Feeling illegitimate

[pinkpunkp]

So I've just stopped hysterically crying and laughing after my brother told me he thinks I'm just a hypochondriac, which he meant in the way that I don't actually have anything wrong with me & I just think I do but to me hypochondria is probably accurate because it means anxiety about your health & I definitely have that since endo effects every aspect of my being these days. He said that womens' problems are always made out to be bad but he doesn't think it can be that bad. I'm so sick of having to justify & legitimise myself to people because they think I'm making up being in so much pain, if I had a more visible illness or something that was life threatening I'm sure I'd be taken more seriously but apparently something chronic & life limiting isn't enough to be deemed "unwell".

Sorry for the rant, just really needed to get that off of my chest as I experience it regularly from some family members & it really gets me down. It's horrible having someone doubt you when you know you're struggling every day.

[AleissW93]

Hi! I'm sorry you're having to go through this! Fortunately my family and partner are very understanding of what I'm going through. Unfortunately however, it seems to be male gynaecologists who are demeaning and act like I'm a hypochondriac. Have you happened to experience this as well?

I've had two female gynae, both of which took me seriously, listened and tried to help, before I got passed on to male gynaes, who made me feel totally irrelevant, and the one I had in my appointment yesterday even laughed at me!

I'm struggling every day as well. How do you cope with it?

[pinkpunkp in reply to AleissW93]

I'm sorry you've had such bad experiences with doctors. My first appointment was with a male consultant gynae & he was kind of understanding because well he examined me & stuff & sent me for an MRI but he soon passed me off to his juniors when he deemed me not severe enough to be worthy of his time, fortunately the junior that I saw at my last appointment was the best gynae I've seen so far. She was so keen to listen to what & I had to say & was so understanding, she even explained to me that my MRI showed patches of endo in my bowel & bladder (which no one had explained when I first got the results) & referred me to gastroenterology to discuss my bowel symptoms (though my appointment is with a nurse for that so I'm not sure what it will achieve) & she has also referred me to the pain management team. I'm just hoping that I can get some kind of help/support out of it all but that remains to be seen.

I don't even know how I cope day to day, probably loads of distraction with watching a lot of YouTube & reading lots of stuff. I'm not very active at all, I'm not usually anyway but now even the thought of doing anything strenuous makes me feel sore. How do you manage things?

[AleissW93 in reply to pinkpunkp]

I'm so glad you got a decent gynae and things seem to be moving in that respect!

Honestly, not very well at the moment. I've gone 8 years with pain, awful periods and everything in between and no diagnosis..

When I was 16 I was referred to gynae, when my gp thought I had endo. Had a lap' and they found nothing. The male gynae didn't even look me in the eye in the post op, threw a page full of pictures of my ovaries at me and said nothings wrong, and that was it.

So its become a repeat cycle of trying to deal with it for a year, gradually getting worse, and going back. I've been tried on alsorts and still no firm diagnosis, but this time my ultrasound revealed I have pelvic congestion syndrome and several cysts on both ovaries. So they're thinking endo and endo cysts, and wanting to put me on zoladex for 6 months (temp menopause) use that as a diagnostic and then do surgery. But tbh I'd rather just go for surgery.

Its affected my day to day dramatically, as you say, anything strenuous leaves me in pain and exhausted. I keep having bouts of extremely severe pain, which we think is a rupturing cyst, and no exaggeration it's debilitating.

I'm usually one to try and be positive no matter what and just crack on but its becoming harder and harder and I find myself feeling quite hopeless. I game and read, but it doesn't help. Honestly, my partner is the only thing in my life keeping me sane, but he can only understand what I'm feeling to an extent.

I've been hoping to find people in similar situations. My go to, is pain killers (which just knock me out rather than hit pain), hot water bottles, i;ve found that lying down and elevating my legs goes some way to relieve some pressure from my hips, and sometimes baths.

[pinkpunkp]

I know, it's still upsetting though.

[avelvetcrowbar]

Jesus Christ. That's cruel, even coming from a guy who doesn't have the foggiest about menstrual related pain and diseases. I know how upsetting it can be to have someone close to you make you feel invalid. I have it a lot with my mum and a few other people around me who seem to think I'm over exaggerating with my endo pain around and other issues. Honestly, the pain I experience due to Endometriosis has been one of the worst pains I've ever had and that says a lot. I'd rather break my leg again all day everyday than know I'm going to have to suffer even an hour of pelvic pain. People on the outside just have absolutely no idea because that level of pain and suffering is totally beyond their comprehension. I don't know if you've ever seen it but there's a short video on the net where it's a couple guys having the pain of a normal menstrual period simulated, it's so bad that one of them is having to have gas and air and breathe through it and they're all crying out in pain. That's a NORMAL period. Now imagine if they had to experience all the debilitating symptoms of endo that aren't just horrendous pelvic pain but so much more as I'm sure you know! I know it's super hard not to get made to feel like your pain is invalid or that you're hyping it up to be more than it is. You're not. It's 100% valid. A recent research has shown that endo pain is the equivalent pain of a heart attack? Bet your brother didn't know that eh!

You're a badass for living with endo. You really are. Don't let anyone make you feel you're anything less.

Always here for a chat!

Jordan

x

[sarah761]

So sorry you have to deal with that, it's hard enough without people doubting you. A lot of women in my family have endo so they are understanding.

Male GPs and gynaecologists that I've seen have been awful though. The last gynae actually said "what do you expect me to do about that?" when I explained my symptoms! And then said it's just something women have to put up with!

I swear if men suffered with it they would have found a cure by now 🙈 x

[Heloo85]

My Gynae is clearly on the psychopathic spectrum, without a doubt. More clinical than empathetical! But in saying that hes never treated me like you guys have been treated by yours! He was a bit blah before surgery, umming and arring, i was first seen by his junior, then him, then a colorectal, now i only see him at all follow-ups since my surgery. I still feel him slightly cold, but he does try to get it! I just think what youre finding is that consultants, surgeons, are actually cold. I dont think they mean to be unsympathetic but it comes with the job! 40% of laps are performed on women with no endo. If they operated on everyone who suspected endo, that would be much higher. I guess, they try not to get involved on an emotional level, and tbh i think if i had their job, i would too!

[Rosy42]

I'm sorry to hear that too - you hope that the people you are close to can be supportive but its sadly not always the case. I find I am having to constantly justify myself and my pain/tiredness to friends and family, who can't get their head around why I'm not better yet, or why I'm making a fuss when I look absolutely fine and was coping last week but not this week.

I often get people suggesting that I shouldn't take so much pain medication too, as if I'm somehow choosing to be on heavy drugs all day!

Pain is such a weird thing to deal with on a day to day basis - I end up doubting myself that I'm making it worse somehow or its all in my head - especially when you get people saying stuff like that to you! Stay positive! x

[GrittyReads]

I can't suggest anything for the empathy-free medics and gynaes that you all have to put up with! You would think they would know better, as they have at least seen the abdominal cavities of women whose insides are 'stuck together' with endo!!

However, for the ordinary men (and women) in our lives, who do not understand and are unsympathetic - if not cruel - I suggest searching the 'Endo UK' site, as well as the US 'Endo Site'. Somewhere .... on one of them (I wish I'd noted the link), there is a film of the abdominal cavity of a woman with severe endo. Gynaes are examining, probing, pointing out the organs etc, and there is detail of the different types of Endo being recognised on the surface of various organs. It's not pleasant to watch, but it is realistic, accurate and sadly, all too typical.

My other half is very 'tickle-stomached' and had to walk away, when I called him to look when I'd found it. Luckily, I'm now post-menopause, and all seems to be okay: plus he was always fairly supportive, though I had made him read some of the more visceral descriptions. But I would definitely try the film on your brother, etc. I'll try to find it ...

Meanwhile, take care of yourself, treat yourself, and remember: you are a wonderful strong women, with wit and resources. Don't let them get to you - there is always support on here!