Every since I have been struggling with Endo. I have had depression and panic attacks. Anyone else the same? Pls and thanks x

[Scolyn1]

[Cooka]

Yes i suffer both. I'm not sure what came first but there seems to be a common thread between the 2. I got my first panic attack 3 yrs ago and was only diagnosed last year with Endo. Being burdened by both has pretty much been catastrophic to my life and independence.

[Scolyn1 in reply to Cooka]

Thanks for your reply, I am sure that i get depression and panic attacks because of my hormones being so up and down- worse during period time and also worse in winter. x

[Cooka in reply to Scolyn1]

I haven't tried the pill because I'm very sensitive to side effects... but I want to ask all the ladies out there who have been put on the pill has it helped stop panic attacks and depression? (assuming that the anxiety and depression is caused by unbalanced hormones - and the pill is supposed to regulates the hormones)

[DrWatson]

It seems to be very common to suffer from anxiety and/or depression as well as endo. I have had anxiety on and off for years, well before I was diagnosed with endo last year. I think hormone changes really affect me and can trigger my anxiety - once I start it's really hard to pull myself out. What I really want is to be able to deal with someone who really understands in the medical area - my GPs are not great, I can see a counsellor but they don't really get endo and my consultant is focused on surgery or treatment. It's easy to feel isolated and that no one understands. Or that you'll feel ill when you're out and about (which is one of my thoughts). So don't feel alone - it's not nice but try and get help if you can. I find yoga calming - while I do it at least!

[Scolyn1 in reply to DrWatson]

Yes i see a pattern- when on my period - anxiety and depression is worse. I have learnt really well to deal with it because my family also suffer from both- I try to be positive about everything. I am very paranoid of feeling unwell while im at uni/work - this makes me panic and its a big vicious cycle for me. Thanks for your reply x

[wp22]

Me to. Ever since I was diagnosed around 3 years ago I have panic attacks and severe depression. My whole worlds has fallen apart and no one I know understands how bad I am, except for you guys x

[lauramw]

Hi, I can really sympathise with this. Too often medical professionals concentrate on the physical symptoms of Endo and completely disregard the emotional side. Looking back I was very depressed and anxious in my teens. I hadn't been diagnosed; my parents just thought I was being difficult. Now I know it was the hormone imbalances that come with Endo making me miserable. Then of course you've got the pain and fatigue to deal with day in day out. Who wouldn't get anxious and depressed? You wouldn't be 'normal' if you didn't. I'm 43 now and every day is a challenge but I have learnt to cope through diet, exercise and CBT. Diet is so important. It's tough but try to stay off foods and drinks that will add to your anxiety: caffeine, alcohol etc. it's important to keep your liver in good health as this is responsible for getting rid of the oestrogen, the hormone that we have too much of as Endo sufferers. Take care of yourself and be kind to yourself. It sounds like a cliche but no none else will! One thing I will say is that in all my years of laparoscopies, hormone treatments, heavy pain medications etc, the single most helpful thing was when I took control of my diet. It had more impact than any of the treatments on offer. I would not tell anyone not to follow medical advice but if I had known at the outset how it would be I wouldn't have done any of it. Of course we're all different and you have to do what's right for you, but in my experience awareness amongst GPs and even consultants seems to be so sporadic you will get a different opinion wherever you go. Do what's right for you. Sorry to waffle on, but I would so like to save others from the suffering! All the best to you. Things are changing slowly so fingers crossed future generations will have a chance that I and others like me never had and be able to live a relatively normal life

[Scooteeder]

Hi,

Hmm! I can identify with this... but NOT in the way you might think!

I have Endo (finally diagnosed in 2011 after YEARS of pain and suffering). My first really noticeable symptoms were @ 2002. I had heavy, painful and irregular periods, with clots and flooding. Also bowel problems, cramping, chronic pelvic and lower back pain all the time, bloating, nausea... I just felt REALLY ILL and REALLY LETHARGIC all the time!

Unfortunately (for me) I have a history of other health problems, including Asthma and Chronic Sinus Infections, which I had been experiencing for years. I started to notice that these got worse around my periods, and that I felt increasingly "run down". Sadly, my G.P. did that old "watch and wait" thing, and I did not get referred to a Gynae until 2006 (by then, in intense pain).

Now, I firmly believe that EVERY patient a Doctor sees should be treated as an INDIVIDUAL. Unfortunately, in reality, I DO NOT THINK THIS HAPPENS. I went to my Gynae explaining my long list of symptoms, and my inability to conceive... I got absolutely NO sympathy or understanding at all. And here started what I can only describe as the biggest period of misery in my life! The Gynae asked about my symptoms, and my family history - he then decided my problems and inability to conceive were all "ANXIETY"! This fascinates me... because I had told him I have a parent with BI Polar Disorder. I firmly believe that my Gynae fobbed me off as "crackers" because I told him I have a family history of depression and mental illness (mum, aunt, great aunt). From that day onwards I did not receive one scrap of care or treatment from that Gynae (who then mis-diagnosed me with Polycystic Ovaries, but failed even to treat this!), and in 2010 I demanded a second opinion in desperation. Strange how the lap I had in 2011, following the second opinion, immediately showed and confirmed Endo (which I reckon I'd had all along)!

In the meantime, I was getting pretty much NO support at all from medical professionals. My G.P. Surgery was also useless, partly because you never got to see the same Doctor, and partly because none of the Doctors seemed to have a clue! I was told I had "IBS", that it was "dietary", that it was "stress", that it was "in my head", that I just had "normal period pain" and that I was a "poor coper"! All of this had a knock-on effect, as I had no idea what to tell family and friends, let alone my employer. I just felt permanently ill, and permanently confused as to what was going on. AND REALLY BADLY LET DOWN.

I was bullied mercilessly at work from 2006 to 2009, when I realised I just could NOT cope any more (I even handed in my resignation on a NUMBER of occasions - my employer refused to accept it!). I was put on report for time off sick, threatened with disciplinaries, told I had to attend medical appointments outside work time (which was IMPOSSIBLE as it was 9-5). My boss would ring me at home when I was off sick, and once even recovering from surgery, to ask when I would be back in work. He would "remind" me that my workload was getting heavier and that I was "letting the team down"! When I was in work, nobody asked how I was, or even commented on the fact that some days I was throwing up in the toilet, and then back at my desk! I even fainted once on the way back from my car - but continued the rest of the day in work! Another day, a female manager sent me home from work because I had a violently upset stomach and heavy periods... she put me on report as soon as I was well enough to return! Oh, and what's more - my employer communicated with my G.P. WITHOUT MY PERMISSION. I reckon THEY knew my diagnosis before I did! (I've since seen the letters in my medical notes).

I think somewhere along the line, I was just so confused, worn out and "hormonal" that I began to accept that I must BE "nuts". I even tried Counselling!! My employer treated me like I was "nuts" and so did my G.P. and my original Gynae. I began to believe that I was just making a fuss over "normal period pain" and started to wonder if I was just being a "wimp". Some days, I felt so stressed out over everything that was going on - everybody's utter lack of understanding - that I could just have stayed at home and cried!

IT'S A MILLION TIMES WORSE IF YOU HAVE A FAMILY MEMBER WITH MENTAL ILLNESS - because -

1. Doctors seem to think they are justified in saying all your symptoms (even PHYSICAL ones) are mental!

2. You start to question yourself (if it's in the family, then maybe all the family, including YOU are "nuts").

3. You have NO family support, because you cannot tell your mentally ill family member anything, for fear of upsetting them.

4. People around you jump to conclusions (for example, if you are crying in pain, they assume you are moody and "depressed").

Personally, I do believe that Endo can be linked with mood swings and depression, as well as anxiety. BUT NOT IN THE WAY MOST PEOPLE MIGHT THINK. Too many people equate stress, anxiety and depression with real "madness" - THEY ARE SO NOT!

What people with Endo are experiencing are natural reactions. Altered hormone levels may cause altered moods (our hormones are very finely balanced, so anything affecting them can make us feel truly rotten). We also live almost constantly with pain, fatigue, bloating, and all sorts of other horrible symptoms that get in the way of our lives, stop us doing things we wish to do, and make us feel genuinely ill. It is WELL KNOWN that people living with CHRONIC ILLNESS and pain can become anxious or depressed, as the long term illness affects their quality of life. On top of this, many women with Endo have fertility problems - which I can assure you PERSONALLY are a huge source of misery and depression. HOW CAN YOU NOT FEEL ANXIOUS AND DEPRESSED WHEN YOU DO NOT KNOW WHAT IS GOING ON WITH YOUR OWN BODY, OR WHAT WILL EVER STOP IT?

The other reason I believe so many women with Endo feel anxious and depressed is because NOBODY LISTENS TO THEIR EMOTIONAL TROUBLES. Most of us just have to "get on with life"... despite pain, despite surgery, despite medication and side-effects, despite infertility... we still have to try to hold down work, or run a household, or study, or bring up kids. Things that fit and healthy people TAKE FOR GRANTED but that are NOT EASY FOR US. We have to live life with bodies that don't always do what we want them to!

And WHO listens to our problems over that? Who helps us cope with infertility, or endless pain? Or weight gain? Or bowel perforation? Or loss of libido? Or multiple visits to A&E in agony? Or endless laparoscopies, only to see the Endo return each time? Or any of the hundreds of other unpleasant things that women with Endo go through? NOT physically; but EMOTIONALLY? Who listens to our fears? Our worry about marriage breakdown due to infertility? Our fear of being unable to work full time (or even at all)? Our upset at missing college or university due to symptoms? Our worry that we won't find a boyfriend or husband who understands? Our isolation when we see our female friends raising their families, and showing off baby photos? WHO HELPS EMOTIONALLY? Let's be REALLY HONEST, here... in my experience NOBODY DOES.

THAT is why I believe so many women with Endo feel anxious, stressed and depressed. NOT because any of us are "going nuts"... but because we have to cope, often alone, with a whole load of emotionally charged events, and really big (sometimes life changing) decisions. Do any of us grow up thinking that we may need IVF? Or thinking that we may have to choose between our fertility, and pain control? Do any of us grow up thinking that we may spend the best years of our lives - the ones where we are supposed to have a career and family - in pain, tired, and having endless medical treatments? I DOUBT IT!

We got a "bum deal" (excuse my French!)... we are living our lives with an "intruder"... Endo. IT comes along for the ride; and it is NOT an easy passenger! Endo does NOT just cause physical symptoms, it also takes a terrible emotional toll. This is something that Endo Specialists and medical professionals in general NEED to be more aware of. They need to treat us sensitively - HOLISTICALLY. We are human; both physical and emotional beings. ANY TREATMENT FOR ENDO NEEDS TO ADDRESS BOTH!

Sorry if this came across as a "rant" - just got out of Hospital after yet another Lap! I just really wish that Doctors (who are supposed to have training!) could understand that the physical affects the emotional, and vice-versa. You CANNOT treat one, without the other.

Apologies for "venting"... but I do wonder how many of you may actually identify with this. Whatever... I really DO wish you all the very best. Living with Endo is NOT easy, and you should NEVER feel guilty or a failure for being upset, unhappy, miserable, stressed... these feelings are NATURAL. You are responding to a tricky situation (and possibly unbalanced hormones). I'm sending you a huge HUG via the e-mail!

Take care of yourself,

Elaine Ellis.

P.S. For more info, try reading...

Hormone imbalance - hormonalharmony.co.uk/why-you-may-be-oestrogen-dominant

Endo and Emotions - womens-health.co.uk/endomet...

I really DO hope something here helps. You could try Counselling, but only if you think it's for you... and SUSS OUT A REPUTABLE COUNSELLOR...

bacp.co.uk/seeking_therapis...

[daffodil in reply to Scooteeder]

So well said -thanks,Elaine.How was your lap this time?

[Scooteeder in reply to daffodil]

Hi daffodil,

The lap this time was... dare I say it... VILE! No fault of the hospital - just a really nasty reaction to the anaesthetic (boy, was I ever ill!!), so bad I managed to freak the Nurses out. I've just posted a question about the lap, as they did a biopsy this time due to "unidentified" tissue. So, not only have they confirmed that they found Endo again... they also found something extra!