Endometriosis / Ovarian Cancer and weight gain

[sweetelle]

After reading everyone's posts on this website its sounds like we are all having the same problems with Endo, I'd been suffering with pain and sickness for many years before I finally got sent to get a ultrasound where they discovered that i had a 11cm tumor on my ovary (later it was found to be a Endometrioma) . Unfortunately I could not save my ovary and had to have it removed . After a biopsy it was discovered that i had borderline ovarian cancer. Luckily the left ovary is still ok and I will just require monitoring to ensure that any further endometriosis growths don't become cancerous. I writing this post for couple of reasons one mainly is to make people aware of the importance of getting a ultrasound (I didnt even know i had Endo it when i went for the scan) ; for years and i mean since i was 13 I was palmed off as the extreme pain as being "normal" and have spent most of my life taking large amounts of pain relief. It makes me angry when I think that if just one of the multitude of doctors i saw over the years about it had sent me for a ultrasound I could have saved my ovary. I am extremely lucky that the cancer was caught early and touch wood will not return anywhere else. I would hate to think of anyone else out their suffering in silence . So ladies insist on a ultrasound! Just as a footnote im 33yo fit healthy , don't smoke and rarely drink so don't think this couldn't happen to you.

Right well now that's out of the way just wondering if anyone else has tried the whole gluten and dairy free diet recommended for our condition ?? as in gone the whole 9 yards and had much sucess with weight loss? I eat a very healthy diet and work out 3 times per week but still don't seem to be able to shift much weight . If anyone knows any good diet plans or books especially tailored for endo sufferers id love to hear about them. Thanks in advance

Eloise

[leto]

just found out this morning i have endo ,started this gluten and dairy free diet today , usually look 9 months pregnant after eating even the smallest morsel and in chronic pain ( collapsed last night with pain ) ate about 20 mins ago and so far very sore and bloated but nowhere near the usual pain ( couldnt have been sat typing yesterday ) going to be quite a life changing experience thou love my tea and coffee ,will now be finding an alternative ,red meat has to go , not holding my breath but anythings worth a try

[Hidden]

Hi Eloise ( great name by the way!)

I'm personally on that end in which you are advising & at the moment ( I know it may sound stupid) but I keep giving up as my G.p is just so not interested at any of the symptoms of endo I have been describing to him now for the last 4 years now.

It probably hasn't helped as I have given birth to my 2nd child 5 months ago now & my g.p seems to think it may just be my pre-pregnancy hormones shifting its way out of my body.... " cheeky b***ard "

I'm also a 33ry old healthy woman as it happens & if my assumptions are right I would just like to be officially diagnosed.

Now with my Lil rant over I think its worth a go by trying to go gluten & diary free as even if it don't make much of a difference i believe eating as healthily as you can gives you a natural boost in life & as a result shows on the outside so much that people will most likely start to give you complements on how great you are looking.

xx

[Hidden]

Hi Sweetelle

Thanks for your post and for telling us your story. I think it's a good thing for all of us to be aware of the risk of malignancy. Yes, it is rare but it can and does happen. My biopsy results came back last year as clear but I was told, in these exact words 'it's good news because it's not malignant' - I was very shocked because I hadn't even considered that my ovarian or peritoneal cysts could be malignant.

I had bilateral endometrioma but also had a septated para ovarian cyst which grew extremely large - it was named a peritoneal post inclusion cyst by one of the consultants. Unfortunately it has grown back again, and this time is multi-septated and I am pretty worried about it. I am back for another next week, only 3 weeks after the last scan so it seems the consultant wants to track it.

So, I think your message is a very wise one, we may like to ignore it but we shouldn't - particularly if this can happen to someone as young and healthy as you. Sadly these things do happen. I knew a lovely young girl in her mid thirties who very sadly lost her battle with ovarian cancer. And last month, my lovely lovely ex boyfriend has been diagnosed with stage 2/3 (not determined yet) bowel cancer - I have been an emotional mess about it as he is only 39 and I'm angry it has happened to him, someone so good and so young - and so seemingly healthy (he is fit, non smoker, moderate drinker, slim) We shouldn't ignore our pain and we should all have regular scans. Never take health for granted.

I am personally going to pay myself, to have my CA125 levels monitored yearly. Apparently we all have different levels, and particularly those of us with endo do tend to have elevated levels anyway - but there is a new study where they are tracking CA125 levels for individuals over time. If there is a large increase over time for an individual, then this could indicate that we need to get checked further.

Here is the article I read, published this year - it is worth a read.

telegraph.co.uk/sponsored/h...

Re the endo diet, I am very on and off with it. Sometimes I feel worse the more veg I have. But, I have been eating more chopped raw veg the week and I think it's helping my bowel a bit - but not the pain, unfortunately.

[sweetelle in reply to Hidden]

Hey Yellowrose,

Sorry to hear about your ex-boyfriend, I'll keep my fingers crossed for you that he gets some good news soon. I to have a scan and a blood test every six months to make sure that the cancer doesn't come back in the left ovary . Its been suggested that I consider removing the remaining ovary due to the cancer risk but this is something I find it hard to comprehend . I don't have any children nor am I in a serious enough relationship to be considering having a baby. I can't say as I write this I regret much of how i've lived my life having travelled extensively my only regret really is having not done more travel.

Its a funny old thing cancer I only told a handful of people about it and some have been supportive but most have been a little dismissive I can't quite work out whether they are avoiding me because they can't quite conceive of the idea of me dying young or whether they really just don't care. Now ive had the sort of all clear if people ask why i haven't been working I simply tell them. Just wondering if you have been told anything about checking for Breast Cancer? Apparantly there is a link between Ovarian and Breast Cancer , (same faulty gene) I checked this with my oncologist and he said that if you've had Breast Cancer you have a two fold increased chance of getting Ovarian but not the other way around (weird i know) ; that didn't really make sense to me so thought i might ask you if you'd heard any different .

[Hidden in reply to sweetelle]

Hey sweetelle

Thanks for your kind words about my ex. It floored me if I am being honest, we were together for many many years from 16 yrs old, still distant friends but always care for him because he's an incredibly lovely guy.

I'm sorry how people reacted to you since borderline cancer, that is such a scary thing to go through and it's the time when you need the support of people.

People are so strange in how they react to ill people, and alot of people say it's because those people don't know how to deal with it - but I find that a poor excuse and quite frankly, it's not good enough. I have been in contact a fair bit with my ex since, and it's been so so stressful to find the words to say to him, but there is no way in the world I was going to avoid it - just as people shouldn't have avoided you.

I know it's not really comparable, but I experienced the same since having surgeries for the endo - people who I got on so so well with before, I have not heard from. The truth is, some people can't deal with it so they then don't even try, or if you are unwell and not 'in the scene', they lose interest - it's very shallow and we don't need such friends.

Re the gene, it is the BRCA1 and BRCA2 gene mutation, and you are usually advised to take the test and 'genetic counselling' if a mother, or sister or other close relatives suffered from breast or ovarian cancer prior to menopause. I don't know too much about the relationship between breast and ovarian cancer but I believe there is a link and associated risk between the two, but I am not sure which is which.

Here is a little document i found which may help, but I would talk to your GP about it, given your circumstances. It's something I am considering having had 4 maternal aunts who all had post menopausal breast cancer - so I am not quite sure what the risks would be but a nurse at my GP surgery did once offer me genetic counselling.

[sweetelle in reply to Hidden]

I completely agree with you that the "I can't deal with it" as a extremely poor excuse for not being supportive . You feel like saying erm excuse me ? Im the one with stage one cancer , I'm the one who may never be able to have children so quit being so selfish and be nice. A friend of mine had melanoma in his leg and I have to say the very first thing that occured to me was I must take him out for a few drinks to cheer him up and go to a few more of his gigs (hes a musician) he like most of us wasn't looking for sympathy just support. You really find out who your true friends are in these circumstances. My auntie also had breast cancer so i was going to go for a scan to be on the safe side. . Not sure about getting the gene testing still trying to get over the loss of my ovary so might wait a little while for that one. I'd say it may be pointless having already had cancer id say that means i have the gene? not sure . Well good luck with your tests

[Hidden in reply to sweetelle]

Hiya.. No, you may not have the gene - it could have been the endometriosis that caused cell changes within that ovary - and it's best to remember that that is rare and you were just unlucky those changes occurred, but lucky that they found it.

Regarding losing an ovary - please try not to worry about that - you will be able to have children with one ovary because the one remaining ovary compensates and should release an egg every month.

If you do want children, maybe best to think about it over the next few years - but you can't force that feeling. Mind you, I wish I had starting trying earlier. I am a year off 40 and have been given a very small chance of IVF working and sadly I regret not acting whilst I was younger. But being a parent is not the be all and end all for some people. But I admit, when its get to approaching 40, most of my friends have now had children and you do get excluded alot when this happens, their lives change dramatically and they don't exclude purposefully, it just happens. It's awful, I used to have a crazy social life but everyone around me is settled with kids, I am only one of 2 childless from all my friends I grew up and went to work with, and that one friend has started 'trying' now and she has no issues so will likely be pregnant soon.

That's just my word of warning on that issue...I wasn't really maternal at 33, but something kicked in when I was 35/36 and I just wish Id tried earlier.

[sweetelle]

Hey Abenaa, Its crazy hey?, how many doctors simply dismiss your concerns and make you feel like your just being a drama queen ! I would say in your case if your current GP doesn't want to know them you might want to look at finding a new GP more sympathetic to your concerns. One thing ive learned is if your not getting the support you need seek a second opinion . Endo really is a marginalized condition . Im trying the Gluten free thing at the moment but am finding it a little tricky on two fronts Gluten free bread tastes terrible (LOL) and Gluten free products are nearly double the price. I hope that you get a proper diagnosis soon.