The battle of the bulge is what is what I like to call it. Chronic inflammation, Bloating, weight gain and pain.
We as Endosisters know all too well how much of a problem this is, how annoying it is and how painful it is.
I am Wheat, Spelt and Dairy intolerant so I do my best to remove those from my diet but really it is hard isn't it? I have tried every single diet known to man and there were very few that helped. Paleo takes away all grain and dairy and for me that did help with the pain in the bowels that I get but I still felt bloated.
The hard part with dealing with this problem is medications and hormones because you are constantly craving carbs and usually bad carbs and complete junk. Well for me that is the way it is for sure.
Since my first surgery in 2007 the same year I was put on Marvelon continuously after Lupron I have never been able to keep weight off and I am constantly bloated all the time. I don't get a period which is great but I hate feeling like I am pregnant all the time.
It has been 6 yrs now and I have been on at least one med that entire time so the chances of anything changing for me is minimal. I would say however I don't exercise because of the extreme chronic fatigue from the Endo and Fibromyalgia. I am tired and have no energy ever so I can see also why the weight seems to stay on.
Where does the weight go with you? Mine for sure is in the thighs, hips and Belly. Never to the place where I want it to go like my breasts LOL..
I know that Diet, lifestyle, and exercise are key to combating this problem but as any Endosister knows sometimes its just quite impossible and you get down on yourself. It is like a vicious circle.
What do you do to help with Chronic inflammation, weight gain and bloating?
Hello Angela! I now know your name at long last Lol I thought I'd leave you a post to say "Hello" and also have a moan about this weight issue. I am a decade older than you and have only in the last 3 years been diagnosed with Endo. So I've had 3 Laps within 2 years! I had all sorts done -- bowel adhesiolysis, ovarian cystectomy, rectovaginal module and Endo. Hopefully, they tell me that all Endo was removed, freed up my ovaries and bowel that was drawn up to the back of my uterus. How can a woman be so twisted and gnarly inside is beyond me. AND men moan when they have the flu! Tsk! I am now 5 months post op but am not 100% as yet. Since being back at work -- 3 months now, I am still so fatigued. When I am not at work I am in bed. I just about have enough energy for work which is sad. I have also been besieged by a slew of ailments recently...from nausea to being out of breath. The Pilates that I started to help strengthen my core muscles have fallen by the wayside. I have also gone back onto my AD's that I was trying to wean myself off! What is that all about? Lol I am depressed...yes. The Mirena that I have -- inserted twice at first and third Lap -- is a pain in the bum or womb depending on which way you look at it ;) I have been begging my GP to take it off but she wants me to wait till after Christmas. Grrr!!! I suspect that it has a lot to do with this weight gain of mine -- all post-op. I feel bloated, tired, breathlessness and lost my Oomph which all leads to me feeling depressed. My GP now thinks I have got Asthma. Can you believe that? I developed a cough when I had a cold and this cough has been with me for almost 2 months. I am currently using this Peak Flow gadget thingy for 3 weeks until I go back to her. Oh, and another thing -- I came off most of my painkillers only for me to develope tendonitis and bone degenerative disease in my big toe!!! If it is not one thing it is another :'( Is it just me or are all Endo sufferers prone to developing secondary illnesses/conditions? Sometimes I wish I could sleep in a cryo-tube until they find a cure for us! Lol Ok. Moaning session over. That has been so cathartic. Thank you Angela :)
ReplyDeleteOkay so lets try this again LOL.. This time I hope to not erase it all :)
ReplyDeleteSo yes the secret is out my name is indeed Angela ha ha.. that is a crazy amount of laps in two years however I was astonished by this one girl who was my age (36) and had already had 28 surgeries since the age of 16!! WOW.
I too had a rectovaginal nodule removed in 2007. That really helped let me tell you. I had such severe rectal pain all month long random knife stabbing pain and for some reason it usually happened when I was driving so I would say that I am glad that the nodule was removed.
I totally get the depression part and fatigue. I came off of cymbalta last November and it was brutal. I have tried my best to overcome depression but living 23 yrs like this has really done me in. So when I feel that way I post pictures of jokes and encouragement to help others, for me this distracts me from the reality of my depression lol.. I have been tired I mean really tired like you say since I was 17. Diagnosed with Fibro at that time and Chronic fatigue syndrome 10 yrs before Endo. I really feel my Endo triggered the Fibro, but that is just my opinion of course lol.
I am going to tell you I too have had serious issues with Co-morbid diseases. My gums and teeth have never been the same since Lupron, I had to have surgery on both of my big toes, I have DDD in my Jaw (most likely from surgery in 1996) I have a cyst that had to be removed from my nose after 2 yrs of horrid pain only for it to come back again in the other nostril. UGH.. funny enough in the last couple of months I have not felt it so that is a good thing. I have had a cold since July that for some reason I can't shake and am on puffers for the wheezing however I am sure mine is from smoking. :S
So that being said I am a case as well LOL.. If it isn't one thing its another. Sometimes I wish I never knew what I had because it has only made it worse for me I feel, I think about it all the time. When I sit on the toilet the pain from the urethra every single time reminds me of that or the bowels.
I am glad that there are other women out there that can share these crazy things because at times you feel like you are doing just that "Going Crazy"
Hi, Angela! My name is Jessie from Rochester, NY. I'm so glad to stumble upon your blog. I need some relief by reading other women's stories. If you don't mind, I can share my experience?
ReplyDeleteI'm now 24, will be 25 on December 16th. I had painful periods all my life, school will be missed and work also. But one college semester I had to drop out because I couldn't walk and the pain was unbearable. I was in and out of the hospital constantly and they had no clue what it was. Test after test, I had a 6-7 cm cyst on my right ovary. It took me 5 years to finally graduate college from this disease. I was diagnosed with Endo the day after my birthday in 2010. I guess I had some adhesions but my old doctor didn't even try to take it out? So then I met this new doctor at her office and I adore her to this day. I had my second lap 10/26/12 and I felt great for about half a year then it gradually got worse again. It felt like I had a cyst each time it got worse because I remember what the symptoms were like. The U/S proved me wrong each time. Sometimes even when I'm in so much pain I don't bother going to the doctors because of the disappointment. I guess I want something there physically so my fears are validated so I'm not thinking I'm going nuts, if that makes sense. All day yesterday I was probed, poked and prodded. I had and U/S to see if I had a cyst, yet again I was wrong, but my doctor offered surgery and I said yes. So I can't wait. It might not mean anything to anyone I know and love, but to me it's a prize for being so strong for so long. Actually, being strong each day is so tiring.
As for my diet, I don't have the best diet in the world. I am an extremely picky eater. When I read up the Endo Diet, you basically starve. So I continue to eat the way I've been eating since forever. I don't look like a super model either, so I do have some weight, but my weight fluctuates and it's irritating. I'm afraid to even try out different birth controls because of the side effects. But half the time no matter what I eat or drink, I get really bloated looking like I am pregnant. So I decided to take charge to see a nutritionist and go from there. Hopefully I will have some luck in that department. I use to see a Pain Specialist until she degraded me. As a patient, I thought I could tell her everything that's on my mind about Endo and how it upsets me. She told me that I should see a therapist because I'm not handling it right and should get over it because there is no cure, so I should suck it up. She tried denying me of pain killers which is the only thing that helps when it hits me hard. I told her I'm not a damn druggie, either find a cure or give it to me. She gave in.
I have Fibromyalgia, Exercise-Induced Asthma, IBS, Anxiety/Depression (I think that's it?) It's really hard to be active at all when I'm constantly tired from doing tedious things, hence no exercising at all. I don't even know where to begin and how effective is it. So, I'm really lost.
I have a boyfriend of 6 years that is very supportive. To this day I still feel so guilty that I'm burdening him and everyone else with this stupid disease. I'm still not over the fact that I have to live with this with the rest of my life. I'm deathly afraid that I won't have kids one day. One day I'll be okay, the next day I just hide in my room and cry because I can't really grasp all the feelings that I have.
I hope I'm not rambling on and on, but I thought I'd share. Thanks!
Thanks so much for sharing :) I always love to hear about other peoples journey's because we are all so different. I agree with the diet it is truly hard to stick to. I have family and I do the cooking and its been hard cooking certain stuff for them and certain stuff for me so I do what I can and I don't put pressure on myself.
ReplyDeleteI have been there with the pain clinic. They wanted to dump me full of heavy narcotics as I as well have various Co-Morbid disease such as Fibro, Supposed IBS, Anxiety/Major Depression Disorder and TMJ.
What I have learned is that people who have never suffered the way we do will never begin to understand what we have been through at all that is why I usually don't say anything to anyone, it is just not worth repeating it for one, and they don't get it so I am wasting my breathe.
I am so happy that you have someone supportive in you life because at times it is what matters in the end. I feel the same way I too feel like a burden to so many that is why I do it all alone. Sad but it has just been easier that way.
I too am the same, I will have good days and bad with thoughts of suicide because its been such a long journey and I am tired. I can't picture myself doing this the rest of my life.
I have a link of something I just posted about this I will post it here under this one, it is well written and it makes you really think and I have found that it has helped me realize that I have to accept this is who I am. I am a different person now, Endo and all the other diseases has changed me and its for me to accept it and stop being so hard on myself.
Also I am going to post the spoon theory just in case you have never heard of it before
http://endendoforever.blogspot.ca/2013_10_01_archive.html this is the link
ReplyDeleteSpoon Theory link http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/