Endometriosis UK

My thoughts are driving me crazy and I'm scaring myself!

So I'm sure we've all been there ladies but at the moment my head won't shut up worrying about cancer. I just want to run it by you guys and check if I'm going nuts and maybe you could help me relax a little. I haven't been diagnosed with endo yet I'm having my lap on May 20th but the gyno thinks it's defiantly that and possible PCOS (mother has it). I have had the worst symptoms and pain for 3 and a half years but looking back i think i have had the less noticable symptoms since age 13 when i started my period.

Of course it's difficult because the symptoms for many gyno problems are the same but I read that cancer symptoms are constant, bloating constantly and pain constantly and break through bleeding etc. Well my symptoms aren't constant, they come and go in a cycle. I know when they are going to appear and I'm prepared (as much as i can be).

On my period I generally feel fine, apart from period pain of course, and the week after my period im good it's the two and a half weeks after that that are complete hell. I don't get break through bleeding at all it's just clotted and almost black (although, last months period was surprisingly normal, red and watery, it hasn't been like that for years!) Fatigue that comes and goes, nausea and vertigo. Pain during sex, back pain, kidney pain that comes and goes (kidneys have been CT scanned and checked, they are fine so gyno thinks endo had spread) sciatica pain that comes and goes, my whole right side will go numb and tingly and 'weak', this lasts only for a week pre-period then goes (again I have has xrays and scans to check for nerve damage and slipped discs etc but all was fine). UTI symptoms that come and go, including frequent urination, pressure down there, that fullness feeling and constant small trace of blood in urine (tests done to rule out kidney problems but all where fine again so gyno put it down to endo again). Really painfully sore breasts that come and go. And a strange new addition, when my nerve pain flares up (sorry for TMI) my clitoris gets extremely sore, so sore i can't stand up I have to lay down with ice inbetween my legs :( I've put on weight because one day all i'll want to do is eat sugar and crap then the next few days i wont have an appetite. I've recently gone on the endo diet and cut out dairy and i feel alot better, but my body only seems to want sugar!

I know i don't really have any cancer symptoms i'm just really scared :( I've had 3 ultrasounds, a transvaginal, 2 CT scans and 3 xrays in the past 2 years and they all said I was fine (apart from transvaginal couldn't show left ovary which gyno thinks is blocked or stuck with adhesion). Them plus a tonne of blood tests and urine tests, all they ever showed was anemia which i always get on my period.

I know i'm just freaking out but im sure im not the only one of us that have before, thanks for reading girls I appreciate it. Hope you are all doing well xx

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I have very similar symptoms to you and it's hard not to freak out when you have so much going on. A lot of Endo symptoms and bloating can also be symptoms of other things so I'm always scared incase something has been missed or misdiagnosed but most of the symptoms you describe seem to be quite common amongst some women with Endo . I try to limit my dairy and eat gluten free but it isn't always easy or cheap. Gluten free has definitely helped with pain but it can get disheartening making changes and still not feeling well so my diet has slipped a bit recently.I also have Fibrocystic breast so my boobs are really lumpy and get painful so that also causes me worry.

I hope your lap goes well.. I'm booked in to see my consultant for my 5th surgery soon. xx


It's not cancer - none of the 250+ cancers gives you the huge number of symptoms you are suffering but endo will and everything you have written is screaming endo.

Not sure that endo is really a better option than cancer anyway as I know plenty of people who have had cancers and survived and have had years cancer free or in remission. Both my parents were cancer survivors (and other relatives too - all different cancers) - so I know what they went through, and it wasn't a patch on what I have been through with endo.

In most cases their cancers were picked up early enough for a decent surgical excission (which is fast tracked for them) followed by therapy and monitoring. And in only one case did their cancer cause pain. For most the cancer wasn't painful - just a lump, or just a kidney that wasn't working well, or just a lung lobe that caused a cough. Endo can be an extremely painful illness, but cancer rarely is till the later stages by which time you will have probably had many other noticeable typically cancer symptoms.

Cancer has the advantage in that most can be cured or at least removed entirely with little chance of it coming back when caught at early stages, and even in later stages -depending on the cancer you can still live a full and active life for many years. some are slow growers some are rapid.

I don't have a full or active life, I doubt I ever will again with my endo. The fatigue alone is incessant.

I am not dismissing the seriousness of cancer for some patients- but there are so many cancers and they do not all cause anywhere near the number of complications that endo presents to patients. There are no macmillan nurses for endo ladies on the same drugs as cancer patients. There is nothing like the awareness or the funding or the hope for endo that there is for cancers, yet it is a much more widespread persistant condition in the general female population.

If you have got endo you are 30% less likely to have cervical cancer than someone who does not have endo. There's a good fact for you.

Ovarian cancer is a cancer of post menopausal women in the vast majority. It is very rare indeed for women who have not yet menopaused unless they are predisposed by having the BRCA1 and 2 genes which you can be screened for.

Bowel cancer too is one which is much more common in older people, the national cancer screening program for bowel cancer starts when you reach aged 60. I guess you're some way off that yet.

Yet over 10% of women of all ages have endo- so if you were to stake your money on any of them which is most likely ...... endo of course by a very long margin.

If there was a hint on your scans and test results so far that you may have a cancer of some sort - you would be seen to very hastily indeed on the NHS. They have a fast track system in place for anyone suspected of cancer -even endo ladies whose blood test results read high for cancer antigens which happen also to be endo markers too. I was a fast track case and there have been quite a few on this forum - so I was very aware that I was having surgery to look for ovarian cancer and yes it is disconcerting and it preoccupies your mind when you don't have much of an idea about either ovarian cancer or endo.

All things considered you have enough to worry about and occupy you researching endo, preparing for surgery or rather for the recovery afterwards - and all the options for treating it and managing your life ahead with endo. It's a vast topic in itself.

The more you know about endo, the better in control you will feel about what is happening to you and what your options will be, and you won't be flumoxed and confused by what the surgeons tell you and discuss with you.

There are plenty of websites about endometriosis, not just the basics but the more advanced academic ones.

Look up colorectal endo, retrovaginal or RV endo, Renal endo and then endo on each of the assorted organs in the pelvic area below your diaphragm. Your endo could be on any or all of them - you won't know till the surgeon has a look as not all endo causes noticeable irritation and pain but they can cause disruption to how your body functions and toilet trips and so on.

From your symptoms - it is likely you have fairly severe endo stage 2 there already.

The staging is about the type of endo not the extent. Stages 3 and 4 include ovarian cysts called endometriomas - if you don't have those then stage 2 is the max, but that that has no bearing on the spread of the endo, it could be deep in one place or you could be riddled with it in hundreds of locations.

Books like Endo for Dummies is often quoted on this forum as a good starting point. I haven't read it myself but you won't go too far wrong with that.

Order it at the local library to save a few pennies.

You could always opt to buy it after the op if endo is found.

sydneygec.com.au/your_healt... has plenty of illustrations

gynsurgery.org/topics/endom... is one of my fave websites - sometimews the writing turns a bit Dutch - but on the whole all the pages are really useful for endo information and pics.

gyndr.com/endometriosis.php is a briefer synopsis of endo

ncbi.nlm.nih.gov/pmc/articl... is a bit more academic but gives lots of statistics.

fitnessmagazine.com/health/... is an article in a magaine

danmartinmd.com/rvendo.htm on recto-vaginal endo and there are other pages on the various surgical options too

That is in no way an exhaustive list - just a handful of the many I have saved on my computer as interesting and worth reading.

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I can sympathise with you. Any stage of endo is painful and causes all sorts of problems, as you are very well aware as you seem to have severe endo. I agree with impatient, if they thought you had something sinister like cancer lurking in your body, you would have been made a priority and had your lap earlier.

It's hard not to worry and automatically think the worse. I can assure you that you will mentally feel so much better after you've had your lap, the worrying will stop.

There's not enough concern for people who suffer with endo, and yet in my mind it is kind of like a cancer as it grows in all sorts of places in your body and on various organs, It sticks your bowels and other organs together, it's horrible, I only became aware of how awful it was after the consultant came to see me in recovery and told me what they had to do. Even cutting it out and burning it doesn't necessarily get rid of it, apparently it comes back and grows on your scar tissue, none of this I was aware of until I'd read the posts on this site!!

It's a horrible disease, and very common, so don't worry, you're not alone and everyone on this forum is suffering together, but we're also here to help one another because we're the only ones that understand what each of us are going through. Xx

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