Well I have never posted anything on one of these forums before but recently I have been feeling so down and alone going through it all I thought it was worth talking about it all. I am only 17 years old and I have been suffering these with these chronic pelvic pain episodes for 3 years now. I have been back and forth to my local gp, who referred me to urology thinking it was to do with my bladder/kidneys which has been ruled out now. I have lost count as to the number of times I have had to go to A&E for pain relief. I suffer really bad periods and I always have done, I am always tired and feel like I have someone twisting my insides. The pain is always there, on good days it is just a dull ache but then when it gets bad I feel as if my insides are being twisted and pulled apart. I have no social life because of how ill I feel each day.. and I am in a very strong relationship but I find it difficult to be intimate as it causes me so much pain.
This week I was rushed back to hospital after yet another sudden attack on pain. They admitted me to gynaecology. I then had an internal examination, which was extremely painful, then they done internal ultrasound and found fluid around one of my ovaries which they told me could be a burst cyst. They reluctantly decided I do need to have a laparoscopy to look for endometriosis, which I know they are not keen to give me because of my age.. but the consultant that I had treated me like dirt on his shoe and I was in tears afterwards. He spoke down to me and was very patronising, he said "Do you really understand the risk, that we may puncture your gut and leave you with a colonoscopy bag and not even find anything to diagnose?" I felt utterly horrified that a doctor would even say that to a patient. I feel like because I am so young they all think I am over reacting to the pain, believe me I would not willing be having an operation if it was not necessary. Anyway sorry for my rant, but I have been listed for a laparoscopy which will hopefully be within the next 6 weeks, but really I am just wanting to hear about how other people felt when they were going through the process of getting a diagnosis because this is really emotionally effecting me and I feel like nobody really understands or is listening to me properly anymore.
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SusanGorman97
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hi...just hang in there and things will be resolved. Its really not so easy to do though when you're in the middle of all this emotional and physical pain and trying to distance yourself from it. Try to look at it as a time that has to be gone through, and it will be shitty, but within 6 weeks you'll have a concrete answer and hopefully what is causing you pain and distress will be gone.
Things that I have found helpful while waiting for a lap.... 1) Gentle yoga(i'd never done it before but found it great to calm the mind and stretch sore body bits (doyogawithme.com) all free, beginner'deep release of hips hamstring and lower back ' especially. 2) Talk, talk and keep on talking. Gather friends, family and loved ones and tell them all...fears, hopes, thoughts....( I forgot this part and ended up thinking i was going insane, not recommended or pretty!!) 3) start a journal and write/draw/scream... 4) keep moving...if your head gets niggly, get up and walk...anywhere, just to get your head out of the hole.
Hope you get seen quickly, and wishing you all the best
Hi I'm 32 and just had my 3rd lap. I was diagnosed with the endo 3 yrs ago and it's really horrible to go through especially if your going to the hospital and u feel like everybody is looking at you like your crazy. I had a partial hysterectomy about 6 yrs ago and when I started having the pain it felt like period cramps and I'm like I don't even have a period, why am I feeling this and luckily the doctor I had was awesome and he delivered all my kids and he suggested a laparoscopy after the ultrasound and found nothing on that. I know there's a lot of risk with surgery and you are young but it's better to do all the test you can so you can feel better and doctors don't look at you crazy anymore. But that's really messed up how that doctor talked to you like that just because your young, so what. I hear that all the time still and it's frustrating. I hope you got some relief from your pain by now and your doing a lot better. Good luck to you!
Yep, it doesn't get any better when you are older when the dr.'s treat you like you are stupid and wasting their time with your made up stories of pain. You are luckier then most in the fact that they ARE doing something so early. Just be prepared for the chances they are not going to find anything (because 10 to 1 they are not going to biopsy places) the first time, which has happened to me. It doesn't mean you don't have endo, it just means it was too tiny to be seen or your surgeon didn't know what to look for. Can you have a family member or best friend go with you to your appt's to help guard against unwanted doctor comments? Wishing you the best of luck and a firm diagnosis.
Oh you poor thing. I was diagnosed at 17 after years of pain and being treated appallingly.. The first time I had a consultant appt he didn't speak to me at all, did an internal then wrote to my GP saying 'this girl has painful periods'. I was 16 and couldn't move for 2 days each month.
Hang in there, hopefully the laproscopy will show something that is treatable. in the meantime exercise can really help as can some diet changes. You can also ring the helpline on the Endo UK page for support.
I was 15 when me and my mum went to the doctors about my severe pain, it helped that the gp was one I'd had all my life, but my mum being there helped a lot if anything she remembered everything he was saying as I was in a bit of shock. I'm having my 1st lap on Monday and I think it helps if you have someone there for you throughout all this. I know how hard it is to get people to believe how much pain you are in, before I was diagnosed I was in the medical room at school for three days straight as they didn't want to ring my mum and thought I was lying however once I had a name for it that helped a lot. The doctor said to me that cos of my age he'd put me on the pill and that it should go away after my first pregnancy, bearing in mind he told me this at 15 so quite a while before I had kids, after 3 years I'd had enough and went back to a different doctor who refered me to a specialist straight away. Don't listen to them when they say you're too young, they have absolutely no idea the pain you go through every day, just think of them as being completely oblivious to it all and believe that you know what's best for you, who cares about your age if it was anything else they wouldn't use your age as a reason not to help you so I don't see why they do with endo, bit of a rant but I hope this helps if only a little bit
that happened to me.. i was at my gp and he told me it was just bad periods and put me on the pill which helped for a while until the pains started to become more often and now I am in bed at least once a week with chronic pain My mum has supported me through all this and i honestly dont know what I would do without her, she told the doctors and nurses yesterday about how that doctor had spoke to me and they just shrugged their shoulders. I am thinking about writing a letter of complaint and trying to get a different doctor, but then that will slow down the process so maybe I should just suck it up and deal with the nasty doctor and hope he is a better doctor than he is socially?
Maybe you could say to him that you feel like he's talking down to you, would take a lot of guts I know but maybe if you say to him you don't like how he is talking to you and you know all the risks he might take it on board. Then again he might be a complete and utter ahole you just don't know really
I was only just 19 when I first went and they were the same to be, treated me like dirt constantly trying to trip me up as they kept repeating the same questions I felt this was to see if I would answer them the same. At the end of my first appointment she did eventually prescribe my painkiller (which done nothing) and told me to try have a baby that would fix it, anyway it was two years donevthe line before I goy offered my lap. As others have said keep talking, to others, to us, your family, definitely take a parent with you next time though for support and back up. Best of luck to you
I'm sorry to hear of your situation. I experienced pain when I was a teenager too but sadly didn't get diagnosed until I was 32. I'm 46 now and just had my 5th lap, although the pain is a lot less I can relate to how you are feeling emotionally. I spoke to a young man who is training to be a GP and he was interested in hearing my history. He was appalled to hear how I have been spoken to by some GPs and surgeons. The latest was "it only hurts because you are thinking about it" in relation to my being unable to cope with having a smear test (several people have tried over the past 2 years)
Find something to help you relax. Yoga as mentioned but also just yet meditation on its own. Reflexology, acupuncture or gentle exercise have all worked for me at different times.
My best advice though is to focus on a healty diet. It is hard to stick to eating the right food when you are struggling emotionally as well as physically but it is worth the effort.
I found the internal examinations agony, I was lying in tears whilst they done it and then curled up on the bed afterwards crying. I felt like they thought i was over reacting when i wasnt, I was in real agony! On my notes they put down "chronic pelvic pain, no other gynae symptoms" which made my blood boil because I had spoke to a student doctor for 30 minutes explaining to her how bad my periods are and how I get clots etc. and also pain during and after sex.. which is all obvious gynae issues but they never recorded any of the stuff I was telling them I feel like they just dont listen to me anymore.. like I am the girl who cried wolf
Hey keep calm...your not alone...im 31 and iv been all through it to. Docs dont understand the true pain of this. Can i ask if your in london? I have an amazing endo cinsultant.. took forever to get to her but was worth it. You could ask your doc to refer you to her if your local. They will always tell you worst case that can happen. Ive had 2lapos now and its been worth it. Good luck x
I am sadly in Edinburgh, this doctor that I am seeing is meant to be the best endo specialist in Scotland, which he may well be but sadly he lacks people skills x
Appalling behaviour from the doctor he should ashamed of himself I do wonder if it was his daughter or wife in your situation would he have wanted someone to speak to them in such a manner shame on him
I'm so sorry to hear you're in so much pain. Like everyone else I was disgusted to hear what they said to you and to hear how badly you were treated. I've also experienced the same level of 'lack of human understanding or feeling'. Sadly, you don't always get a better response when you are older. I was told to "stop crying like a baby" when I heard some - for me, life changing news.
I decided to get my lap done privately in London, as my local hospital never listened to my concerns, needs or anything. They just wanted to get me out and had the same approach. When I said they were being unprofessional I got the reply "welcome to the NHS".
I would recommend a lap if you can get one. If you can go private even better. Try to find someone good if you can. You know you're own body and how you feel better than anyone else in these hospitals etc. They are right, every operation comes with risks. However, as I've come to learn... if you open any packet of medication they had a huge list of "this may cause" and you could easily be convinced you'd get all of them. There are risks with everything - crossing the road etc. I was terrified, but after surgery myself "it's alright'. I hope you get better treatment. I think you or your parents could request surgery at another hospital that may be more "human". Please take care of yourself. You are not alone, and this site has given me so much hope and helpful advice. You're in right place Hugs x
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My mum has supported me through all this and i honestly dont know what I would do without her, she told the doctors and nurses yesterday about how that doctor had spoke to me and they just shrugged their shoulders. I am thinking about writing a letter of complaint and trying to get a different doctor, but then that will slow down the process so maybe I should just suck it up and deal with the nasty doctor and hope he is a better doctor than he is socially?
I'm so tired of it all :-( please help x
It's making everything so difficult!
Surgeon says endo is gone yet GP says it's not possible?! Feel so lost
new here, possible deep infiltrative endo, not confirmed yet
