently on the blood type diet, which (for type O's) is almost exactly like the endo diet. I have to say, I do get pain pretty often, but it's not debilitating like it was before.

I really appreciate your input, thanks guys :)

hellybaybee profile image
hellybaybee in reply to sezm

Always get your results from thyroid tests, NHS ranges are very high. You're entitled to the results and I would be surprised if you gp surgery was difficult about it. The thyroid forum on health unlocked are brilliant and can help you interpret the results.

I say this because I've had a similar problem... I was always slim never too bothered about what I ate and had a stomach like an ironing board. I was out on the pill for period pain and I felt like a weeble! I had weight on my stomach for the first time in my life and never 100% recovered. I spent over 10 years trying to get checked for endo and have only just been taken seriously. I went to see mr Mann and he seemed a bit surprised particularly because I throw up during my period and he said that it's incredibly rare to have that... any way I'm currently getting checked for endo but I have cysts, water in my Fallopian tube and a small fibroid. I am b12 and vitamin d deficient and have hypothyroidism.... it has been an unbelievable battle to get some of these things treated but I can't really blame the NHS, they're ridiculously underfunded. Any way I really would suggest putting up your thyroid results because I've read that endo and hypothyroidism can be interrelated. On a personal note, I really don't trust the pill, I've had health issues ever since taking it and I sometimes wonder if it's related, might be wrong but I wouldn't be surprised.

hellybaybee profile image
hellybaybee in reply to hellybaybee

Also for thyroid they will often check tsh and T4 but at the very least u really need T3 to get a rounded picture. NHS tends to go off tsh which is the most unreliable thing to check... they won't treat you until ur tsh is 5.0 (unless your lucky because most people are symptomatic at a much lower level).

jojo777 profile image
jojo777

I agree that checking for PCOS is a good start.

I'm still trying to figure what else could be though! Human bodies...so complicated!

I didnt know that there was a blood type diet! But since I follow more or less the endo diet and I'm O+ blood type, I'm glad I follow the right one! lol

Let us know how you get on and if you have any answers, do you think that an endocrinologist doctor could check more into fine details hormone problems except the general thyroid?

It sometimes very difficult to pick up hormone problems, and the more specialised the doctor, the better for an accurate diagnosis. Maybe you should consider being referred to that type of doctor. xx

Bebe1211 profile image
Bebe1211

I was diagnosed with endo in 2013 and I never weighed more than 120 or 125 and could also see whatever I wanted. I am now almost 150 and I have taken the depo birth control pills and am taking my last dose of lupron this month as I am scheduled to have a complete hysterectomy in July. All of my weight is just in my stomach to the point where I look 5 or 6 months pregnant. I am hoping I go back to normal after my surgery.

judithprt6 profile image
judithprt6

Why would you use insulin to loose weight?! I'm a type 1 diabetic and I see no reason why any doctor would tell you to take insulin if your not a diabetic!

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