Does anyone ever feel like a hypochondriac? Like people don't believe how ill you feel?

[angiechick78]

I feel like I get up every day feeling poorly. And when my partner or kids and family ask how I'm feeling I do nothing but say "I don't feel great". I would love to have 1 day where I get up and feel....normal! I'd settle for that. Feeling great or fantastic would be amazing. Until I was diagnosed with endo (which in my head I have known I've had for years) I just felt like I was moaning all the time but not really having a valid reason as to why I felt ill. So sick of feeling like this am I on my own feeling like this?

[housebythesea]

I certainly don't think you are on your own. I have felt like this for a long time, not helped by the attitude of certain professionals I have encountered along the way.

Let me give you my worst example

I had to speak to the Occupational Health physician at the place where I worked. This was immediately following this sequence of events :

Months of severe pelvic pain. Laparoscopy found extensive endo, ovary in torsion, adherent to pelvic wall. Attempts to free it unsuccessful, scheduled for further open surgery

Salpingo-oophorectomy by laparotomy. Extensive endo and adhesions found. Ovary dissected out with remnant left in situ.

Readmitted shortly afterwards, collapsed with peritonitis and pelvic abscess. Spent another month in hospital with horrendous spiking fevers and IV antibiotics

Post op assessment - pain worse than ever, very extensive adhesions throughout pelvis, intractable pain (all of which would necessitate 7 further surgeries over the next few years, bowel repair, etc, 2 years on zoladex, complete loss of fertility etc....

And do you know what the Occupational health physician said to me?

''I believe you have been having some trouble with your periods.........''

He made me feel like some stupid, irrational woman, complaining about something that was a natural bodily function, and I have found that this is the attitude that seems to prevail in certain quarters. You have ''women's troubles'' and it's probably all in your head.

So no. You are not on your own.

[Ugne in reply to housebythesea]

How are you feeling now, housebythesea? I hope things are bit better now, just wanted to check with you because you went through so much, to which i can personally relate.

All the best,

Ugne

[angiechick78]

I actually lost my job because of having time off with what was perceived as "woman's problems". This was even after my mother (who worked for the same people and suffered herself 20 years ago, resulting in full hysterectomy/oophrectomy) explained what was wrong with me. And as I hadn't been diagnosed at that point I felt like I didn't have a leg to stand on in opposing my dismissal. Thankfully I had a self employed job (slimming world consultant) but it doesn't make up for my lost earnings and my members are great. If I'm in pIn they understand why. Which is comforting. But I do feel like they sometimes look at me as if to say "you're still ill" or "you're ill again?"

I'm on cerazette and it's making me feel awful. My consultant wanted to give me the mirena coil. Which I said no to as I'd had one for 7 years and still been in pain. And had it removed due to what they thought at the time was PID. My mother suffered horrendously on the zoladex injections and I have suffered in the past with depression which I ended up in hospital with so I'm really reluctant to have treatments that may cause depression as I have a young family and do not want to put them through that hell again.

Hate hate hate feeling like this

[Chrissie66]

I was diagnosed with endo 21 years ago, have had quite a few surgeries, several courses of Zoladex, and I have 6 monthly gynae appointments with internal scans to make sure there are no cysts forming on my remaining ovary so that we can stop them in their tracks before they really start. I take my mother with me to some of these appointments, she actually comes into the scan room with me, and then into the gynae appointment so that she can a) hear and see what's going on and b) ask questions, because my gynae is LOVELY. She's told me that mine is the worst case of endo she's ever seen, and she knows that my mum doesn't understand why I can't "just have a hysterectomy and get it over with" so she takes the time to try and explain what's going on.

I am ovulating at the moment. Yesterday started with a banging headache and then turned into non-stop violent vomiting because of the pain which went on for most of last night, I've just dragged myself out of bed to get a cup of tea. Mum went to a carol concert thing in London yesterday so I phoned her to ask her how it was. She told me all about it, and then asked whether I had put my tree up as planned. When I had explained that the tree is still in its box because I had spent the day in bed her response was "What, AGAIN? You should have got out into the fresh air....."

She's lived through this with me since 1992. She knows what's causing it, and what horror it causes because the gynae has told her. But she STILL takes my husband aside and tells him that he needs to Make Me Get Out More To Take My Mind Off It....

Her neighbours on both sides have cancer. I am not in any way comparing endo to cancer because that's just wrong. there is obviously absolutely no comparison. But - and again I am trying to say this sensitively - my 'good' days are sometimes not as good as their 'bad' days. Yet she is round there making their dinner for them and generally fussing. And I don't begrudge them that at all - in many ways, much as I love her, they are welcome to her - but I guarantee that she has never, ever told them that getting out into the fresh air will make them feel better...

Until there is better awareness of endo and just how wretched it can be it will be thus. At the end of the day, endo won't kill us. But it'll make sure it wrecks our lives. And people who have never actually lived through it, first or second hand (my husband is a gem) will never, ever understand it.

[angiechick78]

Oh lovely that's horrendous. I understand how you feel. Even though my symptoms seem mild compared to yours it is no comfort when loved ones just expect us to "pick ourselves up" and "get on with it. My partner is good although he doesn't really understand everything that I feel. He really is just getting to understand everything that goes with endo. My mum really is the only person that understands in my family just how I feel.

[Bez76]

oh I completely understand too. I have just been feeling and thinking exactly the same thing. I constantly feel ill in some form or another and can't remember a day when I woke up feeling well. I have started to say to people at work to assume I feel unwell unless told otherwise, as I just sick of explaining to people who don't understand and have that awkwardness when they don't know what to say. My boyfriend and my family are great, but again they can't possibly understand. I only got diagnosed with endo last year but have had years of going backwards and forwards to the doctors and just being fobbed off with various things including IBS. I had 4 weeks off work last year recovering from my lap, since then I have spent the last year with two very painful anal fissures, had tonsillitis three times, had three weeks off work due to full blown flu, then I start to get better and my endo symptoms flare back up again. Leg pain, lower back pain, stabbing pains in my bum, shivers down my legs, groin and pelvic pain and to top it off I had to go in hospital last week for a flexible sigmoidoscopy and botox on the fissures and piles (thank god they said my bowel was healthy) but I am surprised, as I have problems since I was young but he did say that my pelvic ultrasound showed some type of cyst but I am non the wiser on that one. I do look and feel permanently unwell and just want to have a day when I can truthfully say "I am very well thank you".

So completely understand how you feel and empathise very much! xxx

[angiechick78]

Bless you. It's just horrible isn't it. Roll on the day all endo/adeno sufferers can say "I feel great thanks." And mean it xxx

[Bez76]

Oh yes it is really horrible and hear hear to that. It would be such a nice feeling to feel great and to mean it when people ask! I really hope you feel better too xx

[amber505]

For me, I find it really hard when people ask me if I'm 'better' now, like it's going to go away. I work with all women and I know they don't all understand what's wrong with me so they probably just think I'm being pathetic when I'm in pain again.

I even struggled explaining how I felt to my GP since they only found a small amount of endo at my lap, she made me feel like I couldn't possibly be in that much pain.

It's good to know that there are plenty of women out there who feel like this. You're not alone!

[angiechick78]

My GP was the same. Sat there like a dummy whilst I explained to her what the consultant said and why I needed something stronger than over the counter paracetamol. Women that do know what endo is unless having suffered themselves can't really understand what it's like. And those that don't will never understand unless heaven forbid they fall victim to this horrible illness themselves xx

[LadyPenelope]

You're not on your own at all. You're in very good company. I've been called a hypochondriac so many times, it's like water off a ducks back. I've gotten to the point where I don't care anymore what people (including friends and family) have to say about my condition. There's no point on explaining anymore. I'm sure many people feel I'm a moaner and a complainer, always saying I feel unwell, but I don't care. I'm simply tired....

[Rachel00207]

Yes, I've had this every morning of late. The only thing really to do is try to anticipate it without dreading that feeling; it's a difficult balance to get, between being optimistic and not being rash about the whole pain thing. Obviously, it's not great to get your hopes up too much, but equally there are so many things to look forward to in the day! Like seeing your beautiful, supportive family. My boss has a chronic condition which is worse than endo in terms of pain. And yet, every day I show up at work, she is smiling. She says it took her years to get to that point, but basically she thinks, if you can 'fake a smile' then others around you are happier, so then you will also feel happier. It's a knock-on-effect thing. I am still learning - 100% a beginner with this. But as my boss has it covered so well, that's something I can aspire to. Remember you're never alone - there are thousands of women out there going through the same/similar struggle. You got this! Stay strong.

[Purple500]

Am starting to feel that way now, am on paracetomol and panadol for severe pain in pelvis, woke up this morning shaking, freezing cold, severe nausea, was determined not to have to make a visit to the GP., so you are not alone., the clots are smaller now, but the bleeding continues, good luck.

[Hidden]

Nope. You're not alone. It takes over your whole life, isolates you from friends and family and you're left fighting something that nobody else can see or feel or understand, doctors included!

It's tiring and like you would just settle for OK. Tired of walking like an 80 year old and sitting on my hot water bottle wherever i sit. I even have a yuyu bottle that i wrap around my waist so i can do housework whilst still getting some pain relief. Can't wear jeans or anything nice anymore. Everything just seems to aggravate it and it seems to be in control now.

Wishing you some relief and peace!

M x