Endo and weight gain/ bloating

Hi ladies

I wondered if any of you had found any good ways to combat the weight gain and bloating ? I have just had my 8th zoladex injection and also take hrt I have put on a stone since starting this and have had a bloated stomach since my endo got bad a few years ago. I have tried cutting out bread and doing the 5:2 diet but no luck :(

Please help xx

7 Replies

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  • Hi Rachrich80. My gyne recently advised me to do gluten and dairy free diet. I soo was not keen to do it but I thought anything to avoid how I've been feeling. She basically said that they both can bloat things up and cause pressure on implants etc which then cause pain. I'll be honest and found a massive difference - especially with the dairy. I no longer feel "weighed down" down below. It's not got rid of my symptoms all together, but I def feel lighter on my feet xx

  • HI,

    Saw your post, and thought "I can identify with that!". I also have Endo, and at the moment it's REALLY BAD - I'm due in on Monday for yet another Lap (nightmare!). I was diagnosed @2011, but I've had symptoms since @ 2002 (as well as having period problems as a teenager, that were never explained - I reckon I may have had Endo all this time). I've had a number of Laps, but the Endo always seems to return.

    My Endo was/is predominantly in the POD area, as well as around my bladder and bowel. I've also had deep infiltrating Endo in my Utero Sacral Ligaments. I absolutely HATE my symptoms, which are pretty miserable - especially chronic fatigue, and chronic pain. However, like you I have also experienced regular bloating, and water retention, as well as some weight gain. I've always been quite a petite build, so for me, any weight gain is a nightmare. I don't have to put much weight on for it to be really noticeable!

    I think it's frustrating that so little is known about Endo. In my experience (and this IS only my perspective, so it may be different to your's) medical people concentrate only on SOME symptoms of Endo, and not on ALL symptoms. They tend mainly just to help with infertility, or with pain. Whilst this is good (any help is gratefully received) they do tend to overlook other symptoms, some of which can have a profound effect on women.

    Bloating and weight gain are symptoms that I think can be REALLY MISERABLE. This is just personal opinion; but I find that putting weight on has a really negative effect. It makes me feel less attractive and less feminine, and it also makes buying and feeling comfortable in clothes less simple. I have found that I can gain nearly half a stone around my periods (and then lose it again as soon as menstruation is over). That means that clothes can fit easily one week, and pinch the next! The other thing is that if you want IVF, you are expected to keep your BMI below a certain level. How can you do that if you have an illness that causes weight gain, and also take medications that cause weight gain?

    I do know what you mean about hormone treatments and other medications. I've tried the Pill (both Marvelon and Dianette) in the past. I've also tried the Mirena. Both were utterly unsucessful! I still had heavy periods and flooding whilst using the Mirena, and I found the device extremely painful. I got acne and water retention using the Pill. I put weight on during BOTH treatments, which made me even more keen to stop them. I am currently doing everything I can to avoid having to take GNRH (which is what I've been offered) injections - I think Zoladex and Prostrap were mentioned. I've been told I'd have to use HRT as well, and I confess that I really don't like the sound of all the side-effects . The only other option that I've been offered is Hysterectomy and ovary removal... which puts me in pretty much the same situation!

    My weight gain has made me VERY unhappy. Even though to look at me I am not really big, the truth is that I hate feeling no longer in control of my weight. I also hate the way I look, now. Personally, I think that if you are a tiny build, people notice it even more when you put any weight on - and the comments HURT. Most people I talk to don't understand Endo (and many have never heard of it!). I think they just assume that the reason you put weight on is LAZINESS!

    It's also VERY difficult to explain the issue of one's own weight to other people. Medical professionals have rarely, if ever, given me any advice or assistance. The NEVER ask if I am happy to take treatments that make me gain weight. They NEVER ask how this affects my body image. AND IT DOES AFFECT IT! Besides, I find I cannot really talk to friends and family, either, because they just don't understand. Also, I've come across a few really unpleasant people who make nasty comments - it is as though because I've always been petite, and now I'm unhappy about putting on weight, THEY want to accuse me of being vain, or worse, of having some sort of emotional disorder! I don't think it's vain, or excessively emotional, to want to stay a healthy weight and to be happy with my body!

    I don't know if this is how YOU feel about things, but it is clear that you are not happy about gaining weight. Clearly, you are not alone. The only thing I can do is send you another reply, which includes a list of things that I do to try to stay in control of my Endo. I don't know if anything will work for you - it's up to you to look through the list and see if you think anything might help. You are not obliged to act on any of my suggestions; they are just suggestions. However, I do hope that you find something that helps.

    I'm off to find my list...

    Best wishes,

    Elaine Ellis.

  • This is so similar to me its scary !!! I was only diagnosed a few years ago but have had problematic periods since I was 10 and over the years have been fobbed off with various different answers never very helpful !! I now have a great GP and good consultant but at my last lap was told that my endo was too severe and widespread for her to remove and as I had tried nearly everything else, pill, mirena etc that zoladex and hrt was my only option to be honest I was just so desperate for the pain to stop I didn't look into the side effects too deeply.

    Unfortunately the pain relief was short lived and now although I am still on the injections I am waiting to see a more specialist surgeon who will hopefully be able to remove at least some of the endo.

    I am getting married in July and would love another baby,{ I have 2 older children from a previous relationship} but worry with the endo its just never going to happen!!!!!

    As regards my weight I am only 5 foot 2 and have always been a size 10 until the zoladex !!!! I have put on a stone and I just cant shift it and like you it makes me really miserable, people constantly tell me that I shouldn't be bothered and that I am still small etc etc but to me its a huge difference and one that I am really struggling with, even my very supportive partner doesn't understand how awful it makes me feel, and how hard it is to try and get the weight off, I am defo going to try the endo diet and hopefully now I am coming off the zoladex that will help too, sorry for rambling on, hope your lap goes well.

    Take Care Rache

  • Hi Rache,

    You are NOT rambling in the slightest. You have every reason to feel stressed and upset. Things like body image, fertility, marriage... these are all REALLY BIG ISSUES... significant for ANY woman.

    It's hard to deal with things that affect us, without our having any choice, or control over them. Fear of infertility is a MASSIVE thing to come to terms with, whether you already have children, or not. Until you are told that you CANNOT have kids, it makes sense that most people simply assume that it WILL happen. There are many things in life, like this, that we take for granted. It is not until something comes along to make us realise that everything is NOT so simple, that we understand that taking things for granted can be a mistake. The worst part is, that not everyone has this same experience - there are always people who continue to take things for granted, simply because (so far) very little has ever gone wrong for them. Whilst you feel in control, it is hard to understand why other people may not have that same "supreme confidence" - thus there will always be people who do not understand infertility, or Endo... simply because they have not experienced it for themselves.

    The same goes for weight gain. It is very hard for each and every one of us to imagine being in somebody else's position. So, there will always be people who do not understand why putting on weight is a big issue for you. Besides, when you are a naturally small build, most people tend to see you as still being "tiny" in comparison to them - even though YOU know you may be the biggest you have ever been! (And, boy, do I know what THAT feels like!). The sad fact seems to be that people are very irrational when it comes to weight - they make sweeping assumptions that are not always true.

    For example... the assumption that a petite/small built person who is unhappy about putting on weight is just "being vain" or "fussing about nothing". True, we may all notice very large people, and worry far more about THEIR weight gain; but weight is very closely tied in with ANY woman's body image. So, even a very tiny woman who gains weight notices this - she notices that her clothes pinch, or that she looks less toned, or that her body seems less in proportion - and this can still upset her just as much as it can a far larger lady. Besides, there are plenty of larger women who are utterly comfortable with their weight, and who are not particularly bothered about gaining. Others may dislike their size. It's all a personal thing.

    YOU know best how you feel comfortable with your body - it is YOUR body. (OK, I'm NOT advocating Anorexia, here - you MUST stay within a healthy weight range for your age and build). But if shifting the weight you gained since trying Zoladex is the key to your feeling happier in your own skin, then family and friends ought to encourage, and understand. Comments such as "but you're not that big" are usually made with good intentions, to cheer you up... but the truth is that NOBODY can see inside YOUR head. If your weight gain is really bothering it, do keep trying to explain it.

    The simplest way I have found is this...

    Ask the other person to imagine they had a wart somewhere really obvious (or something else visibly unpleasant to them). Then ask if they would want rid of it. Tell them that YOU think they look fine, even though the wart may be really bugging them. If they still say they want rid... THAT is exactly how you feel about any excess weight!

    Doesn't always work... but worth a try, maybe!

    Thanks for your well wishes - I'll be glad when the surgery is out of the way...

    Take care & all the best,

    Elaine Ellis.

  • I can so relate to all of this. I was diagnosed with Endo in 2013 and have gained about 30 pounds within he 2 year period. I have never been over 120 - 125 and am close to 150 now. All of it seems to be in stomach making me look 5 or 6 months pregnant. I hate the way I look and I really hate having to buy large shirts when I was a small. I have taken the depo and the pill together to relieve some of the pain and now I am taking my Lupron shot this month. I am scheduled for a hysterectomy next month. I am tired of hurting all the time and it is really affecting my life. My husband understands that I hurt more often than not but he doesnt understand how ugly I feel due to the weight gain and water retention. My feet and ankles are forever swollen and because I am on them for 8 hours a day 6 days a week it is hard to get relief from that.

  • Hi again,

    Here's the other reply I promised, for what it's worth. Feel free to take from it whatever helps, and discard the rest!

    Anyway, please, please do NOT ever feel like you are alone in what you experience. That is the sad thing about chronic and invisible illnesses - they make people feel isolated. It is so easy to feel caught up in what is happening to you, and to let the rest of the world slip by. I think that's the BIG problem with chronic/invisible illness like Endo - it sort of "cuts you off". You stop being who you used to be, and become somebody who struggles every day to cope with the illness. It's like "treading water". People see YOU on the surface, and you still look pretty much like you; but underneath the surface of your life, you are frantically working ever so hard just to be able to do the things you used to do with ease!

    By the way... THAT'S how I see Endo. A CHRONIC & INVISIBLE ILLNESS. The person with it KNOWS it's ALWAYS there, but NOBODY else does! Still, I've learned that there ARE ways around things. The INTERNET can be your BEST FRIEND!

    For what it's worth (and this is only my opinion, so you don't have to act on any advice if you don't wish to), might I make a few suggestions:

    1. You NEED a good G.P. I cannot stress enough the importance of this! All I can suggest is that being "bossy" sometimes pays off. When you have to book an appointment, explain clearly that you want to see THE SAME G.P. because you have a LONG TERM illness, and you NEED consistency. Explain the nuisance it causes when each time you see someone new, you are "back at square one". If all else fails, threaten to complain (this should be a last measure, because it's far better to politely negotiate) as it MAY get the surgery to take notice! Otherwise, you could consider changing G.P. and looking for a surgery that only has one (or a limited number) of Doctors. If you do want to change G.P. surgery, try contacting your Local Care Trust (NHS) for details of surgeries in your area. You can probably find their telephone number in the phone book, or online.

    2. Asking to be referred to a Gynaecologist who knows a lot about Endo, or to an Endo Specialist, is a very good idea. Many Gynaecologists (and this is personal experience!) seem to be "jack of all trades, master of none"! They hardly seem to have heard of Endo, and appear to be out of their depth when dealing with it. After all the problems I had with my Gynaecologists, I did a search online (try Google or Yahoo, and type in Endometriosis Specialists plus your area) to find the specialist centre I now attend. It was then a case of DEMANDING (and I mean DEMANDING) that my G.P. refer me. To make this sort of request/demand, it is a good idea to have an "action plan". Arrange an appointment with your G.P. and take notes with you, explaining how your Endo affects you, why you feel it is not well managed at present, and how you think you may benefit from being under the care of a specialist.

    3. If you feel you are getting nowhere, you could always try going Private. Sometimes, Private Healthcare is better. You get seen quicker, and can often get treatment the NHS is reluctant to offer (as well as better treatment). Something to consider, if you have the money!

    4. Get CLUED UP, and DON'T be afraid to show it. Here's my personal experience again! I have found that some Doctors can be VERY arrogant. They treat patients like they are stupid - like the Doctor is more intelligent, and always know best. "Playing God", I call it! Doctors like these are a waste of time. PATIENTS ARE NOT THERE TO MASSAGE A DOCTOR'S EGO! You need a good relationship with your Doctors; you need to feel that you can openly and honestly discuss things, and that you get told all the risks and treatment options. You need to have a Doctor who accepts that YOU know your own body best, so YOU may be able to tell them things that THEY were not aware of. Sadly, lots of Doctors seem to know little about Endo. So, it is a good idea for you to read up on it. Ask questions. Take notes. Some Doctors will even accept you bringing info about Endo for THEM! Know your rights, and know your stuff. And refuse to back down if you think a Doctor is wrong, or no good.

    5. Keep a SYMPTOM DIARY. This can be VERY helpful, as it keeps track of a LOAD of information that otherwise you may forget. You can also take your symptom diary to appointments with you (which is useful, as you then have all your info to hand). Your symptom diary can record such things as when your periods are, and how bad or heavy they are (useful to help you spot any irregularities, or changes). Record other things, like daily pain levels, tiredness, as well as further symptoms such as bloating, nausea, etc. These should be your Endo symptoms - and by recording them in your diary, you can keep track of what they are, when they occur, when they are worst, and any changes or new symptoms. You also need to record other things in your diary - symptoms that are not clearly your Endo. So, if you get a nasty infection, write it in your diary. Again, this helps you to spot when such things are happening, and you may start to recognise patterns, if they exist. This could give you an even better clue as to whether it is your Endo that is making you infection prone. Keep a record of mood swings too, and see if these coincide with your periods, or whether it is perhaps medication that causes them.

    6. Try to keep yourself as healthy as possible, and keep up with the things in your life you wish to do. I KNOW this sounds easier than it actually is... however, the last thing you want is to feel that the Endo is in charge of you! By eating sensibly, trying to take exercise when you can, and keeping up a relatively "normal" (hate that word, what is "normal", after all?) life, YOU stay in control. You are giving yourself the best possible chance. There is information about a special "Endo Diet" online (it tends to look at removing processed foods). Gentle exercise like Pilates or Yoga, or just gentle walking, can help stretch out achy body areas - and just get you feeling a bit more "perked up" (exercise = natural endorphins). Don't overdo things - make sure you give yourself "me time". You know, just "chillin" and relaxing - a nice long bath, or a snuggle with your family or pets, or unwinding on the sofa with a movie - anything that makes YOU happy. SELFISH IS ALLOWED occasionally. I say this, because many people with long term illnesses seem to forget about time for themselves; they are so busy feeling ill, and feeling guilty for being ill, that they start to think that time spent on themselves is "selfish". It is NOT! "Time out" is REALLY important to "recharge your batteries"!

    7. Support network is important. Try to get the help and understanding of family and friends. EMPLOYERS can be downright crass! Most are totally ignorant about Endo. The charity Endometriosis UK produce a booklet that you can download and give to your employers. Again, it is important to know your rights. Your employer COULD be guilty of discriminating against you, if you have a long term health condition but are being punished at work for this. Speak to ACAS, or your Union (if you are a member) about it. If you are studying, Universities and colleges often have Student Support departments where students with personal health problems can get advice and assistance (some even have Disability Advisers). Support groups can be useful too, if that's your kind of thing. Maybe you could look online for ones in your area?

    8. If pain, and pain medication are problematic to you, you could ask your G.P. for a referral to a Pain Management Centre/Clinic. These services are usually multidisciplinary teams including Psychologists, Pharmacists, Occupational Therapists, Physiotherapists... and they are designed to meet the needs of people who suffer from long term pain.

    9. Just a few other "odds and ends"... Peppermint tea, and Ginger tea, I've found good for bloating. Peppermint tea is a natural diuretic (helps with water retention; makes you pee!). Ginger aids digestion. Foods like ginger and garlic can boost the immune system. Spinach and broccoli, as well as pulses (beans/lentils/peas) can be good sources of extra iron if you are anaemic. Processed foods (junk food) and sugary drinks can be a nightmare; partly because they increase bloating, but also because, if you are "run down" they can feed the "bad" bacteria and other things in the gut, making you feel even more ill. Besides, they can cause weight gain, and with Endo this can be a problem in its own right, because many of the so-called "Endo treatments" (the Pill, the Mirena, Hormone Treatment) cause weight gain, too. Steam inhalations can be good for sinus and respiratory problems - try putting in a few drops of Tea Tree or Rosemary oil, as these have antiseptic and antifungal properties. St. John's Wort can be a good natural aid to help with mood swings. Echinacea is useful to boost a flagging immune system.

    Blimey! (You can tell I'm Northern!!) - very sorry that this is such a LONG reply! Anyway, that's pretty much it. I truly hope that you find some relief from your symptoms. Do not give up. Remember, there are always people better off than you, and always people worse off. That's life! Just know that there are some people who struggle to cope with stuff that is NOTHING compared to Endo; so YOU are a pretty GOOD coper, really.

    I shall stop here, as I'm probably in danger of seriously boring you! Wishing you all the best... and if you ever want to e-mail (elaine-ellis1@hotmail.co.uk), or keep regularly in touch, feel free.

    Take care,

    Elaine Ellis.

    P.S. Just a few useful contacts:

    1. ACAS (info about work, rights, and illness/disability) - telephone 08457 474747.

    2. Endometriosis UK (charity, provide LOTS of info on Endo, treatment, etc, including info for medical professionals, and employers) - endometriosis-uk.org . They also have a Helpline (look online for opening times) telephone 0808 808 2227. You could even download a handbook from their list of publications to take to work with you to help explain your Endo.

    3. Endometriosis diet - endo-resolved.com/diet....

    4. About Chronic pain management Services - nhs.uk/Livewell/Pain/Pa...

    5. How to find an Endometriosis Specialist - bsge.org.uk/ec-BSGE-acc...

    HOPE some of this helps you. Best wishes and good luck!

    (Hell! I AM bossy! I'm a Social Worker and Psychologist by training!) SORRY!!

  • Hi Elaine Thankyou so much for all of this, loads of info and advice, Its so nice to know there are other people in the same boat and your not alone. I am also Northern so love a good list !!! I am off to look at all these websites now but will definitely email you with an update

    Thanks again Rache x

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