After having endo removed just under two years ago, I'm now experiencing the delights of round two... This didn't happen last time, but I am losing weight fairly rapidly (a stone and a half in a couple of months) and then another four pounds in the past fortnight. I've always been slim so now I am underweight (not dangerously or anything, yet) but I just wanted to ask if anyone else has experienced weight loss with endo? I get bad nausea and stomach problems every two weeks with ovulation and menstruation but I eat normally and (easily!) get 2000 calories a day. I exercise but not excessively ( 2 or 3 30 min jogs a week...). And even when I am poorly I do still try and make myself eat because I know I'm losing weight. Plus I'm vegan, following the endo diet and into my organic veggies so I eat really healthily anyway... But I am still losing weight!? Is my body maybe trying to cope with the endo and using up energy that way!? I definitely don't have any medical problems that cause me to be slim as believe me it has always been a huge effort to be slim for me my whole life! I'm on no medication (other than painkillers, obviously! And I can't take any hormonal meds for endo) and I have no history of eating disorders so can't be fooling myself into thinking I eat more than I do!
Has anyone else experienced unexplained weight loss with endo before?
Also, if you are underweight can you still have surgery?
I am due lap number two in a few months....
Thanks very much, any advice much appreciated!
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Flynn_Maverick
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Also, if it makes any difference, I have endo in the usual place - pelvis - and on my diaphragm, which has helpfully glued itself to my liver in two places. Ouch X
Not sure if this helps, but I have been losing weight too, not sure if related to endo though. My job is very physical, so I get a lot of workout but I can't seem to gain muscle mass. I eat a lot, probably more than I should because after hard days at work I often crave unhealthy food. But I weigh 54 kg (I'm 1.72m tall) and I'm not gaining even though I am eating a lot.
Also, I was 78 kg just two years ago, and started losing weight rapidly when I got off birth control and since then is also when my endo symptoms have started getting worse. I changed my lifestyle a lot during that time so that might be why I lost so much weight without even trying for it.
Hi, thanks very much for replying! Your last comment about coming off the pill and then weight loss kicking in and endo symptoms getting immediately worse sounds very familiar (I didn't have endo when I went on the pill, as I had it removed surgically eighteen months previously and afterwards I had zero pain, then just everything went wrong as soon as I went on the pill...). I hope things have improved for your since? Thank you again for the reply and all the best x
Things have improved generally, and thank god my endometriosis formed a 5x6 cm cyst that was visible on internal ultrasound, so I am finally getting help. They put me back on the pill which I am not happy about, but it stopped the worst pain. I will see a consultant on wednesday and I'll see if they decide to operate, I hope they do.
I think the pill is supposed to help us since it stops the cycle, but as soon as I started again I got a period just two weeks after I started and also my feet were swollen and my bowel symptoms are still the same. At least the worst stabbing pain around my cyst is gone, just dull pain or pressure. But I just started so if the side effects don't stop I'm going to have to ask my dr for different pills. Maybe the pill just doesn't agree with some women... If you have similar experiences I'd like to hear about them
Hiya, I'm sorry to hear you have such a huge cyst, they have to remove it surely? I personally am of the opinion that surgery is the best way to remove endo (although terrifying) and the side effects of the pill are utterly horrifying. I have never had mental health issues before, but I was told to tri-cycle the pill post surgery (by my GP not surgeon) with the theory that 'the less you bleed the less chance you have of recurrence' - I was so depressed, stressed, miserable, paranoid, nasty and anxious it nearly cost me my wonderful boyfriend, friends, job, and I was a nightmare to my amazing caring parents too. I came off it and was back to normal within three weeks. Just ask your friends or partner to keep an eye out for any mood changes on the pill, as I believe it can be a very, very dangerous thing for some people. You clearly have doubts about it, may I ask what you have been through, or are worried about? Xx
I'd say almost 25 kg difference in weight when on and off the pill is a lot, but apart from my body probably not working the way it should, being a little chubby is not what I'm so afraid of. One big concern is blood clot since my mother has some issues that make her more likely to get blood clots, and I have no idea if that's hereditary and how would I know if I had it too. Also my mother never actually talks to me about specific conditions, she likes to complain about her health but I don't know what to tell the doctors to look for because my mother never actually says her diagnosis! It's also difficult to keep track of all the illnesses in my family to tell the doctors at my pre-op assessment.
Also there's a long history of mental illness in my family and I know the pill can trigger some nasty issues. My friend said she was on the pill shortly and was sobbing all the time and actually became suicidal. I had an episode of really bad anxiety when I was for example afraid of going to my yoga class (a five minute walking trip) because I thought something bad could have happen to me if I went outside. I kept obsessing about accidents and crimes that could happen. I never thought it could have been the pill but surprisingly, I never got that bad again after I stopped using it. Since I stopped using the pill, it was like my eyes opened about some things and I finally stopped blaming myself for everything and got my life together.
Hiya if you are concerned about something as serous as blood clots, definitely reiterate this with your GP and then maybe ask for a second opinion if they try and fob you off. I shouldn't take the pill because I get migraines with aura, which I told my GP, but she still insisted which resulted in six months down the line me spending hours in eye casualty and being checked that I wasn't having a stroke (big spots of my vision disappeared....).
Could you maybe ask your mum to be more specific, if you explain that it might help you get treated more effectively and safely? It's hard though as it depends what kind of relationship you have with her...
That sounds like me, these obsessive, paranoid thoughts just creep up on you until you can barely function. And then once you're off the pill it's like you can't understand how those thoughts ever ended up in your mind in the first place?
If you're not getting the info and support you need from your GP you could try making an appointment privately with a gynaecologist? They have up to an hour and actually listen to you and discuss treatment with you, not tell you what you must take or do. They very much take into account what you personally feel is best for your body. If you have concerns about mental health problems surfacing because of the pill, or blood clots, they will have the time and experience to advise you. It depends on who you see and where, but I pay £150 per consultation and there is no obligation to have private surgery etc, they can diagnose you and then transfer you to the NHS (you just have a long wait on your hands....)
I hope that helps a little, all the best and I hope you get something sorted without compromising other areas of your health x
thanks for your reply! I also go to a gynaecologist privately, she was the one who finally helped me after years of being fobbed off. She really believed me when I said I was in pain and she found my endometrioma on ultrasound. I love the doctor, she's the best! When she prescribed me the pill, she first asked me about my experience with the pill before, then she picked one that was the most "natural", and let me read a leaflet about the pill first. we agreed I'd try it, and call her if I felt any side effects kicking in. She warned me the first three months my body is just getting used to it so there might be side effects that will go away later, and I have an appointment at a hospital for pre-op assesment this week so I wasn't in a hurry to call my dr.
Hello, I've been reading your thread and am really interested in the pill and how it makes you so crazy as I'm the same. Could I ask what pill (s) you had that made you paranoid and anxious? Thank you.. Lula x
You sound like me four months ago! I also lost a lot of weight before my surgery because I was in so much pain and under a lot of stress with work. It wasn't too bad though - I was just under 7 stone which sounds terrible but I'm petite and only 5"2, my bmi was 19 which was underweight but not too badly. They were concerned about my weight loss but definitely not enough to stop me having surgery. I've put more on now (thanks to the depo).
Hi thanks very much for this, and it's reassuring that they don't stop you have surgery if you're underweight. I haven't worked out my bmi yet but I will of course keep an eye on it as I'm determined to stay as healthy as possible pre-op. maybe for me it is the nausea/ stomach problems causing the weight loss, also I am very stressed about the op... I have a 6-8 month wait on the NHS but I know it's possible to get it sorted in 2-3 weeks if I go private again. Also because it's on my diaphragm if I eat as much as a pea my stomach presses on my diaphragm/ liver adhesion and it causes pain. But it is very helpful hear (although of course horrible for you) that other people experience weight loss and not just weight gain with endo... This disease really does have every variation of every symptom under the sun! No wonder it is so difficult to diagnose!! thank you again for your reply and I wish you a happy, healthy Christmas and new year! X
Hi, I had the same last year, when my endo was really bad. Initially I thought it was coming off the pill that caused the weight lost, I lost over a stone. I went from 9 to 8 stones in just a few months without doing any different. I was eating the same and I actually stopped exercising as I was in a lot of pain. Now I think it was related to the endo somehow, i am still of the pill now but since o had my operation to excise endo I have put the weight back. Again there has been no changes to my diet so I definetely think it was the endo that caused the weight loss somehow xxx hope your second lap helps xxx
Hi thank you very much for your reply, sorry to hear you went through the same thing. Although it is helpful to hear that other people experience this symptom too, as a lot of ladies on here seem to have the opposite thing happen because of hormone treatment... I always used to have to make such an effort to stay slim but now I am having to have a tablespoon of peanut butter with every meal just to slow down the weight loss. Also it's one of those symptoms you can't really complain as I'm aware that whenever I say I'm losing weight uncontrollably friends/ mum/ boyfriend who all want to lose a few pounds must think 'for god's sake! What are you complaining about!?' anyway thank you again and I hope you have a pain free Christmas x
Hi I have just had my 2nd lap on the 15th of Dec and currently in recovery. I'm petite slim build anyway and always have comments that I'm too slim and I got worried also about weight and surgury. I have lost at least 2 stone and I was only 8 stone to start with, I thought they would deny surgury but it was fine. I fount my weight loss was due to stress with work, being poorly and in alot of pain all the time. Fingers crossed this 2nd lap has helped as last time they didn't remove it all!!! I know how draining it can be but all I can say is this is a time to fully love and take care of urself in all ways as stress is a big factor. I hope u find some relief soon. I'm always here if u need to chat xx
Hello! Thanks for replying, and I really hope your recovery is going well! It's very reassuring that they still operated on you despite the weight loss. I think, at this rate, by the time I get my second lap (first also didn't remove everything, which is beyond annoying!) I will be about 10 pounds to a stone underweight which isn't great and I'm sure it makes recovery more difficult but there you go. Anyway thanks again and I hope this lap was 100% successful this time and you recover in time to have a wonderful Christmas! X
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