Weight Gain: Hi all. I am on my 7th... - Endometriosis UK

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Weight Gain

AMJ88 profile image
23 Replies

Hi all.

I am on my 7th month of zoldex injection , HRT (patches and on the mini pill (zelleta).

Since starting this treatment I have already gained a stone and no amount of dieting exercise seems to be helping.

The injections defiantly help with the chronic pain although still getting alot of hip pain and pain in my sides so I don't want to come of it yet and specialist has said it looks like injections are my long term plan as I'm to young for a hysterectomy age 33.

Has anyone else experienced this and found a way to manage their weight?

Thank you all

23 Replies
Prettythings1 profile image
Prettythings1

I feel your pain I have the same problem! Totally lost at what to do! Im on prostap injections 3rd month ive put on a stone and im very bloated to xx

AMJ88 profile image
AMJ88 in reply to Prettythings1

It's horrible isn't it. Just feel like we are all hitting a brick wall everytime. Ohhh I forgot to put in about the bloating. It's so horrible. Xx

Prettythings1 profile image
Prettythings1 in reply to AMJ88

Ive been told at 36 that I'm too young for a hysterectomy. I have been told to expect to br on the injections for ten years (not happy with this)I am so desperate to loose. Weight nothing works

What have you tried? Xx

AMJ88 profile image
AMJ88 in reply to Prettythings1

I've tried calorie counting. Exercise. Trying to cut down on things. Just seems like a viscous circle. I wouldn't say I over eat and am pretty active as In I walk lots but it's just piling on. Last few weeks I've tried replacing chocolate/snacks etc with ice pops only 14 calories and helps alot with the flushes too. Although I've still gained weight I do find that one extremely helpful xx

Prettythings1 profile image
Prettythings1 in reply to AMJ88

Thanks I have tried all this as well I’m considering giving up gluten againBut i find it difficult as its so expensive to buy the alternatives xx

AMJ88 profile image
AMJ88 in reply to Prettythings1

It's not cheap to find alternatives. My Gynae told me to give up dairy because endo can feed on that but oat/almond milks are expensive xx

Prettythings1 profile image
Prettythings1 in reply to AMJ88

I love cheese to much and chocolate! Dairy is hard to give up xx

AMJ88 profile image
AMJ88 in reply to Prettythings1

100% I haven't given it up. I tried for a bit and didn't see much difference so thought I'm not robbing myself of the little pleasures 😂😂 xx

Prettythings1 profile image
Prettythings1 in reply to AMJ88

I don’t blame you I have tried a few times myself to give it up I just miss cheese too much! X

Lindle profile image
Lindle

These injections aren't intended as long term treatment. Do you know what stage/severity endo you have?

AMJ88 profile image
AMJ88 in reply to Lindle

He said it's licensed for 6 months to 2 years however people have been on them for years. I've never been told much about my endo other than I have it. After a cyst removal the surgeon appeared and said I had endo and that's really been it. I've asked what Gynae what stage and he said it didn't matter xx

Lindle profile image
Lindle in reply to AMJ88

It is licensed for 6 months. When used for longer it is off-license. The ESHRE guideline suggests they should be safe up to 12 months but is clear that long term risks aren't well studied. There are some anecdotal reports of permanent significant side effects with GnRH agonists so it is a decision to be considered carefully.

Stage matters as it determines where you should be treated - superficial endo is treated in secondary care and stages 3/4/rectovaginal in specialist endo centres in tertiary care. Medical treatment is rarely effective for severe endo and ongoing symptoms while on GnRH agonists can suggest severe disease as medical treatment is rarely fully effective. Typical symptoms would be in the lower back and hip and anywhere down the sciatic nerve - most usually the left side but not always. They don't stop endo progressing so like with any medical treatment they can mask symptoms while endo gets worse.

I assume your consultant has some specialism in endo as is required and that you have had a scan. It will probably have been clear as routine scans don't look for deep disease - it needs to be an advanced endo specific scan. It would be a good idea to get a copy of your lap and any scan report to establish what you are dealing with. It is always best to know what severity endo is before starting any long term medical treatment.

AMJ88 profile image
AMJ88 in reply to Lindle

Thank you!!! I have only ever had normal ultra sound scans and like you said it's come back clear. I've had hip x-ray and physio as in in constant pain and discomfort with my hip. All my pain is in the right has the left ovary and tubes has been removed. I have said to the nurse that the injections are easing the initial pain (Sharp shooting pains etc) but I'm still having pains in my right hand side. I don't have a dedicate consultant in my hospital so always see different ones. Some of the have been horrendous and told me things like... Women are not meant to bleed we are meant for children. I need to decide whether I want to bleed or be in pain. It's so hard to talk to them and express concerns. How would I found out who the endo specialist is? Xxx

Minnie153 profile image
Minnie153

Hi - I did gain about 2 stone when I first started Zoladex over 26 years ago, this was due to an increase in my appetite. I’ve since had many courses of prostap and at the time I was already watching my weight with intermittent fasting and found I didn’t gain weight by continuing with this. I’m not sure if this is the way my body deals with different meds, or if it’s due to the weight management plan. Good luck, hopefully your weight will stabilise xx

AMJ88 profile image
AMJ88 in reply to Minnie153

Ohh I haven't tried a fasting diet before. I will do some research into this. Thank you. Xx

Aussie79 profile image
Aussie79

Hi AMJ88, I started the Mirena with Oestrogel 2 months because I'm perimenopausal alongside adenomyosis and Endo. I previously tried Prostap and Tibolone, but the side effects were awful.So, I'm finding that I've gained weight as well. I wonder if it's the oestrogen.

I also get really bad hip pain. Did they say if your hip pain is connected to the endo?

AMJ88 profile image
AMJ88 in reply to Aussie79

Hi. Ohh it's very possible. I had an x-ray and physio and they said there was nothing wrong with it from their point so they believe it's the endo. Trying to get my Gynae to check me over soon though because it's become horrendous I also get alot of pain where my kidney is xxx

Aussie79 profile image
Aussie79 in reply to AMJ88

Have you had a laparoscopy yet? Hope your gynae checks you over so you're able to find some relief soon. I'm finding it's a lot of trial and error. The Mirena caused horrendous cramps in the first few weeks, which made my GP wonder if it was out of place so I was sent for an urgent ultrasound. I was told that the cramps can last for 3-6 months! xxx

AMJ88 profile image
AMJ88 in reply to Aussie79

I think whoever you see always tells you something different there is no consistency between them. I havent had a lap I've only ever had surgery to remove a cyst xxx

Aussie79 profile image
Aussie79

Definitely. I've not had a lap yet - only ultrasounds and MRI. I've had quite a lot of abdominal surgery already so my consultant is trying the hormone treatments and leaving surgery as a last resort xxx

AMJ88 profile image
AMJ88 in reply to Aussie79

Yea I think that's what mine are doing. Although they only time they mention surgery is for hysterectomy followed quickly by your too young. Xx

lol84-07 profile image
lol84-07

Hi, I am 37 and on the urgent list got a total hysterectomy with radical excision of endo including having part of my bowel/rectum removed due to Endo, not once have I been told I'm too young, I have been asked several times if I have finished adding to my family but never made to think I'm too young for the procedure, and that if I was wanting more children they would approach in a different way to give me a chance if conceiving again. It is a nightmare having this horrible disease, I also have CRPS and now also hypothyroidism. I'm falling apart lol. Please speak to a specialist and if no one can tell you what stage, I would definitely seek another opinion. Following emergency surgery for a ruptured hemorrhagic cyst (ovarian) I was on a general gynae list, he told me there was nothing wrong I had a few baby cysts and I needed to put up and shut up basically, it was probably just a spread of my chronic pain condition! Luckily my GP is ace, he wasn't happy either ( I was distraught and so mentally unprepared u was broken) and sent me to another gynae who was fab hr did an MRI, following which my case went to an MDT my insides are stuck together the endo has completely gone through my bowel and I need a complex multi disciplinary surgery.If I had listened to the first Dr I'd still be walking around feeling like the stereotypical hysterical woman and not waiting for a surgery that will hopefully change my life. I've been on Prostap for nearly 13 months and will stay on it until my surgery, the side effects are awful but I'm stuck between a rock and a hard place, please don't just settle for what you're told, push and get the answers you deserve, prostap is worse than a natural menopause it even a surgical, your body is fighting a chemical that goes against what the body is trying to do.

If I can help in anyway please get in touch, gentle and supportive hugs to all us ladies going through this.

Steffers profile image
Steffers

This is interesting reading everyone’s replies I have had 4 zoladex injections now, I have lost a little weight,which has been very hard to do. Although I am not taking any hrt along side I’m on list to have a hysterectomy (I’m 39 with suspected adenomyosis) although the gynaecologist said would like me to lose some more before the op(doesn’t know when that will be) but did say the zoladex would help with this 🤷🏼‍♀️

All so confusing and conflicting 🤪

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